My Stem Cell Transplant Journey

My Stem Cell Transplant Journey

A Basic Guide Created to assist you throughout this Endeavor

4301 West Markham Street, #508 Little Rock, Arkansas 72205 cancer.uams.edu

My Stem Cell Transplant Journey A Basic Guide Created to assist you throughout this Endeavor

Table of Contents I.

Welcome: Maps, Parking, & Visitor Information

II.

Transplant Team Clinic & Contact Information

III.

My Chart – How to Access Your Medical Record

IV.

Lab and X-ray Tests

V.

Bone Marrow Procedures VI.

VII.

Treatment Options

Diagnosis : The Basics

a. Chemotherapy Basics & Side Effects b. Stem Cell Collection (Apheresis) Basics c. Stem Cell and Bone Marrow Transplants Basics VIII.

Support Services a. b. c. d. e. f.

IX.

Patient Guide to the Cancer Institute Supportive Care Resources & Care Partner Tips Financial Resources (LLS) Patient Centered Care Information Behavioral Medicine Family Home & Cancer Support Center Allogeneic Stem Cell Transplant

a. What I Can Expect from start to finish X.

Autologous Stem Cell Transplant a. What I Can Expect from start to finish

XI.

Basic Care Tips & Guidelines a. Patient Education Classes b. Line Care c. Mouth care, Nutrition & Food Safety d. Stress Management & Insomnia XII.

Palliative Care Team &

XIII.

Pharmacy Services – My

Advanced Directives

Medication List XIV. Glossary (Commonly Used Terms) XV.

My Treatment Journal 2

Welcome to the Winthrop P. Rockefeller Cancer Institute!

We are pleased to welcome you to the Winthrop P. Rockefeller Cancer Institute at the University of Arkansas for Medical Sciences (UAMS). We partner with the Myeloma Institute to provide cutting edge technology and resources to provide research-based cancer care for you and your family.

Here at the Cancer Institute, we offer an interdisciplinary team approach that works with you and your family with the mission to provide high-quality, innovative, patient and family – centered health care while offering specialty expertise not routinely available in community settings.

My Stem Cell Transplant Journey: A Basic Guide Created to assist you throughout this Endeavor was designed to provide information to help you as you progress through your course of treatment here at UAMS. We suggest that you keep it with you so that you can refer to it and add notes, test results, and other information to it throughout this journey.

We welcome each patient to the Cancer Institute as a unique individual. Therefore your treatment and care will be personalized as well. My Stem Cell Transplant Journey Guide is not intended to replace communication and/ or explanations from our physicians, nurses, or other health care personnel.

We are here to assist you in any way that we can. Feel free to contact us whenever you have questions or concerns.

Below are some key phone numbers that you may need: Medical Oncology Intake Office •

New Patients

•

First Time Appointments

(501) 296-1200

(501) 686-8530 Medical Oncology Clinic (MONC) •

Established Patients

• Return to Clinic Appointments After Hours & Weekends

(501) 686-5000 (Ask for Medical Oncologist or Allo Transplant MD/APN on call)

Infusion 4 4th floor, Cancer Institute

(501) 686-8220 (7:00 am to 7:00 pm CST, every day except holidays; 8:00 am to 4:30 pm CST holidays)

Inpatient Transplant Unit 7th Floor, Main Hospital

(501) 526-0740 – E7H (24 hours a day/every day)

Inpatient Medical Oncology Unit 7th Floor, Main Hospital

(501) 526-3700 – H7 (24 hours a day/every day)

3

The Winthrop P. Rockefeller Cancer Institute and the Team Approach A unique feature of patient care at the Cancer Institute is the team approach to patient care. A multidisciplinary health care team, specially trained in diagnosis and treatment of all aspects for various hematological malignancies, nonmalignant acquired bone marrow disorders, genetic diseases that are associated with abnormal hematopoiesis and function, bleeding disorders, bone marrow transplantation, sickle cell anemia, and solid tumors. Patients benefit from the combined expertise contributed by a comprehensive array of specialists that meet weekly to discuss patient care plans and optimal treatment options.

The Winthrop P. Rockefeller Cancer Institute is a center of excellence at UAMS, now providing the only Adult Allogeneic Stem Cell Transplant program. The Cancer Institute is Arkansas' premier cancer research and treatment facility. The Cancer Institute staff of physicians, nurses, researchers and other health care professionals are dedicated to improving the health of all cancer patients, both from Arkansas and beyond.

The Cancer Institute offers comprehensive medical treatment driven by state-of-the-art research to patients from every Arkansas county, all 50 states and about 40 foreign countries The Cancer Institute directs all cancer research for UAMS and its affiliated institutions. Cancer Institute scientists are committed to reducing cancer incidence, mortality and morbidity in Arkansas and the surrounding region.

The Cancer Institute’s approach is simple -- discovery in our labs, development of new treatment strategies and delivery of these new strategies to our clinics. Cancer Institute research moves from the laboratory bench to our patient's bedside. The bottom line for our patients is that our research fuels innovative treatment options.

The Cancer Institute and the Myeloma Institute have made and continue to uncover scientific advances that translate into therapy: • • • • • • • •

Only Adult Allogeneic Stem Cell Transplant team in Arkansas Only Adult Sickle Cell Clinic in Arkansas First bone marrow transplant in Arkansas First to initiate use of tandem stem cell transplants First outpatient stem cell transplant (autologous) First stem cell transplant for patients over the age of 70 Initiation of idiotype and dendritic cell vaccines Creation of stem cell purification process

Welcome to Infusion 4 The staff in Infusion 4 will be 4

administering your chemotherapy when necessary and will help you recover after your stem cell transplant or hospitalization. We want your experience here to be as pleasant as possible for you and your family. There are several things that you need to know that will help you during your stay with us.

1. Please arrive at your appointment time, unless you are ill. If you are ill or have a fever (greater than 101), please call (501) 686-8220 and select Option #5 as early as 7:00a.m. and let us know so you can come in to see us earlier.

2. Always be sure the nurse has given you appointments and that you check out at the front desk to confirm you have an appointment for the next day.

3. If you have been waiting longer than 30 minutes after you check in, please check with the front desk to be sure your paperwork has been received.

4. Your Advanced Practice Registered Nurse (APRN), Tammie Brockington, will see you every other day or as needed based on your illness and recovery. Please be sure to ask your APRN for any refills or medications that you may need while you are a patient in Infusion 4.

5. It is imperative that you and a family member/caregiver attend a CVL class as soon as possible.

This class is necessary to help you learn about your line, flush and care for your line, and use home infusers should they be needed to deliver antibiotics and electrolyte replacements.

6. If you have questions about your care or treatments, please let someone at the front desk know when you check in that you would like to speak to the triage nurse or your APRN. They will call Tammie or set you up in the triage area.

Our staff is committed to helping you through your treatment and recovery. Please do not hesitate to ask if you are unsure about any process.

Thank you, Infusion 4 Staff

This page was intentionally left blank

5

University of Arkansas for Medical Sciences

WINTHROP P. R OCKEFELLER CANCERINSTITUTE

MAP

Directions to UAMS Winthrop P. Rockefeller Cancer Institute •Take I-530 north toward Little

From East of Little Rock

•Take I-40 West to I-30 West •Merge onto I-30 West (Exit 153B) toward Little Rock

•Take Exit 139B onto I-630 West •Take Exit 3B (Pine/Cedar Streets) and turn right onto S. Pine Street

•See box below for parking

Rock

•Take Exit 138A to merge onto I30 East toward downtown

•Take Exit 139B onto I-630 West •Take Exit 3B (Pine/Cedar Streets) and turn right onto S. Pine Street

•See box below for parking

directions.

From Southwest of Little Rock

•Take I-30 East toward Little Rock •Take Exit 129 to I-430 North toward Fort Smith

•Take Exit 6 onto I-630 East toward downtown Little Rock

From Little Rock National Airport

•Take I-440 West toward Little Rock

•Take Exit 138A to merge onto I30 East toward downtown

directions.

From Northwest of Little Rock

•Take I-40 south toward Little Rock •Take Exit 147 to I-430 South toward Texarkana

•Take Exit 139B onto I-630 West •Take Exit 3B (Pine/Cedar Streets) and turn right onto S. Pine Street

•See box below for parking directions.

•Take Exit 6 onto I-630 East

•Take Exit 3B (Pine/Cedar Streets) and turn left onto S. Pine Street

•See box below for parking directions.

From Southeast of Little Rock

toward downtown Little Rock

•Take Exit 3B (Pine/Cedar Streets) and turn left onto S. Pine Street

•See box below for parking

Bring in your parking ticket stub and get it validated at your clinic for free parking.

directions.

Patient drop off and parking: • Turn left at Entrance 3 onto West Capitol Avenue • Turn right onto Jack Stephens Drive.

• Proceed straight ahead to the Cancer Institute’s covered circle drive.

• Drop off your patient at the front door. A valet will be there to assist you.

• Exit the circle drive and go left into Parking 3 .

• Park on levels 2B-5B •

(north side).

Take the Cancer Institute elevators to 2B for access to the Cancer Institute’s entrance.

Self parking:

• Turn left at Entrance 3 onto West Capitol Avenue • Turn right into Parking 3 • Park on levels 2B-5B

(north side)

Take the Cancer Institute elevators to 2B for access to the Cancer Institute’s entrance.

Campus map on reverse 7

Parking at the Main Hospital If you are admitted at any time for treatment, UAMS offers a U-Park Parking Pass per patient, to assist with the costs of parking while you are hospitalized. A U-Park Parking pass is given to you upon admission in your admission paperwork.

Frequently Asked Questions Where does the parking pass work?

The patient parking passes work in all three UAMS parking decks. Parking 1 is most convenient for hospital patients.

Do I still need to take a ticket when I enter the parking deck? No. You can scan your parking pass at the entrance to raise the gate Can I buy other parking passes?

Yes. Seven-day parking passes cost $10. You can buy these weekly passes at the pay station in the hospital lobby near the Parking 1 elevators.

My wife/husband/son/daughter/etc. has the parking pass and took it home. How do I get out of the parking deck?

If you need to leave and you don’t have the parking pass with you, you will need to pay at the exit. At the pay station by the Parking 1 elevators, you can press the Lost Ticket button and pay $7 with cash or a credit card. You can also pay with a credit card at the exit gate.

I lost my parking pass. Can I get a new one?

Each patient is given one parking pass at admission and is eligible to get a new pass after 7 days. Parking passes cannot be replaced before the 7 days are up.

I never got a parking pass. How can I get one?

Go to the admissions desk on the first floor of the hospital and ask for a parking pass. This desk is open from 6:00 a.m. to 6:00 p.m. Monday – Friday. You will be asked the patient’s name. The admission staff will check to make sure the patient is still in the hospital and that a pass has not been issued. The computer system records when a parking pass is given out, and patients are eligible for a new card every 7 days.

When do my 7 days start?

The parking pass is good for 7 days from the first time that it is swiped at the exit gate.

We will be in the hospital for 2 days then will have a clinic appointment in 2 weeks. Can I use the same parking pass? Your hospital parking pass will expire 7 days after the first time you swipe it to exit the parking deck. When you go to your clinic appointment, you can get your parking ticket validated at the clinic.

My sister and I will be taking turns staying with our mother. Can we get two parking passes?

Each patient gets one free parking pass. You can buy another pass good for one week of parking for $10.

Where do I get a new parking pass after we’ve been in the hospital for a week?

You can get another free parking pass at the hospital admissions desk on the first floor. This desk is open from 6:00 a.m. to 6:00 p.m. Monday – Friday.

Our parking pass expired and admissions is closed. How do I get a new parking pass?

If your parking pass expires and you are not able to exit the deck, press the button at the parking gate to talk with the parking attendant. You can request a new parking pass from admissions from 6:00 a.m. to 6:00 p.m. Monday – Friday.

What do I do if my parking pass doesn’t work at the exit gate?

Press the button at the exit gate, and a parking attendant will be able to help you. Someone is available 24 hours a day.

10

Guidelines for Visitors There are no restrictions on visiting hours for the patients on the Medical Oncology/Allogeneic (Allo) Transplant units, however there are other special restrictions that have been incorporated to provide a safe healing environment for the Oncology Transplant patient. Please review the following carefully: 1. One family member is allowed to stay overnight with the Allo Transplant patient in the patient’s room.

2. Visitors and/or family members with fever (a temperature greater than or equal to 100 degrees◦F), flu-like symptoms (sore-throat, diarrhea) or have colored nasal or pulmonary secretions may NOT visit the Allo Transplant patient.

3. Visitors who have a communicable disease or have been exposed to a communicable disease within the past 21 days should NOT visit.

4. Visitors who have received live virus vaccinations (chicken pox or oral polio) in the last 21 days should NOT visit.

5. Adults who have received the smallpox vaccination are NOT permitted to visit until the vaccination scab falls off on its own, which usually take 14-21 days.

6. Visitors who have received the nasal flu vaccine (FluMist) can visit after 7 days.

Do not bring children who have had immunization shots during the three weeks before a visit.

Children (defined as less than 14 years of age): 1. Children, grandchildren and siblings are allowed to visit the Stem Cell Transplant (SCT) patients.

2. All children must be screened as soon as they enter the unit.

3. Children, especially infants, should be discouraged from visiting when the patient is on C. difficile or contact precautions of any kind for the protection of the child.

4. All children under the age of 18 must be monitored by an adult, who is not the patient, at all times while on the unit. It is not encouraged for minors to stay overnight, as they must be accompanied by an adult (not the patient) and we have a one overnight guest restriction.

During Flu season (October – February) all visitors will be screened for exposure to infection.

We ask that you limit the number of visitors at a time as to not overtire patients. The nurse will make recommendations to the patient/family/visitors if he/she feels the number and/or frequency of visitors is not in the patient’s best interest.

Flowers Live flowers, plants, and pets cannot be taken onto E7 or H7.

11

11

A Message from Your Stem Cell Transplant Team Welcome to the Winthrop P. Rockefeller Cancer Institute, a Center of Excellence at the University of Arkansas for Medical Sciences (UAMS). The Cancer Institute is Arkansas' only comprehensive cancer treatment and research facility. As the only facility offering Allogeneic Stem Cell Transplant, the Stem Cell Transplant Team partners with the Cancer Institute in strengthening our outreach and clinical programs and are on the path to becoming a National Cancer Institute designated Comprehensive Cancer Center. Our team here at UAMS is committed to offering you the best options and care for you and your family. I, Dr. Yogesh Jethava, as the Allogeneic Transplant Director personally thank you for choosing our team to join you throughout this journey.

Thank you for trusting us with your care.

Sincerely, Dr. Yogesh Jethava Your Stem Cell Transplant Team consists of physicians, advanced practice registered nurses, registered nurses, social workers, dietitians, and other personnel specially trained to meet your needs in a truly holistic manner.

Here are a few people that you will become very well acquainted with throughout this journey.

Hematology/Oncology Physicians Dr. Yogesh Jethava Dr. Pooja Motwani Dr. Appalanaidu Sasapu Dr. Muthu Veeraputhiran Dr. Faith Davies Dr. Gareth Morgan Transplant Coordinator Heather Heister, BSN, RN Transplant Clinical Care Manager/Insurance Crystal Pearson, BSN, RN Nursing Staff Tammie Brockington, APRN, OCN –Transplant Nurse Practitioner Haley Gass, RN – Clinic Nurse for Dr. Jethava Melissa Gordon, RN – Clinic Nurse for Dr. Motwani Michelle Hendrix, RN - Clinic Nurse of Dr. Sasapu and Dr. Muthu Social Workers: Harriet Farley and Carrie Calhoon 12

The Medical Oncology Team Approach The Medical Oncology Team is committed to accelerating curative therapies for various hematological malignancies (i.e. leukemia, lymphoma, and myeloma) and nonmalignant acquired bone marrow disorders (i.e. aplastic anemia) and genetic diseases that are associated with abnormal hematopoiesis and function (thalassemia, sickle cell anemia, and severe combined immunodeficiency). Partnering with the Cancer Institute and the Myeloma Institute, the Stem Cell Transplant Team is able to offer breakthrough clinical treatments, including allogeneic and autologous stem cell transplants. With a leading team of scientists and clinicians, we aim to offer the most innovative clinical and basic science research while delivering outstanding up-to-date and evidencedbased patient care.

The team may be comprised of: •

Hematology/Oncology Physicians

•

Bone Marrow Transplant Physicians

•

Hospitalists

•

Radiologists

•

Pathologists

•

Infectious Disease Physicians

•

Advanced Practice Registered Nurses (APRNs)

•

Physician Assistants (PAs)

•

Registered Nurses (RNs)

•

Pharmacists

•

Clinical Research Staff

•

Social Workers

• Registered Dieticians Additional medical specialists, such as cardiologists and nephrologists, may be consulted as necessary.

Every patient is assigned to an attending hematologist/oncologist who serves as the primary hematologist/ oncologist leading the team in coordinating the best care for each patient. This interdisciplinary team offers expertise in the diagnosis and treatment of a large spectrum of blood disorders and malignancies. The Hematology/ Oncology faculty members participate in specialized patient care and research programs in the areas of bleeding disorders, bone marrow transplantation (allogeneic and autologous), hematologic malignancies, sickle cell anemia and solid tumors.

Your primary hematologist/oncologist will always be the one who is ultimately in charge of your care. During the course of treatment, whether on an inpatient or outpatient basis, you may not be seen daily by he or she, but you will be seen by a team member who is familiar with your care plan and your medical needs.

You can be assured that any major treatment decisions or changes will be discussed with you and your primary hematologist/oncologist before being implemented.

13

Stem Cell Transplant Team Contact Information Contact

Phone Number

Heather Heister, RN Transplant Coordinator HeHeister@uams.edu Crystal Pearson, RN Care Manager (CCM) CLPearson@uams.edu

8067

(501) 686-5471

(501) 526-6990

8150

(501) 686-5471

(501) 231-8018

Stephanie Miller, Patient Representative SAMiller@uams.edu

(501) 526-6990

Registered Dieticians: Michelle Morgan, MS, RD, CSO Dana McClendon, MS, RD, CSO

Fax Number

(501) 526-6990

Tammie Brockington, APRN TRBrockington@uams.edu

Stem Cell Transplant Clinic Nurses: Haley Gass, RN – Dr. Jethava’s Clinic Melissa Gordon, RN – Dr. Motwani’s Clinic Michelle Hendrix, RN - Dr. Sasapu & Dr. Muthu's Clinics

Extension

(501) 686-7474

8723

(501) 686-8530

(501) 526-6990

8634

New Patient Intake Office and Stem Cell Transplant Care Management Department 14

(501) 686-5471

Intake Office The New Patient Intake Office is staffed by Intake Counselors and Registered Nurses. These individuals are your first contacts at the Winthrop P. Rockefeller Cancer Institute. They work together with you to be sure that all pertinent referral and insurance information is obtained prior to your first visit. The Intake Counselors and Registered Nurses coordinate your first time visit, including diagnostic testing and an evaluation by a hematologist/oncologist.

Stem Cell Transplant Care Management Department After you have seen the hematologist/oncologist in the clinic and a treatment plan has been proposed, you will be referred to a Clinical Care Manager (CCM). The CCM is a specially trained Registered Nurse who confirms coverage of the proposed treatments with insurance companies. The CCM obtains pre-certification/ prior authorization for treatments that your physician prescribes. Verification of benefits must be done, and pre-certification and/or prior authorization must be obtained before treatment can begin. The CCM is in close communication with your hematologist/oncologist to make sure that treatment can proceed without causing unnecessary financial burdens to you.

Ask for a CCM while in the exam room with your doctor if you have concerns about coverage. During the course of your treatment, the CCM provides your insurance company with any treatment results and clinical trial/protocol information that they might require in order for them to approve your continuing the next treatment phase. Some insurance companies may consider certain treatments, including allogeneic and autologous stem cell transplantation, to be medically unjustified and may therefore deny coverage. If this should happen, your CCM will work closely with your hematologist/oncologist to pull together information that documents justification for the treatment and which will facilitate an appeal to the insurance company for treatment coverage.

The Stem Cell Transplant Care Management Department is committed to giving patients the most accurate and upto-date information about financial and insurance issues and/or resources available. The staff aims to secure insurance related decisions quickly so that treatment at the Cancer Institute can proceed without delay.

Each insurance company has its own rules about pre-certification for treatment. If you are aware of precertification requirements from your insurance company, please inform your CCM. The more information you can share with us, the better we can assist you. You can be assure that we will protect your privacy as per the regulations of the Health Insurance Portability and Accountability act of 1996 (HIPAA). HIPAA protects the privacy of your personal health information (PHI).

Your CCM works as a liaison with your insurance case manager and your physician in the clinic. Additionally your CCM can assist with ensuring that there will be adequate coverage for services and medications that you may be receiving in your home community. Your CCM will assist you in locating resources to assist you throughout this journey.

15

UAMS MyChart is an Internet based service that gives you access to your UAMS medical information.

UAMS MyChart provides patients or their designated representatives access to personal medical information and clinic services. MyChart is available through a secure internet connection at www.uamshealth.com/MyChart. This is a voluntary service, offered as a convenience and courtesy. With UAMS MyChart, you can use the Internet to: • • • • • •

Request medical appointments.

See your medical information from the MyChart electronic health record.

See test results.

Refill prescriptions.

Get trusted health information.

Send messages electronically and securely with your health care team.

*MyChart is available as an App for Android and Apple

My Chart Activation Instructions 16

Go to: mychart.uamshealth.com

1. Choose New User? Click Sign Up Now 2. If you do NOT have an activation code, choose this option and follow the instructions.

3. You will receive an activation code by email. Once you receive this, click on the link

provided in the email.

4. Follow the instructions to create a username. HINT: use a name that you will remember, but that will provide security of your medical information.

5. You will then create a password: with letters and numbers.

6. Lastly, you will choose a Security Question. This will enable you to access your account should you forget your username and/or password.

***PLEASE KEEP THE FOLLOWING INFORMATION FOR YOUR PERSONAL RECORD***

UAMS MY CHART

17

USERNAME

PASSWORD

SECURITY QUESTION

ANSWER

18

Lab Tests and Radiology Exams A Brief Chapter of what they are and what to do with the Results

19

Blood Counts White Blood Cells protect the body from infection. Chemotherapy can decrease your number of White Blood Cells, which can make it easier for you to get an infection. It is important for you to be aware of the early signs of an infection: An elevated temperature (a temperature above 101째 should be reported) Sore throat Mouth tenderness or white patches in mouth Chills, sweating Productive cough Skin infection (red, swollen or draining scrape or cut) Burning on urination Vaginal itching or discharge Loose bowels/diarrhea

Things you can do to help prevent an infection are: 1. Daily bath or shower-especially clean your groin and under your arms and breasts. Use a deodorant instead 2.

3.

4.

5.

6.

7.

of an antiperspirant, because an antiperspirant blocks sweat glands and may cause an infection.

Use an electric razor to prevent an accidental cut.

After each bowel movement, always wipe from front to back.

During menstruation, sanitary pads should be used instead of tampons.

Thoroughly clean your mouth after each meal. Use a soft bristle toothbrush. Check with your doctor before any dental work is done.

Clean any cut or scrape with soap and water and apply an antiseptic.

Avoid contact with large crowds, church, movies, shopping etc., especially the fi rst two weeks after chemotherapy.

Red Blood Cells carry oxygen from the lungs to other tissues in the body. Chemotherapy can decrease the number of Red Blood Cells. Signs and symptoms to look for are: 1.

2.

3.

4.

Feeling tired and weak Looking pale Feeling short of breath Headaches and dizziness

It is important to have several rest periods each day. Avoid very strenuous work, but include some form of light exercise, such as walking, in your daily routine. If your Red Blood Cells get too low, you may need a blood transfusion. After this transfusion, you should feel much better.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 20

Blood Counts, continued Platelets stop bleeding and help your blood to clot. Chemotherapy can decrease the number of Platelets which may cause you to bleed or bruise more easily.

Things you need to watch for are: 1. Bruising 2. Blood in the urine 3. Blood in the bowel movements (black or tarry stools) 4. Petechiae (a rash of little red spots under the skin) 5. Coffee-ground emesis (vomit) You should not take aspirin or use rectal suppositories, enemas, or take any temperatures by rectum. If you know that you have low platelets, be sure to guard against falling, hitting your head, or playing any contact sports.

For questions or problems, call:

Infusion 4 at 501-686-8220 Option #5 or the Clinic at 501-686-8530 after 8:00 a.m.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205

21

Revised 10/05 Reviewed 8/14

The ranges of blood cell counts below are for adults. There may be a slight variation between labs and there is a slight difference in “normal” between males and females. However, here at UAMS, the following are the most current reference ranges: Red blood cell (RBC) count o 4 to 5.20 million red cells per microliter of blood Hematocrit (Hct)- the part of the blood made up of red cells

o 35.0 to 45.0%% Hemoglobin (Hgb)- the amount of the red-cell that carries oxygen o 12.0 to 15.0 grams per 100 milliliters of blood Platelet (Plt) count- part of the blood that helps the blood clot o 150,000 to 450,000 platelets per microliter of blood White blood cell (WBC) count- also called leukocytes, cells that help fight infection o 3,600 to 9,500 white cells per microliter of blood Differential (also called a diff): o Shows the different types of WBCs that the blood is made of o The types of WBC counted are: neutrophils, lymphocytes, monocytes, eosinophils and basophils o The normal range in an adult for each of the WBCs are: • 35-60% neutrophils • 23-50% lymphocytes • 4.6-12% monocytes • 0.5-6.5% eosinophils • 0.1-1.1% basophils

22

Should patients keep track of their blood counts?

Some patients want to know the results of their blood counts and follow the changes that occur. If anemia develops, it may explain changes in your energy levels or an inability to carry out tasks that were easy to do before the anemia. If the white blood cell count drops to very low levels and fever develops, it is important to contact the physician promptly. If the platelet count is very low, you may bleed or bruise more easily; and it may be advisable to minimize activities that involve physical contact or the risk of injury. These matters should be discussed with your physician.

Blood Counts Record Date

Blood Count

Date

Blood Count

23

Date

Blood Count

Blood Counts Record Date

Blood Count

Date

Blood Count

24

Date

Blood Count

Patient: _____________________________

Exam Date: _________________

Arrival Time: _________________ Exam Time: _________________

Please arrive at the location marked below and check in: Outpatient CT area – Outpatient Center – 1st Floor – Radiology Phone: (501) 686-6190 Radiology Department – 1st Floor of the Main Hospital Phone: (501) 686-5740 You are having the CT exam marked below: CT of Abdomen and/or Pelvis You are to arrive 1 hour before the scheduled exam time.

This will allow time for you to drink oral contrast if needed for your exam, and/or fi ll out any needed paperwork.

You should not eat or drink anything for 4 hours before you arrive.

An IV may also be needed for the exam.

CT of Head, Neck, Chest, Spine, Extremities You should arrive 30 minutes before the scheduled exam time. This will allow time for needed paperwork.

You should not eat or drink anything for 2 hours before you arrive.

CTA You should arrive at Radiology Department 30 minutes before your exam time.

You should not eat or drink 4 hours before you arrive.

You will have an IV started for this exam. Lab or blood work may also be needed.

Important: Please tell your doctor if you are allergic to IODINE. Many exams require IV contrast, which could cause a reaction if precautions are not taken. Also, if you may be pregnant, please tell the technologist doing your exam. Thank you.This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 8/08

MRI Directions Main MRI Building If your MRI has been scheduled in the main MRI building, please do the following: If you are entering from Parking 3 (located at Cedar & Capitol), enter the Outpatient Center and follow signs to Elevator E. Take the elevator to the 4th Floor. Upon exiting the elevator, turn right and follow hallway to the elevator marked MRI/Gamma Knife. Proceed down to the ground level and then to the front desk for arrival.

If you are entering from Parking Deck #2 (located on Markham Street), enter the main hallway and follow the MRI signs all the way into the breezeway (long hallway connecting the outpatient buildings to the main building) and go to the MRI elevator. Proceed to the ground level for arrival at the front desk.

If you are entering through the Cancer Institute, proceed toward Elevator E. If you turn right, you will note the Healing Garden, proceed up the stairs, MRI is located to your right.

If you have problems, please call (501) 686-6032.

PRI MRI – PRI Building If your MRI has been scheduled in the PRI building, please do the following: Driving on Markham Street, enter the UAMS campus by turning onto Hooper Drive (at light).

Proceed on Hooper Drive, following the signs to PRI, and enter Parking Deck #1. Continue to the 3rd parking level and look for the MRI sign in the far right (northwest) corner. Proceed to the entrance and park in front of the door.

If you have problems, please call (501) 5268305.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 8/14

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205

PET-CT Instructions, continued

Exercise  Do not perform any strenuous exercise 24 hours before the test. This includes weight-lifting, jogging, etc., and yes, even walking.

 Avoid chewing, sucking, or any movement that works your tongue and neck muscles the day of your scan.

Other Instructions  If you have had a study with barium contrast within a couple days of this study, please notify us. You may need to reschedule your PET scan.

 If you are diabetic and your blood sugar is running over 250, please let us know. You may need to contact your regular doctor to get this under control before you can have a PET/CT scan.

 Avoid all tobacco/nicotine products for 4 hours before your PET scan.  You should arrive 30 minutes prior to your scheduled PET/CT scan.  If you have or are suspected of having lymphoma, breast cancer, thyroid cancer, or head and neck cancer, you need to bring someone with you to drive you home because you will probably be given a medication (oral antianxiolytic) to relax you during the scan.

 You should inform us if you are or suspect you are pregnant or if you are breastfeeding before your scheduled PET/CT scan date.

What to Expect  Upon arrival, your height, weight, and blood glucose level will be checked and recorded.  FDG, which is like sugar water, will be injected into one of your veins. The risk of any reaction to this injection is essentially zero.

 You will be kept warm if you feel chilled. You can ask for a blanket if needed.  You will be asked to remain calm and to avoid use of muscles, including talking, chewing, rocking, etc, for about 60 to 90 minutes. You are allowed to go to the bathroom, and you may drink water.

 During the scan which takes about 15 to 60 minutes, you will lie on a comfortable table that moves slowly through a large ring which is where the pictures are taken. You will be asked to lie very still without any movement.

 As long as the doctor doesn’t need anymore information, you are free to leave after the scan.  You can eat or drink your normal diet after the scan. Be sure to drink plenty of fluids to flush any remaining FDG out of your system. FDG doesn’t stay in your system very long, so there is no reason to stay away from other people once your study is complete. However, just to be safe, wait for a few hours before getting too close to an infant or anyone who is pregnant.

 Our Nuclear Medicine doctors will then interpret the images and notify your doctor of the findings.  The radiation you receive from a PET/CT scan is almost equal to what you would receive from other imaging exams.

 If you need to speak with a technician, the number for the PET/CT Center is (501) 526-5608.  If you need to cancel, please contact your clinic at (501) 686-8230.

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 1/13

PET Scan Questionnaire (For Oncology Patients) Your doctor has asked us to do a PET (Positron Emission Tomography) scan for you. A PET scan is a procedure used to look at the body for signs of cancer.

A PET scan is very safe. You will be given an injection of a liquid organic substance (dye). This liquid (dye) will travel to a specific organ or body part and will show what is happening there. There is no risk to you from the dye used in this type of test because it is made from the same things that are found in your body such as sugar, amino acids and water.

Most other tests or scans take pictures of how an organ or body part looks. PET scans take pictures of how the same organ or part works. Both types of information are needed for the best possible care.

To get the best PET scan possible, we need some information from you. Please complete the questions below. If you need help, ask the nurse or technologist to help you.

1. What type of cancer do you have?

2. Have you ever had a PET scan, CAT scan, MRI, X-rays or other scans done? (Check One) YES NO If you said YES, we will need the results to compare to this scan.

3. What kind of scan did you have?

4. Date of scan

Where was your scan done?

5. Date of your next doctor’s appointment to get the results of this scan?

6. Other information that might help us with your care?

Thank you for taking the time to complete this form.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 8/11 Reviewed 11/14

Radiology Exams – hand out

30

Bone Marrow Aspiration and Bone Biopsy Examination of the bone marrow is a valuable test to diagnose blood disorders. A bone marrow biopsy takes a sample of bone and a small amount of fluid and cells from inside the bone. A bone marrow aspiration removes only the marrow. Bone marrow aspiration and bone biopsies are used to stage different disorders of the blood, such as leukemia. Staging will help your caregiver understand how far the disease has progressed.

The tests are also useful in diagnosing: • • • • • •

Fever of unknown origin (FUO).

Bacterial infections and other widespread fungal infections.

Cancers that have spread (metastasized) to the bone marrow.

Diseases that are characterized by a deficiency of an enzyme (storage diseases). This includes: Niemann-Pick disease.

Gaucher disease. PROCEDURE

Sites used to get samples include: • • • • • •

Back of your hip bone (posterior iliac crest).

Both aspiration and biopsy.

Front of your hip bone (anterior iliac crest).

Both aspiration and biopsy.

Breastbone (sternum).

Aspiration from your breastbone (done only in adults). This method is rarely used.

When you get a hip bone aspiration: • • • • • • • •

You are placed lying on your side with the upper knee brought up and flexed with the lower leg straight.

The site is prepared, cleaned with an antiseptic scrub, and draped. This keeps the biopsy area clean.

The skin and the area down to the lining of the bone (periosteum) are made numb with a local anesthetic.

The bone marrow aspiration needle is inserted. You will feel pressure on your bone.

Once inside the marrow cavity, a sample of bone marrow is sucked out (aspirated) for pathology slides.

The material collected for bone marrow slides is processed immediately by a technologist.

The technician selects the marrow particles to make the slides for pathology.

The marrow aspiration needle is removed. Then pressure is applied to the site with gauze until bleeding has stopped.

Following an aspiration, a bone marrow biopsy may be performed as well. The technique for this is very similar. A dressing is then applied.

RISKS AND COMPLICATIONS • • •

The main complications of a bone marrow aspiration and biopsy include infection and bleeding.

Complications are uncommon. The procedure may not be performed in patients with bleeding tendencies.

A very rare complication from the procedure is injury to the heart during a breastbone (sternal) marrow aspiration. Only bone marrow aspirations are performed in this area.

•

Long-lasting pain at the site of the bone marrow aspiration and biopsy is uncommon.

31

Bone Marrow Aspiration, Bone Marrow Biopsy Care After Read the instructions outlined below and refer to this sheet in the next few weeks. These discharge instructions provide you with general information on caring for yourself after you leave the hospital. Your caregiver may also give you specific instructions. While your treatment has been planned according to the most current medical practices available, unavoidable complications occasionally occur. If you have any problems or questions after discharge, call your caregiver.

FINDING OUT THE RESULTS OF YOUR TEST Not all test results are available during your visit. If your test results are not back during the visit, make an appointment with your caregiver to find out the results. Do not assume everything is normal if you have not heard from your caregiver or the medical facility. It is important for you to follow up on all of your test results.

HOME CARE INSTRUCTIONS You have had sedation and may be sleepy or dizzy. Your thinking may not be as clear as usual. For the next 24 hours: • • • • • • • • • •

Only take over-the-counter or prescription medicines for pain, discomfort, and or fever as directed by your caregiver.

Do not drink alcohol.

Do not smoke.

Do not drive.

Do not make important legal decisions.

Do not operate heavy machinery.

Do not care for small children by yourself.

Keep your dressing clean and dry. You may replace dressing with a bandage after 24 hours.

You may take a bath or shower after 24 hours.

Use an ice pack for 20 minutes every 2 hours while awake for pain as needed.

SEEK MEDICAL CARE IF: • • • •

There is redness, swelling, or increasing pain at the biopsy site.

There is pus coming from the biopsy site.

There is drainage from a biopsy site lasting longer than one day.

An unexplained oral temperature above 102° F (38.9° C) develops.

SEEK IMMEDIATE MEDICAL CARE IF: • • •

You develop a rash.

You have difficulty breathing.

You develop any reaction or side effects to medications given.

32

Information about your Diagnosis: The Basics

Acute Lymphoblastic Leukemia Acute Lymphoblastic Leukemia (ALL) is a type of blood cancer. It is also called acute lymphoid leukemia. There are several types of ALL. CAUSES The cause of ALL is still not known. There can be some genetic and environmental factors in some cases.

SYMPTOMS • • • • • • • • • • • • •

Poor appetite Tiring easily Shortness of breath Crankiness Low-grade fevers Bone pain Joint pain Pale skin Bruising Headache Nosebleeds and easy bleeding from minor cuts Swollen glands Weight loss

DIAGNOSIS The diagnosis of ALL is made by tests such as: • • •

Blood tests to check blood cell counts and the shape of the blood cells (morphology) marrow sampling. Bone marrow is the part of the bone that make blood cells.

Genetic testing Spinal fluid for leukemia cells

Bone

TREATMENT The goal of treatment is to cure the ALL. Treatment of ALL is based on the patient’s age and testing results. Treatment is given in phases. The first phase of treatment is called induction therapy. The goals of induction therapy are to: • • •

Kill as many ALL cells as possible Bring the blood counts back to normal Get rid of all signs of the disease

Depending on the type of ALL, induction therapy may include: •

Chemotherapy. These medicines either kill the cancer cells or stop them from dividing and growing.

• Intrathecal chemotherapy (chemotherapy medicines placed in the fluid surrounding the spinal cord and brain. These are placed through a spinal tap). This treatment is done if the ALL has spread or to prevent the spread to the brain and spinal cord.

• Radiation therapy. This is done to treat ALL that has spread from the blood or bone marrow.

It is also done to prevent the spread to the spinal cord and brain.

Allogeneic Stem Cell Transplantation 34

The main reasons for doing an allogeneic stem cell transplant are: • •

To start a new supply of red cells, white cells and platelets with help from the transplanted donor stem cells To give strong doses of chemotherapy to kill ALL cells

The decision to do a stem cell transplant depends on: • • • •

The availability of a matched donor Your response to drug therapy Your understanding of the transplant's benefits and risks New treatments that are under investigation (clinical trials)

ALL is in remission when there are no signs or symptoms and the blood counts have returned to normal. Treatment results and outcomes vary among patients. Newer treatment therapies, progress in stem cell transplantation, better supportive care and studies of new drugs in clinical trials are all contributing to improved outcomes and quality of life for people diagnosed with blood cancers. After remission, the goal of the next phase of treatment (consolidation/intensification therapy) is to: • • • • •

Kill any remaining inactive ALL cells not detected in the bone marrow or blood with more chemotherapy.

Prevent ALL from getting into the lining of the spinal cord and brain. This may involve: Intrathecal chemotherapy Radiation Stem Cell Transplantation. The goal of this is to restore the bone marrow's ability to make blood cells. This is done with a stem cell transplant. (Stem cells are a type of cell in the bone marrow or blood stream that make the 3 kinds of blood cells).

The next phase is often called the maintenance phase. During this phase, treatment is aimed at keeping the ALL in remission by killing any remaining ALL cells that could cause a relapse. Less intense chemotherapy treatments are used. These are given by mouth, injection and put into the spinal fluid.

Most of the medicines and treatments of childhood leukemia have a number of side effects.

They often produce hair loss, nausea (feeling sick to your stomach), diarrhea, and vomiting.

Mouth sores and skin rashes are common. The treatments can also stop the bone marrow from producing normal amounts of various blood cells. This can lead to complications such as: • • •

Infection Bleeding Anemia

Other treatments for ALL include: • • • •

Antibiotic medications to prevent a type of lung infection.

Diet supplements to help with nutrition.

Blood transfusions to treat anemia and other low blood counts.

Medications to prevent or treat nausea, vomiting, and other side effects of cancer treatments.

HOME CARE INSTRUCTIONS When you are receiving chemotherapy: • •

You, your care partner, family and any visitors should wash hands often. Especially before meals, after being outside, and after using the toilet.

Keep your teeth and gums clean and well cared for. Use soft toothbrushes.

35

• • • • •

Discuss the safety of immunizations with your care partner and family members.

When visiting a healthcare facility, ask about side entrances or waiting areas where you will not be exposed to infections.

Only take over-the-counter or prescription medicines for pain, discomfort, or fever as directed by your physician.

Use a good sunblock and clothing to prevent sun exposure.

Usually, it is recommended that the other family members receive an influenza shot every year.

SEEK MEDICAL CARE IF: • • • • • • •

You have a cough or cold symptoms.

You have a sore throat.

You develop painful urination.

You have frequent diarrhea.

You have frequent vomiting.

You have a skin rash.

You have been exposed to chickenpox or measles - especially if you or your child has not been immunized or is not immune to these illnesses.

SEEK IMMEDIATE MEDICAL CARE IF: • • • •

You have a fever of 102° F (38.9° C) or higher measured by mouth.

You develops chills.

You have trouble breathing.

You have blood in urine or stools.

36

Acute Myelocytic Leukemia Acute Myelocytic Leukemia (AML) is a type of blood cancer. It is also called acute myeloid leukemia. There are many types of AML. • • • •

It's important to get care and treatment as soon as possible.

For some patients, AML is curable with current therapies.

Researchers are studying new approaches to therapy in clinical trials.

Hematologists and oncologists are specialists who treat people who have AML or other types of blood cancer.

CAUSES The cause of AML is still not known. There can be some genetic and environmental factors in some cases.

SYMPTOMS • • • • • • • • • • • • • • • •

Poor appetite Tiring easily Shortness of breath Crankiness Low-grade fevers Bone pain Joint pain Pale skin Bruising Nosebleeds and easy bleeding from minor cuts Swollen glands Headache Weight loss Swollen gums Lumps under the skin Slow healing of cuts

DIAGNOSIS The diagnosis of AML is made by tests such as: • • • •

Blood tests to check blood cell counts and the shape of the blood cells (morphology).

Sampling parts of bone that make blood cells (bone marrow).

Genetic testing.

Sampling spinal fluid for leukemia cells.

A biopsy of lumps to check for leukemia cells.

TREATMENT The goal of treatment is to cure the AML. Treatment of AML is based on the patient's age and test results.

Treatment is given in phases. The first phase of treatment is called induction therapy.

The goals of induction therapy are to: • • •

Kill as many AML cells as possible.

Bring the blood counts back to normal. A blood count gives information about a patient's blood.

Get rid of all signs of the disease.

Depending on the type of AML, induction therapy may include: 37

•

Chemotherapy. These medicines stop cancer cells from growing. These medicines either kill the cancer cells or stop them from increasing in number. Most patients with AML start chemotherapy right away.

•

Intrathecal chemotherapy. These medicines are placed in the fluid surrounding the spinal cord and brain. These medicines are placed through a spinal tap. This treatment is done if the AML has spread to the brain and spinal cord.

•

Radiation therapy. This treatment uses X-rays. This is needed to treat AML that has spread from the blood or bone marrow. It may also be done to prevent AML from spreading to the spinal cord and brain.

•

Stem cell transplantation. This may be used with a second phase of chemotherapy.

Other anti-cancer medicines. These may be used to kill AML cells or turn them into normal blood cells.

•

Clinical Trials. These are new treatments that are currently under review.

Allogeneic Stem Cell Transplantation Allogeneic stem cell transplantation involves transferring stem cells from a healthy person (the donor) to the patient. The procedure follows high-intensity chemotherapy, potent drugs that must be toxic enough to kill leukemic cells. Unfortunately, the drugs also take aim at normal stem cells in the bone marrow.

The main reasons for doing an allogeneic stem cell transplant are: • •

To start a new supply of red cells, white cells and platelets with help from the transplanted donor stem cells To give strong doses of chemotherapy to kill CML cells

The decision to go a stem cell transplant depends on:

• • • •

The availability of a matched donor Your response to drug therapy Your understanding of the transplant's benefits and risks New treatments that are under investigation (clinical trials)

Autologous Stem Cell Transplantation Autologous stem cell transplantation involves "harvesting," or retrieving, noncancerous stem cells from the patient’s own body and freezing them. The cells are returned to the patient’s body after receiving intensive chemotherapy. The procedure is only appropriate for certain patients.

The question of which patients are likely to benefit from transplantation after their first complete remission is under study in clinical trials. The decision to do a stem cell transplant depends on whether the patient’s AML is favorable risk, intermediate risk or high risk (see below). The doctor also considers: • • • •

The patient’s overall health The chances that chemotherapy alone will cure the AML The type of abnormal changes to the chromosomes and cells The patient’s understanding of the benefits and risks of transplant

Finding the Best Treatment Approach Most AML patients, particularly patients with high white cell counts, need treatment soon after diagnosis because of the disease's rapid progression. The initial goal of treatment usually is to get the patient into remission. The long-term goal is to cure the disease.

The treatment your doctor recommends is based on several factors, including: 38

• • • • • • •

Your AML subtype Your cytogenetic analysis results Your overall health Whether you've had cancer in the past and chemotherapy to treat it Whether you've had a myelodysplastic syndrome or another blood cancer in the past Whether the AML is in your central nervous system Whether you have an infection in your bloodstream (systemic infection) Whether your AML has not responded to treatment or relapsed.

As you develop a treatment plan with your doctor, be sure to discuss: • •

The results you can expect from treatment The possibility of participating in a clinical trial, where you'll have access to advanced medical treatment that may be more beneficial to you than standard treatment Potential side effects, including long-term and late effects

You may find it helpful to bring a loved one with you to your doctor's visits for support, to take notes and ask follow-up questions. It's a good idea to prepare questions you'd like to ask when you visit your doctor. You can also record your conversations with your doctor and listen more closely when you get home.

Most of the medicines and treatments of leukemia have a number of side effects. They often produce hair loss, feeling sick to your stomach (nausea), diarrhea and throwing up (vomiting).

Mouth sores and skin rashes are common. The treatments can also stop the bone marrow from producing normal amounts of various blood cells. This can lead to complications such as: • • •

Infection Bleeding Anemia

Other treatments for AML include: • • • •

Medicines that kill germs (antibiotics) to prevent a type of lung infection.

Diet supplements to help with nutrition.

Blood transfusions to treat anemia and other low blood counts.

Medicines to prevent or treat nausea, vomiting and other side effects of cancer treatments.

HOME CARE INSTRUCTIONS When you are receiving chemotherapy: • • • • • • •

You, your care partner, family and any visitors should wash hands often. Especially before meals, after being outside, and after using the toilet.

Keep your teeth and gums clean and well cared for. Use soft toothbrushes.

Discuss the safety of immunizations with your care partner and family members.

When visiting a healthcare facility, ask about side entrances or waiting areas where you will not be exposed to infections.

Only take over-the-counter or prescription medicines for pain, discomfort, or fever as directed by your physician.

Use a good sunblock and clothing to prevent sun exposure.

Usually, it is recommended that the other family members receive an influenza shot every year.

39

SEEK MEDICAL CARE IF: • • • • • • •

You have a cough or cold symptoms.

You have a sore throat.

You develop painful urination.

You have frequent diarrhea.

You have frequent vomiting.

You have a skin rash.

You have been exposed to chickenpox or measles - especially if you or your child has not been immunized or is not immune to these illnesses.

SEEK IMMEDIATE MEDICAL CARE IF: • • • •

You have a fever of 102° F (38.9° C) or higher measured by mouth.

You develops chills.

You have trouble breathing.

You have blood in urine or stools.

40

Aplastic Anemia Aplastic anemia occurs when the soft material that makes up the hollow insides of your bones (bone marrow) stops making enough blood cells. These cells are: • • •

Red blood cells (RBC) to carry oxygen.

White blood cells (WBC) to fight infection.

Platelets (Plt) to help your blood clot when you have an injury.

Your bone marrow continually makes new blood cells because they do not last very long. Red blood cells live about 4 months. Platelets last only one week and white blood cells last about a day. Anything that hurts or injures your bone marrow can cause aplastic anemia.

Aplastic anemia affects all age groups although it seems to appear a little more frequently in children. For unknown reasons, it also appears in people aged 20 to 25 and those over age 60. It usually develops slowly. In a few cases, symptoms can develop very quickly. There are many possible causes. Even after aggressive treatment, as many as 1 in 4 patients can die within the first year. Many are treated successfully but must be monitored for possible recurrent problems. Aplastic anemia is a rare and serious condition.

CAUSES Some things that injure marrow can include: • • • • • • •

Radiation and chemotherapy treatment for cancer. These treatments used to kill cancer cells also damage other cells.

Exposure to toxic chemicals used in some pesticides and insecticides may damage marrow.

Some medications, such as those used to treat rheumatoid arthritis and some antibiotics, can cause secondary aplastic anemia.

Autoimmune disorders in which your immune system begins attacking your own body cells.

Viral infections can affect bone marrow.

Pregnancy Idiopathic aplastic anemia makes up about half the cases of aplastic anemia. This means the cause is unknown.

SYMPTOMS Red blood cells carry oxygen. A decrease in red blood cells will make you short of breath. White blood cells fight infection. Decreases in white blood cells make you more likely to get an infection. Platelets help your blood clot. Too few platelets can cause bleeding.

Other common signs and symptoms include: • • • • • • •

Fatigue Lightheadedness or fainting Shortness of breath and rapid heart rate with exertion Pale skin and lips Frequent infections Easy bruising and bleeding Nosebleeds and bleeding gums 41

• •

Prolonged bleeding from cuts Sore mouth

DIAGNOSIS • • •

Blood tests and a bone marrow biopsy usually are used to find out what is wrong.

A number of different problems can make one of your blood cells low, but when they are all low, it is more worrisome.

Additional testing may be done to find the underlying cause for the anemia.

TREATMENT You will usually be referred to a specialist in blood diseases (hematologist) or to a treatment center which specializes in the treatment of aplastic anemia. Severe aplastic anemia is life-threatening. You will need to be hospitalized. Mild or moderate aplastic anemia is still serious, but you may be treated as an outpatient unless complications develop. Treatments may include: • • •

•

Observation for mild cases.

Blood transfusions.

Medications. When anemia is from an autoimmune disorder, medications may be used to suppress the immune system. Medications are also available to stimulate marrow to make more blood cells.

Stem cell transplantation (Allogeneic). This is a procedure where healthy marrow from a donor is given to the person with aplastic anemia. This is used for severe aplastic anemia. If a donor is found, the marrow that you have left is depleted with chemotherapy. This is done so the remaining marrow does not try to fight against the healthy donor marrow. The healthy marrow is given into a vein and it goes to the bone marrow cavities where it will hopefully begin producing new blood cells.

An allogeneic stem cell transplantation procedure carries risk. If the body rejects the transplant, it can be life-threatening. Not everyone is a candidate for transplantation. It requires a lengthy stay in the hospital. After the transplant, drugs to help prevent rejection are necessary. One other risk is the danger of catching a disease from the donor. Today the blood supply is the safest it has ever been. The risk is extremely small but still remains.

HOME CARE INSTRUCTIONS • • • •

Get plenty of rest and eat a well-balanced diet.

Avoid excessive exercise. Long-term anemia can stress the heart.

When platelets are at low levels and the risk of bleeding is greater, avoid all activities that risk injury.

Protect yourself from infections by washing your hands often. Avoid crowds. Avoid being around sick people.

PREVENTION Especially if you have had this problem before, avoid exposure to insecticides, herbicides, organic solvents, paint removers and other toxic chemicals.

SEEK IMMEDIATE MEDICAL CARE IF: • • • •

You develop a temperature above 100° F (37.8° C).

You develop flu-like feelings, signs of infection, or more frequent infections.

You have blood in your urine or bowel movements.

You develop easy bruising or bleeding from your gums or nose.

42

• •

You have prolonged bleeding from cuts.

You have increasing shortness of breath or chest pain with exertion.

SEEK IMMEDIATE MEDICAL CARE IF: • • • • •

You develop a rapid heart rate with exertion.

You have increasing fatigue and tiredness.

You develop lightheadedness or fainting.

You develop pale skin and lips.

You develop a sore mouth.

MAKE SURE YOU: • • •

Understand these instructions.

Have a caregiver to assist you in watching your condition.

Have a caregiver to get help right away if you are not doing well or get worse.

43

Adult Hodgkin Lymphoma Adult Hodgkin lymphoma is a cancer of the lymph system. Lymph tissue is found throughout the body. Hodgkin lymphoma can begin in almost any part of the body. It can spread to almost any tissue or organ in the body. Being young, male and having had the virus that causes mononucleosis are all things that make you more likely to get Adult Hodgkin Lymphoma.

There are two main types of Hodgkin lymphoma: • •

Classical Nodular lymphocyte-predominant

Adult Hodgkin lymphoma is a type of cancer that develops in the lymph system. This is part of the body's immune system. The lymph system is made up of the following: • • •

• • • • • • • • • • • • • • •

Lymph: Colorless, watery fluid that travels through the lymph system and carries white blood cells called lymphocytes. Lymphocytes protect the body against infections and the growth of tumors.

Lymph vessels: A network of thin tubes that collect lymph from different parts of the body and return it to the bloodstream.

Lymph nodes: Small, bean-shaped structures that filter lymph and store white blood cells that help fight infection and disease. When you have an infection, this is what is often called "swollen glands". Lymph nodes are located along the network of lymph vessels found throughout the body. Clusters of lymph nodes are found in the: Underarm Pelvis Neck Abdomen Groin Spleen: Located on the left side of the abdomen near the stomach. This organ: Makes lymphocytes Filters the blood Stores blood cells Destroys old blood cells Thymus: An organ in which lymphocytes grow and multiply. The thymus is in the chest behind the breastbone Tonsils: Two small masses of lymph tissue at the back of the throat. The tonsils produce lymphocytes.

Bone marrow: The soft, spongy tissue in the center of large bones. Bone marrow produces white blood cells including: Lymphocytes Red blood cells Platelets

CAUSES Risk factors for adult Hodgkin lymphoma include the following: • • • •

Being in young or late adulthood Being male Being infected with the Epstein-Barr virus Having a first-degree relative (parent, brother, or sister) with Hodgkin lymphoma 44

SYMPTOMS Other conditions may cause the same symptoms. A caregiver should be consulted if any of the following problems do not go away: • • • • • •

Painless, swollen lymph nodes in the neck, underarm, or groin Fever for no known reason Drenching night sweats Weight loss for no known reason.

Itchy skin Feeling very tired

DIAGNOSIS Tests that examine lymph nodes are used to find and diagnose adult Hodgkin lymphoma. The following tests and procedures may be used: •

Physical exam and history: A history of your past illnesses and treatments will be taken.

An exam of the body will check general signs of health. This includes looking for signs of disease. This may be paying special attention to lumps, swollen glands or anything else that seems unusual. A complete blood count (CBC) is done: The CBC is used to test for, diagnose, and monitor many different conditions. Your blood is checked for the following: • The number of red blood cells, white blood cells, and platelets.

• The amount of hemoglobin (the protein that carries oxygen) in the red blood cells • The portion of the sample made up of red blood cells Sedimentation rate: A procedure in which a sample of blood is drawn and checked for the rate at which the red blood cells settle to the bottom of the test tube • Blood chemistry studies: A procedure in which a blood sample is checked to measure the amounts of certain substances in the blood. An unusual (higher or lower than normal) amount of a substance can be a sign of disease in the organ or tissue that makes it • Chest x-ray: An x-ray of the organs and bones inside the chest. An x-ray is a type of energy beam that can go through the body and onto film, making a picture of areas inside the body CT scan (CAT scan): These are specialized x-rays. A dye may be injected into a vein or swallowed to help the organs or tissues show up better. For adult Hodgkin lymphoma, CT scans of the chest, abdomen, and pelvis are taken. A CT scan may also be known as: • Computed tomography • Computerized tomography • Computerized axial tomography • PET scan (positron emission tomography scan): A procedure to find malignant tumor cells in the body. A small amount of radioactive glucose (sugar) is injected into your vein.

The PET scanner rotates around the body and makes a picture of where glucose is being used in the body. Malignant tumor cells show up brighter in the picture. These tumor cells are more active and take up more glucose than normal cells do.

• Laparotomy: A surgical procedure in which an incision (cut) is made in the wall of the abdomen to check the inside of the abdomen for signs of disease. The size of the incision depends on the reason the laparotomy is being done. Sometimes organs are removed or tissue samples are taken and checked under a microscope for signs of disease. This procedure is done only if it is needed to make decisions about treatment.

Thoracentesis: The removal of fluid from the space between the lining of the chest and the lung. The fluid is removed using a needle. A pathologist views the fluid under a microscope to look for cancer cells.

For pregnant women with Hodgkin lymphoma, staging tests protect the fetus from harmful radiation are used. These include: 45

•

•

•

• • • •

MRI (magnetic resonance imaging): A procedure that uses a magnet, radio waves, and a computer to make a series of detailed pictures of areas inside the body. This procedure is also called nuclear magnetic resonance imaging (NMRI).

Ultrasound exam: A procedure in which high-energy sound waves (ultrasound) are bounced off internal tissues or organs and make echoes. The echoes form a picture of body tissues called a sonogram.

Biopsy: when a small piece of tissue is removed. A pathologist (specialist in looking at tissues) will examine the tissue. The specialist then looks for cancer cells, especially ReedSternberg cells. Reed-Sternberg cells are common in classical Hodgkin lymphoma.

Below are different types of biopsies performed: Lymph node biopsy: The removal of all or part of a lymph node.

Excisional biopsy: The removal of an entire lymph node.

Incisional biopsy: The removal of part of a lymph node.

Core biopsy: The removal of part of a lymph node using a wide needle.

Bone marrow aspiration and biopsy: The removal of bone marrow, blood, and a small piece of bone by inserting a hollow needle into the hipbone or breastbone.

Immunophenotyping: A test in which the cells in a sample of blood or bone marrow are looked at under a microscope to find out if malignant lymphocytes (cancer) began from the B lymphocytes or the T lymphocytes.

STAGING After adult Hodgkin lymphoma has been diagnosed, tests are done to find out if cancer cells have spread within the lymph system or to other parts of the body. The process used to find out if cancer has spread within the lymph system or to other parts of the body is called staging. The information gathered from the staging process determines the stage of the disease. It is important to know the stage in order to plan treatment.

Adult Hodgkin lymphoma may be described as follows: • • • •

A: The patient has no symptoms B: The patient has symptoms such as fever, weight loss, or night sweats E: "E" stands for extranodal and means the cancer is found in an area or organ other than the lymph nodes or has spread to tissues beyond, but near, the major lymphatic areas S: "S" stands for spleen and means the cancer is found in the spleen The following stages

are used for Adult Hodgkin lymphoma: • • •

•

• • • • • •

Stage I - Cancer is found in one lymph node group.

Stage IE: Cancer is found in an area or organ other than the lymph nodes.

Stage II - Cancer is found in two or more lymph node groups on the same side of the diaphragm (the thin muscle below the lungs that helps breathing and separates the chest from the abdomen).

Stage IIE: Cancer is found in an area or organ other than the lymph nodes and in lymph nodes near that area or organ. Cancer may have spread to other lymph node groups on the same side of the diaphragm.

Stage III - Cancer is found in lymph node groups on both sides of the diaphragm.

Stage IIIE: Cancer is found in lymph node groups on both sides of the diaphragm and in an area or organ other than the lymph nodes.

Stage IIIS: Cancer is found in lymph node groups on both sides of the diaphragm and in the spleen.

Stage IIIS+E: Cancer is found in lymph node groups on both sides of the diaphragm, in an area or organ other than the lymph nodes, and in the spleen.

Stage III(1): Cancer is found only in the upper abdomen above the renal vein.

Stage III(2): Cancer is found in lymph nodes in the pelvis and/or near the aorta.

46

•

• • • •

Stage IV - The cancer either may be found throughout one or more organs other than the lymph nodes or may be in lymph nodes near those organs. The cancer may also be found in one organ other than the lymph nodes and has spread to lymph nodes far away from that organ. In stage IV, Adult Hodgkin lymphoma may be grouped for treatment as follows: Early Favorable Early Unfavorable Advanced Favorable Advanced Unfavorable

TREATMENT There are different types of treatment for patients with adult Hodgkin lymphoma. The treatment is generally planned by a team of caregivers with expertise in treating lymphomas. Treatment varies with the stage of your disease. Treatment for adults may be different than treatment for children. Hodgkin lymphoma may also occur in patients who have acquired immunodeficiency syndrome (AIDS); these patients require special treatment. Choosing the most appropriate cancer treatment is a decision that ideally involves the patient, family, and health care team. Three types of standard treatment are used: • • • •

Chemotherapy. This is treatment with medications which kill cancer.

Radiation therapy. This is high dose x-ray treatment of the tumor.

Surgery. This is done to remove areas high in tumor such as the spleen.

Stem cell transplantation. This may be used with a second phase of chemotherapy. It is not recommended for initial treatment of patients who have Hodgkin lymphoma, but may be used to treat patients in first relapse.

Two types of stem cell transplantation can be used: •

Autologous stem cell transplantation. An autologous stem cell transplant's goal is to restore the body's ability to make normal blood cells after high-dose chemotherapy or radiation, it utilizes your own stem cells. Autologous transplantation poses less of a risk than allogeneic transplantation does to patients.

•

Allogeneic stem cell transplantation. An allogeneic stem cell transplant uses a matched donor's stem cells, this could be a sibling or a matched unrelated donor. This involves transferring the stem cells from a healthy person (the donor) to your body after high-intensity chemotherapy or radiation.

The effectiveness of therapies for newly diagnosed patients has reduced the need for stem cell transplantation. However, autologous stem cell transplantation may cure some patients whose Hodgkin lymphoma has returned after a period of no sign of the disease.

New types of treatment are being tested in clinical trials. These include the following: • •

High-dose chemotherapy.

Radiation therapy with stem cell transplant.

HODGKIN LYMPHOMA DURING PREGNANCY When Hodgkin lymphoma is diagnosed in the second half of pregnancy, most patients can delay treatment until after the baby is born. Treatment of Hodgkin lymphoma during the second half of pregnancy may include the following: 47

• • • • •

Watchful waiting, with plans to induce delivery when the fetus is 32 to 36 weeks old.

Systemic chemotherapy using one or more drugs.

Steroid therapy.

Radiation therapy to relieve breathing problems caused by a large tumor in the chest.

Recurrent Adult Hodgkin Lymphoma.

Treatment of recurrent Hodgkin lymphoma may include the following: • • • • • •

Combination chemotherapy.

Combination chemotherapy followed by high-dose chemotherapy and stem cell transplant with or without radiation therapy.

Radiation therapy with or without chemotherapy.

Chemotherapy as palliative therapy to relieve symptoms and improve quality of life.

A clinical trial of high-dose chemotherapy and stem cell transplant.

This summary section refers to specific treatments under study in clinical trials, but it may not mention every new treatment being studied. Information about ongoing clinical trials is available from the NCI Web site.

For Hodgkin lymphoma during pregnancy, treatment options also depend on: • •

The wishes of the patient.

The age of the fetus. Adult

Hodgkin lymphoma can often be cured if found and

treated early.

FOR MORE INFORMATION National Cancer Institute: www.cancer.gov

48

Non-Hodgkin's Lymphoma, Adult Non-Hodgkin's lymphoma is a cancer that begins in the lymphoid tissue (part of your body's defense system, which protects the body from infections, germs, and diseases).

Lymphocytes (a type of white blood cells) are found in the lymphoid tissue.

NonHodgkin's lymphoma starts in lymphocytes. There are different types of nonHodgkin's lymphoma. Your caregiver will help you understand the seriousness of your cancer. This will be based on the type of cells affected and how fast it is growing and spreading.

CAUSES Non-Hodgkin's lymphoma is a cancer that starts in lymphocytes. The cause of nonHodgkin's lymphoma is not known. It is thought that viruses cause certain types of nonHodgkin's lymphoma. But this is less common. The risk of getting this cancer increases if: • • • •

Your immune system (body's defense system) is weak, especially after an organ transplant.

You are an elderly white male.

You have a diet high in fat.

You are infected with certain viruses.

SYMPTOMS Non-Hodgkin's lymphoma can occur at any age. It can cause different symptoms such as: • • • • • • • • •

Swelling of the lymph nodes Fever Excessive sweating Itchy skin Tiredness Weight loss Coughing, breathing trouble, and chest pain Weakness and tiredness that do not go away Pain, swelling, or a feeling of fullness in the abdomen

DIAGNOSIS Your physician will examine you to check your general health and look for any lumps.

Blood tests and biopsy (removing body tissue for testing) of the lymph node (gland) may be included. Your physician may suggest chest X-ray, scanning or lumbar puncture (collecting fluid from spinal column for testing).

TREATMENT Non-Hodgkin's lymphoma can be treated in different ways. This depends on your symptoms, the stage of your cancer when you were first diagnosed, and the speed with which it is spreading. You and your caregiver will work together and decide on the best plan. Treatment may include: • • •

Radiation therapy (using radiation to destroy the cancer cells).

Chemotherapy (using drugs to destroy the cancer cells).

Biological therapy (using body's immune system to treat cancer) like monoclonal antibody therapy (using antibodies that can kill or block the cancer cells).

49

•

Stem Cell Transplantation (introducing healthy stem cells into the body). under clinical trial.

Vaccine therapy, still

Autologous Stem Cell Transplantation Autologous stem cell transplantation involves "harvesting," or retrieving, noncancerous stem cells from the patient’s own body and freezing them. The cells are returned to the patient’s body after receiving intensive chemotherapy. The procedure is only appropriate for certain patients.

The question of which patients are likely to benefit from transplantation after their first complete remission is under study in clinical trials. The decision to do a stem cell transplant depends on whether the patient’s AML is favorable risk, intermediate risk or high risk (see below). The doctor also considers: • • • •

The patient’s overall health The chances that chemotherapy alone will cure the AML The type of abnormal changes to the chromosomes and cells The patient’s understanding of the benefits and risks of transplant

You may remain symptom-free for 1 to 2 years, after treatment. Non-Hodgkin's lymphoma may recur. If it recurs, your caregiver will advise you on the suitable treatment.

If you are pregnant and also have non-Hodgkin's lymphoma, you need immediate treatment. Your caregiver will decide the treatment that suits you the most.

SEEK MEDICAL CARE IF: • •

You develop new symptoms of non-Hodgkin's lymphoma.

You have non-Hodgkin's lymphoma and continuous fever.

50

Myelodysplastic syndromes (MDS) Myelodysplastic syndromes (MDS) are a group of conditions that involve the blood. Blood is made up of different types of cells. These cells are made in the middle of the bones, in a part called the bone marrow.

When people have MDS, their bone marrow does not work normally. It makes abnormal blood cells and does not make enough normal blood cells. This can cause symptoms.

CAUSES Some cases of MDS are linked to known risk factors, but usually the cause is unknown.

Many cases are related to previous treatment with chemotherapy, when this occurs, MDS is called treatment-related or secondary MDS. RISK FACTORS

•

Prior treatment with chemotherapy

•

Radiation therapy

•

Genetic disorders

•

Smoking

•

Environmental exposure (i.e. radiation, long-term exposure to benzene and certain chemicals)

•

Age – MDS is rare in patients under the age of 40, most patient are over the age of 60.

•

Sex – MDS is more common in men.

SYMPTOMS Some people with MDS have no symptoms. They might find out that they have MDS after they have blood tests for another reason. Other people do have symptoms. They might: ● ● ● ● ●

Feel weak, tired, or dizzy Have trouble thinking clearly Have trouble breathing Bruise or bleed more easily than usual Get infections more easily than usual

Is there a test for MDS? — Yes. To test for MDS, your doctor or nurse can do: ●Blood tests ●Bone marrow biopsy – During this procedure, a doctor removes a very small sample of the bone marrow. Then another doctor looks at the cells under a microscope to see if abnormal cells are present.

There are different types of MDS. Your doctor will use your test results to figure out which type you have.

TREATMENT The right treatment for you will depend, for the most part, on the type of MDS you have, your symptoms, and your age. Most treatments do not cure MDS. But treatments can improve symptoms and help people feel better.

51

Doctors usually treat MDS with one or more of the following: ● Blood transfusions – A blood transfusion is when a person gets blood that was given (donated) by another person. ● Medicines – Doctors can use different types of medicines to treat MDS. These medicines work in different ways. Some medicines help the bone marrow make more blood cells. Other medicines affect the body’s infection-fighting system. ● Chemotherapy – Chemotherapy is the term doctors use to describe a group of medicines that kill abnormal cells. ● Stem cell transplant – This treatment uses chemotherapy or another treatment called radiation to kill the abnormal cells in the bone marrow. These dead cells are then replaced with “donor” cells. The “donor” cells can come from different places. They usually come from people whose blood matches yours. An allogeneic stem cell transplant is the only treatment that can cure MDS. The decision to do a stem cell transplant depends on: • • • •

The availability of a matched donor Your response to drug therapy Your understanding of the transplant's benefits and risks New treatments that are under investigation (clinical trials)

Your doctor or nurse might also talk with you about being in a clinical trial. A clinical trial is a research study that uses volunteers to test new treatments or new combinations of current treatments.

53

10 Tips for Chemo 1. SPEAK

UP!

Know your plan. doesn’t seem or the each other.

2. WASH

Question what right, ask for a doctor/nurse.

Go ahead –

you are getting and why. “time out” to check it Care-partners must be an speak up!

YOUR HANDS!

Good hand washing is infection.

See the hand cleaner with at least several.

This is one time (pens, magazines, personal the “chemo hello”; if Trim your nails and platelets are above you accidentally cut hand with palm facing – they are too 3. PROTECT

the most powerful preventative for Good hand washing teaching sheet!

66% alcohol.

Keep Purell handy – in your life it’s okay not to belongings).

Avoid shaking hands. you do shake hands – wash them!

ask your 50 as yourself you, if long and

caregiver to a precaution so while trimming you can see a hiding place

trim you nails. nails for

Use have share Do

theirs. Make don’t bleed Look at peeking germs!

sure if your out

and dry, moisturizer. and bug MOUTH

chafed Do spray. (see

Know the such as:

signs

YOUR SKIN!

Skin is your first line of defense.

Wrinkles areas are susceptible areas.

Use a hypoallergenic skin checks daily!

Be sure to use sunscreen Don’t forget about the skin on the inside of your “Mouth Care During Chemotherapy” sheet).

4. KNOWLEDGE IS Know and

If something with the orders advocate for

the labs symptoms

POWER! that of

are most infection.

important to you.

Look for things

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 53

    

redness swelling pain pus fever

or

Know “normal” head to toe your mouth and your APN or different.

5. BE PREPARED! Arrange a clean important phone have on hand plastic baggy so shopping list.

tenderness

vs. check stick nurse

“not each your if

normal”. day in tongue out you see

area and keep numbers. for nausea. you will have

items A cold Keep it

Give the to sores,

your own body a little mirror. Don’t forget to open check your mouth.

Notify white patchesor anything

you might washcloth a dry if you

need is one need

handy including very helpful to handy in a it.

See

10 Tips for Chemo, continued 6. STAY AWAY PEOPLE! Use good judgment face and wash a mask handy someone near in crowded, move away from

FROM with your in you closed sick

CROWDS,

pets and hands. a clean is coughing areas such people.

CHILDREN, BIRDS

kids.

Keep them DO NOT handle their plastic baggy.

Use or appears ill, as full elevators.

7. GET ENOUGH REST/SLEEP! Your body is doing a tremendous amountof Listen to your body; Rest when you are tired. you have trouble sleeping.

Don’t exhaust down before you fall down!

Don’t try to be help!

8. NOURISH Drink 8-12 caffeine

away waste. it as Get

work on Tell your yourself. a hero

YOUR BODY AND DRINK PLENTY OF glasses of fluids a day.

Beware because they will dehydrate you.

Eat

AND SICK from if well up

the APN –

as and

inside. if Sit get

FLUIDS! of drinks with foods that you

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 54

your Keep

like that you. foods are

are high in calories.

Don’t go to buffets/salad cooked/refrigerated properly.

9. COMMUNICATE! Know who to handy.

Don’t mistake.

Try to be a stressful

Take bars.

talk to and when.

Have be afraid to let us know This is especially true with patient and understanding of each and difficult time.

10. SET PRIORITIES! Always lead with your for what you most (incentive spirometer,

most want etc.).

snacks and Always

drinks with make sure

names and numbers if you made a your medicines. other.

This is

important question/problem. to do. Be sure to do

your

Save energy “homework”

For both care-partners, insist on enjoying at least one simple pleasure each day. It will sustain and renew you.

Don’t forget to nurture your mind and spirit as well as your body!

Created 3/09

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 55

What You Need to Know About Chemotherapy Side Effects There are many chemotherapy drugs given to treat different cancers. These drugs have side effects. The most common side effects are listed below: 1. Fever: Cancer patients may have a weak immune system. Chemotherapy may further weaken the immune system by decreasing the number of white blood cells. White blood cells fi ght infection. Fever during or after chemotherapy may be a sign of a serious or life threatening infection. If you feel sick in any way, measure your temperature. If you have fever of 101ﾂｺF or higher, call your doctor right away.

2.

Nausea and Vomiting: Nausea and vomiting may lead to dehydration and kidney damage. If you experience nausea or vomiting, take your nausea medication as directed and try to drink plenty of fl uids in small quantities. If you have nausea or vomiting for more than 24 hours, call your doctor.

3. Mouth Sores: Mouth sores can be a side effect of chemotherapy, or they can be caused by infection. They are usually painful and may prevent you from eating and drinking right. If you have painful mouth sores that stop you from eating and drinking, call your doctor.

4.

Tiredness: Feeling tired may be a result of many things窶田ancer, chemotherapy, and emotions.

It is very important to stay as active as you can and eat well. If you become very weak or are not able to take care of yourself, let your doctor know.

Chemotherapy-related hair loss is usually temporary. You may start to lose 5.Hair Loss : your hair around two weeks after taking some chemotherapy drugs. Hair usually starts to grow back two to three months after chemotherapy is complete.

Chemotherapy Side Effects, continued This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 56

Call your Doctor/Nurse immediately if you have any of the following problems: 1.Fever of 100.5ﾂｺF or higher at any time窶電o not take any medicine for fever before you talk to your doctor or nurse 2. Nausea and vomiting for more than 24 hours 3. Diarrhea more than three times in one day 4. Cannot eat or drink because of painful mouth sores 5. Cannot take care of yourself because of tiredness 6. Bleeding from any site in your body 7. Shortness of breath, coughing up mucous, chills or urinary problems 8. Constipation lasting more than two days

Your Doctor is:

Your

Nurse is:

Medical Oncology Clinic (Phone) 501-686-8530 (Toll Free) 1-877-201-8530

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 57

(FAX) 501-686-8541

Revised 4/08

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 58

Instructions After High Dose Chemotherapy Following your treatment with high dose chemotherapy, you will be discharged to either home or a place of residence in the local area. The chemotherapy will cause your blood counts to go down to very low levels. Therefore, it is important for you to follow these instructions.

General Hygiene: 1. Remember to wash your hands before eating and after using the bathroom.

2. Bathing daily will help you feel refreshed. If you have a central venous catheter, please do not get it wet.

3. Avoid people with any symptoms of colds, flu, infections, chicken pox (or those who have been exposed to chicken pox) and shingles.

4. Take good care of your mouth. Brush your teeth in the morning, after every meal or snack and before you go to bed. Rinse your mouth with the prescribed mouthwash after every brushing and more often if your mouth is sore. Use a soft toothbrush to brush your teeth.

5. Drink plenty of liquids, about 8-12 glasses (8 oz.) of fluid a day.

Combating the Side Effects: 1. If you have nausea or vomiting that keeps you from drinking enough fluids or eating an average amount of food in a day, tell your doctor or nurse. You may need to have extra fluids given in the Cancer Institute intravenously.

2. Take your temperature by mouth every morning and evening and anytime you feel like you may have a fever.

3. Do not take acetaminophen (Tylenol), aspirin, ibuprofen or any medicine that contains these drugs unless specifically told to take them by a doctor or nurse.

4. Take all of the medications prescribed by your doctor. Keep a record of the medications that you are taking and keep this list with you at all times.

5. When your white blood count is low, please avoid crowded places such as shopping malls, restaurants, etc. Wear a mask when you are around people (other than those who stay with you), when you go outdoors, run errands or even go to the clinic.

6. Let your doctor or nurse know if you have chills, sore throat, cough, shortness of breath, bleeding from the nose or mouth, blood in the urine or stool, frequent or loose stools, constipation, rash or bruises, red or painful IV catheter site.

7. During the time when your white blood count is low, have someone else take care of your household pets and/or large animals such as horses or other farm animals. This includes the care of cages, litter boxes, stalls, etc.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 59

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

After High Dose Chemotherapy continued Patient Information: Do not take aspirin. You may take acetaminophen (Tylenol) for pain but NOT for fever.

Call for any of the following: 1.

2.

3.

4.

5.

6.

Fever over 101째 (Call immediately. Do not take Tylenol.).

Weakness - so tired that you cannot do daily activities.

Shortness of Breath with normal activities.

Blood in urine, stool, sputum, or for change in bowel habits.

Uncontrolled nausea, vomiting, or diarrhea.

Any Questions or other problems.

Remember: You will need to come to the MIRT Clinic to have your blood counts checked on a regular schedule. You will be assigned a primary nurse in the outpatient clinic. He/she will tell you the days and times to return.

Your nurse at the clinic is ______________________________________.

Hours:

Monday-Friday 8:00 a.m. - 5:00 p.m. Call the MONC Clinic (501) 686-8530 and ask to speak to one of the Oncology nurses.

Monday-Friday 5:00 p.m. - 8:00 a.m., Weekends and Holidays call (501) 686-5000 and ask for the Oncology physician or Allo Transplant MD/APNon call.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

Revised 8/11 Reviewed 11/14

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 60

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 61

Chemotherapy and Stem Cell Collection The following information will guide you during your treatment plan. Your specific treatment plan may vary.  To prepare your body for stem cell collection, you will receive chemotherapy each day for 1-4 days.

A nurse practitioner will work with you and follow you during your treatment.

 The first day after your chemotherapy is complete, you will get shots that will help your body produce stem cells. You will also have blood drawn for lab tests every other day.

 8-10 days after the start of your chemotherapy, your white blood cell count will be less than 1.0. This is called being “neutropenic”. Once you are neutropenic, you will be given an IV antibiotic and infusor. If you have a fever greater than 101 degrees, you will need to start using the antibiotic yourself. (Detailed instructions on the use and care of the infusor will be given to you). You will have blood drawn for lab tests every other day.

 When your white blood cell count is about 2.0 or greater (after your recovery from chemotherapy) you will need to go to Apheresis to have your blood drawn for lab tests. The procount will tell us when you are ready to begin your stem cell collection. On the day you are to be in Apheresis, please be here by 7:00 a.m.

 Your stem cell collection will start about 14-16 days after the start of your chemotherapy. They will be collected for 2-6 days. (Most collections last 2-3 days)

 You will have a Quinton catheter (which is larger than a Cook) placed for your stem cell collection the day before or the day of your stem cell collection. If you have a Cook catheter in place, we will change your Cook catheter for a Quinton.

 When your stem cell collection is complete, you will have the Quinton catheter removed. (If you had a catheter exchanged, you will again have a new Cook catheter exchanged for the Quinton catheter).

Remember: One time per week, while you are here having treatment, you will need to turn in a 24hour urine collection so that we can check your disease status. You will need to get a form from the clinic to go with the urine collection. Specimens can be turned in on the 2nd Floor of Stephens Spine Center.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 6/10

62

Hematopoietic Stem Cell Tips Client Name ____________________________________________ Date _______________ Dietitian / Dietetic Technician __________________________________________________ Phone ________________________ Email _______________________________________ Shopping Tips  Buy foods in

small amounts

 Choose snack-sized or measure portions

so

they

will

be

fresh

single-serving packages.

These may and not waste food.

Cooking Tips  Wash

hands well

before, during, and

 Do not

share your

food

 Wash

raw

foods well

 Check use

food food

for that

with

after

making and

when eaten. help

you

eating food.

other people.

before eating them.

bruises, looks or

broken skins, rot, smells bad.

and

mold.

Do

not

 Cook meats, fish, poultry, and eggs until well done.  Keepcold foods than 4.4 degrees Clean all use.

cold (less degrees Fahrenheit cooking

than 40 degrees Centigrade) and hot which is more than tools, pots, and dishes

 Do not

refrigerated

leftovers

keep

for

Fahrenheit which foods hot (more 60 degrees completely before

more than

3

is less than 140 Centigrade) and after

days.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Created 4/09 Reviewed 11/14 63

Chemoembolization Chemoembolization is a procedure that combines two things: chemotherapy and embolization. It delivers drugs that kill cancer cells (chemotherapy) through a blood vessel directly to a tumor. At the same time, another substance is put into the blood vessel to create a blockage (embolization). This keeps blood from "feeding" the tumor and traps the chemotherapy in place.

Chemoembolization is most often used to treat liver cancer. It is well-suited to the liver because the liver has 2 large blood vessels that supply it with blood. One blood vessel can be used to deliver chemotherapy and then blocked. The other blood vessel can still get blood to the liver.

For most people, chemoembolization helps slow the growth of the tumor or stop it from growing. If the tumor continues to grow or returns after treatment, the procedure can be done again.

LET YOUR CAREGIVER KNOW ABOUT: • • • • • • • •

Allergies to food or medicine.

Medicines taken, including vitamins, herbs, eyedrops, over-the-counter medicines, and creams.

Use of steroids (by mouth or creams).

Previous problems with anesthetics or numbing medicines.

History of bleeding problems or blood clots.

Previous surgery.

Other health problems, including diabetes and kidney problems.

Possibility of pregnancy, if this applies.

RISKS AND COMPLICATIONS • • • • • • • • •

Infection or numbness near the surgical cut (incision) Swelling or bruising Slow healing Blood clots Damage to the blood vessel Damage to healthy cells close to the chemoembolization site.

Allergic reaction to the contrast dye used in the procedure Side effects from the chemotherapy. These could include nausea, hair loss, and a decrease in red blood cells (anemia).

Damage to the liver. This is rare.

BEFORE THE PROCEDURE • •

• • • •

Your caregiver may want you to have blood tests. These tests can help tell how well your kidneys and liver are working. They can also show how well your blood clots.

Two weeks before your procedure, stop using aspirin and nonsteroidal anti-inflammatory drugs (NSAIDs) for pain relief. This includes prescription drugs and over-the-counter drugs such as ibuprofen and naproxen.

Also stop taking vitamin E. If you take blood thinners, ask your caregiver when you should stop taking them.

Do not eat or drink for about 8 hours before your procedure.

You might be asked to shower or wash with an antibacterial soap before the procedure.

Make arrangements for someone to drive you home. Depending on the procedure, you may be able to go home the same day. However, most people stay overnight in the hospital after this procedure. Ask your caregiver what to expect.

64

PROCEDURE Chemoembolization usually takes about 90 minutes. The procedure may vary depending on which organ or area of the body is being treated. If the liver is the target, here is what you can expect: • • • • • • • • •

An intravenous (IV) needle will be inserted in your arm. Medicine will be able to flow directly into your body through this needle.

You may be given medicine that numbs the chemoembolization insertion site (local anesthetic).

You may be given medicine that makes you sleep (general anesthetic).

A needle will be inserted into the femoral artery in the groin.

A thin, flexible tube (catheter) will be inserted into the needle and guided to a blood vessel that enters the liver.

A dye will be injected through your IV. Then, X-rays will be taken. This helps to visualize the exact location of the blood vessels that lead into your liver.

The chemotherapy drugs and the substance used for embolization will be injected into the blood vessel.

More X-rays will be taken to make sure the procedure has closed the blood vessel.

The catheter will be removed. Pressure will be put on the incision to stop any bleeding, and a bandage (dressing) will be applied.

AFTER THE PROCEDURE • • •

You will stay in a recovery area until the anesthesia has worn off. Your blood pressure and pulse will be checked.

Pain and nausea are common right after chemoembolization. You can be given medicine to control this. Be sure to tell your caregiver how you are feeling.

You will need to remain lying down for 6 to 8 hours. This often means an overnight stay in the hospital.

Sometimes people stay longer.

65

Chemoembolization Care After Refer to this sheet in the next few weeks. These instructions provide you with information on caring for yourself after your procedure. Your caregiver may also give you specific instructions. Your treatment has been planned according to current medical practices, but problems sometimes occur. Call your caregiver if you have any problems or questions after your procedure.

HOME CARE INSTRUCTIONS •

Take any medicine your caregiver prescribed for pain, nausea, or fever. Follow the directions carefully.

•

Ask your caregiver whether you can take over-the-counter medicines for pain or fever. Do not take aspirin unless your caregiver says that you should. Aspirin increases the chances of bleeding.

•

If you were given a small breathing device (incentive spirometer), be sure to use it. It helps keep your lungs clear while you are recovering. You will not need this after your activity level is back to normal.

•

You might have a slight fever for about 1 week after the procedure. If it gets worse, let your caregiver know.

•

You might feel tired and not hungry. This is normal. These feelings should go away in about 1 week.

•

Do not get the puncture site wet for the first few days after surgery or until your caregiver says it is okay.

•

You should be able to resume your normal routine in about 1 week.

•

During the first month after your procedure, you will probably need to go back to your caregiver for some simple tests. Scans and blood tests will help determine whether the procedure worked.

SEEK MEDICAL CARE IF: • • •

Blood or fluid leak from the wound, or the wound becomes red or swollen.

You become nauseous or throw up for more than 2 days after surgery.

Your pain or fever becomes worse than it was when you left the hospital.

SEEK IMMEDIATE MEDICAL CARE IF: You have a fever that gets worse or does not go away after 1 week.

66

Bone Marrow Transplantation and Peripheral Blood Stem Cell Transplantation: Frequently Asked Questions (FAQs) WHAT ARE BONE MARROW TRANSPLANTATION AND PERIPHERAL BLOOD STEM CELL TRANSPLANTATION? • • • • •

Bone marrow transplantation (BMT) and peripheral blood stem cell transplantation (PBSCT) are procedures that restore stem cells that have been destroyed by high doses of chemotherapy and/or radiation therapy.

There are three types of transplants: Patients receive their own stem cells (autologous transplants).

Patients receive stem cells from their identical twin (syngeneic transplants).

Patients receive stem cells from someone other than themselves or an identical twin. The patient's brother, sister, parent or a person not related to the patient may be used (allogeneic transplants).

KEY POINTS • • • • •

In general, patients are less likely to develop a complication known as graft-versus-host disease (GVHD) if the stem cells of the donor and patient are closely matched.

After being treated with high-dose anticancer drugs and/or radiation, the patient receives the harvested stem cells. They travel to the bone marrow and begin to produce new blood cells.

A "mini-transplant" uses lower, less toxic doses of chemotherapy and/or radiation to prepare the patient for transplant.

A "tandem transplant" involves two sequential courses of high-dose chemotherapy and stem cell transplant.

The National Marrow Donor Program® (NMDP) maintains an international registry of volunteer stem cell donors.

WHAT ARE BONE MARROW AND HEMATOPOIETIC STEM CELLS? •

• • • •

Bone marrow is the soft, sponge-like material found inside bones. Bone marrow contains a specific king of cell that creates blood-forming stem cells (hematopoietic). Hematopoietic stem cells divide to form more bloodforming stem cells. Or they mature into one of three types of blood cells: White blood cells, which fight infection.

Red blood cells, which carry oxygen.

Platelets, which help the blood to clot.

Most hematopoietic stem cells are found in the bone marrow. But some cells, called peripheral blood stem cells (PBSCs), are found in the bloodstream. Blood in the umbilical cord also contains hematopoietic stem cells. Cells from any of these sources can be used in transplants.

WHY ARE BMT AND PBSCT USED IN CANCER TREATMENT? One reason BMT and PBSCT are used in cancer treatment is to make it possible for patients to receive very high doses of chemotherapy and/or radiation therapy. To understand more about why BMT and PBSCT are used, it is helpful to understand how chemotherapy and radiation therapy work.

•

Chemotherapy and radiation therapy generally affect cells that divide rapidly. They are used to treat cancer because cancer cells divide more often than most healthy cells. But, because bone marrow cells also divide frequently, high-dose treatments can severely damage or destroy the patient's bone marrow. Without healthy bone marrow, the patient is no longer able to make the blood cells needed to:

• • •

Carry oxygen.

Fight infection.

Prevent bleeding.

67

BMT and PBSCT replace stem cells that were destroyed by treatment. The healthy, transplanted stem cells can restore the bone marrow's ability to produce the blood cells the patient needs.

•

In some types of leukemia, the graft-versus-tumor (GVT) effect that occurs after allogeneic BMT and PBSCT is crucial to the effectiveness of the treatment. GVT occurs when white blood cells from the donor identify the cancer cells that remain in the patient's body after the chemotherapy and/or radiation therapy (the tumor) as foreign. They then attack them.

WHAT TYPES OF CANCER USE BMT AND PBSCT? BMT and PBSCT are most commonly used in the treatment of leukemia and lymphoma. They are most effective when the leukemia or lymphoma is in remission. This means that the signs and symptoms of cancer have disappeared. BMT and PBSCT are also used to treat other cancers such as: • •

Cancer that arises in immature nerve cells and affects mostly infants and children (neuroblastoma).

Cancer of the plasma cells (multiple myeloma).

Researchers are evaluating BMT and PBSCT for the treatment of various types of cancer.

HOW ARE THE DONOR'S STEM CELLS MATCHED TO THE PATIENT'S STEM CELLS IN ALLOGENEIC OR SYNGENEIC TRANSPLANTATION? •

•

•

•

To minimize potential side effects, doctors most often use transplanted stem cells that match the patient's own stem cells as closely as possible. People have different sets of proteins on the surface of their cells. They are called human leukocyte-associated (HLA) antigens. The set of proteins, called the HLA type, is identified by a special blood test.

In most cases, the success of allogeneic transplantation depends in part on how well the HLA antigens of the donor's stem cells match those of the recipient's stem cells. The higher the number of matching HLA antigens, the greater the chance that the patient's body will accept the donor's stem cells. In general, patients are less likely to develop a complication known as graft-versus-host disease (GVHD) if the stem cells of the donor and patient are closely matched.

Close relatives, especially brothers and sisters, are more likely than unrelated people to be HLA-matched. But only 25 to 35 percent of patients have an HLA-matched sibling. The chances of obtaining HLA-matched stem cells from an unrelated donor are slightly better. It is approximately 50 percent. Among unrelated donors, HLA-matching is greatly improved when the donor and recipient have the same ethnic and racial background.

The number of donors is increasing. But individuals from certain ethnic and racial groups still have a lower chance of finding a matching donor. Large volunteer donor registries can help in finding an appropriate unrelated donor.

Identical twins have the same genes. So they have the same set of HLA antigens. As a result, the patient's body will accept a transplant from an identical twin. But identical twins represent a small number of all births.

So syngeneic transplantation is rare.

HOW IS BONE MARROW OBTAINED FOR TRANSPLANTATION? The stem cells used in BMT come from the liquid center of the bone. This is called the marrow. In general, the procedure for obtaining bone marrow, which is called harvesting, is similar for all three types of BMT's (autologous, syngeneic, and allogeneic). The donor is given either general or regional anesthesia. General anesthesia puts the person to sleep during the procedure. Regional anesthesia causes loss of feeling below the waist. Needles are inserted through the skin over the hip (pelvic) bone or, in rare cases, the breastbone (sternum). Then they go into the bone marrow to draw the marrow out of the bone. Harvesting the marrow takes about an hour. The harvested bone marrow is then processed to remove blood and bone fragments.

Harvested bone marrow can be combined with a preservative and frozen to keep the stem cells alive until they are needed. This technique is known as cryopreservation. Stem cells can be preserved this way for many years.

HOW ARE PBSC'S OBTAINED FOR TRANSPLANTATION? 68

The stem cells used in PBSCT come from the bloodstream. A process called apheresis is used to obtain PBSC's for transplantation. For 4 or 5 days before apheresis, the donor may be given a medication to increase the number of stem cells released into the bloodstream. In apheresis, blood is removed through a large vein in the arm or a central venous catheter. This is a flexible tube that is placed in a large vein in the neck, chest, or groin area. The blood goes through a machine that removes the stem cells. The blood is then returned to the donor. The collected cells are then stored. Apheresis typically takes 4 to 6 hours. The stem cells are then frozen until they are given to the recipient. Apheresis may also be called leukapheresis.

HOW ARE UMBILICAL CORD STEM CELLS OBTAINED FOR TRANSPLANTATION? •

•

•

Stem cells also may be retrieved from umbilical cord blood. For this to occur, the mother must contact a cord blood bank before the baby's birth. The cord blood bank may request that she complete a questionnaire and give a small blood sample.

Cord blood banks may be public or commercial. Public cord blood banks accept donations of cord blood.

They may provide the donated stem cells to another matched individual in their network. In contrast, commercial cord blood banks will store the cord blood for the family. This is in case it is needed later for the child or another family member.

After the baby is born and the umbilical cord has been cut, blood is retrieved from the umbilical cord and placenta. This process does not cause health risks to the mother or the child. If the mother agrees, the umbilical cord blood is processed and frozen for storage by the cord blood bank. Only a small amount of blood can be retrieved from the umbilical cord and placenta. So the collected stem cells are typically used for children or small adults.

ARE ANY RISKS ASSOCIATED WITH DONATING BONE MARROW? • •

Only a small amount of bone marrow is removed. So donating usually does not pose any significant problems for the donor. The most serious risk involves the use of anesthesia during the procedure.

The area where the bone marrow was taken out may feel stiff or sore for a few days. And the donor may feel tired. Within a few weeks, the donor's body replaces the donated marrow. But the time required for a donor to recover varies. Some people are back to their usual routine within 2 or 3 days. Others may take up to 3 to 4 weeks to fully recover their strength.

ARE ANY RISKS ASSOCIATED WITH DONATING PBSC'S? Apheresis usually causes little discomfort. During apheresis, the patient may feel: • • •

Lightheadedness Chills Numbness around the lips • Cramping in the hands

Unlike bone marrow donation, PBSC donation does not require anesthesia. The medication that is given to stimulate the release of stem cells from the marrow into the bloodstream may cause: • • • • • •

Bone and muscle aches Headaches Fatigue Nausea Vomiting Difficulty sleeping

These side effects generally stop within 2 to 3 days of the last dose of the medication.

HOW DOES THE PATIENT RECEIVE THE STEM CELLS DURING THE TRANSPLANT? After being treated with high-dose anticancer drugs and/or radiation, the patient receives the stem cells through an intravenous (IV) line just like a blood transfusion. This part of the transplant takes 1 to 5 hours.

69

ARE ANY SPECIAL MEASURES TAKEN WHEN THE CANCER PATIENT IS ALSO THE DONOR (AUTOLOGOUS TRANSPLANT)?

The stem cells used for autologous transplantation must be relatively free of cancer cells. The harvested cells can sometimes be treated before transplantation. A process known as purging is used to get rid of cancer cells. This process can remove some cancer cells from the harvested cells and minimize the chance that cancer will come back. Purging may damage some healthy stem cells. So more cells are obtained from the patient before the transplant. This is to ensure that enough healthy stem cells will remain after purging.

WHAT HAPPENS AFTER THE STEM CELLS HAVE BEEN TRANSPLANTED TO THE PATIENT? After entering the bloodstream, the stem cells travel to the bone marrow. There they begin to produce new white blood cells, red blood cells, and platelets in a process known as engraftment. Engraftment usually occurs within about 2 to 4 weeks after transplantation. Your caregivers monitor it by checking blood counts on a frequent basis. Complete recovery of immune function takes much longer. It can take up to several months for autologous transplant recipients and 1 to 2 years for patients receiving allogeneic or syngeneic transplants. Caregivers evaluate the results of various blood tests to confirm that new blood cells are being produced and that the cancer has not returned. The removal of a small sample of bone marrow through a needle for examination under a microscope (bone marrow aspiration) can also help caregivers determine how well the new marrow is working.

WHAT ARE THE POSSIBLE SIDE EFFECTS OF BMT AND PBSCT? •

•

The major risk of both treatments is an increased susceptibility to infection and bleeding as a result of the highdose cancer treatment. Caregivers may give the patient antibiotics to prevent or treat infection. They may also give the patient transfusions of platelets to prevent bleeding and red blood cells to treat anemia. Patients who undergo BMT and PBSCT may experience short-term side effects. These include: o Nausea o Vomiting o

Fatigue

o

Loss of appetite o Mouth sores o Hair loss o Skin reactions

Potential long-term risks include complications of the pre-transplant chemotherapy and radiation therapy, such as: o Inability to produce children (infertility). o Clouding of the lens of the eye (cataracts). This causes loss of vision.

•

•

o New (secondary) cancers o Damage to the liver, kidneys, lungs, and/or heart With allogeneic transplants, a complication known as graft-versus-host disease (GVHD) sometimes develops. GVHD occurs when white blood cells from the donor identify cells in the patient's body as foreign and attack them. The most commonly damaged organs are the skin, liver, and intestines. This complication can develop within a few weeks of the transplant (acute GVHD) or much later (chronic GVHD). To prevent this complication, the patient may receive medications that suppress the immune system. Also, the donated stem cells can be treated to remove the white blood cells that cause GVHD. This is a process called T-cell depletion. If GVHD develops, it can be very serious. It is treated with steroids or other immunosuppressive agents. GVHD can be difficult to treat. But some studies suggest that patients with leukemia who develop GVHD are less likely to have the cancer come back. Clinical trials are being conducted to find ways to prevent and treat GVHD. The likelihood and severity of complications are specific to the patient's treatment. They should be discussed with your caregiver.

WHAT IS A "MINI-TRANSPLANT"?

•

•

A "mini-transplant" is also called a non-myeloablative or reduced-intensity transplant. It is a type of allogeneic transplant. This approach is being studied in clinical trials for the treatment of several types of cancer. These include: Leukemia.

70

• • • •

•

Lymphoma.

Multiple myeloma.

Other cancers of the blood.

A mini-transplant uses lower, less toxic doses of chemotherapy and/or radiation to prepare the patient for an allogeneic transplant. The use of lower doses of anti-cancer drugs and radiation eliminates some, but not all, of the patient's bone marrow. It also reduces the number of cancer cells. It also suppresses the patient's immune system to prevent rejection of the transplant.

Unlike traditional BMT or PBSCT, cells from both the donor and the patient may exist in the patient's body for some time after a mini-transplant. Once the cells from the donor begin to engraft, they may cause the graftversus-tumor (GVT) effect and work to destroy the cancer cells that were not eliminated by the anticancer drugs and/or radiation. To boost the GVT effect, the patient may be given an injection of their donor's white blood cells. This procedure is called a donor lymphocyte infusion.

WHAT IS A "TANDEM TRANSPLANT"?

A "tandem transplant" is a type of autologous transplant. This method is being studied in clinical trials for the treatment of several types of cancer, including multiple myeloma and germ cell cancer. During a tandem transplant, a patient receives two courses of high-dose chemotherapy, one after another (sequential), with stem cell transplant. Typically, the two courses are given several weeks to several months apart. Researchers hope that this method can prevent the cancer from coming back at a later time.

HOW DO PATIENTS COVER THE COST OF BMT OR PBSCT? •

•

•

Advances in treatment methods, including the use of PBSCT, have reduced the amount of time many patients must spend in the hospital by speeding recovery. This shorter recovery time has brought about a reduction in cost. But BMT and PBSCT are complicated technical procedures. So they are very expensive. Many health insurance companies cover some of the costs of transplantation for certain types of cancer. Insurers may also cover a portion of the costs if special care is required when the patient returns home.

There are options for relieving the financial burden associated with BMT and PBSCT. A hospital social worker is a valuable resource in planning for these financial needs. Federal Government programs and local service organizations may also be able to help.

The National Cancer Institute's (NCI) Cancer Information Service (CIS) can provide patients and their families with additional information about sources of financial assistance (see below).

WHAT ARE THE COSTS OF DONATING BONE MARROW, PBSC'S, OR UMBILICAL CORD BLOOD? •

•

Persons willing to donate bone marrow or PBSC's must have a sample of blood drawn to determine their HLA type. This blood test usually costs $65 to $100. The donor may be asked to pay for this blood test. Or the donor center may cover part of the cost. Community groups and other organizations may also provide financial assistance. Once a donor is identified as a match for a patient, all of the costs pertaining to the retrieval of bone marrow or PBSC's is covered by the patient or the patient's medical insurance.

A woman can donate her baby's umbilical cord blood to public cord blood banks at no charge. But commercial blood banks do charge varying fees to store umbilical cord blood for the private use of the patient or his/her family.

WHERE CAN PEOPLE GET MORE INFORMATION ABOUT POTENTIAL DONORS AND TRANSPLANT CENTERS? The National Marrow Donor Program® (NMDP) is a federally funded nonprofit organization. It was created to improve the effectiveness of the search for donors. The NMDP maintains an international registry of volunteers willing to be donors for all sources of blood stem cells used in transplantation: • • •

Bone marrow.

Peripheral blood.

Umbilical cord blood.

71

The NMDP Web site contains a list of participating transplant centers at http://www.marrow.org on the Internet. The list includes descriptions of the centers as well as their transplant experience, survival statistics, research interests, pre-transplant costs, and contact information.

National Marrow Donor Program: www.marrow.org

72

Patient Guide

Food Services The Gathering Place Café – Located on the first floor of the Cancer Institute, the café offers Starbucks beverages, salads, sandwiches, vegetarian choices and other selections for the health-conscious diner. Open 7 a.m.-5 p.m. Monday-Friday.

Outpatient food services – This area located on the first floor of the Outpatient Center offers limited hot and cold selections, drinks and snacks. Limited seating available. Open 7 a.m.-3:30 p.m. Monday-Friday.

UAMS cafeteria – The UAMS cafeteria is on the ground floor of the Central Building and serves a large variety of hot and cold selections. Open 6:30 a.m.-7:30 p.m. Monday-Friday.

Lobby Café – This café in the hospital lobby offers sandwiches, pizza, snacks, pastries and drinks. Open 24 hours a day, seven days a week.

Additional quick-service and seated dining areas also are located in the Institute on Aging, College of Public Health and Central Building.

Gift Shop The Cancer Institute gift shop is located on the first floor and offers gift items, postage stamps, cards and snacks. The gift shop is operated by the Cancer Institute Auxiliary, and all proceeds benefit programs for patients. Hours are 8:30 a.m.-3:30 p.m. Monday-Friday.

ATMs ATMS are available in these locations: • Cancer Institute (first floor) • Ward Tower (ground floor and first floor) • Central Building (ground floor and first floor)

Various banks are located on Markham Street near UAMS. 73

74

Supportive Care Social work Cancer affects more than just the physical body. It also affects other aspects of life, including work, leisure time, relationships and families as well as personal thoughts and feelings.

Sometimes handling the emotional parts of the journey can be as challenging as the physical parts, and the journey can become easier knowing you are not traveling alone.

The Cancer Institute Social workers are available to you and your family at any time during your treatment. Even if you have plenty of support, you may at times find it helpful to talk with someone other than your family and friends.

Support Groups meet during the week. The Leukemia, Lymphoma and Myeloma support group meets every Wednesday from 5-6:30 at the Family Home and Cancer Support Center, Located at 4300 West Markham (Across from UAMS on the corner of West Markham and Rose street.) For more information on this support group please call 501-686-8145.

The Little Rock Blood Cancer Support Group meets on the 1st Tuesday of every month at the American Cancer Society, 901 N. University Ave., Little Rock, AR 72205 - this is a support group for adult patients and their caregivers who are coping with blood cancers. This support group is co-sponsored by the Cancer Institute, the Leukemia and Lymphoma Society, and the American Cancer Society, for more information please call 501-603-1612 Through resource and referral counseling we can assist with housing arrangements for the long or short term.

Advocacy is another service social workers offer-doing whatever it takes to help ensure that things are running smoothly and that your needs are being met.

Inpatient and outpatient social workers are located on 5B-506 of the Central Building. The phone numbers are:

Inpatient Social workers - (501) 603-1612 Outpatient Social Workers- (501) 686-8145

Pastoral Care Chaplains are available 24 hours a day, seven days a week for your spiritual needs. You may call the chaplain’s office at (501) 412-9340 during business hours or ask a staff member to contact them. An interfaith chapel in the Patient Support Pavilion on the first floor of the Cancer Institute is open for quiet meditation from 8 a.m. - 4:30 p.m. Monday - Friday.

Housing If you are in need of a place to stay during cancer treatment, several options are available. Call (501) 603-1612 or visit the Department of Social Work in the Patient Support Pavilion for information. For a list of nearby hotels, visit www.cancer.uams.edu/housing.

• •

Low-cost housing is available for those who qualify financially.

Campsites at Maumelle Park are designated for long-term patients and maintained by the U.S. Army Corps of Engineers.

75

Patient Support Pavilion Most patients find that cancer is easier to confront and handle when they know the facts about the disease and its treatment. The Patient Support Pavilion provides information and education for patients and their family members in a comfortable and inviting location.

Monday-Friday 8 a.m.-4:30 p.m.

Winthrop P. Rockefeller Cancer Institute, First Floor 501-686-5578 Visit for the following conveniences/services: • • • • • • • • • • • •

A quiet family room for resting between appointments and making private phone calls • Kristen J. Madsen Wig Boutique Wifi Relaxation Room with guided imagery sessions on a variety of topics to assist in relaxation, stress reduction and dealing with the various aspects of a cancer diagnosis Look Good … Feel Better makeovers available free to any woman in cancer treatment Cell phone chargers and disposable ear buds Classes for patients and caregivers Interfaith chapel Business Center with Internet access, fax machine and copier Brochures and booklets about the types of cancer and treatment options Assistance in accessing online medical journals Information about cancer prevention Books for use by families or community groups

Relaxation Room A Relaxation Room is available for patients and caregivers in need of quiet place to rest while visiting the Cancer Institute. The Relaxation Room is located in the Patient Support Pavilion on the first floor and includes comfortable, reclining chairs and privacy screens.

Digital Guided Imagery Digital guided imagery sessions are now available for patients and caregivers in the Patient Support Pavilion. To listen to a session, visit the relaxation room in the pavilion on the first floor from 8 a.m.-4:30 p.m. Monday-Friday. Disposable ear buds are available.

Guided imagery is a visualization technique that helps participants focus on positive images to promote healing of their bodies. Guided imagery leaders teach participants how to relax and help them build detailed, positive images in their minds. It is used to promote relaxation, reduce stress and help the mind influence the body in positive ways.

The following sessions are available and are led by psychotherapist, author and guided imagery pioneer Belleruth Naparstek: • • • • • • • • • • • • • • • • • • • • • •

Anger and Forgiveness Bone Marrow & Stem Cell Transplantation Caregiver Stress Chemotherapy Ease Grief Ease Pain Fatigue Fight Cancer General Wellness Healthy Immune System Heartbreak, Abandonment and Betrayal Hospice and Palliative Care Optimizing Chemotherapy Panic Attacks Radiation Therapy Relaxation and Wellness Relieve Depression Relieve Stress Spiritual Guide Stop Smoking Successful Surgery Unlocking Intuition

There is no scientific evidence that these techniques can cure any disease. Funding for this program is made possible through a grant from the Winthrop P. Rockefeller Cancer Institute Auxiliary.

Behavioral Medicine Program The treatment decision of a stem cell transplant or bone marrow transplantation is challenging and can often be confusing. The goal of the Behavioral Medicine Program is to help our patients and their families have the best quality of life throughout their treatment plan and long-term-recovery.

Clinical Services: •

Managing stress and enhancing quality of life: Cancer is sufficiently taxing that even patients and family members who cope well can benefit from appropriate education and support, as a routine part of comprehensive care. Services are offered to improve coping and daily activity, enhance support, and teach mind-body skills (such as relaxation, meditation, biofeedback) to help manage an aggressive course of treatment.

•

Consultation and treatment for psychological difficulties: this program provides evaluation and individual or family therapy for problems commonly associated with cancer such as anxiety, depression, MRI or procedural related phobias, and family concerns.

•

Symptom management::More specialized services are available to assist with pain management, nausea, fatigue, hot flashes, or other treatment toxicities.

•

Health promotion and wellness:: A serious illness often prompts patients to consider their future health and evaluate important lifestyle changes. Wellness services help patients recognize and reduce behavioral risk factors, improve self-care and promote health. These services include a focus on exercise, nutrition, relaxation training reprioritizing and fun.

•

Smoking Cessation: Programs available that offer behavioral approaches to quitting and staying quit are available.

How to reach us: The Behavioral Medicine Program is located on the 7

th

floor of the Winthrop P. Rockefeller Cancer

Institute.

Care Partner Tips We all depend on you, both family and friends, who sign on to partner with our patients and with us in giving excellent care-and in helping assure that we provide our best. Since most of our treatment at the Cancer Institute occurs in the outpatient setting, the role you play as care partner is very important. WE, and our patients, can’t do it without you.

Care partners are such an integral part of our approach to treatment and care. Your well-being and health are also very important to us. We know that in giving care it can become easy to put your own needs and comforts on the back burner, or ignore them altogether We want to remind you of the importance of your role and give you a few tools to help you work through this experience with less stress and difficulty.

What does a care partner do?

Keep the schedule Helps the patient apply for patient assistance programs Leads the patient where they need to go Protects the patient from illness and injury Relays information Carries all the stuff Provides Comfort, both physical and emotional Checks Medication and gives the prescribed amount on schedule Serves as driver while you are in treatment Assists with housekeeping and hygiene Provides support and understanding Works in a moment of "ME" time when possible

80

About The Leukemia & Lymphoma Society Co-Pay Assistance Program The Co-Pay program offers assistance to patients in meeting their private insurance or Medicare premiums and co-pay obligations for prescription medications and allowable treatment costs.

Support for this program is based on the availability of funds by disease diagnosis. Payment amounts are subject to adjustment at any time based on the availability of funding.

Some frequent questions asked about the Co-Pay Assistance Program…  What are the requirements for the program? To be eligible for Co-Pay Assistance, you must • Have a household income that is at or below 500 percent of the U.S. federal poverty guidelines as adjusted by the Cost of Living Index (COLI). (These guidelines are available on the Co-Pay website, www.lls.org.copay.)

• Be a United States citizen or permanent resident of the U.S. or Puerto Rico and be medically and financially qualified • Have prescription insurance coverage • Have an LLS Co-Pay Assistance Program-covered blood cancer diagnosis confirmed by a doctor.  What diagnoses are funded by the program?

Co-Pay Assistance funds are currently available for the following diagnoses: • Chronic lymphocytic leukemia - assistance is available up to $2,500 (for applicants approved on or after 1/1/14) • Chronic myeloid leukemia - assistance is available up to $500 (for applicants approved on or after 3/13/15) • Lymphoma (Hodgkin and non-Hodgkin) - assistance is available up to $2,500 (for applicants approved on or after 1/1/14) • Mantle cell lymphoma - assistance is available up to $5,000 (for applicants approved on or after 12/13/13) • Myelodysplastic syndromes - assistance is available up to $5,000 • Myeloma - assistance is available up to $10,000

This list is subject to change, current information about available funding is located on the Co-Pay website, www.lls.org/copay.  Can I apply for the Co-Pay Program online?

Yes, a quick registration process allows patients and caregivers to easily submit Co-Pay applications within minutes, day or night www.lls.org/copaypatients.  Can my doctor’s office apply for me?

Yes, your doctor, treatment provider or pharmacy can apply for the program on your behalf either by calling the toll free number 877-557-2672 or they can submit an application online 24 hours a day. www.lls.org/copayproviders  How do I know if I am approved in the program?

All applicants will receive a “Determination” letter approximately 7-10 business days after the application is received in the Co-Pay Program. Approved patients will be sent a Letter of Approval with directions on how to request assistance from the program.

81

 How much of the patient’s bill will the Co-Pay Assistance program cover?

The Co-Pay Assistance program can provide benefits for up to the maximum assistance amount per coverage period for approved charges: private/public insurance or Medicare premiums or co-pay obligations for approved prescription medications.  If a patient does not have insurance can I bill the Co-Pay Assistance program?

No, the Co-Pay Assistance Program is not an insurance or prescription coverage plan, it is a program designed to help insured patients meet their co-payment and or insurance premium obligations. Patients must have prescription insurance to qualify for this program.  Can I get assistance for my prescribed devices and blood work?

Unfortunately no, prescribed devices such as eyeglasses, wheelchairs, etc., and diagnostic procedures such as: PET/CT/MRI scans, X-rays, Laboratory services including blood work, biopsies, etc., are not covered in this program.  Can I submit bills for previous years?

No, the Co-Pay Assistance program is based on a 12 month coverage period. Only services that occurred during the coverage period are eligible for assistance. For example, a coverage period began 07/01/09 and ended on 06/30/10.  What if I change my doctor or pharmacy?

Patients enrolled in the Co-Pay Assistance Program have complete freedom to choose doctors, providers, suppliers, insurance companies and/or treatment related medications. Patients are free at any time to make changes in any of the above without affecting their continued eligibility.  Is the assistance I receive from the Co-Pay Assistance program taxable?

Expense reimbursements received by patients from the LLS Co-Pay Assistance Program are generally not taxable. However, we recommend patients consult with a tax professional for a final determination.  I’m not sure if I qualify for the Co-Pay Assistance Program. How can I get more information?

To apply or obtain more information about the Co-Pay Assistance Program, please call 1-877-557-2672 to speak with a Co-Pay Specialist who will provide personalized service through the application process. You may also email your request for a Co-Pay Specialist to contact you regarding the program at copay@lls.org.

The Leukemia & Lymphoma Society Co-Pay Assistance Program P.O. Box 12268 Newport News, VA 23612 Voice Toll Free: 877-LLS-COPAY (877) 557-2672 Fax Toll Free: 877-COPAY-FAX (877) 267-2932 www.lls.org/copay copay@lls.org

82

Welcome to The Leukemia & Lymphoma Society Co-Pay Assistance Program Co-Pay applications can be submitted online through this secure web-based process or by calling the CoPay Center at (877) 557-2672.

We've created this site as a convenient alternative for you to apply to the LLS Co-Pay Assistance Program. The online application process should take approximately seven minutes to complete.

You'll need the following information and documents before you begin the online application: • • • • • •

Your Social Security number and date of birth The name of your diagnosis The name of your insurance companies plus group, policy and ID number, as well as Medicare/Medicaid The name of your pharmacy and its phone and fax numbers The name of your physician and his or her phone and fax numbers Financial documents such as your most recent tax returns, 1099s, Social Security, benefit statements or W-2s Before you begin the application process, please read the following information.

Registration and Application Process If this is your first time visiting the Co-Pay Assistance Online Patient Portal, you'll need to register before you can start the online application process.

You must have a valid email address to register. Once you submit your registration, you'll receive an email (typically within five minutes) directing you to a website to create your password. You can then begin entering your application information.

Entering and Submitting the Application Please note that only one application may be completed per patient. After you complete the application, you must identify yourself as either the patient or someone submitting the application on behalf of the patient. A comments section is available to include any additional information or special circumstances relevant to the application.

Option 1: Print the application, sign it and mail or fax it back to the Co-Pay Program, along with the required documentation.

81

Option 2: If you are a healthcare provider or caregiver, or if the patient does not have printing capabilities, you can request that the application be mailed to the patient. The patient can then sign the application and return it to the Co-Pay Program by mail (pre-posted envelope is provided), or by fax, along with the required documentation.

The online portion of the completed application is uploaded to the Co-Pay Database. It takes 24 hours to upload. The Co-Pay staff then faxes the Physician Form to the doctor. Please make sure that you provide the doctor's fax number.

Email Confirmation Within approximately five minutes after submitting the application on the website, a confirmation of receipt will be sent to the email address you provided during registration.

Application Review Submitting the application online doesn't guarantee acceptance in the program. All applications must be completed in their entirety before they can be reviewed and must include: • • • •

Signed patient application Household financial information Physician form A copy of the patient's insurance card

The Co-Pay team will review all your documents and inform you via mail of your approval status.

Support for this program is based on the availability of funds by disease diagnosis.

For More Information For information or questions regarding the Co-Pay Assistance program application contact: 1-877-LLS-COPAY or 1-877-557-2672 The Leukemia & Lymphoma Society Co-Pay Assistance Program P.O. Box 12268 Newport News, VA 23612 Fax: (877)-COPAY-FAX or (877) 267-2932 copay@lls.org www.lls.org/copay

82

Available Funding Support for this program is based on the availability of funds by disease diagnosis. LLS CoPay Assistance funds are available for the following diagnoses: • • • • • • • •

Acute lymphoblastic leukemia – fully subscribed and currently not accepting new applications Chronic lymphocytic leukemia - assistance is available up to $2,500 (for applicants approved on or after 1/1/14) Chronic myeloid leukemia - fully subscribed and currently not accepting new applications Lymphoma (Hodgkin and non-Hodgkin) - assistance is available up to $2,500 (for applicants approved on or after 1/1/14) Mantle cell lymphoma - assistance is available up to $5,000 (for applicants approved on or after 12/13/13) Myelodysplastic syndromes - assistance is available up to $5,000 Myeloma - assistance is available up to $10,000 Waldenström macroglobulinemia - assistance is available up to $5,000 (for applicants approved on or after 5/11/15)

**As a non-profit organization, we rely on the generosity of our sponsors. Program continuation is dependent on the availability of funds and the program could be modified or discontinued at any time if funding is limited or no longer available. Please visit our website in the future to become aware of new funding.** Eligibility Requirements To be eligible for Co-Pay Assistance, you must: • • • •

Have a household income that is at or below 500 percent of the U.S. federal poverty guidelines as adjusted by the Cost of Living Index (COLI).

Be a United States citizen or permanent resident of the U.S. or Puerto Rico and be medically and financially qualified Have prescription insurance coverage Have an LLS Co-Pay Assistance Program-covered blood cancer diagnosis confirmed by a doctor (see covered diagnoses listed above)

Contact Information The Leukemia & Lymphoma Society Co-Pay Assistance Program P.O. Box 12268 Newport News, VA 23612 Email: copay@lls.org Toll Free Phone: (877) 557-2672

Fax: (877)-COPAY-FAX or (877) 267-2932

83

Financial assistance may also be available to you through The Leukemia & Lymphoma Society's CoPay Assistance Program.

LLS is part of the Cancer Financial Assistance Coalition (C-FAC), which helps cancer patients manage their financial challenges by: •

Helping members communicate and collaborate Educating patients and providers about resources and links to other organizations that provide information about C-FAC's resources Advocating for cancer patients regarding the financial burdens of cancer care

• •

Help for Prescription Drug Costs For people with cancer, medication coverage can also become quite costly, and a prescription drug plan, if you have one, may not cover all costs for the drugs you need.

Insurance companies, states and hospitals all have their own “formulary” — a list of prescription drugs they approve for coverage. A formulary typically includes procedures that enable access to nonformulary drugs when they're documented as medically necessary. A plan sponsor must have a process in place to grant exceptions. If the plan denies an exception, you can appeal the decision through an established process. You may also be able to negotiate with your insurance company to get a particular drug added to its formulary.

If you don't have adequate insurance to cover the cost of your prescription drugs, talk with your doctor or social worker about how to finance treatment and explore the following resources that may be able to help with your expenses: •

•

• •

Patient assistance or prescription assistance programs, sponsored by major pharmaceutical manufacturers, provide free or reduced-cost drugs if you can't afford them. Visit RxAssist for a directory of patient prescription assistance programs and information on obtaining affordable or free drugs.

Prescription savings programs, such as Together Rx Access, often offer a free prescription savings card if you're not eligible for Medicare, don't have prescription drug coverage and meet certain household income levels. Most cardholders save between 25 and 40 percent on more than 300 brand-name prescription products.

State programs such as the National Association of Counties provide ways to cut drug costs.

Clinical trials for promising cancer drug therapies may offer free or reduced cost prescriptions. Check with your healthcare provider, insurance representative or study contact. Coverage varies significantly depending on the health plan and clinical trial. You may be able to gain access to investigational drugs through "Expanded Access" or "Special Exception/Compassionate Exemption" programs, sometimes offered by drug companies.

Co-pay assistance programs and foundations, such as the LLS Co-pay Assistance Program, help pay costs for prescription drug insurance plan premiums or co-pay obligations for specific diseases. LLS also provides information about other co-pay assistance programs. Call (877) LLSCOPAY (877-557-2672).

The Partnership for Prescription Assistance (PPA) brings pharmaceutical companies, doctors, other healthcare providers and patient advocacy and community groups together to help eligible patients who don't have prescription drug coverage get their medicines for little or no cost. The partnership offers access to many public and private patient assistance programs, including programs offered by pharmaceutical companies.

•

•

84

NeedyMeds is a central source of information for people who can't afford medicine or other healthcare expenses. Programs such as assistance for specific diseases and conditions, application assistance, state-sponsored programs and Medicaid sites are available.

PhRMA (Pharmaceutical Research and Manufacturers of America) maintains a directory of patient assistance programs for prescription drugs. Through these programs, PhRMA member companies supply free medicines to millions of eligible low-income patients. Call (800) 762-4636.

Medicare has information about public and private programs that offer discounted or free medications as well as Medicare health plans that include prescription coverage.

•

•

•

Help for Stem Cell Transplantation Costs Stem cell transplantation is expensive and may not be fully covered by health insurance. In addition to treatment cost, you may have significant expenses for travel, lodging, meals, childcare, donor testing and aftercare. You may need to use multiple strategies to secure enough funding to cover these costs, such as: • • • • •

Working closely with the transplant center to obtain maximum reimbursement from your insurance company Negotiating with healthcare providers to reduce or waive medical fees or adjust the payment schedule in cases of financial hardship Applying for grants and financial aid from employers, labor unions, community service agencies, religious and fraternal groups or cancer support organizations Forming a committee of volunteers to conduct fundraising events, sales, raffles, canister collections and letter-writing and publicity campaigns Cashing in on benefits from life insurance policies through "viatical settlements" (selling a life insurance policy at a discount to someone else who will collect the face value when the policyholder dies) or accelerated benefits, which can provide cash payouts to seriously ill policyholders — but be sure to discuss this strategy with a financial adviser first

These nonprofit organizations provide information, support, financial support services and patient advocacy for transplant candidates, recipients and their families: • •

Blood & Marrow Transplant Information Network (BMT InfoNet), (888) 597-7674 National Foundation for Transplants, (800) 489-3863

• •

National Marrow Donor Program, (888) 999-6743 ExploreBMT, (888) 999-6743

Related Links • Download or order The Leukemia & Lymphoma Society's free booklet, Cancer and Your Finances • Contact an LLS Information Specialist for more information

Applicant’s Name: _________________________________ DOB: _____/_____/_________

The Leukemia & Lymphoma Society Gateway Chapter Gas Card Program - Application Form What is the Gas Card Program?

The Leukemia & Lymphoma Society’s (LLS) Gas Card Program is available for blood cancer patients to help with transportation/travel expenses so that they can travel to health care providers for their blood cancer related treatments.

A one-time $100 gas card, per patient is available for qualified patients.

Program Criteria: 1. Be a US citizen or permanent resident.

2. Have a confirmed diagnosis of blood cancer.

Assistance is based on available funding and the program may be discontinued at any time, without notice. The application must be completed in its entirety, and must be signed by both the physician and the patient in the areas specified on the form below. See reverse side for physician signature line.

Patient Information Patient First and Last Name: _________________________________________________________________________ If patient is less than 18 years of age, please also provide parent/guardian first and last name: Address: __________________________________________________________________________ Apt. # _______ City/State/ZIP: ___________________________________________________________________________________ Country (if military): _____________________________ Email: ___________________________________________ Home Phone: ( ) __________________________ Work or Cell Phone: ( ) ____________________________ How did you hear about the Gas Card Program?

Doctor Nurse Social Worker Friend/Family Member Other (please specify): ____________________________________________________________________________ Gender: Ethnicity:

Male

Female

African American

Date of Birth: _____/_____/_________ Asian

Caucasian

Hispanic

American Indian

Other___________________

Patient Signature & Attestation By signing this form, I attest that the information provided on this form is, to the best of my knowledge, true and accurate. I further attest that if approved for a gas card, the funds will be used for treatment-related travel.

Patient/Guardian Signature _______________________________________________ Date: _____/_____/_________ Patient/Guardian Print Name: ______________________________________________ Applicant’s Name: _________________________________ DOB: _____/_____/_________

Health Insurance Information Do you currently have health insurance?

Medicare Part B: Medicare Part D: Other (if other, please specify)

Yes

No. If yes, please check which one :

Medicaid:

Health Exchange Plan:

Are you currently receiving assistance from the LLS Co-Pay Assistance Program?

Yes

Commercial:

No

Medical Information To be completed by the patient’s prescribing healthcare provider or designee. Please note, stamps or initials will not be accepted.

Patient Diagnosis/Subtype: ________________________________________________________________________ Date of Diagnosis: ___________________

Is patient in active treatment and/or ongoing follow-up?

Yes

No

Healthcare Provider Name: ______________________________ Hospital/Clinic: _____________________________ Desginee Name/Title: _____________________________________________________________________________ Address: ______________________________________ City/State/ZIP: _____________________________________ Phone: (

) __________________________ Healthcare Provider License #:

_______________________________

Healthcare Provider Signature: ___________________________________________ Date: _____/_____/_________

Gas Card Options LLS has a limited supply of gas cards and we will send the requested option as long as they are available. Please indicate if there is a specific gas card that you would prefer to receive based on the gas stations accessible in your community.

Mobil on the Run Valero Casey’s Please contact me about public transportation at _______________________ (Daytime Phone Number) This program is provided by The Leukemia & Lymphoma Society and is supported in part by a grant from Pfizer.

Return completed form to LLS, 1972 Innerbelt Business Ctr. Dr, St. Louis, MO 63114 or via fax (314) 590-2260. For more information regarding LLS, contact The Gateway Chapter at (314) 590-2230 or (800) 264-2873.

To speak to an Information Specialist about diagnosis and treatment options, resources, financial assistance or clinical trials, call 1-800-955-4572 (M-F 8 a.m. to 8 p.m.CST)

Patient Centered Care Tips Have a support system just for yourself. Seek out friends and family from home; support people from our clinic and/or the Little Rock community; our weekly support group; our Chaplaincy service; find a spiritual home here in Little Rock; use men health services provided by Social Work and Behavioral Medicine departments.

Take Time just for yourself. Getting enough sleep, eating well ,getting exercise, giving yourself time for things that give you pleasure-your favorite music or T.V. shown, eating out with friends, carving out time to spend on a hobby, getting a massage-whatever is pleasure or relaxation for you. Most people find it helps to take some kind of a break even a short one, from cancer every day.

Allow other people to help. Often Friends and family want to help but don’t know what to do. Give people specific tasks – or give them a choice of ways they can help, like bringing meals, shopping, mowing the yard, keeping the children, and dealing with insurance issues. This also lets other people feel they are a part of things.

When dealing with issues or needs like medication costs, call on experts to help.

Create a system to keep others informed and involved in your condition. Have daily updates on your voice mail, send group emails, have a friend be the one who communicates with others. This will free up your time and keep you from telling things over and over.

Create a system for tracking medical and other helpful information that works for you. Organize notebooks that include important phone numbers instructions and test results. Keep an ongoing list of your questions for the doctors and nurses. It is sometimes helpful to journal your thoughts and feelings as a way of following what’s happening with you.

Think of ways to keep a healthy relationship with your patient…and enjoy the relationship you enjoyed before the illness. Be aware of changes in the relationship and how they impact you both, and the family.

As you deal with the healthcare team, family members and friends, keep keys to communication and coping in mind. Be assertive in a polite way. Make sure your questions are answered and your needs are being addressed. Be flexible, patient and open-minded (which can be hard under stress). Be ready for changes, delays, surprises or setbacks and it will make them easier to deal with. The WILL happen! Know there are things beyond your control. Focus your energy and efforts on things that you can control and take things one step at a time.

Remember that one of the best survival tools is a sense of humor! It provides release. Laughter really is one of the best medicines!

As a care partner, you will add many duties to what is already a long list of daily responsibilities. Drop anything that you can-shift things to someone else if possible-even for a short time. Things have a way of getting on your list without you being aware of it. Any space you can create will help. Don’t expect too much of yourself! Just as our patient becomes tired during treatment, you will also be tired. Let yourself rest or catch a nap when needed.

There will be times when you feel alone, lonely, sad or depressed, fearful, confused, frustrated or angry, worried, guilty-any number of feelings. We hope you’ll use someone here or in your support system from home to talk with.

It’s better to move those feelings out so they don’t pull you down. And if you have them for a long time-or feel the stress of the situation never leaves you-please let us know know so we might help care for you.

95

Family Home and Cancer Support Center What is the Family Home?

The Family Home is a “home-away-from-home” for families whose child is in the neonatal intensive care unit (NICU) at UAMS and for patients who are receiving outpatient cancer treatments at the Winthrop P. Rockefeller Cancer Institute.

The Family Home was developed to provide a homelike atmosphere for families facing the stress of medical treatment for themselves or for their child. Families are able to share their concerns, experiences and fears with others facing similar circumstances.

Who is Eligible to Stay?

You can stay at the Family Home if:

   

You live outside a 50 mile radius of Little Rock Your child is being cared for in the UAMS NICU You are receiving outpatient cancer treatments at the UAMS Cancer Institute You have been referred by a hospital social worker, approved physician or nurse

How Do I Make a Reservation?

The Family Home only takes referrals. If you are interested in staying at the Family Home, please speak with your social worker or call us at (501) 978-2900. If rooms are available, we will handle your reservation.

What Amenities Are at the Home?

The Family Home is a 15 bedroom, non-smoking facility containing a volunteer-staffed cancer support center.

 One private bedroom with bath per family Bed and bath linens  3 fully equipped kitchens/dining areas Free laundry facilities  Living areas with TV and VCR Library/computer room How Much Does It Cost?

The cost is $10 per night. If you are unable to meet this request, talk with your social worker to make special arrangements. No family is ever turned away because of inability to pay.

When Can I Check In? Once your social worker has reserved a room for you, you can check in anytime between the hours of 9:00 a.m. and 7:00 p.m. No admissions will be accepted between 7:00 p.m. and 9:00 a.m.

What is the Address?

The Family Home is located at 4300 W. Markham, directly across from UAMS. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 2/11 Reviewed 5/14 96

97

UAMS Allogeneic Stem Cell Transplantation A Detailed Review of what to Expect Welcome!

Welcome to UAMS and the Winthrop P. Rockefeller Cancer Institute Stem Cell Transplant Service. This booklet was written to help you learn more about an allogeneic stem cell transplant, why you will need special care and what you and your family can do. Please read it carefully. The doctors and nurses will review this with you and answer your questions. All of your questions are important.

The Allogeneic Transplant Team Our Allogeneic Transplant Service works as a team. The doctor that you see in the clinic may not be the one who will take care of you while you are in the hospital. Transplant doctors rotate on and off the inpatient unit. They are often on for two weeks, but not always. During that time, they manage all of the allogeneic transplant patients 24 hours a day. At the end of the two weeks, another attending doctor takes over. While you are an inpatient, the inpatient attending will be in charge of your day-to-day care. However, if any major problems come up while you are in the hospital, the inpatient attending doctor will discuss them with your primary transplant doctor. Once a week, all of the attending doctors meet to discuss your progress.

Many people will be involved in your care on the inpatient unit. You will have a primary team of nurses. A nurse practitioner and a clinical nurse specialist may see you from time to time. You will see many doctors. Some will have finished their medical resident training and are doing specialized training in hematology. These are called fellows. You will also see doctors who are still in training. These are called interns and residents. The attending doctor supervises them. A case manager will help to plan for anything you need when you go home. A social worker will help you with everything from feelings of sadness or loneliness to financial concerns. Nursing assistants will help you bathe and dress. They will also check your weight and vital signs each day.

Once you are discharged from the hospital after your transplant, you will be followed closely in our outpatient department by your primary attending, nurse practitioners and ambulatory care nurses. They will monitor your recovery and administer medications, transfusions or fluids as you need them. At first, you will be seen frequently.

Over time the visits will be spaced farther apart. Your doctors and nurses are available by phone to help with any questions or problems that occur between visits.

Ongoing follow up care after transplant is very important to make sure you achieve the best possible health. At some point after your transplant, you may be referred to our survivorship nurse practitioner. The aim of this nurse practitioner is to assist your general recovery and manage the effects of cancer treatment and transplant. The survivorship nurse practitioner is part of the transplant team and works closely with your attending and nurses to ensure your recovery.

What Stem Cells Are Blood-forming stem cells are cells that will grow or mature into different blood cells. They make all of your red blood cells, white blood cells and platelets. Red blood cells carry oxygen throughout your body, white blood cells fight infection, and platelets help your blood to clot and control bleeding. Stem cells are also known as pluripotent or progenitor cells.

98

Where Stem Cells Are Found The cells used in stem cell transplants come from one of three sources: • • •

Bone marrow Your blood stream – these are called peripheral blood stem cells The umbilical cord and placenta of newborn babies.

Bone Marrow Stem Cells Bone marrow is a spongy substance found inside larger bones. It resembles blood and is a rich source of stem cells.

Stem cells can be taken from a donor’s bone marrow. This is called a bone marrow harvest. It is done with general anesthesia in the operating room. The donor usually goes home the same day of the procedure.

Peripheral blood Stem Cells Stem cells may also be found in the bloodstream. Before stem cells are collected from the bloodstream, the donor is given a growth factor to stimulate the bone marrow to make more stem cells. Usually, this drug is G-CSF. Other names for G-CSF are Neupogen and filgrastim. The donor takes this medicine by injection. Some of the new stem cells will leave the bone marrow and move into the bloodstream. The nurse will teach the donor how to give the injection and tell him or her how often it must be done. After a scheduled number of doses of G-CSF, the donor has the stem cell collection.

The stem cell collection process is similar to donating blood. The donor has an intravenous (IV) line in each arm.

Blood is removed from one arm, put through a blood filtering machine, which removes the stem cells, and then returned to the donor through the IV in the other arm. This is called apheresis. Umbilical Cord Blood Stem

Cells Umbilical cord blood is another source of stem cells. At birth, the cord blood is collected from the umbilical cord and placenta and taken to a cord blood bank. It is tissue-typed, processed, and stored frozen until needed for a transplant.

Cord blood from one infant provides a limited amount of blood stem cells. It is sometimes not enough for adult or larger patients, who may need more stem cells. In this situation, we will frequently use two cord blood units from two different babies. Both cord blood collections will be infused on transplant day.

What an Allogeneic Stem Cell Transplant Is An allogeneic stem cell transplant replaces your stem cells with new, healthy ones from a donor. “Allogeneic” means that the stem cells come from a donor other than yourself. You will have chemotherapy, radiation therapy, or both to kill your cancer and suppress your immune system. This will damage your normal bone marrow. You will then receive the transplant of the donor stem cells. They are given into a vein, usually through your central venous (IV) catheter. They may be infused from a bag, like a blood transfusion, or from a large syringe attached to your catheter.

This will take place in your hospital room.

Stem cell transplants are used to treat many diseases. These include leukemia, lymphoma, myeloma, aplastic anemia, other tumors, and immune deficiencies that are present from birth. The care you need before a transplant depends on your disease. Your doctor will tell you why a transplant is used, why you cannot use your own stem cells, and what treatment plan is best for you.

The Donor Not everyone can be your donor. The right donor is someone whose tissue type most closely matches yours. Tissue typing is based on your human leukocyte antigens (HLA). These are found on the surface of your white blood cells.

99

They are important for immunity because they help your body recognize your own cells so they do not attack them. If foreign cells enter your body, your white blood cells will see them as foreign and will mount an attack to get rid of them.

A person with close HLA match is most often a brother or sister. Family members will have a blood test to see what tissue type they have. The person whose tissue type is most like yours is chosen to be the donor. If no one is a close match, your doctor will help you start a search with a donor registry, cord blood banks, or both. The donor gives stem cells for the transplant and may also be needed to donate platelets after the transplant.

People who are not related can have a close match by chance. If you do not have a family member with a matching tissue type, we look for an unrelated adult volunteer donor or cord blood units. The National Marrow Donor Program has millions of people registered who have had their blood typed for this purpose. However, the search for a donor may take weeks or even months to complete. If you will need stem cells from someone who is not related to you, your doctor will give you a more detailed explanation.

Myeloablative Transplant versus Non-Myeloablative Transplant There are two approaches to treatment before an allogeneic transplant. One is called myeloablative. In this approach you receive high doses of chemotherapy with or without radiation. These treatments aim to kill your cancer but also kill (myeloablate) all stem cells in your bone marrow. The donor stem cells will then replace the ones killed by the treatment. This form of treatment is very intense and it may not be suitable for all patients.

Another approach involves a less intense treatment. It uses lower doses of chemotherapy with or without low doses of radiation. It also includes drugs that suppress your immune system. This type of transplant is called a nonmyeloablative. It aims to keep you immune system and stem cells in check rather than destroying them. This will still allow the donor stem cells to “engraft� in most cases.

Your doctor will consider many factors when choosing which type of transplant is best for you. These include your disease, other treatments you have received, and you general health status. Your doctor will discuss these factors in detail with you.

100

Before Your Treatment Starts Diet There is no special diet preparation before a stem cell transplant. You do not have to take a lot of vitamins. If you are under- or overweight, try to get to your normal weight before you come into the hospital. Your doctor can guide you with this effort.

Preserving Fertility Many cancer treatments can affect fertility, the ability to have children. You may be infertile from the treatment you have already received. If not, you will most likely be infertile after your transplant treatment. This will have no effect on your ability to have sex. However, some patients report that they have a decrease in their sex drive.

There may be options for you to preserve your fertility before your transplant treatment begins. This must be done before you come into the hospital.

Men can preserve their fertility by sperm banking. This involves collecting, freezing, and storing sperm. Generally, three collections are needed. There are sperm banks throughout the U.S. where you can do this. To get more information about sperm banking, ask your doctor or nurse for our book “Fertility and Cancer Treatment: Information for Men,” and for our list of local sperm banks.

There are also options for women to preserve their fertility. This involves taking hormones for about 10-14 days and collecting eggs. The eggs may be fertilized with sperm to create embryos. The embryos or eggs are then frozen and stored. Because of the extra time this takes, you must discuss this with you doctor. To learn more about egg or embryo freezing, ask your doctor or nurse for our book “Fertility and Cancer Treatment: Information for Women,” and for our list of local fertility specialists.

Radiation Simulation If you are going to have radiation as part of your treatment, you will meet with the radiation therapy team before you are admitted. You may also have a CT scan or PET scan or both to plan your treatment. You will also have a planning session called simulation. During this session, several x-rays are taken along with measurements of your chest. These are used to make lead shields. Your lungs are very sensitive to radiation and the shields will be used to protect them during some of the treatments.

Dental Exam You will have a dental exam. Decayed teeth and gums can cause serious infections in patients being treated with high doses of chemo or radiation. We must be sure that anything that could cause an infection in your mouth is fixed before your transplant. For example, you may need cavities filled, loose fillings replaced, or gum disease treated. Mouth care will be very important for the entire time you are in the hospital. We have an oral health clinic at UAMS who can assist you if you do not have a family dentist.

A Central Venous IV Catheter/Central Line A central venous IV catheter is an intravenous (IV) line (Central line) that can stay in place for many months.

Hickman, Cook, Quinton catheters are examples of central venous IV catheters. You will need to have one of these because fluids, medicines, blood products, and stem cells are given through it. Most, but not all, blood samples can also be drawn from the catheter. Central venous catheters are usually placed the day of admission or several days before. Some are removed before discharge. However, some patients go home with the catheter in place. If you

go home with it, your nurse will teach you, a family member, or both, how to care for it.

101

Tests Before your treatment starts, you will have some tests done. These will tell us how your body is functioning and what the status of your cancer or bone marrow disease is. We will use the test results to watch for any changes during treatment. You will have some, or possibly all of the following tests:: • • • • •

Chest x-ray Blood tests Urine test A pregnancy test, if appropriate Electrocardiogram (EKG), echocardiogram (ECHO), MUGA scan – These tests tell us how your heart is functioning.

• •

Pulmonary function tests (PFTs) – These are breathing tests to see how well your lungs work.

CT or PET scan – These scans may be used to see where tumors are in your body, to plan your radiation treatments, or both.

Bone marrow biopsy – This gives us a sample of your bone marrow. It will tell us about the state of your blood cells. It is done before your transplant, three to four weeks after your transplant, and then every three months for the first year. The timing may vary.

Lumbar puncture (spinal tap) – This lets us check for abnormal cells in your spinal fluid. A small needle is inserted through your back and a small amount of fluid is withdrawn. A lumbar puncture is only done for certain types of leukemia.

•

•

Your doctor or nurse will explain to you any other tests you may need.

102

Admission Day Go to the Admission Center on the first floor of the Ward Tower – next to the Lobby Café. After the admission process, an escort will take you to the transplant unit. When you get there, you will meet members of your transplant team. The team has doctors, nurses, nurse practitioners, and clinical nurse specialists. Other members of the team that you will meet are the social worker, the psychiatrists, dietitian, chaplain, nursing assistants and unit secretaries.

Radiation Therapy (RT) Radiation therapy may be part of the preparation for your transplant. Small doses of radiation will be delivered to your whole body, Total Body Irradiation (TBI) or to the parts of your body that have lymph nodes (TLI). These doses are given two to three times a day over several days. They are called “fractionated” treatments because the whole dose is divided up. Each treatment takes from 10 to 30 minutes. If you are male and have leukemia or lymphoma, you may have a boost to the testes. This is done to destroy cancer cells that might be hidden there.

You may also need a boost to other parts of your body. The treatment depends on the disease you have. Your transplant doctor and the radiation oncologist will explain the details of your treatment plan.

Having a radiation treatment is something like having an x-ray. The treatment does not hurt. Do not wear any jewelry during treatments. The metal may change the radiation dose to that area.

You and your clothes do not become radioactive during or after the treatments. You cannot pass the radiation to other people.

Stop using any creams, lotions, deodorants, or oils (even lip balm) two days before you start radiation treatments.

Do not use them at all while you are getting radiation. You may use Aquaphor© at night.

Family members may go with you when you have your treatments. They must wait outside the treatment room.

The nurse will tell you more about how the radiation treatment is given and what you will do during treatment.

Chemotherapy Chemotherapy alone or combined with radiation therapy does two things:

• •

Helps treat your disease Prevents your body from rejecting the transplanted stem cells

Some people receive several chemotherapy drugs instead of chemotherapy and radiation. Your doctor will tell you which drugs you will get.

Side Effects of Radiation and Chemotherapy There are side effects to radiation therapy and chemotherapy. Possible side effects of this therapy include the following: 103

Bone Marrow Suppression Radiation and chemotherapy treatments kill both leukemia cells and normal cells in your bone marrow. Because the bone marrow produces your blood cells, your blood counts will be very low until the donor’s marrow begins to work. While you blood counts are low, special measures will be used to protect you from infection and bleeding.

Gastrointestinal Tract Symptoms Radiation and chemotherapy can make you feel sick when they are given. They also destroy normal cells lining the mouth and intestines. This may cause nausea, vomiting, and diarrhea during and after the treatments. You may also develop painful sores in your mouth and mild to severe pain in your throat and lower esophagus. These are temporary. You will be given anti-nausea and pain medicine when you need it. As your white blood cell count starts to increase, your mouth and throat will start to heal.

Hair Loss You will temporarily lose hair on your body and scalp. This begins about seven to ten days after you have finished your treatment. Until your hair grows back, it may help to wear a scarf, wig or hat. Your hair will start to grow back beginning about three months after the transplant.

The “Look Good….Feel Better”program has specially trained people to teach you how to use make-up to cover sallow skin and hide the loss of eyebrows. The program is offered at 1:30 p.m. on the third Monday of each month in the Patient Support Pavilion in the Cancer Institute. Call 501-686-5578 to sign up.

Sexual Function/Sterility Sterility is a side effect of both TBI and high-dose chemotherapy. It is highly likely that you will not be able to have children after your transplant. You will be able to have sexual relations. If you have any problems, tell your doctor.

There many causes and most problems can be helped. Your feelings about a cancer diagnosis and treatment can make you less interested in sex. Fatigue is also common after transplant. You may not have the energy to have sex when you are tired. Sometimes, physical problems interfere.

Women Your periods may become irregular or stop. While you are in the hospital, you will take medicine to stop your periods. This is because your platelet count will be low and you will bleed very easily. The medicine will be stopped when your platelets are high enough so that it is safe for you to have periods again. You may need hormone replacement after treatment.

Men After treatment, your sperm count may be much lower or you may not produce any sperm. If you want to bank your sperm, you MUST do it BEFORE radiation and chemotherapy. Ask your doctor, nurse, or social worker for details before your admission. Some male patients develop erectile dysfunction (impotence). If this occurs, please let you doctor know.

Difficulty with Concentration Some people tell us they have trouble concentrating after transplant. They complain that their attention span is short. Math may become difficult. This often improves over time, but some patients will not return to the same level they had before transplant.

104

Specific Side Effects from Radiation Radiation has some additional side effects.

Skin Reaction You may have a skin reaction that looks like a sunburn. Your skin will later become slightly darker than normal. This side effect can be greater if you are also getting certain chemotherapy drugs. It usually fades over several months.

Your skin may be dry after treatment. Use alcohol-free lotions, creams, or oils to help relieve the dryness. The radiation therapy nurses will tell you what to use during radiation. After your transplant, stay out of the sun as much as possible. When you are outside, protect your skin with a sunblock of SPF 30 or higher at all times.

Salivary Gland Symptoms The salivary glands are found on both sides of your neck and under your chin. These glands may become tender and swollen and you may have less saliva. The swelling will go down a few days after your radiation therapy. The decrease in saliva is usually temporary. In most cases, it improves after several months.

Cataracts Some patients develop cataracts months to years after TBI. These are often mild and do not need to be removed. If you develop dense cataracts, they can be removed surgically.

Secondary Cancers Some patients who have a transplant get another cancer later. Some of the treatments for you cancer can cause other types of cancer. Your risk depends on your age, your health, your family history of cancer, and other treatments you have had. Your transplant doctor can tell you more about your risk for getting a second cancer. Ask what regular screening checks you should have in the future.

Hypothyroidism Some patients have low thyroid function after TBI. You will have blood tests to check for this side effect. If you develop it, you will be given a thyroid hormone. You will need to take this pill once a day for the rest of your life.

Specific Side Effects of Chemotherapy Hemorrhagic Cystitis Certain drugs such as Cytoxan, can irritate the lining of the bladder. This may cause blood in the urine and painful urination. To help prevent this, you will receive large amounts of IV fluids, which will make you urinate often. Try to urinate at least every one to two hours on the days your receive Cytoxan. Your urine will be measured and checked for blood.

Coping with Side Effects We cannot predict which of the above side effects you will have or how severe they will be. Your may feel some of them just a little, or you may feel them a lot. Because of your treatments, there may be days when you feel very sick. We can give you medicine to try to help you feel better, so it is important to tell us how you are feeling. We need to work together to assure that you receive the best possible care. The Integrative Medicine staff is available to teach you relaxation methods. Some patients have found this helpful. You can go to the Patient Support Pavilion and participate in guided imagery sessions available from 8:00-4:30 Monday through Friday.

105

While You Are In Isolation You will be placed on protective isolation precautions to protect you from germs when you are admitted. A card telling visitors about the type of isolation will be placed on the door to your room. The door to your room must remain closed. All staff and visitors who go into your room must wear a mask, wash their hands, and put on gloves.

The mask and gloves will be in a box near the sink. You may have visitors every day while you are in the hospital, but they cannot have a cold or any signs of illness. No more than two people should visit at any one time. Your visitors should not eat in your room or use your bathroom. These precautions are in place until you go home from the hospital.

It is not necessary to sterilize things before they are brought into your room. You may bring photos, frames, or a pillow from home to make the room more comfortable. However, space may be limited and you do not want to have clutter in the room. The nurse can help you choose things best suited for isolation.

You may wear a hospital gown, but if you prefer, you may wear your own nightclothes or casual clothing. You may also have stuffed animals that can be laundered and new packaged games. You may not have fresh flowers or plants.

Weight and Vital Signs You will be weighed each day around 6am. Most weight changes during transplant hospitalization are due to fluid retention or loss. The inpatient team needs this information by the time they make rounds to make important treatment decisions. Your blood pressure, temperature, pulse, reparations, and blood oxygen level will be checked every four hours around-the-clock. No one likes being awakened at night, but these measurements are important. Any change may require a treatment change.

Exercise and Activity Once isolation begins, you may not leave your room unless you are going for treatment. However, activity is very important. Get out of bed at least twice a day and try to walk in your room every day to maintain your muscle tone and strength. Sit up in a chair as often as possible.

Your nurse will assist you with your daily activities if you need help. You may bring a laptop, books, games, etc. to help occupy your time. If you are a student, bring your books and assignments to keep up with schoolwork.

Eating Well Because chemotherapy and radiation therapy damage the lining of your stomach you may not feel well enough to eat anything during part of your hospital stay. To maintain your weight, you may need to receive nutrition through your IV. This is called TPN (total parenteral nutrition). The TPN mixture provides all the nutrients your body needs. Your progress will be checked daily, and changes will be made in the TPN mixture as needed.

Even if you are receiving TPN, you may try to eat and drink if your feel like it. Do not force yourself if you do not feel well. The dietician and nurse will talk more with you about which foods are best when you are having treatments.

After your gastrointestinal tract heals, the dietician can plan a diet for you. It will be based on the Low Microbial Diet booklet that will be given to you before your discharge. Your dietician will review it with you. Well-cooked, easily digestible foods make eating easier. Do not share your food or drinks with anyone.

106

You should not have any take-out foods while you are in the hospital unless they are cooked at home. Ask your nurse, dietician, or doctor about what kinds of foods your family and friends can bring you.

Mouth Care Mouth care is an important part of your care in which you can also participate. It must be done at least four times a day or more often if mouth sores appear. You can continue to brush your teeth with an ultrasoft toothbrush. Your nurse will show you how to do mouth care to help keep your mouth clean.

107

Stem Cell Transplant Day Once the chemotherapy and radiation treatments are completed, you will receive the donor’s stem cells.

They are given through your central venous catheter. They will travel through your bloodstream and into your bone marrow spaces where they begin to grow, making healthy blood cells. The nurse will check your temperature, blood pressure pulse, and oxygen level while you are receiving the stem cells. You will be in the hospital until your new stem cells start to work reasonably well. This takes about four to six weeks from the day of transplant.

Unmodified Stem Cell Transplant Allogeneic stem cell transplants can be modified or T cell depleted. In unmodified transplants, the stem cells are given without first taking out the T cells. Red cells or plasma may need to be removed before you receive the stem cells if you and your donor are not the same blood type.

The stem cells are given to you through your IV over several hours. This process is like a blood transfusion or unmodified stem cell transplants.

T Cell Depleted Stem Cell Transplant A T cell depleted stem cell transplant is one in which certain lymphocytes, known as T cells, are removed.

Your doctor may not decide that this type of transplant is best for you. If you are to have a T cell depleted stem cell transplant, you will receive it once the process or removing the T cells is complete. This takes 1224 hours, so you may receive the transplant either late at night or sometimes, the day after your donor has given the stem cells. The doctor will inject them directly into your central venous IV catheter from a large syringe. There are rarely any side effects.

Unrelated Stem Cell Transplant After the stem cells are obtained from an unrelated donor, they are immediately brought to UAMS Cell Therapy Lab. Here they are processed for an unmodified or a T cell depleted transplant.

Umbilical Cord Blood Transplant The cord blood cells are stored frozen. On transplant day, they will be thawed in the laboratory and brought to your room in a bag. They will be given through your catheter. Sometimes patients can feel sick to their stomach or get high blood pressure during the cord blood infusion.

Your doctor and nurse will discuss any questions or concerns you may have about the type of transplant you are going to receive.

108

Possible Complications after Your Transplant Some complications are possible after your transplant. Infection, bleeding, and anemia are some of the major ones that can occur while you are waiting for your blood counts to return to normal. In most cases there are steps that you and your care team can take to prevent, manage, and treat them.

Infection You will be at risk for bacterial, fungal, and viral infections for several months after transplant. They are a major risk in the early recovery period until your new marrow grows and makes white blood cells to fight infection.

Some infections will still be a risk while your immune system recovers during the first two years after your transplant.

Fever is one important sign of infection. If you develop a fever, a chest x-ray will be obtained and urine and blood cultures will be done. You will be given IV antibiotics to help your body fight the infection. Nearly all patients develop fever during the first two weeks after transplantation. Most infections are treated successfully with antibiotics.

Your doctors and nurses will try to prevent you from getting infections. You will likely be given drugs that are used to treat infections. For the transplant patient, they are also used to prevent them. You will receive antiviral medicines. These help prevent any viral infection you had in the past from coming back after the transplant.

Viral infections can include:

• • • • •

Cold sores Recurrence of genital herpes Shingles Cytomegalovirus Other infections affecting the lungs or gut

Bleeding Your platelet count will be low. Since platelets form blood clots, you will be at risk for bleeding. The mucous membranes of the nose, mouth, skin, and gastrointestinal tract are most commonly infected. You will have platelet transfusions if your count falls below 10,000 or if you have any bleeding.

Anemia When your red blood cell count is low, you may experience weakness and fatigue. Your nurse will assist you with your daily activities if you need help. You will be given red blood cell transfusion as necessary. These and all other blood products will be irradiated to prevent harmful side effects.

Organ Complication You may have complications in your kidneys, liver, lungs, or heart. These are not common, but they can be serious. You are at higher risk if you already have a medical condition in any of these organs. This is why we carefully evaluate your organ functions before the transplant.

Kidneys 109

Your kidneys filter your blood and make urine to send waste products out of the body. The chemotherapy you get before transplant can affect how well your kidneys work. This is temporary, but waste products may remain in your blood until your kidney function improves. It also means that your kidney will have more trouble getting rid of any drugs you are given. Your nurses will keep records of the amount of fluid you get. This includes what you drink and what you are given through your IV line. They will also write down how much urine you make. This will help the doctors know if you are beginning to have problems with your kidneys. You will also have blood tests every day to tell your doctors how your kidneys are working. If necessary, the doctors will adjust the doses of any drugs you are getting to decrease the risk to your kidneys.

Liver Your liver removes harmful substances from your body fluids, absorb nutrients, and produces bile. Bile helps you digest your food. Side effects on your liver include problems with digestion. A more serious problem is that the liver may no longer remove breakdown products of your body and you will become jaundiced. In some patients small blood vessels in the liver are injured. This is called Veno-occlusive disease or VOD. These vessels can then become blocked so that blood cannot flow. This can cause the liver to become enlarged and may damage liver cells. Fluid may fill the abdomen. Liver problems of this sort usually begin within the first three weeks after transplant. With rare exception, all patients receive a drug that helps to prevent clot formation in the liver. This drug is called heparin, and it is given through your venous catheter. If you have side effects in your liver, your doctor will discuss the treatment options with you in more detail.

Lungs Your lungs control breathing. Infections that affect the lungs may cause problems with breathing. Two problems that can occur during transplant are: • •

An infection causing pneumonia and Damage of your lungs from chemo and radiation

This most commonly occurs in the first few weeks after transplant and can be serious. You will have regular chest xrays while you are in the hospital. Your doctors and nurses will watch you closely for any signs of pneumonia. Tell them if you notice any change in your breathing. Do not ignore a cough or shortness of breath. Treatment depends on what causes the pneumonia.

Exercise your lungs. This may help to keep them clear. Your nurse will show you how to do deep breathing. You may also use an incentive spirometer. For this, you inhale deeply through a small tube to force a tiny ball to rise.

You will receive different kinds of medicines to prevent or treat lung infections. Your nurse will review your routine with you.

Heart Your heart pumps blood throughout your body. Certain chemotherapy drugs may have side effects that damage the heart. Your doctors will watch your heart function carefully while you are in the hospital.

Graft versus Host Disease T cells are white blood cells whose function is to attack foreign cells. They are responsible for starting GVHD. GVHD is an immune response of the T cells in the donor transplant (graft) against the patients hosts (body).

Graft versus Host Disease (cont.)

There is a chance that GVHD will develop when the new stem cells begin to ‘engraft’ or grow. A close match of HLA or tissue type between you and your donor helps lower the risk, but does not eliminate it. Other factors in GVHD are your age and the gender of your donor. Anyone whose donor is not and identical twin receives some type of prevention for GVHD. This prevention would include either removal of the T cells from the transplant that 110

causes GVHD, or drugs to prevent those T cells from causing GVHD. There are pros and cons to each method, and there are reasons that you would receive one or the other. Your doctor will discuss these with your before admission.

There are two kinds of GVHD, acute (early) and chronic (late and longer lasting). Acute and chronic GVHD were defined in the past in large part by their timing relative to the transplant. Now acute GVHD no longer occurs only within the first three months. That is because we have many treatments for transplants and many sources for donors. IT can develop later than that, but usually within the first year. Chronic GVHD usually occurs within the first year, but rarely before the first three months after transplant. It may not occur at all. The symptoms of either may be mild to severe. You may develop acute, but not chronic GVHD. You may develop chronic GVHD without having acute. Your may develop both. You may or may not be free of symptoms between acute and chronic. Most patients develop neither or at least milder forms that do not require ongoing treatment beyond two years.

Symptoms of acute GVHD can affect the skin, gastrointestinal tract, liver, or all of these organs. A skin rash may appear on parts or all of your body. You may have a yellow skin color (jaundice) and an enlarged liver. You may also have nausea, vomiting and mild to severe diarrhea.

Chronic GVHD often develops after the first 100 days, and usually within the first year after transplant. Symptoms may include skin rash or dry or thickened skin, loss of appetite and weight, diarrhea, dry mouth and sores in the mouth, dry eyes, hair loss, inflammation of the liver, loss of energy, or increased risk for infections.

GVHD can be mild or severe. It may slow the growth of the bone marrow. This means it will take longer for your immune system to function. It may affect one or more parts of the body. If you have it, your doctor will discuss the treatment plan with you. Mild cases of GVHD may be helpful for patients with active leukemia and lymphoma going into transplant. Return of this disease is lower in transplant survivors who had mild GVHD. That is because the donor T cells may attack any remaining cancer cells. Doctors are doing more research to learn how to maximize this anti-cancer effect. If your disease was in complete remission before transplant, you do not need the beneficial effect of GVHD.

Graft Failure or Rejection The transplanted cells sometimes do not grow up successfully inside your body. Graft rejection means your immune system rejects the new stem cells. The treatment you get before the transplant are aimed at preventing the graft rejection. The risk of rejection lasts about two to four weeks after the transplant. Occasionally, graft failure can be at a later time after your transplant if it occurs, one option may be to get more stem cells from your donor if they are available. This is called a ‘boost’. Your doctor will discuss various treatment options with you if this occurs.

Relapse A risk for many patients is that their disease can comeback. This can happen if the treatments you had before the transplant did not kill all of your cancer cells. Your risk is higher if you have your transplant when you are in an advanced stage of disease or are already in relapse.

111

The easiest way to prevent infection is by WASHING YOUR HANDS! Make sure that you are washing your hands frequently, as well as staff members, visitors, and family members.

112

Infection Precautions at a Glance Personal Hygiene Keeping yourself clean is very important. You will follow a shower routine that includes washing your skin daily. Start with your neck and move down your body. Wash your upper body, middle section, legs finally your feet. Pay extra attention to washing under your arms, groin, and perineum since these areas are moist and harbor germs. The perineum is the area between a woman’s vagina and rectum and a man’s penis and rectum. Shampoo your scalp with ordinary shampoo or soap once a day. Tell your nurse if you need help.

Germs are often carried on your hands or on objects that your touch. Wash your hands thoroughly with soap after you urinate or move your bowels. Also wash your hands before eating.

Keep the skin clean around your central venous IV catheter. The dressing that covers and protects it will be changed once a week unless it gets wet or dirty. To reduce the chance of infection, do not let the IV tubing touch the floor.

Oral Hygiene Take good care of your mouth throughout your hospitalization. Good mouth care can help prevent infections and other complication in your mouth. The nurse will work with you to plan your mouth care routine. Below are some of the guidelines to follow:

•

You will be given a mouthwash was to rinse your mouth before and after meals and at bedtime. Use only the mouth wash your nurse gives you. Do not use a commercial mouthwash or toothpaste because these products irritate and dry the mucous membranes of the mouth and throat.

•

When your platelet count is low, you may bleed easily. Use extra caution when brushing your teeth, and always use an ultra-soft tooth brush.

• • • •

Do not use dental floss Avoid licking your lips. This increase drying and chapping.

To keep our lips moist, apply a lubricant after mouth care and every two to four hours as needed.

If your mouth becomes sensitive, avoid hot, spicy, acidic, or coarse foods. You may prefer soft or liquid food served chilled or at room temperature.

•

Tell your nurse if you have any tenderness, discomfort or pain in your mouth. If your mouth becomes painful, your doctors will prescribe medicine to decrease the pain.

Protective Isolation You will be on reverse isolation precautions to protect you from outside germs. Once they are started, you will be on them until you are discharged.

Bleeding Precautions Since platelets work to prevent and control bleeding, you will have a higher chance of bleeding when your platelet count is low. The nurse will check your stool and urine routinely for blood. You should also:

•

Use an electric razor when shaving.

•

Follow safety measures to prevent falls or accidents.

•

To protect yourself while walking, wear slippers with rubber soles.

•

Do not use nail clippers or scissors

113

•

Tell the health care team if you have any signs of bleeding, such as a nosebleed from your gums, increased bruising, bright red or black stools, or blood- tinged vomit.

Transfusions Your blood count will be checked every day; the counts will be below normal until the stem cells start to grow.

You may need red blood cell and platelet transfusions. *Red blood cell transfusions are usually given when the hemoglobin falls below 7. *You will have platelet infusions when your platelet count falls below 10,000.

Basic Guidelines for Blood Donors If your friends and family would like to support your cause by donating blood or platelets they may call the Arkansas Red Cross at: 501-614-4400 The blood donation center is located at 401 S. Monroe Little Rock AR, 72205 Donating red blood cells takes about one hour and involves using one arm. An individual can donate blood again 56 days after his or her donation. Blood can be stored for 30 days.

It takes about 2 ½ hours to donate platelets. It usually involves only one arm. A donor can give platelets as often as twice a week it can be done 72 hours before or after a blood donation. Platelets can be stored for five days.

To schedule an appointment to donate blood or platelets, donors should call the Arkansas Red Cross at (501) 6144400.

Blood product or donors must: • Be 17-75 years of age.

• Weigh over 110 pounds or (50 kilograms).

• Not have signs of a cold or active allergy at the time of donation.

• Not have a history or any illness such as hepatitis, jaundice, cancer, etc.

• Call the donor room if they are taking any medication and wish to donate.

• Not take aspirin, or any product that contains aspirin-like drugs (ibuprofen, Motrin, Naprosyn, Anaprox, Advil, and Aleve) within three days before donating. Acetaminophen (Tylenol, Anacin 3) is acceptable

• Not drink alcohol eight hours before donating.

• Have a lighter meal before donating.

• Avoid fatty foods before donating.

It may take up to 18 months for your immune system to recover. With some patients, it takes even longer while some recover in six months. We will do blood tests to see how your immune recovery is progressing. These begin about two to three months after your transplant. The tests will tell us how many T cells you have and how well they are working. You will take medicine to prevent infection until we know your immune system can fight off infections. When that happens, you will most likely be given vaccinations to re-immunize you against some diseases. These vaccinations are similar to some of the vaccines you received as a child.

Stress and Anxiety We know that it can be frightening to have new treatments or to stay in your room for such a long time. Some transplant patients have told us that they feel bored in the room because “there’s nothing to do.” Others have 114

said, they are “tired of feeling sick” and “can’t wait to go home,” or they “are anxious and depressed.” It is natural to feel like this, and sometimes it helps just to talk about things. Please talk with your nurse, social worker, or doctor about your feelings. Psychiatrists are also available to talk to you and your family. They can advise the transplant team about medications for your emotions. It is important that we all work together.

115

Follow-Up Appointments Matter During Treatment for Stem Cell Transplant Many side effects of treatment are time-limited. They end once the treatment ends. But others may develop over time or be a sign of more serious damage from treatment. For instance, chemotherapy can damage organs, such as kidneys or lungs. Also, when leukemia cells break down during treatment, they release their contents into the bloodstream. This can cause what is called Tumor Lysis syndrome. It can also affect certain organs. If you have a stem cell transplant, the immune system cells from a donor attack the leukemia cells. They can also attack your normal cells, causing a variety of side effects. And, in rare cases, you may develop another type of cancer as a side effect of treatment.

For these reasons, it is important to tell your health care team about your symptoms and to keep your follow-up appointments. That way, your doctor can more closely monitor you and do everything possible to prevent these side effects or to reduce their impact. For instance, your doctor may prescribe drugs or extra fluids to flush broken-down leukemia cells from your body.

Here are a few things you can expect during follow-up visits. How often you need these visits will depend on whether you are receiving treatment, are in remission, or have relapsed: •

Your doctor will give you a physical examination.

•

You’ll give a small sample of blood for your doctor to get blood counts to check for issues of infection or immunosuppression.

•

You may need a bone marrow test.

Depending on your situation, you may need other tests as well.

116

117

UAMS Autologous Stem Cell Transplantation A Detailed Review of what to Expect Welcome!

Welcome to our Autologous Stem Cell Transplant program at UAMS Winthrop P Rockefeller Cancer Institute. You and your family will spend a lot of time with us in the weeks to come. We want it to be as comfortable as possible. This booklet will help you learn more about autologous stem cell transplantation and why you will need special care.

Before and during your transplant, you will learn how you and your family can help with your care. Your doctors and nurses will review this booklet with you and answer any questions you have. Your social worker will also talk with you and your family.

The Autologous Transplant Team The Service works as a team. Your doctor, the one you see in the clinic, will be in charge of your care throughout your treatment. However, your doctor may not be the one to manage your day-to-day care while you are in the hospital.

Attending doctors rotate on the inpatient unit. One attending will be responsible for your care for 2 weeks before another attending takes over. Any important decisions are made with your doctor.

Fellows, nurse practitioners, hospitalists and house staff are also partners in your care. The fellow is an internist doing special training in cancer. A nurse practitioner is a nurse who has an advanced degree in an area of care. This nurse practitioner can take patient histories, do physical exams, and prescribe treatments and medicine. He or she can also provide medical care with the doctors. The hospitalist is a doctor who only sees patients in the hospital. He or she will cover the unit at night. House staff are doctors who are completing their residency. They work under the supervision of the fellows and attending doctors. While you are here, you will come to know all of the members of your team. You can always contact your doctor if you have any questions. A team of primary nurses will be responsible for your day-to-day nursing care.

What is an Autologous Stem Cell Transplant?

Bone Marrow Bone marrow is found in the spaces in the center of the long bones in your body. Blood cells are made in the bone marrow: white blood cells (WBC) fight infection; red blood cells (RBC) carry oxygen; and platelets (PLT) help form clots to prevent bleeding. Stem cells are blood cells that have not yet become a specific kind of blood cell. All blood cells begin as stem cells; thus, by transplanting stem cells we can regenerate your blood cell forming ability. Stem cells tend to remain in the bone marrow, where they can become any type of blood cell the body needs, but some go into general circulation in the blood vessels.

Autologous Stem Cell Transplant Autologous means “from yourself.” Stem cells will form your new bone marrow after you have been treated. The stem cells in your blood are collected (harvested) before you are treated with high-dose chemotherapy called the “conditioning regimen.” We call this stem cell harvesting. You will have injections of G-CSF to help your body make more stem cells.

118

Stem cell harvesting is done in the Aphersis Center. It is very similar to giving blood. You will sit in a chair or lie in a bed and can read or bring music to listen to. It takes three to four hours for each collection. Several harvesting procedures (1-5) are usually required to get enough stem cells to support an autologous stem cell transplant.

Why You Need an Autologous Stem Cell Transplant Your type of cancer responds to high doses of chemotherapy, radiation, or both. A side effect of these is that your bone marrow will be wiped out. When your treatments are finished, the stem cells will be given back to you (“transplanted”) through your catheter. The stem cells will allow your bone marrow to again produce blood cells. The stem cell infusion takes 15 to 30 minutes. It is very much like having a blood transfusion.

Stem cell transplants are used to rescue patients’ bone marrow after treatment for many forms of cancer. These cancers are often treated differently. Your doctors and nurses will tell you about your treatment.

Relapse Relapse of your original disease can occur if the treatments did not destroy all the cancer cells. Some conditions may put a patient at a higher risk for relapse. Your doctor will discuss these with you.

119

120

The Autologous Transplant Service The Autologous Transplant Team works as an interdisciplinary team. Your doctor, the one you see in the clinic, will be in charge of your care throughout your treatment. However, your doctor may not be the one to manage your day-today care while you are in the hospital. Attending doctors rotate on the inpatient unit. One attending will be responsible for your care for 2 weeks before another attending takes over. Any important decisions are made with your doctor.

Fellows, nurse practitioners, hospitalists and house staff are also partners in your care. The fellow is an internist doing special training in cancer. A nurse practitioner is a nurse who has an advanced degree in an area of care. This nurse practitioner can take patient histories, do physical exams, and prescribe treatments and medicine. He or she can also provide medical care with the doctors. The hospitalist is a doctor who only sees patients in the hospital. He or she will cover the unit at night. House staff are doctors who are completing their residency. They work under the supervision of the fellows and attending doctors. While you are here, you will come to know all of the members of your team. You can always contact your doctor if you have any questions. A team of primary nurses will be responsible for your day-to-day nursing care.

Before Your Treatment Starts Diet There is no special diet preparation before a stem cell transplant. You do not have to take a lot of vitamins. If you are under- or overweight, try to get to your normal weight before you come into the hospital. Your doctor can guide you with this effort.

Preserving Fertility Many cancer treatments can affect fertility, the ability to have children. You may be infertile from the treatment you have already received. If not, you will most likely be infertile after your transplant treatment. This will have no effect on your ability to have sex. However, some patients report that they have a decrease in their sex drive.

There may be options for you to preserve your fertility before your transplant treatment begins. This must be done before you come into the hospital.

Men can preserve their fertility by sperm banking. This involves collecting, freezing, and storing sperm. Generally, three collections are needed. There are sperm banks throughout the U.S. where you can do this. To get more information about sperm banking, ask your doctor or nurse for our book “Fertility and Cancer Treatment: Information for Men,� and for our list of local sperm banks.

There are also options for women to preserve their fertility. This involves taking hormones for about 10-14 days and collecting eggs. The eggs may be fertilized with sperm to create embryos. The embryos or eggs are then frozen and stored. Because of the extra time this takes, you must discuss this with you doctor. To learn more about egg or embryo freezing, ask your doctor or nurse for local fertility doctor recommendations.

Radiation Simulation If you are going to have radiation as part of your treatment, you will meet with the radiation therapy team before you are admitted. You may also have a CT scan or PET scan or both to plan your treatment. You will also have a planning session called simulation. During this session, several x-rays are taken along with measurements of your chest. These are used to make lead shields. Your lungs are very sensitive to radiation and the shields will be used to protect them during some of the treatments.

121

Dental Exam You will have a dental exam. Decayed teeth and gums can cause serious infections in patients being treated with high doses of chemo or radiation. We must be sure that anything that could cause an infection in your mouth is fixed before your transplant. For example, you may need cavities filled, loose fillings replaced, or gum disease treated. Mouth care will be very important for the entire time you are in the hospital. We have an oral health clinic at UAMS who can assist you if you do not have a family dentist.

A Central Venous IV Catheter/Central Line A central venous IV catheter is an intravenous (IV) line (Central Line) that can stay in place for many months. Hickman, Cook, Quinton catheters are examples of central venous IV catheters. You will need to have one of these because fluids, medicines, blood products, and stem cells are given through it. Most, but not all, blood samples can also be drawn from the catheter. Central venous catheters are usually placed the day of admission or several days before. Some are removed before discharge. However, some patients go home with the catheter in place. If you go home with it, your nurse will teach you, a family member, or both, how to care for it. Tests Before your treatment starts, you will have some tests done. These will tell us how your body is functioning and what the status of your cancer or bone marrow disease is. We will use the test results to watch for any changes during treatment.

You will have some, or possibly all of the following tests.

• • • • • • •

•

Chest x-ray Blood tests Urine test A pregnancy test, if appropriate Electrocardiogram (EKG), echocardiogram (ECHO), MUGA scan – These tests tell us how your heart is functioning.

Pulmonary function tests (PFTs) – These are breathing tests to see how well your lungs work.

CT or PET scan – These scans may be used to see where tumors are in your body, to plan your radiation treatments, or both.

Bone marrow biopsy – This gives us a sample of your bone marrow. It will tell us about the state of your blood cells. It is done before your transplant, three to four weeks after your transplant, and then every three months for the first year. The timing may vary.

Lumbar puncture (spinal tap) – This lets us check for abnormal cells in your spinal fluid. A small needle is inserted through your back and a small amount of fluid is withdrawn. A lumbar puncture is only done for certain types of leukemia.

Your doctor or nurse will explain to you any other tests you may need.

122

Admission Day Go to the Admission Center on the first floor of the Ward Tower – next to the Lobby Café. After the admission process, an escort will take you to the transplant unit. When you get there, you will meet members of your transplant team. The team has doctors, nurses, nurse practitioners, and clinical nurse specialists. Other members of the team that you will meet are the social worker, the psychiatrists, dietitian, chaplain, nursing assistants and unit secretaries.

Radiation Therapy (RT) Radiation therapy may be part of the preparation for your transplant. Small doses of radiation will be delivered to your whole body (TBI) or to the parts of your body that have lymph nodes (TLI). These doses are given two to three times a day over several days. They are called “fractionated” treatments because the whole dose is divided up. Each treatment takes from 10 to 30 minutes. If you are male and have leukemia or lymphoma, you may have a boost to the testes. This is done to destroy cancer cells that might be hidden there.

You may also need a boost to other parts of your body. The treatment depends on the disease you have. Your transplant doctor and the radiation oncologist will explain the details of your treatment plan.

Having a radiation treatment is something like having an x-ray. The treatment does not hurt. Do not wear any jewelry during treatments. The metal may change the radiation dose to that area. You and your clothes do not become radioactive during or after the treatments. You cannot pass the radiation to other people.

Stop using any creams, lotions, deodorants, or oils (even lip balm) two days before you start radiation treatments. Do not use them at all while you are getting radiation. You may use Aquaphor© at night.

Family members may go with you when you have your treatments. They must wait outside the treatment room. The nurse will tell you more about how the radiation treatment is given and what you will do during treatment.

Chemotherapy Chemotherapy alone or combined with radiation therapy does two things: • •

It helps treat your disease It prevents your body from rejecting the transplanted stem cells.

Some people receive several chemotherapy drugs instead of chemotherapy and radiation. Your doctor will tell you which drugs you will get.

Side Effects of Radiation and Chemotherapy There are side effects to radiation therapy and chemotherapy. Possible side effects of this therapy include the following: Bone Marrow Suppression Radiation and chemotherapy treatments kill both leukemia cells and normal cells in your bone marrow. Because the bone marrow produces your blood cells, your blood counts will be very low until the donor’s marrow begins to work.

While you blood counts are low, special measures will be used to protect you from infection and bleeding.

Gastrointestinal Tract Symptoms 123

Radiation and chemotherapy can make you feel sick when they are given. They also destroy normal cells lining the mouth and intestines. This may cause nausea, vomiting, and diarrhea during and after the treatments. You may also develop painful sores in your mouth and mild to severe pain in your throat and lower esophagus. These are temporary.

You will be given anti-nausea and pain medicine when you need it. As your white blood cell count starts to increase, your mouth and throat will start to heal.

Hair Loss You will temporarily lose hair on your body and scalp. This begins about seven to ten days after you have finished your treatment. Until your hair grows back, it may help to wear a scarf, wig or hat. Your hair will start to grow back beginning about three months after your transplant.

The "Look Good...Feel Better" program has specially trained people to teach you how to use make-up to cover sallow skin and hide the loss of eyebrows. The program is offered at 1:30 p.m. on the third Monday of each month in the Patient Support Pavilion in the Cancer Institute. Call 501-686-5578 to sign up.

Sexual Function/Sterility Sterility is a side effect of both TBI and high-dose chemotherapy. It is highly likely that you will not be able to have children after your transplant. You will be able to have sexual relations. If you have any problems, tell your doctor.

There are many causes and most problems can be helped. Your feelings about a cancer diagnosis and treatment can make you less interested in sex. Fatigue is also common after transplant. You may not have the energy to have sex when you are tired. Sometimes, physical problems interfere.

Women Your periods may become irregular or stop. While you are in the hospital, you will take medicine to stop your periods.

This is because your platelet count will be low and you will bleed very easily. The medicine will be stopped when your platelets are high enough so that it is safe for you to have periods again. You may need hormone replacement after treatment.

Men After treatment, your sperm count may be much lower or you may not produce any sperm. If you want to bank your sperm, you must do it before radiation and chemotherapy. Ask your doctor, nurse, or social worker for details before your admission. Some male patients develop erectile dysfunction (impotence). If this happens, please tell your doctor.

Difficulty with Concentration Some people tell us they have trouble concentrating after transplant. They complain that their attention span is short.

Math may become difficult. This often improves over time, but some patients will not return to the same level they had before transplant.

Specific Side Effects from Radiation Radiation has some additional side effects: Skin Reaction 124

You may have a skin reaction that looks like a sunburn. Your skin will later become slightly darker than normal. This side effect can be greater if you are also getting certain chemotherapy drugs. It usually fades over several months. Your skin may be dry after treatment. Use alcohol-free lotions, creams, or oils to help relieve the dryness. The radiation therapy nurses will tell you what to use during radiation. After your transplant, stay out of the sun as much as possible. When you are outside, protect your skin with a sunblock of SPF 30 or higher at all times.

Salivary Gland Symptoms The salivary glands are found on both sides of your neck and under your chin. These glands may become tender and swollen and you may have less saliva. The swelling will go down a few days after your radiation therapy. The decrease in saliva is usually temporary. In most cases, it improves after several months.

Cataracts Some patients develop cataracts months to years after TBI. These are often mild and do not need to be removed. If you develop dense cataracts, they can be removed surgically. Secondary Cancers Some patients who have a transplant get another cancer later. Some of the treatments for you cancer can cause other types of cancer. Your risk depends on your age, your health, your family history of cancer, and other treatments you have had. Your transplant doctor can tell you more about your risk for getting a second cancer. Ask what regular screening checks you should have in the future.

Hypothyroidism Some patients have low thyroid function after TBI. You will have blood tests to check for this side effect. If you develop it, you will be given a thyroid hormone. You will need to take this pill once a day for the rest of your life.

Specific Side Effects of Chemotherapy Hemorrhagic Cystitis Certain drugs such as Cytoxan, can irritate the lining of the bladder. This may cause blood in the urine and painful urination. To help prevent this, you will receive large amounts of IV fluids, which will make you urinate often. Try to urinate at least every one to two hours on the days your receive Cytoxan. Your urine will be measured and checked for blood.

Coping with Side Effects We cannot predict which of the above side effects you will have or how severe they will be. Your may feel some of them just a little, or you may feel them a lot. Because of your treatments, there may be days when you feel very sick. We can give you medicine to try to help you feel better, so it is important to tell us how you are feeling. We need to work together to assure that you receive the best possible care. The Integrative Medicine staff is available to teach you relaxation methods. Some patients have found this helpful. You can go to the Patient Support Pavilion and participate in guided imagery sessions available from 8:00-4:30 Monday through Friday.

125

While You Are in Isolation You will be placed on protective isolation precautions to protect you from germs when you are admitted. A card telling visitors about the type of isolation will be placed on the door to your room. The door to your room must remain closed.

All staff and visitors who go into your room must wear a mask, wash their hands, and put on gloves. The mask and gloves will be in a box near the sink. You may have visitors every day while you are in the hospital, but they cannot have a cold or any signs of illness. No more than two people should visit at any one time. Your visitors should not eat in your room or use your bathroom. These precautions are in place until you go home from the hospital.

It is not necessary to sterilize things before they are brought into your room. You may bring photos, frames, or a pillow from home to make the room more comfortable. However, space may be limited and you do not want to have clutter in the room. The nurse can help you choose things best suited for isolation.

You may wear a hospital gown, but if you prefer, you may wear your own nightclothes or casual clothing. You may also have stuffed animals that can be laundered and new packaged games. You may not have fresh flowers or plants.

Weight and Vital Signs You will be weighed each day around 6am. Most weight changes during transplant hospitalization are due to fluid retention or loss. The inpatient team needs this information by the time they make rounds to make important treatment decisions. Your blood pressure, temperature, pulse, reparations, and blood oxygen level will be checked every four hours around-the-clock. No one likes being awakened at night, but these measurements are important. Any change may require a treatment change.

Exercise and Activity Once isolation begins, you may not leave your room unless you are going for treatment. However, activity is very important. Get out of bed at least twice a day and try to walk in your room every day to maintain your muscle tone and strength. Sit up in a chair as often as possible.

Your nurse will assist you with your daily activities if you need help. You may bring a laptop, books, games, etc. to help occupy your time. If you are a student, bring your books and assignments to keep up with schoolwork.

Eating Well Because chemotherapy and radiation therapy damage the lining of your stomach you may not feel well enough to eat anything during part of your hospital stay. To maintain your weight, you may need to receive nutrition through your IV. This is called TPN (total parenteral nutrition). The TPN mixture provides all the nutrients your body needs. Your progress will be checked daily, and changes will be made in the TPN mixture as needed.

Even if you are receiving TPN, you may try to eat and drink if your feel like it. Do not force yourself if you do not feel well. The dietitian and nurse will talk more with you about which foods are best when you are having treatments.

After your gastrointestinal tract heals, the dietitian can plan a diet for you. It will be based on the Low Microbial Diet booklet that will be given to you before your discharge. Your dietitian will review it with you. Well-cooked, easily digestible foods make eating easier. Do not share your food or drinks with anyone. You should not have any take-out foods while you are in the hospital unless they are cooked at home. Ask your nurse, dietician, or doctor about what kinds of foods your family and friends can bring you.

126

Mouth Care Mouth care is an important part of your care in which you can also participate. It must be done at least four times a day or more often if mouth sores appear. You can continue to brush your teeth with an ultra-soft toothbrush. Your nurse will show you how to do mouth care to help keep your mouth clean.

127

The easiest way to prevent infection is by WASHING YOUR HANDS! Make sure that you are washing your hands frequently, as well as staff members, visitors, and family members.

128

Possible Complications after Your Transplant Some complications are possible after your transplant. Infection, bleeding, and anemia are some of the major ones that can occur while you are waiting for your blood counts to return to normal. In most cases there are steps that you and your care team can take to prevent, manage, and treat them.

Infection You will be at risk for bacterial, fungal, and viral infections for several months after transplant. They are a major risk in the early recovery period until your new marrow grows and makes white blood cells to fight infection. Some infections will still be a risk while your immune system recovers during the first two years after your transplant.

Fever is one important sign of infection. If you develop a fever, a chest x-ray will be obtained and urine and blood cultures will be done. You will be given IV antibiotics to help your body fight the infection. Nearly all patients develop fever during the first two weeks after transplantation. Most infections are treated successfully with antibiotics.

Your doctors and nurses will try to prevent you from getting infections. You will likely be given drugs that are used to treat infections. For the transplant patient, they are also used to prevent them. You will receive anti-viral medicines.

These help prevent any viral infection you had in the past from coming back after the transplant.

Viral infections can include: • • • • •

Cold sores Recurrence of genital herpes Shingles Cytomegalovirus Other infections affecting the lungs or gut

Bleeding Your platelet count will be low. Since platelets form blood clots, you will be at risk for bleeding. The mucous membranes of the nose, mouth, skin, and gastrointestinal tract are most commonly infected. *You will have platelet transfusions if your count falls below 10,000 or if you have any bleeding.

Anemia When your red blood cell count is low, you may experience weakness and fatigue. Your nurse will assist you with your daily activities if you need help. You will be given red blood cell transfusion as necessary. These and all other blood products will be irradiated to prevent harmful side effects.

Organ Complication You may have complications in your kidneys, liver, lungs, or heart. These are not common, but they can be serious. You are at higher risk if you already have a medical condition in any of these organs. This is why we carefully evaluate your organ functions before the transplant.

Kidneys Your kidneys filter your blood and make urine to send waste products out of the body. The chemotherapy you get before transplant can affect how well your kidneys work. This is temporary, but waste products may remain in your blood until your kidney function improves. It also means that your kidney will have more trouble getting rid of any drugs you are given. Your nurses will keep records of the amount of fluid you get. This includes what you drink and what you are given through your IV line. They will also write down how much urine you make. This will help the doctors know if 129

you are beginning to have problems with your kidneys. You will also have blood tests every day to tell your doctors how your kidneys are working. If necessary, the doctors will adjust the doses of any drugs you are getting to decrease the risk to your kidneys.

Liver Your liver removes harmful substances from your body fluids, absorb nutrients, and produces bile. Bile helps you digest your food. Side effects on your liver include problems with digestion. A more serious problem is that the liver may no longer remove breakdown products of your body and you will become jaundiced. In some patients small blood vessels in the liver are injured. This is called Veno-occlusive disease or VOD. These vessels can then become blocked so that blood cannot flow. This can cause the liver to become enlarged and may damage liver cells. Fluid may fill the abdomen.

Liver problems of this sort usually begin within the first three weeks after transplant. With rare exception, all patients receive a drug that helps to prevent clot formation in the liver. This drug is called heparin, and it is given through your venous catheter. If you have side effects in your liver, your doctor will discuss the treatment options with you in more detail.

Lungs Your lungs control breathing. Infections that affect the lungs may cause problems with breathing. Two problems that can occur during transplant are: • An infection causing pneumonia and • Damage of your lungs from chemo and radiation This most commonly occurs in the first few weeks after transplant and can be serious. You will have regular chest x-rays while you are in the hospital. Your doctors and nurses will watch you closely for any signs of pneumonia. Tell them if you notice any change in your breathing. Do not ignore a cough or shortness of breath. Treatment depends on what causes the pneumonia.

Exercise your lungs. This may help to keep them clear. Your nurse will show you how to do deep breathing. You may also use an incentive spirometer. For this, you inhale deeply through a small tube to force a tiny ball to rise. You will receive different kinds of medicines to prevent or treat lung infections. Your nurse will review your routine with you.

Heart Your heart pumps blood throughout your body. Certain chemotherapy drugs may have side effects that damage the heart. Your doctors will watch your heart function carefully while you are in the hospital.

Relapse A risk for many patients is that their disease can comeback. This can happen if the treatments you had before the transplant did not kill all of your cancer cells. Your risk is higher if you have your transplant when you are in an advanced stage of disease or are already in relapse. Your doctor will follow you closely to watch for any sign of a return of your disease.

130

Follow-Up Appointments Matter During Treatment for Stem Cell Transplant Many side effects of treatment are time-limited. They end once the treatment ends. But others may develop over time or be a sign of more serious damage from treatment. For instance, chemotherapy can damage organs, such as kidneys or lungs. Also, when leukemia cells break down during treatment, they release their contents into the bloodstream. This can cause what is called Tumor Lysis syndrome. It can also affect certain organs. If you have a stem cell transplant, the immune system cells from a donor attack the leukemia cells.

They can also attack your normal cells, causing a variety of side effects. And, in rare cases, you may develop another type of cancer as a side effect of treatment.

For these reasons, it is important to tell your health care team about your symptoms and to keep your followup appointments. That way, your doctor can more closely monitor you and do everything possible to prevent these side effects or to reduce their impact. For instance, your doctor may prescribe drugs or extra fluids to flush broken-down leukemia cells from your body.

Here are a few things you can expect during follow-up visits. How often you need these visits will depend on whether you are receiving treatment, are in remission, or have relapsed: Your doctor will give you a physical examination.

•

You’ll give a small sample of blood for your doctor to get blood counts to check for issues of infection or immunosuppression.

•

You may need a bone marrow test.

Depending on your situation, you may need other tests as well.

131

CVL Class Schedule for Patients and Families Hospital CVL – Room 1E-34 (1st Floor of Ward Tower) 12:30 p.m., Monday - Friday

For more information, please call the UAMS Patient Education Department at 686-8084.

Directions to the Classroom from the Hospital:    

Take the elevator to the FIRST FLOOR. Continue straight past the LOBBY CAFE and ADMISSIONS. After the INFORMATION DESK, turn RIGHT. The classroom is STRAIGHT AHEAD.

Video Call 526-4766 from your hospital phone to view the video below: 202 Giving An Antibiotic Through PICC

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 132

Revised 3/15

PICC Care - Statlock Your line requires routine care and maintenance. Without proper care there is a risk of infection and other problems. Please follow the instructions on this handout carefully for proper care of your line. When your therapy is complete, your line is usually removed. Please check with your doctor to discuss having your line removed.

The PICC (Peripherally Inserted Central Catheter) has been inserted to make it easier for you to receive IV treatments. The catheter is placed into a large vein in the arm near the elbow. You will need help to change the dressing.

Things to Remember         

Care should be done in a clean, dry place away from food, drafts, children or animals.

Do not care for your line in the bathroom.

Clean surface area where your supplies will be placed with alcohol.

Remove any jewelry.

Use a liquid antibacterial soap in a pump dispenser.

Always wash your hands for 1-2 minutes under running water before touching your line.

Use a paper towel to dry hands/turn off water.

Do not use scissors on or around your PICC line.

Never bend or pinch a PICC catheter.

 During the dressing change the arm should be kept completely still. Moving the arm could cause the catheter to come out of the vein.

Supplies you will need:  Dressing Kits  StatLock PICC Plus Kit  Pre-filled Heparin Syringes  1 box of alcohol pads  Sterile gloves (optional)  Masks (optional) This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 133

When you are discharged, ask your doctor or nurse who to call if you have questions or concerns about your line.

The catheter should be flushed every 24 hours and after each use.

1.

Flushing the Catheter Remove heparin syringes from their packages.

2.

Pick up syringe and remove cap. Break seal on syringe by pulling down on the plunger. Then tap the syringe to remove any bubbles. Push plunger up until a drop of fluid comes out the top of the syringe. Do not lay down an uncapped syringe.

3.

Open alcohol pad, pick up lumen and scrub with alcohol.

4.

Attach syringe to lumen by pushing and twisting the syringe clockwise onto the cap.

5.

Open clamp and infuse 1 ml of heparin. Close clamp.

6.

Repeat steps 2 – 5 if you have additional lumens.

Note:  If you are unable to flush the catheter, do not force the fluid through the cap. Instead, reclamp, then remove the syringe and call the clinic.  If you forget to close the clamp before removing the heparin syringe from the line, open a new heparin syringe and re-flush the line. Remember to close the clamp before removing the syringe.

How to Maintain a Sterile Field: 1. Place only sterile items within the sterile field.

2. Areas outside the drape are considered non-sterile.

3. Remember the 2 inch margin.

4. Open and dispense items onto the sterile field without contaminating them.

5. Do not allow unsterile hands to reach across the sterile field or touch sterile items.

6. When in doubt about whether something is sterile, consider it not sterile.

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 134

PICC Care, continued Dressing Change The DRESSING and StatLock PICC Plus must be changed once a week or any time the dressing becomes soiled, wet or loose. Gauze dressing must be changed every 24 hours.

1.

Clean surface of area where supplies will be placed.

2.

Wash hands with a liquid antibacterial soap.

3.

Get the following supplies that you will need (Photo 1):  One dressing change kit  One StatLock PICC Plus kit  Alcohol Preps (wipes)

4.

Carefully remove the old dressing from the StatLock device pulling towards the insertion site. Leave the old dressing over the insertion site to stabilize the catheter while removing the StatLock device (Photo 2).

5.

Gently lift plastic doors of StatLock device one at a time (Photo 3).

Carefully remove PICC line from retainer (Photo 4).

Photo 1

Photo 2

Photo 3

Photo 4

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 135

PICC Care, continued 6.

Apply a generous amount of alcohol to loosen the edge of the StatLock pad. Gently stroke the undersurface of the pad with alcohol to dissolve the adhesive as the pad slowly lifts away from the skin.

Do not pull or force pad for removal (Photo 5).

7.

Remove the rest of the old dressing and throw away (Photo 6).

8.

Wash hands again.

9.

Open the dressing change kit. Touch only the outer corners of the kit. Do not touch the contents of the kit (Photo 7).

Photo 5

Photo 6

Photo 7

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 136

PICC Care, continued 10. Remove the mask and sterile gloves without touching the contents of the kit (Photo 8).

Photo 8 11.

Open sterile drape touching only the edges and place drape on the table. Pick up dressing kit and drop contents onto the center of the sterile drape without touching the drape (Photo 9).

12.

Open new StatLock PICC Plus kit Photo 9 without touching the contents. Drop the contents of the StatLock PICC Plus kit onto the sterile field of the dressing kit. Be sure not to get too close to the edges of the sterile field (Photo 10).

Photo 10

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 137

PICC Care, continued

Photo 11

13. Put on sterile gloves (Photo 11).

Remember, “sterile touches sterile�

(Photo 12).

Photo 12 14. Pick up the Chloraprep applicator.

Pinch the wings on the Chloraprep applicator to release the antiseptic (Photo 13).

Photo 13

Do not touch the sponge with your fingers. Wet the sponge by pressing and releasing the sponge against the treatment area (Photo 14).

Clean an area the size of the dressing for 30 seconds by using up and down and back and forth strokes. Let air dry for 30 seconds. Do not blot, wipe or touch the area for any reason after the Chloraprep has

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 138

PICC Care, continued been applied.

Photo 14

Securing Your PICC After Cleaning 1. Apply skin prep to area where StatLock device is to be placed. Allow to air dry for 10-15 seconds until it feels “paper dry” (Photo 15).

2.

Sec Photo 15 ure catheter to StatLock before placing pad on skin. The arrows on the StatLock should be pointing toward the insertion site (Photo 16).

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 139

PICC Care, continued Photo 16 3. With one hand, slide the StatLock anchor pad under the catheter wing. Slide one of the holes on the catheter wing over a post, then slide that post and wing toward the other side until the second hole fits over the second post (Photo 17).

4.

Close the lids over the posts one side at a time, while supporting the anchor pad with your fingers (Photo 18).

Photo 18

5. Put the anchor pad over the skin site, making sure the catheter is in place. Peel away the paper backing one side at a time. Press on to skin (Photo 19).

Photo 19

6. Open the medicated foam disk package (Photo 20).

Place the disk (printed side up) around the insertion site of the catheter using the slit to fully surround the catheter (Photo 21).

The arrows on the disk should be pointing toward the

Photo 20

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 140

Pho

PICC Care, continued StatLock (Photo 22).

Photo 21 Phot o 22

7.

Apply dressing over the StatLock centering over the insertion site making sure the notched side of the StatLock device is facing the clamp (Photo 23).

8.

Record the date to remind you when it needs to be changed.

Photo 23 Changing the Injection Cap/SmartSite Needle-less Valve The CAP must be changed once a week or more often as needed.

1. Clean work area with alcohol.

2. Wash hands with a liquid antibacterial soap.

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 141

PICC Care, continued 3. Make sure catheter is clamped.

4. Open new cap and leave in package.

5. Remove old cap/valve and hold the catheter so the end does not touch anything. Do not touch the uncapped end of your line or the end of the new cap.

6. Pick up the new cap and take off the protector tip.

7. Screw the new cap into place.

Call the doctor or clinic if you notice any of the following:  Redness Flu-like symptoms  Drainage Pain in the ear  Warmth or swelling Leaking at the insertion site or anywhere along the catheter  Fever of 101 degrees or higher Cannot flush the PICC catheter Chills

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 142

PICC Care, continued Revised 4/13

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 143

SASH for PICC, Triple Lumen Cooks and Arrows Supplies:  Two (2) pre-filled  One (1) pre-filled  Alcohol wipes  Infusor/Intermate SASH: S– Saline (10 ml) A– A Medication S– Saline (10 ml) H– Heparin (1

or

the ml

syringes

Antibiotic

wash your

hands.

saline syringe and removecap.

Break seal on syringe by on the plunger.

Then tap the syringe to bubbles.

Push plunger up until a drop of out the top of the syringe. Do not lay down an uncapped

3. Open alcohol pad, seconds.

4. Attach 5-10

Chloride)

ml)

How to connect antibiotics: 1. Gather supplies and 2. Pick up pulling down removeany fluid comes syringe.

saline (Sodium heparinsyringe

pick

up

syringe, open of saline.

lumen and

scrub with

clamp and flush your Close clamp and remove

alcohol for

15

IV catheter syringe.

with

5. Pick up medication pad, removecap from on the catheter infusing.

and unwind tubing.

Scrub cap with alcohol medication and attach medication. Open the clamps and the medication. The medication is now

6. The medication is Close the clamps on medication.

finished when the balloon(or bag) the medication and catheter. Remove

7. Pick up syringe.

saline syringe and Open alcohol pad,

removecap. pick

up

Remove lumen and

is the

flat.

air from scrub with

This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 144

alcohol. catheter 8. Pick up syringe.

Attach with 1-2

with

Attach the 5-10 ml

heparinsyringe and Open alcohol pad, the syringe, ml of heparin.

syringe, of saline.

open clamp and Close clamp and

flush your IV removesyringe.

removecap.

Remove air pick up lumen and scrub with open clamp and flush your IV Close clamp and removesyringe.

from alcohol. catheter

Revised 10/13

Safe Food Handling Food Storage  Rotate your food supply and canned goods so older items are used first. Keep track of expiration dates.  Throw away without tasting any bulging, leaking, cracked, or deeply dented cans.  Keep food storage area and cabinets clean.  If home-canned foods are used, make sure that processing methods are correct for the acidity of the food, size of the can or bottle, and elevation above sea level. Look for mold and/or leaks.

Check seals. Boil home-canned vegetables, including tomatoes, before tasting. Boiling destroys potential C. Botulinum organisms. If you suspect a home-canned food may not have been processed properly, the lid bulges, or the food has a bad odor or doesn’t look right—THROW IT OUT.  Never leave perishable food out of the refrigerator for more than two hours (including the preparation time). Egg, cream or mayonnaise-based foods should not be left out of the refrigerator for more than one hour.  Refrigerate only as much perishable food as can be eaten in two to three days. Freeze the rest of the food. Discard all moldy or rotten fruits and vegetables.

Food Preparation  Wash raw fruits, vegetables and herbs completely under cold running tap water before peeling and cutting. Discard bruised produce. Rewash pre-washed packaged salads and spinach greens.  During food preparation, do not taste food with the same utensil used for stirring.  Do not taste uncooked dough and batters that contain raw eggs or other high-risk ingredients.  Keep food at safe temperatures: —Hot foods– minimum of 165° F internal temperature —Cold foods– keep below 40° F internal temperature Brew tea with boiling water.

Food Preparation Areas  Clean kitchen surface and appliances often with a BLEACH SOLUTION of 1 part bleach in 10 parts of water.  Keep counters and kitchen surfaces free of food particles.  Keep appliances free of food particles. Wash blender blades, mixer blades and can openers after each use. The blades and bottom ring on the blender jar should always be removed and washed separately. Use the bleach solution to sanitize these items.  Wash cutting boards after each use in hot, soapy water or wash in the dishwasher.  Do not store chemicals and cleaning solutions near or over food supplies.  Sterilize dish rags in a microwave oven until steaming, or rinse in the above BLEACH SOLUTION in-between uses. Clean sponges by washing them in the dishwasher along with the dishes.

Safe Food Handling, continued Refrigerator and Freezer Tips  Clean spills immediately. Keep shelves, doors and handles sanitized with the BLEACH SOLUTION underlined on the first page.  Maintain refrigerator temperature between 34° F – 40° F and freezer temperature below 5° F.  Store all food in covered, shallow containers. Make sure to first cool any hot foods uncovered in the refrigerator. Cover the container after the food has cooled. Make sure that covers seal tightly.

Throw away the following:  Eggs with cracked shells.  Foods older than the “use by” expiration dates  All prepared foods older than 72 hours (three days)  Entire food packages or containers that show growth of yeast or mold (Foods most likely to become moldly include yogurt, cheese, cottage cheese, fruit, vegetables, jelly, condiments, pickles, bread and pastry products.)  Freezer-burned foods

Created 5/09

Water and Beverage Safety Guidelines Public water quality and treatment varies throughout the United States. Always check with the local health department and water utility about the safety of household and community tap water and ice for use by people who have a weakened immune system.

Tap Water: Water from your home faucet is safe if your water is from a city water supply or municipal well that serves highly-populated areas.

Well Water: Well water from private or small community wells is not thought to be safe for drinking by people who have a weak immune system and are at risk for infection. Well water must be tested daily and found to not contain coliforms and Cryptosporidium organisms to be safe.

Some ways that well water could become contaminated:  Construction occurs near the well Well depth is shallow  Well is near a dairy or large numbers of livestock  Recent flooding has occurred in the well area Municipal Wells: Drinking well water from municipal wells serving highly-populated areas is thought to be safe because the water is tested for contamination more than two times each day.

If you have a weak immune system and only have access to a private or small community well, other approved water sources should be used instead. These include:  boiled water bottled water (see guidelines below) Home Water Filters Not Safe: Common home water filtration systems do not remove bacteria or viruses. If the well water supply is chlorinated using guidelines provided by your local health department, the chlorinated water treated with one or more of the following is thought to be safe to consume:  Reverse osmosis treated Distillation Filtered through an absolute 1 micron or smaller filter (See “Water Filters” section on Page 2.)

Safe Water Sources The sources of water found below are suggested if your water is not from a city water or municipal well supply: Boiled Water–At home, safe water can be made by bringing tap water to a rolling boil for one minute. The water should then be stored in a clean, covered pitcher in the refrigerator. Discard water not used within 72 hours (3 days).

Water and Beverage Safety, continued Safe Water Sources, continued  Distilled Water–Water may be distilled using a steam distillation system. The water should then be stored in a clean, covered pitcher in the refrigerator. Discard water not used within 72 hours (3 days).  Bottled Water–Most bottled water has been processed to remove organisms known to cause stomach or intestinal infection. Bottled water labels reading “well water”, “artesian well water”, “spring water”, or “mineral water” do not ensure that the water is safe to drink. Water labeled as having been treated with one or more of the following are thought to be safe: – Reverse osmosis treated – Distillation – Filtered through an absolute 1 micron or smaller filter (NSF Standard #53 for cyst removal) To be sure that certain bottled water has gone through one of the above processes, contact the International Bottled Water Association (IBWA) at 1-800-928-3711, or visit their web page at www.bottledwater.org.

If the IBWA does not have information on a brand, call the bottling company.

Members of the International Bottled Water Association (IBWA) follow more strict manufacturing practices in their water bottling process than those practices currently mandated by the United States Food and Drug Administration. For that reason, water bottled by a member of the IBWA may be better than water produced by non-member bottlers.

Water Filters Most water filtration devices will not make the water safe if the water supply has not been chlorinated.

If you choose to install water filters on household water taps, purchase only filters certified by National Sanitation Foundation (NSF) International. The following terms must also be met: a. The filters must be designed to remove coliforms and Cryptosporidium. Any of the ones below are acceptable:  Reverse osmosis filter  Absolute pore size of filter 1 micron or smaller  Tested and certified by NSF Standard #53 for cyst removal b. The water tap filter must be installed before the water tap. c. Manufacturer directions must be followed for filter maintenance and replacement Portable water filters (such as a Brita® or Pur® system) as well as refrigerator-dispensed water and ice machine systems do not meet filtration standards. Portable water systems filter out chemical impurities, not bacteria. If a portable water system (such as a Brita® pitcher) is used in combination with a safe water supply (to improve water flavor and remove chlorine and other impurities), it is recommended to change the system’s filters frequently according to manufacturer’s guidelines.

For a list of approved filtration systems, call the NSF International, at 1-800-673-8010 or visit their home page at www.NSF.org (go to the section entitled “Home Water Treatment Devices”)

Mouth Care During Chemotherapy Many of the chemotherapy drugs you receive have side effects. One side effect is mucositis or stomatitis. Both terms refer to soreness or sores in your mouth and your throat. The drugs can also cause dryness and irritation. All of these side effects can cause some bleeding and put you at risk for infection. This soreness usually happens when your blood counts are low and goes away as your blood counts return to normal levels.

Why does this happen?

1. Chemotherapy kills fast-growing cells in the body. The mouth is lined with such cells.

2. Chemotherapy decreases the white cell count. White blood cells fight infection.

3. Chemotherapy decreases saliva production, leading to dryness of the mouth as well.

Some bacteria that live in the normal mouth are not harmful. However, with the loss of the lining cells in the mouth, reduction in saliva and lowering white blood cells, the mouth loses its ability to fight these bacteria. As a result, mouth sores are produced. A similar type of lining extends into the throat and stomach, so the infection spreads further down the mouth.

Mouth sores can cause: 

Pain



Bleeding



Inability to eat and drink



Change in taste



Infections



Trouble swallowing

If the infection spreads to the stomach, this can lead to diarrhea and dehydration. A fungus called Candida Albicans causes most common fungal infections. It is referred to as thrush or Candidiasis.

How do mouth sores look?

At first, it may be just redness in some areas of the mouth. Swelling of the tongue or lips and the inside of the lips may also occur. You may see ulcers or white scaly patches that may bleed if touched. You may have dry, cracked lips.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 150

Mouth Care, continued What can I do to care for my mouth?  Take care of your dental needs before treatment begins. 

Inform your doctor or nurse as soon as you see any signs of mouth sores during or after treatment.



Brush your teeth and gums with a soft toothbrush, toothpaste and a gentle touch every morning, after eating, and before going to bed at night. Brushing too hard can cause damage to the tissues in the mouth.



Avoid commercial mouthwash that contains alcohol. Alcohol in your mouth rinse or regular consumption of alcohol can be highly detrimental to your health.



Try to floss. You can floss as long as your platelet count is 50 (50,000) or more. You must stop flossing when your platelet count falls below 50.



It may be difficult to brush during treatment as your neutrophil count goes down. It is important to always keep your mouth moist. In this case, you can use disposable oral swabs to clean your teeth and mouth. Rinse with the mouth wash provided, saline, or salt water for added cleaning.



Use lip balm and drink plenty of fluids.



Do not eat very spicy foods.



Eat soft, easily chewable foods such as oatmeal, porridge and yogurt.



Do not smoke!



If you wear dentures and your mouth becomes irritated or sore, it is best to remove your dentures and let them soak. To allow your gums to heal, wear your dentures only when you have to, when going out or when eating. This will allow your gums to heal.



There are other mouth care products you can get if needed. Let your nurse or doctor know if your mouth is too dry, if your saliva is too thick or if you are having pain. These and other problems with your mouth can be treated and resolved.

For questions or problems, call: Infusion 4 @ 501-686-8220- after hours call 501-686-5000 & Ask for the Medical Oncologist for Allo Transplant MD/APN on call

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 151

Stress Management What is Stress?

STRESS is the mental and physical responses our bodies experience in response to any type of change. A STRESSOR is any physical, social or psychological event or condition that triggers a stress reaction.

4 Most Common Signs of Stress:  Exhaustion and Fatigue  Feelings of Helplessness  Decrease in Effectiveness  Negative Attitude Towards the Situation or Others 10 Ways to Control Stress 1. Set do

realistic first.

goals and

priorities

and

identify

those things you

must

2. Organize your time in accordance with those priorities.

3. Learn to say “no” when asked to do something stressful.

4. Recognize that some stress is unavoidable – it’s a part of life.

5. Make a list of stressful situations in your life.

6. Divide the list into things you can’t hope to influence.

avoid or

control and

things you

7. Use your time and talents well to address those stressful situations you can change.

8. Don’t waste your energies in a frustrating attempt to conquer what you can’t control.

9. Don’t be afraid to ask questions, get suggestions, and share your problems with others.

10. Do allow yourself time out – to enjoy personal interests or just to smell the roses.

AAABC’s of Stress Management: A- Alter the source.

A- Avoid stress.

A- Accept stress.

B- Build for resistance.

C- Change your perception.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 152

can

Stress Management, continued Tips for Dealing with Stress GET PLENTY OF REST - No matter what the stressor, you’ll be better able to handle it if you’ve had enough sleep. Unfortunately, sleep is one of the first things that busy people tend to sacrifice.

Keep in mind that stresses imposed by a busy life-style only increase your need for rest. It’s a good idea to aim for eight (8) hours of sleep every night.

EXERCISE - Exercise is probably the single most effective “depressurizer” because it helps you use nervous energy and allows your body to metabolize stress - related hormones more rapidly. Any physical activity that involves the major muscles of the body and that is sustained for at least 15 minutes will help to relax your muscles. It will also cause your body to release endorphins which can help to relieve stress, impart a sense of well-being and help you fight off stress-related issues.

LAUGHTER/HUMOR - Laughter can often produce many of the same stress-relieving effects as exercise, such as dissolving tension in your muscles. Remember that a sense of humor can help keep a maddening situation in perspective.

Quote to Remember: “Laughter is contagious. Start an epidemic!”

EAT WELL - The body’s reaction to stress can often involve physiological problems. That is why it is essential to eat properly. A nutritionally sound diet can increase your resistance to stress. Don’t skip meals or rely on high-fat snacks when under stress. It will only make the problem worse and you could end up sick.

USE “UPLIFTS” - Uplifts are activities that refresh you physically, emotionally or spiritually. Everyone has their own uplifts - things they do to help them feel healthy and happy during stressful times.

Examples might include:

 Listening to music  Taking a nature walk  Reading a book  Playing a musical instrument  Watching a movie  Playing with an animal  Attending a worship service  Exercising  Playing a sport Traveling

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 153

Advisory Committee.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 154

Stress Management, continued MANAGE YOU TIME EFFECTIVELY WHEN YOU FEEL OVERWHELMED - Identify those things that are making you feel overwhelmed. Learn to break down your responsibilities to make them more manageable.

DEEP BREATHING - Taking deep breaths from your abdomen - not your chest - can calm you down by slowing down your breathing rate and supplying more oxygen to your brain. Close your eyes and take a long, slow series of breaths, letting each one out very slowly. Count to three while inhaling through your nose, and again while exhaling through your mouth. Repeat ten times.

PROGRESSIVE MUSCLE RELAXATION (PMR) - A technique that works well when you are physically stressed. Focus your attention on your muscles. Start with the muscles in your feet and work your way up. As you focus on each area, check for any tension and let that tension go.

It may help to tense that area first, hold it, then release it.

VISUALIZATION - Using your mind to take a “vacation” from your stress. Close your eyes and think... visualize yourself in a serene setting - either somewhere you’ve been or somewhere you’d like to go.

Keep this picture in your mind until a calming sensation takes over, a response that typically takes only ten minutes, sometimes less.

“SHAKE IT OUT” OK, so it looks a little funny!

But this is a quick way to release tension and it really does work. The fact that it’s silly may make you laugh - and laughing itself helps you to relax. Imagine the way a dog shakes after getting wet.

Shake your arms and hands, your legs and feet, your head and your shoulders.

STRETCHING - Stretch each muscle in you body by extending it, hold, then relax.

QUIETING - A way of mentally calming yourself by focusing on a word or on your breathing. This technique is designed to help people “turn off” their worries. Get into a comfortable position. Sit on a comfortable chair that provides good back and neck support or lie down on a carpet or mat. Loosen any clothing that makes you feel constricted. Focus on either a soothing word or your breathing.

MASSAGE to your removes massage

Massage can help you relax by increasing blood flow tension areas.

Increased blood flow relaxes muscles and the build-up of waste products caused by tension. is also a nice way to communicate caring without words.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 155

A

Having Trouble Sleeping?

1. Avoid caffeine. It is a stimulant that can keep you up!

2. Avoid

nicotine

3. Avoid

alcohol.

4. Exercise regularly. yourself at 5. Don’t nap night.

for

least

during the

the

same reason.

It

may

wake you

up

later

before bedtime. exercise and bedtime.

day

trouble getting to

if

you

have

regular,

relaxed bedtime

routine -

even

7. Use

your

for

sex),

nothing

sleep (and

8. If you can’t something

sleep after to relax

30 you

9. Try not you.

bring the

trials and

to

the

Don’t do it right 3 hours between

6. Set a

bed

in

minutes, such as

but

on

get up and readingor listening

worriesof

the

day

night.

Give

sleep at

weekends. else. try to

doing soft music.

to

bed

with

Advisory Committee. Revised 5/11

Reviewed 9/14 156

Palliative Care Program What is Palliative Care?

Palliative care is an area of medical practice dedicated to actively supporting patients and families who are dealing with serious illnesses. It is important to know there is specialized medical care focused on relief from symptoms, pain and stress.

Whether it’s a curable illness, a chronic disease or end-of-life issues, palliative (pronounced pal-leeuh-tiv) care aims to improve quality of life for both the patient and the family.

At UAMS, palliative care is provided by a team of doctors, nurses and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.

A Team Approach The Palliative Care Program utilizes an interdisciplinary team to help medical providers, patients and their families deal with the multiple aspects of an advanced illness. UAMS Palliative Care Team consists of the following providers: • • • • • •

Physicians, Certified by the American Board of Hospice and Palliative Medicine Staff Chaplain, Board-Certified as a Clinical Chaplain by the College of Pastoral Supervision and Psychotherapy Registered Nurse Social Worker Advanced Practice Registered Nurse Healthcare professionals form other disciplines, such as pharmacy and physical or occupational therapy, are also utilized on an as-needed basis.

The Palliative Care Program consists of a hospital consultation service and outpatient services: Inpatient Services • • •

Hospital consultation on difficult-to-manage symptoms (i.e. pain) Support to clinicians, patients, and families facing difficult medical decisions Facilitates patient discharges to settings more appropriate for achieving the goals of care Outpatient Services

• •

Clinics for symptom management for ambulatory patients Home visits within a limited geographic area on non-ambulatory patients 157

How can I get Palliative Care?

Ask your doctor for a palliative care referral. The Palliative Care Team works with patients in the hospital, clinic and at home.

What does the UAMS Palliative Care Team Do? Our team of board-certified physicians, nurses, social workers and chaplains works closely with you and your primary medical team to provide: • • • • • • • • •

Expert treatment of pain and symptoms that affect your quality of life Open communication and compassionate care Help with navigating the healthcare system Help with difficult treatment choices Home care coordination and referrals Inpatient and outpatient care Emotional and spiritual support for you and your family Pastoral care, guidance, and support for your belief system and values Advance care planning information

How do I contact the Palliative Care Consult Service?

Request a referral from your physician. If you would like to contact the UAMS Palliative Care Team, call 501-686-8738 and leave your name and contact information. A palliative care team member will contact you within 24 hours.

Our team of palliative care specialists in the Winthrop P. Rockefeller Cancer Institute are here to help you and your family.

Meet the Palliative Care Team: Dr. Sarah E. Harrington Dr. Robin Devan Dr. Elizabeth Rogers Dr. Robert Lehmberg Margaret Love, APRN Marie Sullivant, RN Dianne Campbell, LCSW Libby Grobmyer, Chaplain Cathy Shaneyfelt, Volunteer Coordinator

158

Anite Pagitt, RN Denise Pace, RN

PATIENT/FAMILY TEACHING SHEET

Planning Ahead for Health Care Decisions (Advance Care Planning) It’s about the conversation!

Dealing with serious illness can be stressful, especially when there are important decisions to be made. During these times, the health care team and family may not know what the patient would choose. How can I help my family and my health care team know my wishes?  Think carefully about your wishes before talking with your family and health care

team. Everyone has different ideas about what is right for them. For example, are there basic things that make “life worth living” such as being with and recognizing your family? Are there certain live support measures you would or wouldn’t want if you were terminally ill? If unable to speak, who could be trusted to speak for you and express your wishes?  Once you have considered these issues, speak with the people closest to you.

When discussing these wishes, sometimes a close friend or family member may not want to talk about it. Let them know that this is important to you and should be taken seriously. It may help to use a familiar example: “Remember when Aunt Susan had Alzheimer’s disease… if that happens to me, I would want…”  Discuss your wishes with your health care team at least once a year and more

often if your health changes or if you are hospitalized. Provide your health care provider with any written documents expressing your wishes  If diagnosed with a serious life limiting illness, the healthcare team (preferably

palliative care team) will discuss your wishes regularly. Remember you are “in charge” of your own decisions when facing a life limiting illness. Only when you can no longer speak for yourself will any health care agent or written document speak on your behalf  Consider making a video or audio recording expressing your thoughts and wishes

to share with loved ones or even writing a letter 159

 If you name someone to be your health care agent (a trusted friend or family

member to speak on your behalf and make decisions if you are unable), be sure to share your feelings and wishes with them ahead of time  Expressing your wishes to those closest to you may be very comforting in a time of

crisis and allow them to honor what you value the most

Advance directives Advance directives are a way to communicate your wishes in writing if you are unable to speak for yourself. Some persons create an advance directive during estate planning. It is important to keep a copy of this document and to provide a copy to your health care team.

Some examples of advance directives  A Living Will is a written statement of heath care wishes to be carried out if you

are unable to communicate (for example: deisions related to life support, nutrition, dialysis)  A health care agent, sometimes called a “Health Care Power of Attorney,” allows you to name a trusted friend or family member to speak on your behalf and make decisions if you are unable  Examples of other advance directive documents include “Five Wishes,” MOLST (Medical Orders for Life Sustaining Treatment), POLST (Physician Order for Life Sustaining Treatment). Additional information for these supplemental materials can be found at: www.agingwithdignity.org and www.POLST.org

How will the health care team support you and your family?  Respect your wishes  Encourage you and your trusted friends and family to discuss important

decisions such as: who makes decisions if you are unable to communicate, what kind of medical treatment you want, things you want your loved ones to know and how comfortable you want to be  Assist you and your family with communicating your wishes verbally or in writing  Direct you and your family to resources for advance directive documents, such as Caring Connections, a public site to download state-specific advance directives www.caringinfo.org/stateaddownload Other HPNA Teaching Sheets on are available at www.HPNA.org.

Reference Briggs L. Advance Care Planning: The Role of the Nurse. In: Berry PH, eds. Core Curriculum for the Generalist Hospice and Palliative Nurse. Pittsburgh, PA: 2010.

POLST Paradigm Programs. Available at www.ohsu.edu/polst. Accessed September 22, 2010.

160

What are Advance Directives? Available at www.caringinfo.org/PlanningAhead/AdvanceDirectives/WhatAreAdvanceDirectives.html Accessed September 22, 2010.

What is Five Wishes? Available at www.agingwithdignity.org Accessed September 22, 2010.

Approved by the HPNA Education Services Committee, November 2010.

161

What Are Advance Medical Directives?

What Are Advance Medical Directives?

UAMS would like you to know that there are ways to let others know what decisions you would want to make about your medical treatments, even when you are unable to speak for yourself. In fact, there are documents known as advance directives that allow you to name a specific person to speak for you concerning your medical care, and/or you can write a document that tells your physicians what you want or do not want for treatments should you be unable to speak for yourself.

For example, you can name someone you want to make medical decisions for you in a Durable Power of Attorney for Healthcare (DPAH). This person will then be the legal medical decision-maker for you should you be unable to speak for yourself. However, there is one exception to this rule: your DPAH is not authorized to make decisions about life-sustaining treatments.

In end-of-life cases should you be terminally ill and unable to speak for yourself or if you become permanently unconscious, you may instruct your physicians on what you do and do not want concerning life-sustaining treatments (including artificial ventilation, hydration, and nutrition). To do this, you can create what is known as Living Will (Arkansas law also calls this a “declaration concerning lifesustaining treatments”). You may also name someone to make those decisions for you. The person you name to make decisions about life-sustaining treatments is known as a Health Care Proxy (this person may be the same person as the one who has your Durable Power of Attorney for Healthcare, or it can be someone else, if you wish). Every state makes its own laws concerning advance directives, and in Arkansas, the living will and health care proxy only have authority if you become permanently unconscious (in a permanent coma or vegetative state) or if you are unable to speak for yourself and have some terminal condition.

Having advance directives is good for everyone young or old, since accidents and illness can strike at any time. It is your right to accept or refuse medical care, and advance directives can protect this right if you become mentally or physically unable to choose or tell someone your wishes.

The following information is intended to help you develop an advance directive, and the forms at the end of this document can be filled out in order to allow you to make some end-of-life decisions in advance that meet Arkansas’ legal requirements. Also, the forms simplify the legal process by This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 162

Advance Medical Directives, continued combining the Health Care Proxy (the person who makes life-sustaining treatment decisions) with the Durable Power of Attorney for Healthcare (the person who makes all other medical decisions).

Deciding What You Want Of course, making an advance directive can be difficult. Thinking about end-of-life care can be emotional. Also, we do not always know what such care really would look like. So, before making an advance directive, it can be helpful to start by thinking about what is important to you. Furthermore, it is important to find out about all the treatments open to you. Then you can decide the level of care that you would want. Advance directives can help you protect your right to make medical choices, help your family avoid the stress of making hard decisions, and help your doctor by giving him or her guidelines for your care.

Recording Your Wishes Once you know what kinds of medical care you may want, you can express and protect your wishes by putting them in writing. With an advanced directive, you can name someone else to make medical choices for you or you can state the treatments you would choose or not choose.

Three Kinds of Advance Directives in Arkansas Living Will (Declaration): In writing, explains your wishes about your health care if you have a terminal condition. They are called “living” wills because they take effect while a patient is still alive.

Health Care Proxy: In Durable Power of Attorney writing, you can name a for Healthcare: person to make decisions In writing, you can name about life-sustaining a person to make medical treatments for you should decisions for you, except you become permanently those covered by a Health unconscious or have a Care Proxy. terminal condition and do not have the mental capacity to decide for yourself.

Taking Steps to Making Your Wishes Known There are four (4) basic steps to developing an advance directive in order to meet your medical needs and desires at the end-of life. Each one is discussed below.

Step 1: Clarifying What Is Important To You End-of-life decisions are actually decisions about how you want to live–specifically, they are about how you want to be cared for in your final months, weeks, and days. So, think about what is important to you.

Answering the questions below and talking about the answers with family and friends can be helpful:  What do you fear most about being ill or injured?  How much do you value being able to do things on your own?  How much do you value physical activity?

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 163

Advance Medical Directives, continued  How would you feel if you could no longer do things that you currently enjoy?  How important is it for you to be physically, mentally or financially independent?  How would you feel about being cared for in a place other than your own home–for example, in a hospital or nursing home—at the end of your life?

Step 2: Learning about End-of-life Treatments An advance directive can be written in order to explain what treatments you wish to have or those you wish to limit should you be permanently unconscious or terminally ill and unable to speak for yourself.

Of course, you may decide you do not wish to go to a hospital or other healthcare facility, but should decisions about life-sustaining measure have to be made, you may want to put down in writing what you do and do not want. Some measures to consider are:  Cardiopulmonary Resuscitation (CPR) • When the heart stops (cardiac arrest), doctors and nurses use special measures to try and restart the heart. This may include pushing on your chest, giving medicine, or using electrical shock.  Intravenous (IV) therapy • Some medication (and, sometimes, even nutritional fluids) are given through a tube placed in the vein.  Feeding Tubes (Artificial/Assisted Nutrition) • If you are no longer able to swallow food, there are times when you can be fed through a tube that goes into your nose, your abdomen, or intravenously (through the vein).  Ventilators (Artificial/Assisted Breathing) • Ventilators are machines that can help you breathe; sometimes they even breathe for you when you are unable to. Some ventilators are non-invasive (they use masks, and no tube is inserted into your body), but many times patients require intubation (a tube inserted in your wind pipe or through a hole in your neck).

The therapies listed above are not the only therapies that you might want to think about (talk with your doctor about others), and it is important not only to think about the type of therapy but the circumstances where it would apply. Remember, your advance directives can ask that therapies be started, withheld, or stopped. You can even state that you would like a therapy to be started, allowing also that it later be stopped if it looks like it is not going to help you recover.

Step 3: Creating an Advance Directives  To create a valid advance directive Arkansas law states that you must be a person of “sound mind” who is at least 18 years old.  Put your wishes in writing, and be as specific as you can be. [You can create both a living will and a health care proxy—in case your living will does not anticipate all the circumstances that unfold. You can use the forms at the end of this packet.] If you have not created an Advance This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 164

Advance Medical Directives, continued Medical Directive, or the written Advance Medical Directive is unavailable, you may make a verbal directive to your healthcare team.  Sign and date your advance directive.  You must have two adults witness that you did sign the document, and they, too, must sign and date the form before it is legal.

[Note: Other states may differ from Arkansas on what is required to create a valid advance directive. If you have created an Advance Directive in another state, in compliance with the laws of that state, it will be accepted.]

Step 4: Making Sure People Know about Your Living Will and Health Care Proxy  It is a good idea to keep a card in your wallet stating that you have advance directives and where to find them.  Give your doctor a copy to be kept as part of your medical records.

• Be sure you explain your reasons for the instructions you leave in a living will.

That is, let your physician know why you do and do not want particular treatments at the end-of-life.  If you use a health care proxy, be sure to give a copy to the person who will be making decisions for you.

• Be sure you explain your reasons for the instructions you leave in a living will. That is, let your proxy know why you do and do not want particular treatments at the end-of-life.  Talk about your advance directives with your family and friends. Give copies to all relatives and friends who might be called in an emergency.

• Be sure you explain your reasons for the instructions you leave in a living will. That is, let your family and friends know why you do and do not want particular treatments at the endof-life.

Review your advance directives regularly and make changes if needed. Tell your doctor, family, and friends about any changes you make.

Some Questions and Answers about Advance Directives: This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 165

Advance Medical Directives, continued 1. Who is qualified to make an advance directive?

You must be 18 years or older and be able to make decisions for yourself (that is, you must be of “sound mind�). (As a parent, you can also create one for your children who are less than 18 years of age.)

2. When does an advance directive become operative?

A living will has authority to express your wishes only when you are either permanently unconscious or unable to speak for yourself and have a terminal condition. This is also true of the heath care proxy for life-sustaining treatment decisions.

In Arkansas, a living will and health care proxy do not have legal authority until the patient has a terminal condition and is unable to speak for him/herself or s/he becomes permanently unconscious.

The durable power of attorney for healthcare is active for all other medical decisions whenever you are unable to make decisions for yourself.

3. Must a physician honor my advance directive? Yes, your physician must honor your advance directive; if he or she is unable to, then he or she is required to try to transfer your care to a physician who can.

4. What if I change my mind?

You can change or cancel your advance directive at any time. Make sure you tell your doctors, health care workers, hospital, and friends that your wishes have changed. Ask them to tear up and destroy old copies.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee.

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 166

Advance Medical Directives, continued 5. What role does my family play in making medical decisions?

Family can play many important roles in health care decision making. You can involve any family member or friend in your health care decisions, but it is best to let your doctor and other health care workers know who is allowed to be informed of your condition as well as what roles everyone is to perform. You can determine who in your family (or even a friend) should be a decision maker for you by assigning that person to be your durable power of attorney for healthcare (for general medical decisions) and/or health care proxy (for life-sustaining treatment decisions).

If no person is specifically assigned in an advance directive to be your health care proxy, Arkansas law requires that for life-sustaining treatment decisions doctors look to the following people (if available and in the specific order listed): (1) A legal guardian of the patient, if one has been appointed; (2) In the case of an unmarried patient under the age of eighteen (18), the parents of the patient; (3) The patient’s spouse; (4) The patient’s adult child or, if there is more than one (1), then a majority of the patient’s adult children participating in the decision; (5) The parents of a patient over the age of eighteen (18); (6) The patient’s adult sibling or, if there is more than one (1), then a majority of the patient’s adult siblings participating in the decision; (7) Persons standing in loco parentis to the patient; or (8) A majority of the patient’s adult heirs at law who participate in the decision.

6. Are fluids and nutrition considered “life-sustaining treatments”?

The short answer is “yes”: fluids and nutrition (IVs and feeding tubes) are considered forms of lifesustaining treatments for the purpose of end-of-life decision making. What this means is that you (or your health care proxy) are allowed to request continued fluids and hydration or you (or your health care proxy) may request that they be discontinued. Like any treatment decision, it is important not only to state what you want or don’t want, but why and under what conditions. Also, like any treatment decision, you can change your mind, so long as you clearly make your wishes known.

7. In an emergency, how will my advance directive be used?

Remember, living wills and health care proxies are legally recognized only when you are permanently unconscious or have a terminal condition and are unable to speak for yourself. In most cases, physicians need some time to determine whether or not you would meet one of these two conditions. So, many treatments may be started in order to evaluate your condition, but these treatments can be stopped if it is determined that you meet one of the two conditions (permanently unconscious or terminally ill) and stopping treatment is what you would want according to your living will or health care proxy.

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 167

Advance Medical Directives, continued Advisory Committee.

Revised 12/10

This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education

UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 168

169

(Place MR Label Here)

UAMS

MR#: Patient's Name: Patient's Address:

MEDICAL CENTER UNIVERSrTY Of ARKANSAS FOR MEDICAL SCIENCES

Healthcare Proxy my healthcare proxy shall be: Any time I am temporarily or permanently unable to make heal thcare decisions,

(Name of person)

My healthcare proxy may make all decisions about: D My personal care D My medical care D Hospitalization D Whether I shall receive medical treatment or procedures including artifical feeding or fluids, even though I may die D Visitors, if problems arise concerning visits by friends and family Such decisions shall be consistent with my wishes, or, if my wishes are unknown, shall be consistent with my best interest.

This document is intended to be a durable power of attorney under A.C.A. 20-13-104 and a declaration and proxy statement under the Rights of the Terminally Ill or Permanently Unconscious Act. You may add further instructions here:

Signed this __ day of _______ , 20

at ----- am/pm

Signature of person

Witnesses The declarant voluntarily signed this writing in my presence.

Signature of Witness

Signature of Witness

170

Address

Date

Address

Time

Date

1 1111111 1111111 Med Rec 2479 (01/09) page 8 of 9 Advance Directive

171

Time

R

Name of Person signing document

172

Pharmacy Services The Pharmacy Department consists of the Hospital Pharmacy, the Outpatient Pharmacy, and the Winthrop P. Rockefeller Cancer Institute satellite. The primary function of the Hospital Pharmacy is to support the drug therapy of hospitalized patients. The outpatient pharmacy provides outpatient prescription services to UAMS ambulatory patients and to patients being discharged from UAMS. The Outpatient Pharmacy is located on the first floor of the Outpatient Center building.

Pharmacy Hours Hospital Pharmacy – Hospital Pharmacy is open continuously 24 hours each day. A pharmacist is always on duty.

Outpatient Pharmacy – Outpatient Pharmacy is open from 8:30 a.m. to 6 p.m., Monday through Friday. It is closed on Saturday, Sunday, and holidays.

Phone: (501) 686-5530

Pharmacists Pharmacists are available in the hospital on E7 and H7 to answer questions and participate in interdisciplinary team meetings.

Investigational Drug Use The approved protocol and completed Patient Consent Form are a prerequisite to the use of an investigational drug. The principal investigator of the research protocol and the predesignated associate investigators are the only physicians who may write orders for an investigational drug.

Use of Homeopathic Therapies Always check with your physician, nurse, or pharmacist before using any homeopathic and/or herbal therapy.

Use of Over-the-Counter (OTC) Medications Always check with your physician, nurse, or pharmacist OTC medications. Many OTC medications can contain aspirin-like compounds (salicylates), acetaminophen, or ibuprofen.

Salicylates and Ibuprofen have an effect on the blood’s platelets and should be avoided unless prescribed by your primary hematologist/oncologist.

Look for the following ingredients on the labels of OTC medication products: • Salicylates – aspirin or aspirin-like compounds, acetylsalicyclic acid, ASA, salicylamide, methyl salicylate, sodium salicylate, potassium salicylate, magnesium salicylate, etc.

• Ibuprofen – IB, IBU, ibuprofen • Acetaminophen – APAP, acetaminophen 173

The following is a partial list of products containing salicylates, ibuprofen, and acetaminophen.

There are many OTC products NOT listed, so become familiar with how to recognize what is in the OTC medication that you are considering taking.

Aspirin or Aspirin-like Compounds • • • • • • • • • • • • • •

Alka-Seltzer (all products except for Effervescent Antacid) Aspercreme Ascriptin (all products) Aspirin (all products) BC Powder Ben-Gay (all products except Warming Ice) Doan’s (all products) Ecotrin (all products) Empirin Excedrin (all products) Flexx-All 454 Icy Hot Mentholatum (Deep Heating and Deep Heating Arthritis Formula) Pepto-Bismol

Acetaminophen • • • • • • • • • • • • • • •

Acetaminophen Actifed Plus Anacin (all products) Comtrex (all products) Dristan Drixoral Plus Excedrin (all products) Nyquil Nighttime Cold Medicine Pamprin (all products) Panadol, Children’s and Infant’s Percogesic Sinutab (all products) Sominex Pain Relief Formula Tabs TheraFlu Tylenol (all products)

Ibuprofen • • • •

Advil (all products) Mediprin (all products) Motrin IB Nuprin

174

Medication Assistance Program

Who qualifies for assistance?

Must meet all 4 of the following: •

• • •

Patients under the care of UAMS physicians, seen at a UAMS clinic (main campus-Little Rock) with prescriptions from UAMS physicians Patients who have been denied by Medicaid Patients with no prescription drug coverage Patients meeting income guidelines, which are 200% of the federal poverty guidelines and are subject to change.

•

Apply for Medicaid before calling for an appointment. The Medicaid office phone number is (501) 686-7680.

•

To obtain a current Social Security Monthly Benefit Letter call 1-800-772-1213 or (501) 324-5123

•

We are unable to provide immediate assistance in all cases. Ask to be placed on the cancellation list if you need an appointment sooner than what is offered to you.

•

Physicians may require you to be seen in the clinic every 3 to 6 months for follow-up

If you have Medicare A or B or A & B you are eligible for Medicare Part D. Contact the Social Security Office to apply.

175

162

176

What to bring to your appointment:

•

• • • • • •

Proof of household income. (3 most recent check stubs, W2 forms, child support letter, food stamp award letter, pension, retirement, or V-A benefits) • Social Security Monthly Benefit Letter for the current year Federal Tax Returns for all working household members.

If you have no income and a family member, friend, or other agency provides assistance to you, please bring a written statement explaining the assistance given.

Medicaid denial/pending letter dated within 6 months of your appointment.

Proof of legal residence (Driver’s License/Picture ID card and Social Security Card or green card) Written prescriptions or prescription bottles from the UAMS pharmacy (no more than 3 months old) ADAP status letter from your local county office (if applicable)

Appointment Information • •

Call (501) 686-8953 Monday through Friday between 8:00a.m. and 4:30p.m.

Please give at least a 24 hour notice if you will not be keeping your scheduled appointment.

•

To leave a message for the pharmaceutical coordinators, please call (501) 686-8953, your call will be returned at the earliest convenience.

Covered Medications • •

Not all medications are covered on the program Each prescription has a $4.00 Service Charge for a 30-day supply. • Prescriptions must be written by a UAMS physician on a UAMS prescription pad.

• Call our office at (501) 686-8953 for questions regarding coverage of a specific medication.

All medications are not placed on the approval card. Special order and mail order medications are not listed on the approval card at the time of the appointment.

163

Commonly Used Medications Supplements: Folic Acid: something the body needs to make normal blood cells K-Dur/K-Lor: a potassium supplement Mad Oxide/Slow Magnesium: a magnesium supplement Magnesium soy protein: a magnesium supplement Multivitamin: a vitamin supplement that may or may not have iron TPN (total parenteral nutrition): giving the body the nutrients it needs directly into a large vein Vitamin K: a vitamin that is need for blood to form a clot Antivirals: Acyclovir: medicine to prevent or treat viral infections (e.g. chickenpox, shingles) Cidofovir, foscarnet, ganciclovir, and valcyte: medications to prevent or treat viral infections most commonly cause by cytomegalovirus (CMV) Antifungals: Fluconazole, amphotericin (AmBisome®), voriconazole, micafungin, Mycelex®, Mycostatin®, posaconazole: medicines used to prevent or treat fungal infections Anti-Pneumocystis Carini pneumonia (PCP): medications used to prevent or treat pneumonia caused by a germ called Pneumocystis carinii Bactrim®, Pentamidine (inhaled or give intravenously [IV, into a vein]), Mepron® (can also be used to prevent toxoplasmosis) Antinausea: medications used to prevent or treat nausea and vomiting Compazine® Reglan® Emend®

Vistaril®

Zofran®

Kytril ®Atrivan®

Marinol®

Aloxi®

Anti GVHD: medicines used to prevent or treat graft-versus-host disease Mycophenolate Mofetil (CellCept®); Cyclosporin (Neoral®); Tacrolimus (Prograf®), Sirolimus (Rapamune®) Steroids: Prednisone (Deltasone®, Orasone®), budesonide, dexamethasone (Decadron®) and SoluMedrol® (methylprednisolone).

Antithrymocyte Globulin (ATG): a serum protein preparation made in animals. ATG destroys human T lymphocytes (T cells) and it is used to treat or prevent graft rejections and GVHD. It may also be used in the treatment of aplastic anemia.

Methotrexate: a chemotherapy drug given in very small doses to prevent GVHD. Campath®: a monoclonal antibody used to treat certain types of leukemia and lymphomas. It is also used to prevent or treat GVHD. Rituximab: a monoclonal antibody used to fight foreign invaders such as lymphoma cells.

178

Chemotherapy: high doses of chemotherapy are used to destroy cancer cells. You may receive several different drugs for your transplant.

Your doctor will discuss with you the specific drugs that you are going to receive. Your nurse will review chemotherapy fact cards with you. They describe the drugs and their possible side effects.

Below are some of the chemotherapy drugs you may receive: Busulfan

Cytoxan®

Thiotepa Fludarabine

Melphalan

Other drugs you may receive: Benadryl®: a medication that may be given before you receive blood products. It is an antihistamine, which helps to prevent allergic reactions. It also may be used as a sleeping medication.

Tylenol®: a medication, which may be given before blood products. It may be used to control fever and minor aches and pains.

Hormones: given to women to prevent vaginal bleeding when their platelet count is very low. Ovral®, LoOvral®, and Provera® are some examples.

Heparin: a medication that helps keep blood from clotting. It is also used to flush a long term IV catheter to stop it from clotting when it is not in use. You may also receive a very low dose IV solution of heparin during your transplant to prevent veno-occlusive disease.

Prevacid®, Protonix®, Zantac®, Prolisec®, Nexium®: medications used to decrease stomach acid secretions.

179

Medication Journal Drug Name:

Dose:

Time:

Dose:

Time:

Dose:

Time:

Dose:

Time:

Dose:

Time:

Side Effects:

Drug Name:

Side Effects:

Drug Name:

Side Effects:

Drug Name:

Side Effects:

Drug Name:

Side Effects:

180

Medication Journal Drug Name:

Dose:

Time:

Drug Name:

Dose:

Time:

Drug Name:

Dose:

Time:

Dose:

Time:

Dose:

Time:

Side Effects: Side Effects:

Side Effects:

Drug Name:

Side Effects:

Drug Name:

Side Effects:

181

Medication Journal Drug Name:

Dose:

Time:

Dose:

Time:

Drug Name:

Dose:

Time:

Drug Name:

Dose:

Time:

Dose:

Time:

Side Effects: Side Effects:

Drug Name:

Side Effects:

Side Effects:

Drug Name:

Side Effects:

182

Medication Journal Drug Name:

Dose:

Time:

Dose:

Time:

Dose:

Time:

Drug Name:

Dose:

Time:

Drug Name:

Dose:

Time:

Side Effects: Side Effects:

Drug Name:

Side Effects:

Drug Name:

Side Effects:

Side Effects:

183

Medication Journal Drug Name:

Dose:

Time:

Dose:

Time:

Dose:

Time:

Dose:

Time:

Dose:

Time:

Side Effects: Side Effects:

Drug Name:

Side Effects:

Drug Name:

Side Effects:

Drug Name:

Side Effects:

Drug Name:

Side Effects:

184

Medication Journal Drug Name:

Dose:

Time:

Dose:

Time:

Dose:

Time:

Dose:

Time:

Dose:

Time:

Side Effects:

Drug Name:

Side Effects:

Drug Name:

Side Effects:

Drug Name:

Side Effects:

Drug Name:

Side Effects:

185

Medication Journal Drug Name:

Dose:

Time:

Dose:

Time:

Side Effects: Side Effects:

Drug Name:

Side Effects:

186

Glossary This glossary contains commonly used terms that you may hear during your hospital stay.

Absolute Neutrophil Count- the number of neutrophils (a type of white blood cell) that a person has to help fight infection. Referred to as ANC. Allogeneic Stem Cell Transplant- stem cells are taken from someone other than the patient and then given to that patient.

Anemia- a decrease in the number of red blood cells the body has, which results in the hemoglobin decreasing also. This creates a diminished ability of the blood to carry oxygen. If severe, signs and symptoms include: paleness, weakness, fatigue and shortness of breath upon exertion. Antibiotic- a drug that destroys bacteria and is used to treat or prevent infections. Antiemetic- a drug that prevents or lessens vomiting.

Apheresis- process of removing certain components of blood from a donor then returning the unneeded parts to that donor. Also called "hemapheresis". This process makes is possible to remove desired elements from large volumes of blood (i.e. platelets, RBCs, WBCs and plasma) can be removed separately. This is used for collecting circulating blood stem cells, which can be frozen, stored and used lated for a stem cell transplantation.

Aplastic Anemia- a disease in which the bone marrow is not able to make the blood cells the body needs.

Autologous Stem Cell Transplant- the patient’s own stem cells are harvested, preserved, and later returned to the patient.

Bacteria- small germs that can cause infection.

Bone Marrow- A spongy tissue in the hollow central cavity of the bones where blood cells are formed.

Once the marrow cells have matured, they enter the blood and travel through the marrow and are carried throughout the body.

Central Line- a special tube, an indwelling catheter, that is inserted into a large vein. It is tunneled under the skin. With meticulous care, these can be left in place for a lengthy amount of time. There are two types of central lines: a Port, which is surgically implanted under the skin and can be left indefinitely, and a temporary, a PICC or CVL, which are threaded to a large vessel and can be cared for and capped remaining in place for chemotherapy, blood products, etc.

Conditioning Treatment- therapy administered prior to an autologous or allogeneic stem cell transplant that includes cytoxic drugs and/or TBI. This can help reduce any remaining tumor cells in order to open up for the transplanted cells to engraft.

Engraftment- the process of the transplanted donor stem cells to migrate into the recipient's marrow and produce new blood cells of all types. This result is first evident when new WBCs, RBCs and platelets begin to appear in the recipient's blood following stem cell transplant.

Growth Factor- a chemical that is used to increase the production of neutrophils and shorten the period of a low neutrophil count. Granulocyte-colony stimulating factor (G-CSF) and granulocyte187

macrophagecolony-stimulating factor (GM-CSF) are examples of growth factors made commercially and often used.

Herpes Zoster - a virus that causes shingles, painful skin eruptions that follow the underlying route of nerves inflamed by the virus.

Host - the person into whom the stem cells have been infused.

Immunosuppression - a decreased ability of the immune system to fight infection, induced by drugs, radiation, or infection.

Interstitial Pneumonia - inflammation of the lung caused by a virus or due to damage from chemotherapy and radiation.

Irradiated Blood Products- blood products that have been exposed to a radiation source to inactivate the lymphocytes that could otherwise cause GVHD. The blood is not damaged, and it is not made radioactive by this treatment.

Jaundice - a “yellowish” skin color usually reflecting damage to the live.

Leukemia - a disease in which the bone marrow makes abnormal white blood cells.

Leukocytes- white blood cells. They play a major role in the body’s defense. These cells are divided into three main subgroups: granulocytes, lymphocytes, and monocytes.

Low Microbial diet- a diet designed to minimize bacteria, viruses, yeast, and molds in your food and beverages Lumbar Puncture (LP or Spinal Tap) - a procedure in which a thin needle is passed between the vertebrae in the lower back and into the sack that surrounds the spinal cord. It is performed to obtain a small amount of spinal fluid, which is checked for infection or growth of leukemia cells.

Lymphatic System - that part of the circulatory system consisting of lymph nodes and vessels that filter out germs and diseased cells.

Lymphoma - a cancer of the immune system involving lymphatic tissue. mL (milliliter) - a unit of measurement. There are 30 mL in one ounce, 15 mL in one tablespoon, and 5 mL in one teaspoon.

Mucous Membranes - the inner lining of cavities, like your mouth, nose and sinuses. These lining require new cells to be made to replace those that drop off, this process keeps the linings intact and moist. These create a "barrier" to infection. Often radiation and/or chemotherapy can cause these linings to become dry and defective, often ulcerative, this needs to be treated by your physician, as these ulcers can cause great pain and discomfort. These ulcers are referred to as oral "mucositis". Anal ulcers can also develop. Notify your physician immediately of any signs or symptoms of mucositis.

Mucositis - inflammation of the mucous membranes of the throat (esophagitis) and the mouth (stomatitis).

Myeloablation- the severe or complete depletion of bone marrow cells. When giving high-doses of chemotherapy or radiation therapy prior to allogeneic stem cell transplant causes this. This type of chemotherapy, myeloablative therapy, eliminates the patient's ability to make blood cells.

Neutropenia - a condition characterized by a low neutrophil count (white blood cells that fight infection), making the patient prone to infection Neutrophils - a type of white blood cell that plays a major role in the body’s defense against bacterial and fungal infections.

NPO - abbreviation for “nothing by mouth” Peripherally inserted central venous catheter (PICC line) - a long thin, flexible tube that is inserted through the skin into a vein then advanced until it reached the superior vena cava just above the heart. The PICC can be used for weeks or even months, when maticulously cared for, to administer medications, fluids, nutrition and blood products.

Platelet- the blood cell that helps cloth the blood and stops bleeding.

Radiation Therapy- the use of high-energy x-rays to treat diseases.

Red Blood Cell - the blood cell that carries oxygen in the body.

Rejection- the body’s inability to accept transplanted stem cells. Relapsethe recurrence of a cancer during or after treatment.

Refractory disease- disease that does not go into remission or improve substantially Severe Combined Immuno-Deficiency (SCID)- a genetic disease characterized by the absence of the body’s natural ability to fight infection.

Solid Tumor- abnormal growth of cells that form a solid mass in a area of the body.

TBI (Total Body Irradiation)- high-dose radiation treatments given to the whole body.

T Cell - a subset of white blood cells that can cause graft rejection or Graft vs. Host Disease. Normal T cells play major role in the body’s defense against viral and fungal infections.

T Cell depleted stem cell transplant- a special transplant in which the T cells are removed from the donor’s marrow before it is given to the patient; this reduces the likelihood of Graft vs. Host Disease.

Tissue Typing (HLA, Human Leukocyte Antigen) – a special test of white blood cells to check the genetic match between a donor and the patient.

TLI (Total Lymphoid Irradiation) – radiation treatments given to the parts of the body where most of the lymphatic system is located.

Veno - Occlusive Disease (VOD) – a disease caused by a block in the flow of blood through the small blood vessels in the liver. It results in mild, moderate, or severe liver damage.

Virus – small germs that may cause infection; examples are adenovirus, cytomegalovirus (CMV), or herpes virus.

White Blood Cell – the blood cell that helps fight infection.

173

My Treatment Journal

191

My Treatment Journal

192

My Treatment Journal

193

My Treatment Journal

194

My Treatment Journal

195

My Treatment Journal

196

My Treatment Journal

197

My Treatment Journal

198

My Stem Cell Transplant Journey: A Basic Guide Created to assist you throughout this Endeavor was constructed for you after a professional analysis of a magnitude of information was gathered from reputable facilities, organizations, and hospital education departments. This material was adapted from numerous sources including: patient resources from CIBMTR, The American Cancer Society, The Leukemia & Lymphoma Society, the UAMS patient education department, and numerous facilities offering similar hematology/oncology services on-line resources.

The information provided in this Guide was compiled, organized and reviewed by the Allogeneic Stem Cell Transplant Team. This Guide was created & designed from that material by Crystal L. Pearson, BSN, RN. It was then edited & approved by the University of Arkansas for Medical Sciences Winthrop P. Rockefeller Cancer Institute Department of Marketing for distribution to our patient population.

4301 West Markham Street, #508

Little Rock, Arkansas 72205 cancer.uams.edu