Network Newsletter - Summer 2010

Summer

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network

The Anderson Network is a program of Volunteer Services at MD Anderson Cancer Center

Working through cancer: Career considerations during and after treatment

by Mary Brolley

People profiles: Pat and Roger McWaters

p. 3 Doctor, Doctor Side effects of chemotherapy

p. 4

Anderson Network’s Telephone Support Line

p. 5

Survivorship conference p. 6-7

When she was diagnosed with cervical cancer in 2003, Marisa Ramirez wasn’t sure how she’d balance cancer treatment and employment.

A media relations representative for Interfaith Ministries for Greater Houston, Ramirez didn’t know how chemotherapy and radiation would affect her, or how much time she’d need to recover from each treatment.

Luckily, she had an understanding boss. “I was fortunate — she was very flexible with me. As time went on, I learned that I might be OK the day of treatment, but three days later it would really hit me.

She supported me all the way.”

For Ramirez, working was a constant — an anchor — when her world seemed out of control. “I really didn’t know who I was going to be as a cancer patient. But I knew how to go to work Monday through Friday, doing media relations for Interfaith Ministries.

“I put my back up against that, and it helped me be more positive.”

Of course, not all cancer patients can keep working during treatment. Certain types of cancer or treatments might require a longer recovery time.

And those who can might choose to take sabbaticals from their jobs to concentrate on getting treatment, then getting healthy.

First steps for those who must work through treatment For the many cancer patients who must work to keep their health insurance, taking a break from employment is not an option. In that case, patients must figure out how to keep their jobs while feeling tired, anxious and mentally fuzzy. continued on page 2

Sharing hope, support and understanding with anyone diagnosed with cancer, regardless of where treatment is or was received.

continued from page 1

“I sensed that if I felt it was too much to handle, they would, too.”

And first they might have to wrestle with the most basic choice: whether or not to tell their employer they have cancer.

Factors in the decision may be their relationship with their supervisor, the culture of the workplace and the flexibility of the job itself.

To take the time for treatment appointments and to keep them informed, most patients do decide to tell their supervisor or their human resources department staff.

What and how much to reveal? This is a difficult question, because, at least at first, it may be hard to predict when appointments will be scheduled and how you’ll feel during treatment.

However, if patients can sit down with their health care team once a treatment plan has been chosen, they can find out what these medical experts predict in terms of treatment side effects, as well as the timing of necessary appointments.

Make a plan, know your rights Then, patients might list their work duties and devise a plan for getting them done — or suggest how they should be handled. This plan will reassure their employer that cancer treatment will be manageable for both parties.

There are legal protections for employees facing cancer.

The Americans With Disabilities Act (ADA) shelters employees from being fired simply because they have a disability, and cancer may be considered a disability in some cases. The Family and Medical Leave Act allows employees to take a certain amount of unpaid time off from work (for treatment or to recover from illness) without fear of being replaced by their employers.

Although these laws don’t apply in every employment situation, they are a welcome legal backing for many.

Another consideration: As prepared as you might be, there are a range of reactions to treatment and its effects. If you must return to work while still recovering, it may be possible

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for your employer to make reasonable accommodations through ADA for your “new normal” in terms of fatigue or need for time off for appointments. If your job allows, it might even be possible for you to telecommute for a while.

The nonprofit Cancer and Careers organization has a website that includes a good deal of practical information for patients, caregivers, employers and health care professionals about career considerations after a cancer diagnosis. Find the link at http://www.cancerandcareers.org.

‘They followed my lead’ Ramirez, who now works at the University of Houston, recalls that although her Interfaith Ministries coworkers were supportive, they treated her as a colleague, not a cancer patient.

“When I first told them, I experienced a momentary silence. They were worried about me and how I’d get through it,” she says.

“I sensed that if I felt it was too much to handle, they would, too.”

As she got used to the rhythm of treatments and recovery and life went on, Ramirez’s confidence and competence reassured them, and they responded with kindness but not undue worry. “They followed my lead,” she says.

Which doesn’t mean they weren’t concerned. “It was Interfaith Ministries; I had people of all faiths praying for me,” she laughs.

In the fall issue of Network, we’ll explore legal and insurance issues of working during cancer treatment. Share your story about working through cancer by e-mailing mbrolley@mdanderson.org.

People profiles Couple create

a haven for patients and caregivers

by Lana Maciel

Pat McWaters understands the importance of a welcoming atmosphere and how a smile or a kind shoulder can lift a patient’s spirits.

It’s the kind of inspiration she’s received at MD Anderson since being diagnosed with breast cancer in 2003, and the kind of atmosphere she and her husband Roger try to create for other MD Anderson patients.

Every Friday afternoon you can find Pat and Roger in the Mays Clinic Hospitality Center, serving refreshments, visiting with patients and caregivers and offering a warm welcome to all.

“We enjoy helping people who are new to MD Anderson and the cancer experience,” Pat says. “I’ve gone through this before, and I’m still going through it, so I want to be here to give other patients hope.”

In the five years they’ve volunteered, Pat and Roger have become an integral part of the life of the Hospitality Center, a program of the Anderson Network. They offer coffee, tea or cookies, or just pass the time with patients or caregivers by helping them complete a jigsaw puzzle.

It’s a rewarding experience, Roger says, and one that has brought a lot of good friends into their lives.

Anticipating visitors’ needs is top priority Pat understands the emotional experience other patients are going through.

“You can often sense people’s needs or what they’re feeling when they come in,” she says. “Some are more private and are just looking for some quiet time, while others want a friendly face to talk to.”

Having been at Pat’s side throughout her treatment, Roger can relate to the caregivers who visit the Hospitality Center. He often helps those who are new to the experience of caring for a loved one with cancer.

“The best advice I give them is to just help the patient be as active as can be,” Roger says.

Pat could be the poster child for an active life. Though still undergoing treatment for her cancer, she keeps an impressive schedule.

Besides her work in the Hospitality Center, she volunteers with Anderson Network’s Patient and Caregiver Telephone Support Line, offering encouragement to women dealing with the same diagnosis. She continues to enjoy sports and stays active within her church, where she and Roger sing in the choir.

“I play golf and tennis when I can,” Pat says. “It’s my therapy.

Staying busy keeps me going.”

Find out more about Anderson Network at www.mdanderson.org/andersonnetwork.

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Doctor, Doctor Focus on chemotherapy We asked Millie Toth, senior nursing instructor in the Department of Nursing Professional Development, to give us an overview of the side effects cancer patients may face during and after chemotherapy.

of vomiting over the past few years. Several agents help eliminate or minimize the vomiting reflex. Ondansetron (Zofran®) and aprepitant (Emend®) block different “vomiting” receptors to minimize nausea and vomiting.

If you’re on a highly emetogenic (vomit-inducing) regimen, it’s important to maintain a constant blood level of the antiemetic (vomit-preventing) agent until the chemotherapy has been eliminated from the body. Don’t wait until you “sense” nausea to take nausea medication; instead try taking it 30-60 minutes before a meal.

What are the most common side effects of chemotherapy?

Do you alert patients to the side effects they might encounter?

Because chemotherapy attacks fast-dividing cells, side effects are triggered in places where such cells are common, like the bone marrow, the gastrointestinal (GI) tract, the skin and hair follicles.

Low white blood cell conditions, like leucopenia and neutropenia, might put patients at increased risk for infection.

Frequent hand washing is the best way to minimize this risk.

Other patients may develop anemia when their red blood cell count is reduced. Anemic patients may notice increased fatigue, a fast heartbeat and shortness of breath. When platelet levels are reduced, as in thrombocytopenia, bleeding precautions must be implemented, such as shaving with electric razors and minimizing activities that have increased potential for trauma.

GI tract symptoms may include oral mucositis (sore mouth), pharyngitis (sore throat), esophagitis (difficulty swallowing), nausea and vomiting, diarrhea and loss of appetite (anorexia). With certain chemotherapy agents, such as vinca alkaloids like vincristine and vinblastine, constipation may be a side effect as well.

Yes. Patients must be aware of the agents and treatment they’ll receive, including rationale and proactive management of potential side effects. Patients need to realize that they’re part of the treatment team.

I recommend that they and their families learn as much about their disease and treatment as possible. Patients should advocate for themselves, and monitor and have a basic understanding of important blood values, such as platelet, neutrophil, hemoglobin, renal and liver function levels.

I urge patients to maintain a “diary” binder to record side effects (from zero to 10), write questions for their doctors, take notes and file routine blood values/reports for reference. This “logging” may help patients better understand and manage this experience, and gain more control.

Can you explain the nausea and vomiting that accompany chemotherapy?

The degree of nausea and vomiting depends on the treatment regimen. The agent(s), dose and route may all contribute to its intensity. We’ve learned a lot about the causes

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Millie Toth answers more questions about chemotherapy side effects — and treatments for them — in Network’s online version. Click on www.mdanderson.org/publications/network.

Lifeline: Patient-to-patient telephone support makes the difference

by Mary Brolley

“May I make a quick call?”

Elizabeth Sarabia Cerda asked the distressed patient.

In a preparatory meeting before surgery to insert his chemotherapy port, the middle-aged man had become agitated, then had burst into tears and said, “I’m going to die anyway.

Why should I do this?”

Sarabia Cerda, a physician assistant in MD Anderson’s Department of Surgery, remembered the Anderson Network Telephone Support Line, which connects patients with survivors who share their diagnosis, and, if possible, treatment history.

She called Sam Short, senior administrative assistant for the Anderson Network, a patient and caregiver support organization. Short quickly searched the database of nearly 1,200 telephone support volunteers to find one with a similar diagnosis and treatment plan.

Within 15 minutes, Sarabia Cerda recalls, the patient’s cell phone rang. On the other side of the line was a Tennessee man who had survived the same diagnosis, metastasis and surgery.

The men spoke for several minutes, then the reassured patient decided to go ahead with surgery. More than a year later, he is doing well.

“He was a tough guy, but he was frightened and desperate.

We (health care professionals) are sympathetic, but we haven’t walked in patients’ shoes,” Sarabia Cerda says. “It was great to be able to connect him with someone who understood exactly what he was feeling.”

After her memorable encounter with the support line, Sarabia Cerda left Short a voice mail to thank her. Short has saved the message for nearly 18 months.

“She said my call made a huge difference to the patient. In fact, she said I was ‘Making Cancer History®,’” Short says. “I loved it.”

Bridging the gap to share expertise The support line is among Anderson Network’s most successful programs. Since 1986, it has linked more than 20,000 patients nationwide. Callers and volunteers are welcome, no matter where they received or are receiving treatment.

Its aim — to connect those at different stages of the cancer journey so they can tap into each others’ experiences — bridges the gap between patients who might not otherwise meet. It’s also available to caregivers who’d like to speak with another caregiver of a patient similar to their own loved one. There is also a separate database of and for pediatric caregivers.

Telephone volunteers are screened and trained by Anderson Network staff. Additional training is also available online.

Volunteers are encouraged to be a voice of hope and support, but not to give medical advice or promote MD Anderson.

While most callers are new to the cancer experience, some are years beyond treatment, says Laura Hearn, program coordinator of the support line. As cancer treatments evolve, volunteers with certain diagnoses and treatment histories are in special demand, she says, as are bilingual and young adult survivors.

To become a telephone support volunteer or to be connected with another caregiver or survivor, call 800-345-6324 or 713-792-2553, or use the online contact form at www.mdanderson.org/andersonnetwork.

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Researcher, physician and author Servan-Schreiber headlines cancer survivorship conference Hearing the words “You have a brain tumor” is not for the faint of heart.

When David Servan-Schreiber, M.D., Ph.D., heard this news at the age of 31, the rising star in neuroscience and psychiatry went through predictable cycles of fear, worry and confusion.

After traditional treatment and a recurrence of the tumor a few years later, Servan-Schreiber began a quest to discover what he could do to help prevent the cancer from returning.

His exhaustive research into the effects of one’s environment, lifestyle — and perhaps even past traumatic episodes — led to the writing of his international bestseller, “Anticancer: A New Way of Life,” first published in 2007 with a revised edition in 2009.

Now an adjunct faculty member in MD Anderson’s Integrative Medicine Program, Servan-Scheiber is the keynote speaker for Anderson Network’s Cancer Survivorship Conference, Sept. 24-25.

Please join us at the Omni Westside in Houston to learn more about the issues cancer survivors face, to meet and share with other survivors, to take wellness classes and have fun.

Speakers, breakout sessions, medical panel Open to all cancer patients, their families and caregivers, the conference includes nearly two dozen informative breakout sessions, including:

• • • • • •

navigating the world of health insurance, the ins and outs of bone marrow transplantation, cancer and its relation to bone health, hereditary cancer syndromes and genetic testing, body image concerns, and integrative oncology and the power of lifestyle change.

MD Anderson President John Mendelsohn, M.D., will lead the popular medical panel on Saturday morning.

On Saturday afternoon, Gail Goodwin and Jeffrey Weinberg, M.D., will share the story of Goodwin’s diagnosis with brain cancer in 2009 and the surgery and treatment that followed. Titled “She Had Her Head Examined: A Patient and Her Surgeon Share the Inside Story,” the talk will feature Goodwin’s observations on the experience of going from being an MD Anderson employee to a patient.

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Thanks to MD Anderson, sponsors and individual donors, the cost of the conference is just $50 for early registrants, which includes all meals, activities and self-parking.

Registration is available online until Sept. 17. After that date, participants may pay $60 at the door on the day of the conference.

For more information or to register, check the conference website or call 713-792-2553 in Houston, 800-345-6324 toll free.

The Anderson Network, an organization with support and educational services for patients/survivors, their families and caregivers, is a program of the Department of Volunteer Services.

For more information about Anderson Network’s Cancer Survivorship Conference, including a complete agenda, visit www.mdanderson.org/patientconference.

Conference Facts

Conference Registration

Registration deadline:

Cancer Survivorship Conference Omni Houston Hotel Westside • Sept. 24-25, 2010

Friday, Sept. 17

Registration online: www.mdanderson.org/ patientconference

Please complete one registration form per person (you may copy additional forms) and return to:

Scholarships:

Cancer Survivorship Conference Office of Conference Services – 1381 UT MD Anderson Cancer Center P.O. Box 301439 Houston, Texas 77230

A limited number of scholarships are available for patients and caregivers.

To obtain an application, go to www. mdanderson.org/patientconference or call the Anderson Network at 800-3456324 or 713-792-2553.

Conference location: Omni Houston Hotel Westside, 13210 Katy Freeway, Houston, TX 77079

I am a

q Patient/Survivor q Caregiver/Family q MD Anderson Volunteer q Other

Hotel rates:

Name: Last _____________________________ First________________________________

The hotel is offering a group room rate of $95 for reservations made by Sept. 9.

Address:______________________________________________________________________

For reservations and directions, call 1-800-THE-OMNI (1-800-843-6664).

Be sure to mention that you want The University of Texas MD Anderson group rate.

Parking: Self-parking is available at no charge.

Valet parking is at your own expense.

Photography By registering, I understand that MD Anderson will be photographing and/or recording the Survivorship Conference and that as a participant in the conference, my image or voice may be included in the photos and/or recordings made by or for MD Anderson. By registering for and/or participating in the conference (1) I irrevocably give permission to MD Anderson to have photographs and audio or audiovisual recordings taken or made of me in connection with the conference activities (the “Media Materials”) and to use, copy, distribute, display, exhibit, and release the Media Materials in connection with any of its business, educational, professional, or fundraising activities; (2) I release MD Anderson and The University of Texas System and their Board of Regents, officers, agents, and employees from any and all liability in connection with the Media Materials; and (3) I waive all rights, interest, or claims for payment or other compensation in connection with any use, copying, distribution, display, exhibition, or release of the Media Materials.

City:_ __________________________________________

State:______________________

Zip:_ __________________ _ Daytime phone:_ _____________________________________ E-mail address:________________________________________________________________

Registration fee: Registration is $50 until Sept. 17. After that date, participants must

register at the conference for a late registration fee of $60. Conference fee covers all activities and meals, including self-parking, Friday night banquet, Saturday luncheon and coffee breaks throughout the conference. I will attend/need: the banquet on Friday night

q yes

q no

vegetarian meals

q yes

q no

Breakout sessions: If you’re able to go online to www.mdanderson.org/patientconference and consult the conference agenda, please choose the number of the breakout session you would like to attend in each cluster on Friday and Saturday and list by number here: Friday, Cluster 1 _________________________ Friday, Cluster 2_______________________ Friday, Cluster 3 _________________________ Saturday, Cluster 4_ ___________________

Payment information: The registration fee for the conference is $50, which covers only

a minimal amount of the cost of the conference. The price is kept low due to the generosity of MD Anderson, corporations and individuals.

Please make checks payable to UT MD Anderson Cancer Center. If you are paying by credit card, check one:

q VISA

q MasterCard

q American Express

Total amount to be charged:_____________________________________________________ Card number: _________________________________________ Exp. date: _ ____________ Authorized signature: __________________________________________________________

For additional conference information, including transportation to and from Houston airports, call the Anderson Network at 800-345-6324 or 713-7922553, or visit www.mdanderson.org/ patientconference.

Those paying by credit card may fax the registration form to 713-794-1724, but an authorized signature must accompany the form.

If you require a wheelchair, oxygen, etc., please plan to bring your own equipment to the conference.

For the protection of patients undergoing treatment, children under 16 years of age are not allowed.

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The University of Texas MD Anderson Cancer Center Division of Public Affairs 156300/18050661 – Unit 700 P.O. Box 301439 Houston, TX 77030-1439

Non-Profit Org. U.S. Postage PAID Houston, Texas Permit No. 7052

network The Anderson Network is a program of Volunteer Services at MD Anderson Cancer Center.

Address changes should be sent to: Mary Brolley The University of Texas MD Anderson Cancer Center Communications Office – Unit 700 6900 Fannin St. Houston, TX 77030-3800 Phone: 713-792-0658 Fax: 713-563-9735 E-mail: mbrolley@mdanderson.org Articles and photos may be reprinted with permission.

Susan French, Executive Director, Volunteer Services Debbie Schultz, Assistant Director, Volunteer Services/ Anderson Network Mary Brolley, Writer/Editor, Network Lana Maciel, Contributing Writer Gini Reed, Graphic Design Pamela Lewis, Chair, Anderson Network © 2010 The University of Texas MD Anderson Cancer Center

Page 8 Briefs New logo renews commitment to our mission For nearly 70 years, MD Anderson has been defined by a single, powerful idea — eliminating cancer.

It inspires everyone who works here. It captures the essence of what we do. It’s our mission.

We recently introduced MD Anderson’s new logo, which integrates this mission into the institution’s name. The red line striking through the word “Cancer” translates the “Making Cancer History®” tagline into a dramatic visual signature.

The logo is central to MD Anderson’s brand, which is how other people perceive our institution and what we do, and encompasses all the attributes that make us distinctive.

To learn more, check online at www.mdanderson.org/logo.

To share your thoughts on our new logo, e-mail Network editor Mary Brolley at mbrolley@mdanderson.org.

www.mdanderson.org/andersonnetwork

Register online now for Anderson Network’s Cancer Survivorship Conference Sept. 24-25 www.mdanderson.org/patientconference 713-792-2553 800-345-6424