NEOPLASIA 2/2017

ISSUE 02 / 2017 PP9164 / 08 / 2012 ( 030729 )

MAKNA Bursary System Goes Online!

- Page 06

Never Give Up, Never Give In - Page 21

MAKNA Continuous Education (MCE) – SABAH Homestay - Page 22

editorial PENASIHAT / ADVISORS Dato’ Mohd Farid Ariffin Farahida Mohd Farid EDITORIAL Geraldine Teoh Prema Ramasamy PENYUMBANG / CONTRIBUTORS Ben Aime-Lim Benedict Lian Shi Xiang Dr Nethia Mohana-Kumaran Dr Yeap Swee Keong Monica Dius Nhan T Dinh Siti Fairus Abdul Rahman Vemanna Appannah DITERBITKAN OLEH / PUBLISHED BY National Cancer Council (MAKNA) BG 03A & 05, Ground Floor, Megan Ambassy, 225 Jalan Ampang, 50450 Kuala Lumpur.

T +603-2162 9178 F +603-2162 9203 E makna@makna.org.my www.makna.org.my www.facebook.com/maknacancer www.twitter.com/makna_malaysia DICETAK OLEH / PRINTED BY Percetakan Jiwabaru Sdn Bhd No.2 Jalan P/8, Kawasan MIEL Fasa 2, Bandar Baru Bangi, 43650 Bangi, Selangor Darul Ehsan.

T +603-8925 6688 F +603-8925 1688 REKACIPTA / DESIGN SG Global Support Services Sdn Bhd Level 18, Axiata Tower, No. 9 Jalan Stesen Sentral 5, KL Sentral, 50470 Kuala Lumpur.

T +603-2260 1717 F +603 2260 2211 www.sgglobalsupport.com

IMPORTANT MESSAGE: The content here is general in nature and is provided for information purpose only. It is not a substitute for professional medical advice.

Please consult your physician on any questions or concerns you may have regarding your health.

contents 01 From the President’s Desk NEWS & HAPPENINGS 05 Pink is The New Bold 06 MAKNA Bursary System Goes Online!

07 POS Malaysia My Distribution Delivers to MAKNA Patients 08 Pedal Power! Kayuhan Amal Kastam 1Malaysia (KAK1M) RESEARCH 09 Newcastle Disease Virus as Vaccine for Cancer Therapy 11 Nasopharyngeal Carcinoma – A Cancer with Remarkable Distinct Regional and Racial Prevalence INTERNATIONAL 14 Free Cancer Screening and Awareness 15 “I Choose Life” – Perceiving it Right VOLUNTEER 17 Re-CYCLE Give CYCLE 2016 – Mission Accomplished!

19 Learning Basic Counseling Skills with Dr Aizan Sofia Amin 20 MAKNA Volunteer Leaders Quarterly Meeting LIFE GOES ON 21 Never Give Up, Never Give In

COVER STORY 22 MAKNA Continuous Education (MCE) – SABAH Homestay 25 All in A Day’s Work

PRESIDENT’S DESK

Dear friends, As we enter into the new quarter, many of us are looking forward to celebrating Mother’s Day and Father’s Day, including myself. One of the best things I have enjoyed about working at MAKNA has been being with family.

I do not mean this only in terms of my biological family, although this is also a genuine pleasure for me. Rather, I mean being with the greater family that we share – you, our dedicated donors, our terrific staff, volunteers, and especially our patients and their families. This to me is our MAKNA family.

Family is a place of love, even when the going gets tough. Especially when the going gets tough. It is a love that is alive and that is worth fighting for with all we’ve got. I believe that we, who are a part of MAKNA, understand this in a profound way.

Some of the members of our great MAKNA family are facing rough times with cancer and we want to be there for them and to support them the best way we can. Our staff went to stay with some of our patients in Sabah as part of the MAKNA Homestay Programme, a three-day-two-night visit to really get to know our patients and their families and to be in each other’s company. It meant a lot to us to be welcomed into our patients’ homes with such warmth and generosity, despite their homes being in modest, even dilapidated condition in the most remote areas of the state. Most of the patients who participated in the Homestay Programme live with minimal facilities and comforts.

The MAKNA Homestay Programme is compulsory for all MAKNA staff. It is a crucial part of our experiential learning and motivation, and enables us to continually give our best to our disadvantaged patients. We know that faceto-face outreach plays an enormous role in making our work genuine, caring and meaningful, and therefore, we do not hold back nor hesitate. To work for MAKNA is to dive right in. It is also an opportunity to check in and see how our patients are doing, if they need further assistance or by contrast, need less. Mostly, it is a good time to catch up and help out where it is needed.

I trust that you will enjoy reading more about the Homestay Programme in the pages that follow in this issue as well as updates on our other activities last quarter. Thank you for contributing your time and supports and for being part of this great family.

Farid NEOPLASIA ISSUE 02/2017

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PRESIDENT’S DESK

Saudara saudari yang saya hormati, Menjelang suku tahun baharu ini, ramai antara kita yang tidak sabar untuk meraikan Hari Bapa, termasuklah saya. Salah satu perkara terbaik yang saya nikmati apabila bekerja di MAKNA, adalah terasa seperti berada bersama keluarga. Mereka bukanlah keluarga kandung saya, namun kehadiran mereka sememangnya manjadi suatu keseronokan buat saya. Maksud saya, pengalaman berada dalam keluarga besar ini, akan dikongsi bersamasama dengan anda, khususnya penderma kami, barisan staf dan sukarelawan terbaik kami, para pesakit serta keluarga mereka. Bagi saya inilah keluarga besar MAKNA. Keluarga menjadi sumber kasih sayang, apabila berlaku kesukaran dalam hidup. Terutamanya ketika beban yang kita hadapi berat untuk dipikul. Kasih sayang memberi nafas untuk kita meneruskan hidup dan berjuang semampu mungkin. Saya percaya, sesiapa yang merupakan sebahagian daripada MAKNA dapat menebak perasaan ini dengan lebih mendalam.

Sebahagian daripada ahli keluarga besar MAKNA sedang menghadapi liku hidup bertarung dengan kanser. Maka kami mahu berada bersama dengan mereka dan menghulurkan sokongan sebaik mungkin. Kakitangan kami sempat mengunjungi beberapa pesakit di Sabah melalui Program MAKNA Homestay selama tiga hari dua malam, bagi mengenali pesakit dan keluarga mereka serta menemani antara satu sama lain. Amat bermakna buat kami, apabila pesakit begitu mengalu-alukan kedatangan kami dengan mesra dan bermurah hati, walaupun rumah mereka dalam keadaan sederhana dan usang di kawasan terpencil negeri ini. Kebanyakan pesakit yang menyertai Program Inap Desa ini mempunyai kemudahan dan keselesaan yang terhad.

Program MAKNA Homestay ini diwajibkan ke atas semua staf MAKNA. Hal ini merupakan bahagian yang paling kritikal dalam pembelajaran berasaskan pengalaman dan menjadi motivasi, membolehkan kami untuk terus menyumbang yang terbaik kepada pesakit yang kurang bernasib baik. Kami menyedari hubungan bersemuka memainkan peranan yang besar dalam membentuk sifat ikhlas, penyayang dan bermakna dalam pekerjaan, oleh sebab itulah kami tidak teragak-agak dan ragu-ragu untuk menjalani program ini.

Bekerja untuk MAKNA tidak memberi ruang untuk kita memandang ke belakang. Hal ini merupakan peluang untuk kita meneliti dan melihat keadaan semasa pesakit, mengetahui jika mereka memerlukan lebih bantuan atau sebaliknya. Kebanyakan masa adalah untuk mengambil tahu keadaan masing-masing dan memberi bantuan mengikut keperluan.

Saya percaya anda akan terhibur untuk membaca dengan lebih lanjut berkenaan Program MAKNA Homestay di halaman seterusnya dalam isu ini, selain mengemas kini aktivitiaktiviti yang kami jalankan dalam suku sebelum ini. Terima kasih atas sumbangan masa dan sokongan anda kepada kami, dan terima kasih kerana sudi menjadi sebahagian daripada keluarga besar ini.

Farid WWW.MAKNA.ORG.MY

02

PRESIDENT’S DESK

亲爱的朋友们， 在迈入新一个季度之际，绝大部分的我们包括我本身，已迫不及待 想欢庆母亲节和父亲节。我非常享受在MAKNA工作的其中一个美妙 之处就是能够与家人相聚在一起。我在此指的家人并不只是生物学 上的家人，虽然与亲人相聚也能带给我真正的快乐，但我在此所指 的是共同分享一切的大家庭，即你们—我们致力奉献的捐赠者、优 秀的职员、义工们，以及病患和他们的家属们。对我来说，我们就 是MAKNA的大家庭。 家庭是就算我们陷入困境时还是一个充满爱的所在；特别是在我们 陷入困境时，爱能让我们恢复冲劲，而这使它成为值得我们全力以 赴去争取的目标。我相信身为MAKNA一份子的我们对爱有更深的体 会。 我们的MAKNA大家庭中有一些成员正在面对着与癌症搏斗的艰难时 期，而我们想要陪伴在他们身边，尽一己之力以最佳的方式来支持 他们。在MAKNA寄宿家庭计划下，我们的职员前往沙巴寄宿在病 患们的家里。这个三天两夜的拜访里，我们的职员能够深入了解病 患和他们的家人，并互相陪伴打气。尽管病患们居住在简朴、简陋 甚至该州最偏远的地区，他们温暖及慷慨的接待对我们来说意义非 凡。 大部分参与此寄宿计划的病患居住在设备及生活品质有限的环 境下。 MAKNA寄宿计划是所有MAKNA职员必须参与的一个计划。它是 我们从实际体验中学习和获得动力的重要环节，并让我们能继续尽 自己最大的努力来帮助不幸的病患们。我们深知面对面的接触在我 们的工作中扮演着重要角色，它让我们能更真诚地工作、付出关爱 及让我们的付出更有意义。因此，我们不愿这方面上有所保留或犹 疑。想要在MAKNA里工作，就必须全心投入。这也是一个让我们跟 进病患们近况的机会，以了解他们是否需要更多或更少的援助。最 重要是，这是一个了解他们近况及提供所需帮助的好时机。 我相信你们还会继续享受展阅这期之后即将登场的更多关于寄宿计 划和上一季其他活动的最新汇报。感谢你们贡献出自己的时间来支 持我们，以及愿意成为这个大家庭的一份子。

法立

NEOPLASIA ISSUE 02/2017

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PRESIDENT’S DESK

அன்புள்ள நண்பர்களே, புது காலாண்டில் நுழையும் இவ்வேளையில் நம்மில் பலர், அன்னையர் தினத்தையும், தந்தையர் தினத்தையும் க�ொண்டாடுவதற்கு எதிர்பார்த்துக் க�ொண்டிருக்கிற�ோம்.

MAKNA – வில் பணியாற்றுவது, குடும்பத்துடன் வாழ்வது ப�ோன்ற உணர்வே நான் அடைந்த மகிழ்ச்சிகளில் எல்லாவற்றையும் விட பெரும் மகிழ்ச்சியாக உள்ளது. இரத்த உறவுள்ள குடும்பமாக இல்லா விட்டாலும் எனக்கு உண்மையான மகிழ்ச்சியைத் தருகிறது. சரியாகச் ச�ொன்னால் இந்த மேன்மையுடைய குடும்பத்துடன், உங்களையும் மற்றும் நன்கொடையாளர்கள், நம் பணியாளர்கள், தன்னார்வலர்கள், முக்கியமாக ந�ோயாளிகள், அவர்களின் குடும்பத்தினர் அனைவரும் இந்த மகிழ்ச்சியில் பங்கு பெற விரும்புகிற�ோம். இது நம்முடைய MAKNA குடும்பம். செயல்பாடுகளில் சிரமம் இருந்தாலும் அன்பு உள்ள இடம்தான் குடும்பம். சிரமப்பட்டு இந்த நிலைமையை அடைந்ததே அன்புதான் காரணம். நாம் MAKNA-வின் ஒருபகுதியாக இருப்பதை மிக ஆழமாக புரிந்து க�ொள்வோம் என நம்புகிறேன்.

MAKNA குடும்பத்தின் சிலர் புற்றுந�ோயினால் சிரமமான நேரத்தை எதிர் ந�ோக்குகிறார்கள். நாம் அங்கு சென்று அவர்களுக்கு துணையாக இருப்பத�ோடு நம்மால் முடிந்த உதவிகளை செய்கிற�ோம். குடும்பத்துடன் தங்குதல் என்ற MAKNA நிகழ்ச்சி நிரலின்படி சபாவில் உள்ள சில ந�ோயாளிகளின் வடுகளில் ீ நம் பணியாளர்கள் மூன்று நாள், இரண்டு இரவு தங்கி அவர்களின் நிலைமையை கண்டறிந்தார்கள். ந�ோயாளிகளின் வடுகள் ீ நகரத்துக்கு ஒதுக்குப் புறத்திலும், ம�ோசமான நிலையிலும் இருந்தாலும் அவர்கள் எங்களை வரவேற்கும் விதமே அலாதியானது. பெரும்பாலன ந�ோயாளிகள் மிகவும் குறைந்த வசதியுடன் வாழ்கிறார்கள். இந்த MAKNA வட்டோடு ீ தங்குதல் நிகழ்ச்சி எல்லா MAKNA பணியாளர்களுக்கும் கட்டாயமானது. நமது ஆராய்ச்சியின் ஒரு பகுதி சிக்கலாக இருந்தாலும், நமது பேகுறைந்த ந�ோயாளிகளுக்கு த�ொடர்ந்து நம்மால் இயன்ற உதவிகளைச் செய்ய தூண்டுகிறது. நேருக்கு நேர் சந்தித்து உண்மையான சேவை ஆற்றுவதுதான் நமது மிகப் பெரிய பங்கு என்பது நமக்குத் தெரியும். அதனால் தயங்க மாட்டோம். MAKNAவுக்கு வேலை செய்வது நேரடியாக தண்ணீரில் குதிப்பது ப�ோன்றது. மேலும் நமதுந�ோயாளிகளின் நிலைமையை, கண்டறிந்து உதவ இது ஒரு வாய்ப்பாக அமைகிறது. பெரும்பாலும் உதவி தேவைப்படுபவர்களுக்கு உதவி செய்வது நல்ல தருனமாகவும் அமைகிறது. இந்த குடும்பத�ோடு தங்குதல் என்ற நிகழ்ச்சியை முழுமையாக படித்து மகிழ்ச்சியடைந்தத�ோடு, ப�ோன இறுதி காலாண்டு இதழில் குறிப்பிட்ட எங்களின் செயல்பாடுகளையும் அறிந்திருப்பீர்கள் என நம்புகிறேன். இந்த பெரும் குடும்பத்தின் ஒரு பகுதியாக இருந்து ஆதரவு அளிப்பதற்கும், நன்கொடை அளிப்பதற்கும் நன்றியை தெரிவித்துக் க�ொள்கிறேன்.

ப்ஹாரிட்

WWW.MAKNA.ORG.MY

04

NEWS & HAPPENINGS

PINK IS THE NEW BOLD

Breast cancer is a major global health problem and the leading cause of death among women of all ethnic backgrounds. Each year, an estimated 1.6 million new cases are diagnosed worldwide and around 5,000 Malaysian women are diagnosed with breast cancer every year.

PINK IS THE NEW BOLD was a charity campaign launched by Celmonze The Signature (CTS) in collaboration with MAKNA in October 2016, to educate and provide support for breast cancer patients and survivors.

CTS has been a beauty brand in Malaysia for over 16 years, with 17 outlets throughout Malaysia and Singapore. The campaign’s main message to all women was to start breast selfexaminations. With MAKNA’s support, CTS also designed a platform that worked both

online and offline, and enabled networking for access to information not only on breast cancer, but also cancer in general.

In a gesture of support for cancer patients, CTS helped raised funds by pooling resources alongside business partners from Celmonze The Signature: IOI Mall, Bandar Puteri Puchong, Casa Tropicana, Damansara Perdana, Sri Petaling, Empire Shopping Gallery, Da Men Mall, Pearl Shopping Gallery, Lobak Seremban, Kuala Selangor, Ipoh, Tangkak, Batu Pahat, Sri Tebrau and Celmonze Sdn Bhd. By donating a percentage of their sales, CTS and its partners have taken a stand to ease the burden of victims and create awareness by distributing flyers to educate the public.

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In a separate event on 10 January 2017, CTS organised a cancer awareness talk led by Habiba Abd Rahman, MAKNA’s Outreach Programme Facilitator, which highlighted to participants the importance of understanding the disease. CTS successfully raised RM5,985 in collections and presented the cheque to MAKNA. CTS hopes to continue efforts to support the cancer cause and to reach out to more patients and survivors, with the full backing of its business partners. To cheer CTS on in its love and support for cancer patients, pop into any CTS outlet and drop a little love in the MAKNA donation boxes placed at their counters.

MAKNA BURSARY SYSTEM GOES ONLINE!

MAKNA receives nearly 5,000 applications every year from 94 hospitals across Malaysia. After many years of manual processing, MAKNA has recognised the need to get on par with the latest technology to ensure that all our applications are processed efficiently, so as to expedite responses to patients and to get assistance to them as swiftly as possible.

MAKNA has been working on developing an applications management system over the past year, and we are now pleased to announce that we have created a functioning platform and conducted pilot testing at six hospitals across Malaysia, including Sabah and Sarawak. The system also be used by medical social work officers at government hospitals, when they receive applications from patients and refer them to MAKNA. The first digitally-submitted case was from Hospital UMUM Sarawak, which was received successfully.

MAKNA aims to officially launch the system at all our partner hospitals and to move entirely to paperless processing by the month of May. MAKNA aims to introduce the system to more hospitals and to move to entirely paperless processing by the coming months.

WWW.MAKNA.ORG.MY

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POS MALAYSIA MY DISTRIBUTION DELIVERS TO MAKNA PATIENTS

MAKNA is collaborating with national postal service provider, Pos Malaysia, on a new delivery channel to reach cancer patients who are poor all across the country. On 1 November 2016, Pos Malaysia kickstarted its delivery of supplies right to the doorsteps of cancer patients’ homes nationwide.

The idea for this collaboration was conceived when MAKNA realised that many patients especially those in rural areas were not able to make the frequent journeys necessary to the hospital and back to collect their prescribed supplies or seek treatment.

Thus, many patients ceased their commutes and did not recover.

Pos Malaysia’s generous offer to take on MAKNA deliveries as a charity service is thus transformative of our cancer patients’ experience, especially for those in remote areas. Efficient delivery to their doorsteps will save them time, funds and physical strain.

The Pos Malaysia-MAKNA collaboration achieves a few objectives primarily focused on improving delivery of essential ancillary items and products to cancer patients, and increasing access to supplies.

Most of the prescribed items to be included in Pos Malaysia’s MAKNA deliveries are ripple mattresses, formula milk, colostomy/ urostomy bags, wheelchairs and diapers. The predicted delivery times for supplies would be four days for Peninsular Malaysia and seven days for East Malaysia.

Common feedback from Pos Malaysia delivery personnel is that it is challenging to locate houses in rural areas and that at times, the temptation to give up is great. In the end, however, the expression of relief from the patients when they receive their supplies is well worth the trouble. Pos Malaysia staff walk away feeling satisfied with a job well done after each MAKNA delivery.

MAKNA’s aim is to provide assistance in any way possible to ensure that patients from the lower income group are able to access treatment and supplies to survive, and we are very grateful to Pos Malaysia for giving to the cancer community in the ways and paths they know so well.

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Eeoj Gnawa, Pos Malaysia delivery personnel posted: Jalan jauh pegi kawasan pendalaman, dengan alamat yang tidak lengkap, meredah jln hutan, jln sempit, jln berlubang, jln tidak bertar... kalau ekot rasa hati buang masa nak buat penghantaran ke tempat tersebut... bila ternampak STICKER pada kotak aku terus rasa tanggung jawap amat besar... dengan tampa befikir panjang ku redah semua yang menghalang

NEWS & HAPPENINGS

PEDAL POWER!

KAYUHAN AMAL KASTAM 1MALAYSIA (KAK1M) The 1Malaysia Customs Charity Ride or “Kayuhan Amal 1 Malaysia� (KAK1M) drew a large crowd of cyclists and spectators alike to Dataran Wawasan in Precinct 2, Putrajaya on 21 January 2017. The charity cycling event was organised

by Persatuan Kanan Kastam Malaysia (PERKASA) to mark the 35th International Customs Day celebrated annually on 26 January.

The charity ride was geared towards raising funds to benefit cancer patients while fostering harmony through community interaction. For the Royal Malaysian Customs Department (RMCD), it was an opportunity to enlighten the public about the roles and commitment of the customs department to Malaysian citizens and foreign tourists. The event further aimed to promote a healthy and disciplined lifestyle through cycling and to popularise the activity among Malaysians as a sport or recreation activity.

The RM50 participation fee included a goodie bag containing a dry-fit T-shirt, a cap, a water bottle, food and drink. RM 1 from the fee was donated to MAKNA and members of the RMCD diagnosed with cancer.

KAK1M took place in 15 locations, at all RMCD state offices throughout Malaysia, including Sabah and Sarawak. For those residing in Putrajaya, Kuala Lumpur, Selangor, Negeri Sembilan and Sepang (KLIA), the programme was held centrally at the RMCD head office in Putrajaya, at Dataran Wawasan.

The programme successfully raised RM60,000 to help cancer patients across Malaysia.

A cheque giving ceremony was held after the cycling event, where a mock cheque was presented to MAKNA General Manager, Farahida Mohd Farid.

NEWCASTLE DISEASE VIRUS AS VACCINE FOR CANCER THERAPY Dr Yeap Swee Keong, Institute of Bioscience, Universiti Putra Malaysia The “Newcastle” disease was named after its geographical origin of outbreak in chickens, which is caused by a highly infectious virus on avian species. However, despite being the major cause of economic losses in the poultry industry worldwide, this avian Newcastle Disease Virus (NDV) was found to exert milder effect on humans. Coupled with the discovery of NDV as an oncolytic virus in the 1950’s, the interest of using NDV and other viruses in fighting human cancers has gained increasing attention over the past years.

effect of NDV portrays two major advantages: (i) NDV infects and replicates more efficiently in human cancer cells than in normal cells (ii) cancer cells die via programmed cell death (or more commonly known as apoptosis) upon infection. These benefits pose great importance in cancer treatment as the specificity and selectivity of NDV against cancer as well as the induction of apoptosis, which avoids severe inflammation responses, would impart fewer side effects to human as compared to many anticancer drugs.

Although the use of NDV in cancer treatment has not been approved by the US Food and Drug Administration (FDA), outcome of pre-clinical and clinical trials of NDV as a cancer virotherapy agent has been encouraging. The oncolytic

Lately, cancer immunotherapy has been recognised as a promising treatment for cancer. Interestingly, besides its selectivity and killing mode on cancer cells, recent studies also suggested that NDV can defeat cancer by enhancing the NEOPLASIA ISSUE 02/2017

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immune system. In a previous study, we found that NDV enhanced antitumour effect of natural killer cells (a cytotoxic lymphocyte critical for defense against tumour cells). When coupled to a novel geneticallyengineered immunostimulator, NDV showed even better antitumour effect in mice models.

Although a handful of putative oncolytic and immunostimulatory mechanisms of NDV had been proposed, the differential regulation by which NDV causes infection, replication and killing/ survival pathway on normal and cancerous breast cells remains elusive. Aiming to differentiate between the cytolytic and immunomodulatory mechanisms of NDV on healthy and neoplastic breast cells, the present study was initiated to compare the gene expression profile of both cell types post-infected by NDV.

RESEARCH

By using the global mRNA (messenger Ribonucleic Acid) sequencing technique, this study has confirmed the concept that NDV viral therapy does not depend solely on the specific lysis properties on cancer cells. Furthermore, immune-related genes were not only activated in NDV-infected normal cells as some of the genes were also detected in the infected cancer cells. Thus, the antiviral response in both normal and cancer cells could contribute to the generation of immune reactions against tumour.

This immunostimulating capability of NDV is important as it can “switch” the infected cancerous cells to activate the immunostimulatory related pathway, which in turn aids in the activation of anticancer immunity. Nevertheless, these findings also enlighten us on the mechanism underlying the antitumour immunostimulatory effect of NDV on breast cancer cells as observed in our previous study as well as its capability to activate anticancer immunity as reported by Zamarin et. al.

Using this information, we are looking forward to develop a NDV-based cancer vaccine with better efficacy, specificity and safety. To achieve this aim, a flagship project has been initiated to re-engineer NDV to enhance its specificity and immunostimulation against cancer. It is anticipated that this NDV-based vaccine can serve as a better and more affordable cancer treatment option that could augment therapeutic outcome of the existing cancer therapies in the near future.

This research study was performed in light of the advantages of immunotherapy as a treatment option against human cancer.

The project was funded

by MAKNA from the 2014 MAKNA Cancer Research Award and was led by Dr Yeap Swee Keong from the Institute of Bioscience, Universiti Putra Malaysia.

However, this immunostimulation has a doubleedged sword effect – whilst capable of creating long-lasting anticancer immunity, the infective virus is also subjected to eradication, which could impact on the efficiency of direct NDV-mediated oncolysis. Thus, it is important to further improve our understanding of the biology, tropisms, oncolytic mechanism and immunomodulation of NDV for its development as an anticancer agent.

Dr Yeap Swee Keong is a research fellow in the Institute of Bioscience, Universiti Putra Malaysia. He is interested in coding and non-coding transcription regulation in cancer and immunological research.

Email: skyeap2005@gmail.com.

L-R: Dr Tan Sheau Wei, Madam Nancy Liew, Dr Yeap Swee Keong, Dr Dilan Satharasinghe WWW.MAKNA.ORG.MY

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NASOPHARYNGEAL CARCINOMA

a cancer with remarkable distinct regional and racial prevalence By: Benedict Lian Shi Xiang, Siti Fairus Abdul Rahman and *Dr Nethia Mohana-Kumaran

southern Chinese, Inuits of Alaska and native Greenlanders [4,5]. In Southern China, high NPC incidence rates were recorded particularly in the province of Guangdong, Guangxi, Hainan, Jiangxi, Hunan and Fujian [6]. Cantonese inhabiting these regions were reported to have the highest rate of NPC incidence [6]. Interestingly, incidence rate of NPC in Northern China is low [7].

Nasopharyngeal carcinoma (NPC) affects the nasopharynx, which is situated on the upper region of the pharynx [1] (Figure 1). More precisely, NPC manifests beneath the nasopharyngeal mucosa or within the pharyngeal recess, which is also known as the Fossa of RosenmĂźller [2,3].

NPC has remarkable distinct regional and racial prevalence. The cancer is less prevalent among the Caucasians but is rampant among the

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RESEARCH Johor, Sabah and Sarawak. The ethnic Chinese recorded the highest NPC incidence compared to the Malays and the Indians in Peninsular Malaysia whereas the Bidayuh population recorded the highest NPC incidences in Sarawak compared to the Chinese and the Malays [17].

In Singapore, NPC is the eighth most common cancer. Similar to Malaysia, NPC is common among Chinese compared to the other races in Singapore [18]. Whilst in Indonesia, NPC is the fourth most common cancer after cervical and breast cancers and melanoma. NPC was more common in some local natives of Indonesia compared to the others. The cancer was more widespread among the Javanese followed by the Sundanase and the Sumatranese natives [19].

Figure source: www.cancer.gov Figure 1: Anatomy of human pharynx.

The pharynx is divided into three regions.

Nasopharynx is situated on the uppermost part of the pharynx, followed by the oropharynx and hypopharynx

Unlike other head and neck cancers, NPC is highly radio- and chemosensitive and patients who are diagnosed early respond well to these treatment modalities. The 5-year survival rate for stage I and stage II patients’ range from 72 to 90% [20] but unfortunately this is not the case for patients’ who are diagnosed late. The 5-year survival rate for stage III and IV patients are ~55% and 30%, respectively mostly attributed to locoregional recurrence and metastasis [20]. Majority of NPC cases are also diagnosed late due to trivial clinical symptoms (e.g. headache, nasal and aural obstructions) and patients seeking treatment late after the onset of symptoms. Prognosis for patients suffering from a recurrence or advance disease worsens and therefore they respond poorly to the existing treatment modalities [21].

The incidence of NPC continues to be high among Chinese emigrants to Alaska, Greenland, Canada and North America but the incidences are low among ethnic Chinese who are born in North America [8,9]. High incidences of NPC have also been reported in Hong Kong, Taiwan, Philippines, Thailand, India and Africa [9,10].

The distinct geographic and ethnic distribution of NPC demonstrate the multifactorial etiology of the cancer, including environmental factors which may include exposure to nitrosamines and consumption of salted and pickled food, genetic susceptibility and Epstein-Barr virus (EBV) infection [11-14].

Incidence and mortality rates of NPC in Southeast Asia was the highest compared to other countries with high NPC incidence and mortality rates [9]. Among the Southeast Asian countries, high incidences of NPC were recorded in countries namely Malaysia, Indonesia and Singapore (Table 1). The incidence and mortality rates of NPC were two to three times higher in males compared to females [15] (Table 1).

Deeper understanding of the molecular mechanisms of NPC has led to testing of targeted therapies for NPC management.

Targeted therapies target particular mutation(s) in cancer cells and exhibit fewer side-effects compared to chemotherapy.

Epidermal Growth Factor Receptor (EGFR) inhibitor cetuximab (ErbituxÂŽ) are used to treat NPC patients. EGFR is a cell surface receptor and upon binding to its ligand can activate cell signalling pathways which can lead to cell proliferation. EGFR is expressed in >80% advance NPC patients and hence a promising therapeutic target [22]. A phase II

NPC was ranked as the fourth most common cancer in Malaysia and the third most common cancer affecting Malaysian males [16]. The incidences were higher in males residing in

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Nations

Incidence rate (Age-standardized rate per 100,000)

Mortality rate (Age-standardized rate per 100,000)

Male

Female

Male

Female

Malaysia

10.6

3.9

3.9

1.2

Singapore

9.7

3.2

4.4

1.3

Indonesia

8.3

3.0

5.0

1.6

Vietnam

7.7

3.4

4.8

2.0

Brunei

7.6

1.5

3.4

0.5

Table 1: Countries with the highest incidence rates of nasopharyngeal carcinoma in Southeast Asia.

clinical study which evaluated the combination of cetuximab with concurrent cisplatin and intensity-modulated radiotherapy (IMRT), in locoregionally advanced NPC patients, reported 2-year progression free survival of 86.5% [23].

Another clinical study which tested bevacizumab (Avastin®), an angiogenesis inhibitor in combination with standard chemoradiotion, displayed delayed progression of NPC to distant sites [24]. Efforts are underway to test immunomodulatory agents and BH3-mimetics (these mimetics induce apoptosis in cancer cells – a mode of programmed cell death) for the treatment of NPC. References [1] Probst, R et al. 2005. Thieme.

[2] Hoe, J. 1989. American journal of neuroradiology, 10(4), 839-844.

[3] Sham, J.S et al. 1990. International Journal of Radiation Oncology* Biology* Physics, 19(4), 929-933.

[4] Nielsen, N.H et al. 1977. Acta Pathologica Microbiologica Scandinavica Section A Pathology, 85(6), 850-858.

[5] Parkin, D.M et al. 1992. Cancer incidence in five continents, volume VI, international agency for research on cancer.

[6] Zhang, S et al. 2007. Bulletin of Chinese Cancer, 16, 494-507.

[7] Wei, K.-R. et al. 2014. Chinese journal of cancer, 33(8), 381.

[8] Buell, P. 1974. Cancer research, 34(5), 1189-1191.

[9] Torre, L.A et al. 2015. CA: a cancer journal for clinicians, 65(2), 87-108.

[10] Hsu, C et al. 2006. Cancer Epidemiology Biomarkers & Prevention, 15(5), 856-861.

[11] Zou, X.N et al. 1994. International Journal of Cancer, 59(2), 155-158.

[12] Yu, C.M et al. 1981. Preventive medicine, 10(1), 15-24.

[13] Brennan, B. 2006. Orphanet Journal of Rare Diseases, 1(1), 1.

[14] Li, J et al. 2007. Cancer biology & therapy, 6(12), 19972004.

[15] Jemal, A et al. 2011. CA: a cancer journal for clinicians, 61(2), 69-90.

[16] Omar, Z.A. & Tamin, I.N.S. 2011. National cancer registry report 2007. Malaysia: Ministry of Health.

[17] Devi, B.C et al. 2004. Cancer Epidemiology Biomarkers & Prevention, 13(3), 482-486.

[18] Lee, H et al. 2014. Singapore: National Registry of Diseases Office (NRDO).

[19] Adham, M et al. 2012. Chinese journal of cancer, 31(4), 185.

[20] Chang, J.T.C et al. 2014. Journal of the Formosan Medical Association. 2004;103(7):496–510.

[21] Pua, K et al. 2008. Med J Malaysia, 63(Suppl C), 59-62.

[22] Chua, D.T et al. 2004. International Journal of Radiation Oncology* Biology* Physics, 59(1), 11-20.

[23] Ma, B et al. 2008. Cancer chemotherapy and pharmacology, 62(1), 59-64.

[24] Lee, N.Y et al. 2012. The lancet oncology, 13(2), 172180.

*Corresponding author Dr Nethia Mohana-Kumaran School of Biological Sciences Universiti Sains Malaysia 11800 Penang Email: nethiakumaran@usm.my Dr Nethia Mohana-Kumaran’s research focuses on utilising 3D cell culture model to study the growth, invasion and sensitivity of cancer cells to small molecule inhibitors. She also utilises a genetically engineered mouse model of melanoma to study the contribution of the apoptosis pathway for melanoma biology.

Benedict Lian and Siti Fairus are postgraduate students at the School of Biological Sciences, USM.

INTERNATIONAL

FREE CANCER SCREENING AND AWARENESS

By Nhan T Dinh, MAKNA International Division Executive Lần thứ 5 liên tiếp, MAKNA Việt Nam phối hợp cùng với Quỹ Ngày Mai Tươi Sáng, tháng 11 năm 2016 cùng với nguồn tài trợ đặc biệt từ ngân hàng CIMB Islamic, Malaysia đã tổ chức khám sàng lọc và tư vấn miễn phí cho cán bộ công nhân viên nữ của nhiều công ty, trong đó có Vietnam Airlines, HTV và rất nhiều chị em phụ nữ tại thị trấn Sóc Sơn, Hà Nội.

During its fifth anniversary, MAKNA in Vietnam with The Supportive Fund for Cancer Patients, The Bright Future, organised a meaningful, integral series dubbed “Free Cancer Screening and Awareness”, a campaign funded generously

by CIMB Islamic Malaysia.

445 women over 40 were screened and received consultation from doctors and other health practitioners. This year’s MIV outreach efforts sought to reach a much wider public audience.

We reached out to 9 different corporate organisations including Vietnam Airlines and HTV (Vietnam’s national TV Station), to numerous beneficiaries at Soc Son, Ha Noi. An estimate of 10,000 men and women benefited from either the screening or educational value of the campaign. Twenty-three mammogram cases were referred to the clinic and one was diagnosed with cancer.

445 phụ nữ trên 40 tuổi – nhóm có nguy cơ cao mắc ung thư vú – đã được khám và tư vấn tại buổi khám sàng lọc. Ước tính 10,000 người dân đã nhận được những dịch vụ và thông tin bổ ích từ chương trình nhận thức cộng đồng. 23 kết quả sàng lọc được chuyển đến các bệnh viện trong đó một ca bị chẩn đoán ung thư. Tham gia buổi sàng lọc, các chị em không chỉ nắm rõ hơn tình hình sức khỏe của bản thân mà còn có thể trở thành những sứ giả, tuyên truyền, phổ biến kiến thức về bệnh ung thư và cách phòng tránh hữu hiệu, đơn giản từ bữa ăn hàng ngày đến với những người xung quanh.

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INTERNATIONAL

“I CHOOSE LIFE” – PERCEIVING IT RIGHT

By Nhan T Dinh, MAKNA International Division Executive In accordance with World Cancer Day 4 February, Hung Viet Oncology Hospital and MAKNA co-organised “I Choose Life” panel discussion, themed to educate the community with cancer stigma and voice up an appropriate perception on the disease. The panel also stressed on the importance of realising the power of habits and habit forming, particularly in early detection and healthy diet.

The panel consisted of: • Dr Hoang Dinh Chan, MD, PhD, Director of Hung Viet Oncology Hospital.

• Specialist Dr Ta Chi Phuong, Head of Oncology Department, Hung Viet Hospital • Hai Nguyen, MPH, Branch Manager, MAKNA Vietnam • Ngo Thi Nguyet, colon cancer patient • Pham Thi Ut, breast cancer patient.

Dr. Hoang Dinh Chan, MD, PhD,

Participating in “I Choose Life” panel, audience benefited from expert advice from cancer awareness to early detection. Heartfelt sharing from patients effortlessly encouraged participating crowds on the powerful spirit that cancer patients carry daily.

The panel’s message to the public via World Cancer Day: “Adversity is something admittedly, uncontrollable, however again, it is the attitude that will decide the magnitude of the disease on each patient.”

Dr. Ta Chi Phuong, Oncology Head,

Bad choices can be fixed, errors can be rectified, but health is a one-off gift that each and every one of us should always strive to watch over.

“We do not waste time on sick beds; neither do we waste time weeping any regret or pain. Life cannot be any more precious than it already is, from today on, we all choose life.”

Frequent health check-ups and intensive cancer screening are among the best possible, affordable options for early detection. In doing so, we are all soldiers who courageously stand up against the disease at all fronts!

Nguyen Van Hai, Branch Manager, NEOPLASIA ISSUE 02/2017

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INTERNATIONAL

“TÔI CHỌN SỰ SỐNG”:

GIÚP BẠN NHÌN NHẬN ĐÚNG VỀ BỆNH UNG THƯ Hưởng ứng ngày Thế giới phòng chống ung thư 4/2, Bệnh viện Ung bướu Hưng Việt đã phối hợp với Quỹ MAKNA Malaysia (Majlis Kanser Nasional) tổ chức buổi tọa đàm Tôi chọn sự sống giúp cộng đồng nhận thức đúng về căn bệnh ung thư và tạo thói quen có ý thức khám, sàng lọc, phát hiện ung thư sớm góp phần điều trị hiệu quả bệnh để chung tay giảm thiểu gánh nặng ung thư cho toàn cầu.

Hung Viet Hospital (centre)

Tham gia tọa đàm có: • Tiến sĩ, Bác sĩ chuyên khoa, Thầy thuốc ưu tú Hoàng Đình Chân: Giám đốc Bệnh viện Ung bướu Hưng Việt.

• BS CKII Tạ Chi Phương - Trưởng khoa hóa chất Bệnh viện ung bướu Hưng Việt.

• Ông Nguyễn Văn Hải - Giám Đốc chi nhánh, MAKNA Việt Nam • Cô Ngô Thị Nguyệt: Bệnh nhân ung thư đại trực tràng • Cô Phạm Thị Út: Bệnh nhân ung thư vú Trong buổi tọa đàm Tôi chọn sự sống, những người tham gia đã được nghe những ý kiến của chuyên gia về bệnh ung thư (cách điều trị, phòng chống bệnh) và những lời chia sẻ chân thật, mang tính thuyết phục của chính những người bệnh đang từng ngày phải đối mặt với ung thư.

Hung Viet Hospital (centre)

Qua buổi tọa đàm, các chuyên gia của Bệnh viện Ung bướu Hưng Việt muốn gửi đến thông điệp: “Chẳng ai có thể kiểm soát được những biến cố xảy đến nhưng chủ động đối phó để chiến thắng số phận hay chấp nhận buông xuôi lại là sự lựa chọn của mỗi người.”

Tiền tiêu hết có thể kiếm lại được, những sai lầm có thể sửa chữa...nhưng nếu không còn sức khỏe, những ước mơ của chúng ta sẽ mãi dang dở. “Đừng lãng phí thời gian trên giường bệnh, đừng lãng phí thời gian để tranh đấu với nỗi đau đớn mang tên ung thư. Sự sống rất đáng quý. Ngay từ hôm nay, tôi, bạn, tất cả chúng ta hãy lựa chọn sự sống.”

MAKNA in Vietnam (right)

Khám sức khỏe định kỳ và tầm soát ung thư chuyên sâu chính là cách nhanh nhất, tốt nhất để phát hiện sớm, góp phần điều trị thành công căn bệnh này. Để rồi mỗi ngày trôi qua, chúng ta có thêm một ngày sống khỏe mạnh bên những người thân, thêm yêu và trân trọng cuộc sống tươi đẹp!

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VOLUNTEER

Perlis

Re-CYCLE Give CYCLE 2016

Team 2 - Kona (Kangar) Team 5 - Ray Chell (Alor Setar) Team 7 - Foldie (Alor Setar)

Mission accomplished!

Kedah Team 10 - Chinna Ponnu (Sg Petani)

By Ben-Amie Lim, MAKNA Volunteer Executive

Team 6 - Oscar (Georgetown)

P. Penang

Team 8 - Penang Bike (Air Itam, Penang)

Pahang Team 3 - Scott (Sabak Bernam)

Selangor

Team 4 - Cannondale (Mentakab)

Kuala Team 9 - Mei Mei (Petaling Jaya) Lumpur Team 1 - Treking (Dengkil)

The three-month-long Re-CYCLE Give CYCLE campaign held between September and November 2016 came to a close with the delivery of the tenth restored bicycle to a recipient in Petaling Jaya, Selangor.

This last bicycle delivery followed a number of setbacks such as the recent flood that hit Kelantan which led to the relocation of the beneficiary from there to Petaling Jaya. On 24 February 2017, Fahmie, an elated 4-year-old laid hands on a prized item on his wish list – his very own humble two-wheeler.

Fahmie who was diagnosed with nephroblastoma had been wishing for a bicycle to join his friends riding around the neighborhood. Thanks to ReCYCLE Give CYCLE, his wish has now come true!

MAKNA would like to extend our heartfelt congratulations and gratitude to the Re-CYCLE Give CYCLE team of volunteers, the programme

coordinator, workshop consultants, donors, Art Printing Works Sdn. Bhd., and well-wishers of the project. The campaign was successfully executed thanks to each and every one of you!

Look out for the next edition of Re-CYCLE Give CYCLE, and join us in bringing joy to needy cancer patients across Malaysia.

Register on our website: www.makna.org.my to be a MAKNA volunteer or write in to priyadarshini@makna.org.my for more information about volunteering with MAKNA.

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Team 1

Team 2

Team 3

Team 4

Team 5

Team 7

Team 6

Team 8

Team 9

Team 10

VOLUNTEER

LEARNING BASIC COUNSELING SKILLS WITH DR AIZAN SOFIA AMIN

By Vemanna Appannah, Deputy General Manager MAKNA A Basic Counseling Skills training was held over a friendly tea session with Dr Aizan Sofia Amin at the MAKNA office on a Saturday afternoon in (which month). Thirty-six MAKNA volunteers benefited from the two-hour session infused with useful tips for volunteers on ‘How to speak to someone with cancer’. A cancer survivor herself, Dr Aizan shared why it was important to think before we speak, how to be a good listener and to refrain from making any physical assessmentts (such as loss of hair, weight loss or even losing a part of their flesh or body parts) before and during treatment.

role they play in the first step of enhancing interaction with others. The volunteers took home valuable knowledge which will not only be helpful during conversations with cancer patients and their families, but will also enhance their overall interaction skills.

A MAKNA volunteer of over 11 years, Dr Aizan Sofia has contributed a considerable amount of her time and expertise with MAKNA. In August 2008, MAKNA recognised her efforts and achievements with the Special Recognition & Promising Youth Awards. Dr Aizan was diagnosed with osteosarcoma in 1997 and lost her right leg two years later at the age of sixteen.

She exhibits great leadership and continues to volunteer at MAKNA.

Volunteers learned the importance of not making comparisons between the patient and others, but to show they cared while speaking to a cancer patient and to share encouraging stories. The session was attended by a mix of cancer survivors, non-cancer survivors, caregivers and non-caregivers. The counseling tips shared by Dr Aizan resonated with many of the volunteers, and a number of cancer survivors and caregivers openly shared their real-life experiences during the session, which priceless learning opportunities for all present.

Dr Aizan Sofia Amin is a Senior Lecturer at the Psychology and Human Well-Being Research Centre at the Faculty of Social Sciences and Humanities, University Kebangsaan Malaysia. She is a registered counselor and holds a Masters Degree in Counseling Psychology from University Kebangsaan Malaysia and a PhD in Disabilities Studies from the University of Glasgow. This year, Dr Aizan was selected as a finalist for the UK Alumni Award 2017 by the British Council one of 15 other shorlisted Malaysians from a pool of 1,200 applicants. The award honours the success of individuals whose achievements in Malaysia have been, in some measure, influenced by their experience of studying at a UK University.

Besides the content of a conversation with a cancer patient, volunteers learned to observe the effectiveness of verbal and non-verbal communication, and to recognise the important

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VOLUNTEER

MAKNA VOLUNTEER LEADERS QUARTERLY MEETING

By Vemanna Appannah, Deputy General Manager MAKNA

The most recent MAKNA Volunteer Leaders Meeting brought together volunteer leaders (brown vest) and next-in-line volunteer leaders (blue vest) from Perlis, Kedah, Perak, Selangor, Johor and Pahang for a quarterly update.

The meeting was attended by 27 volunteer participants and MAKNA staff. In addition to updates, the meeting was an opportunity for next-in-line volunteers to connect with senior volunteers and to learn from counterparts from other states. Volunteers are a fundamental aspect of MAKNA’s growth.

and perspectives shared by volunteers were recorded in summary reports for future action.

The leaders then took their learnings back and shared them with their respective networks of volunteers. Regular meetings such as this, bring volunteers closer to the organisation and increases their ownership of MAKNA’s work.

Volunteer contributions are prized highly at MAKNA and continuous learning equips our volunteers with greater understanding and nurtures the organisation-volunteer relationship.

The recent meeting updated volunteer leaders with the latest developments in the organisation and was a base for important knowledge exchange between volunteer leaders and the MAKNA Volunteer Management Unit.

Learnings were shared, relationships were strengthened, while observations, suggestions

MAKNA aims to provide volunteers with a rewarding experience by providing opportunities to make a significant difference in the lives of cancer patients who are most in need across Malaysia.

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LIFE GOES ON

NEVER GIVE UP, NEVER GIVE IN

By Monica Dius, Assistant Programme Manager, Volunteer Unit

Chemo was not painful. I was not afraid because I wanted to get better. My mother scolding me hurt more.

Audry Lian Ak Robert is a joyful kid who is sociable and easy to get along with. Being the youngest among four siblings makes him the baby of the family. As any other 7-year-old, Audry loves to read and draw, and being the youngest, he is close to his parents, especially his mother Rita. When Audry was first diagnosed with Acute Lymphoblastic Lymphoma, it sent his parents into a tailspin of overwhelming distress.

Acute Lymphoblastic Lymphoma or otherwise known as ALL, is a cancer of the bone marrow and blood which affects the blood cells and immune system. According to Rita, symptoms such as constant coughing and sudden fevers without any obvious causes were some of the early signs of the illness Audry displayed.

Audry’s condition posed a challenge for his family financially as his father earned a meager salary as a driver. In 2014, Audry was admitted to the Sarawak General Hospital for 6 months. His follow-ups were then done once a month at Hospital Bintulu for blood tests and chemotherapy.

Audry has just completed his treatment when the MAKNA team visited him at home in Tatau, Sarawak on 11 February. Rita shared that from his usual cheerful self, Audry would become temperamental after treatment. He would also lose his appetite and his hands would become pale and easily bruised as a result of the chemo.

Since he was diagnosed, Rita has dedicated most if not all her time and effort into caring for Audry, encouraging him, and learning as much as she could about ALL. She would like to thank MAKNA and all kind-hearted donors for the financial aid that the family received, which has greatly lightened their burden especially during the duration of Audry’s treatment.

Hearing these words and seeing how this young boy has had to put up with so much have made me grateful that my kids are blessed with good health. And although it has been a struggle, it’s obvious that the unconditional love and care from his parent, and Audry’s own positive attitude and courage are the best weapons in battling cancer.

MAKNA CONTINUOUS EDUCATION (MCE) SABAH HOMESTAY MAKNA Continuous Education (MCE) is an in-service training programme for MAKNA employees. One of the initiative under the MCA is MAKNA Homestay is a form of experiential training to cultivate and strengthen empathy amongst MAKNA employees for the plight of cancer patients. Employees stay at the homes of patients receiving assistance from MAKNA, some of whom live in the most remote areas in the country.

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COVER STORY Just trying to locate the homes of patients was daunting for many of MAKNA employees. Some had to drive through rivers with no mobile signal, GPS, or road signage as the homes were far from Kota Kinabalu.

This year’s MAKNA Homestay took place in Sabah. Staff were divided into 24 groups of 4 members per group. They were also given tasks to complete upon arrival. These tailored tasks set a series of challenges for MAKNA staff to experience before making their way to their patients’ homes.

MAKNA employees were to spend three days and two nights with a patient and their family.

The patients varied – some were in initial stages of cancer, while some were in more advanced conditions but all of them struggled with waning health as well as poverty. Staying with the patients, MAKNA employees were able to fully experience the challenges of living with hardship and in most cases, without basic amenities such as running water and electricity. The Homestay also gave MAKNA employees the opportunity to help patients carry out their chores and home improvements, and to provide comfort as well as emotional support during their visit.

The tasks exposed staff to difficulties a poor patient might face due to a lack of services (including transportation) at his/her location, financial burden and journeys of long distances.

These are common challenges faced by cancer patients when seeking treatment at hospitals, purchasing medication or accessing facilities provided at selected areas. The tasks were aimed at motivating employees to understand the struggles of patients and to put more heart and effort into their work so as to ensure that all MAKNA patients are given the best.

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COVER STORY

It is also during this time that employees are able to get a closer look at patients’ needs and to recommend to the management if a patient should be given additional assistance. There have been occasions when MAKNA employees had visited just at a time when help was needed most. In one case, a patient needed to pay an outstanding electricity bill after having lived in darkness for several years. MAKNA employees managed to raise funds for the patient and settle the bill, which returned some light to her home. This is just one of many heartwarming initiatives that have arisen during a MAKNA Homestay.

At the end of the training, each group presents their patient’s case to MAKNA management. From these reports, it is possible to gauge the incidence and severity of cancer in the communities we visit. This allows us to identify more ways in which MAKNA can help to reduce cancer prevalence and identify main causes such as lifestyle, environment or family history.

The Homestay in Sabah this year proved to be an invaluable experience for MAKNA employees, both new and experienced. The compulsory training continues to be reviewed positively by staff and patients alike, and will continue to bridge MAKNA’s personal relationship with our cancer patients.

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ALL IN A DAY’S WORK

by Vemanna Appannah, Deputy General Manager, MAKNA

Homestay for most is checking into the comfort of someone’s home in a cosy holiday spot. My work at MAKNA also provides me with a Homestay experience surrounded by natural beauty in the most remote places of Malaysia.

MAKNA Homestay is one of several continuous education programme, that increases staff’s exposure through a live-in experience with cancer patients and their families. This first-hand experience tested the staff adversity quotient, enabling us to turn obstacles into opportunities and face what it takes to live with what we have.

This time around, the team headed to Sabah, the land below the wind. Sabah is vast, measuring about half the size of Peninsular Malaysia, but with mountainous terrain.

Our 104 staff were grouped into 26 teams, four to a team, and posted to 26 locations in the interior of Sabah for a 3D2N homestay.

During my own MyVi road adventure with two of my colleagues, we covered some 400 kilometers or more, commencing our journey at 7.15am and completing it at 7.45pm. The dawn-to-dusk journey made stops at five homes en route, between Kota Kinabalu, Membakut, Kuala Penyu, Membakut (again), Tambunan, Penampang and back to Kota Kinabalu, crossing the Crocker Range twice in a day. The mountain range is steep and winding with sharp turns, where we encountered heavy machinery and lorries travelling at 20km per hour on steep hills.

Rain and fog hovered over our road, making it low on visibility and perilous.

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Yet, the beautiful scenery provided consolation and the properly laid roads with strong retention walls prevented landslides to make for a safe journey. Most importantly, our car did not fail us although towards the end, a rattling sound from one of the wheels and the engine raised some concerned eyebrows. We arrived safe and sound, tired but contented. It took a whole day for us to visit just a few of the homes here but it was worth it.

Moreover, during the 3D2N homestay, MAKNA staff had a taste of the living conditions of cancer patients. Many had the experience of sleeping on the floor, using their backpacks as pillows, falling asleep to the hum and bite of mosquitoes.

COVER STORY Accepting total strangers into their home was in turn, a challenge for the patients. How difficult it must have been to host a stranger they had only got to know over the phone. Yet, fear and anxiety at the onset soon transformed into recognition that someone cared.

The homes at which staff stayed were only alike in their lack of facilities but differed greatly otherwise. Some of the homes did not have electricity or had lost access due to inability to pay their bills. Others were unlucky with access to clean water. Where fortunate to have running water, it was often the case that toilets had to be manually flushed with a pail of water. The sewage often landed at a dumpsite a few meters behind their homes. Having to face cancer on top of the day-to-day challenges of living with limited resources added uninvited, unplanned financial difficulties for these families.

Meals were served often on the floor, plates of white rice with soy sauce and a few green leaves (ulam) collected from around their homes. On a good day, there were fried eggs or the catch of the day from the nearby river, or edible snails by the sea. There were no complaints. Instead, our patients showed contentment with their simple lives despite their hardships.

The MAKNA Homestay experience is compulsory for all MAKNA staff because we recognise that the only way to really know our patients is to walk a day in their shoes. We take it upon ourselves to provide the best possible access to these families and to ease their burden so that they do not have to face cancer alone. Because you support us, we are able to go as far as we have to achieve this and to bring significant change to so many families. Thank you. #MAKNA #maknacancer

Kg Bambangan, Membakut

Tenambak, Kuala Penyu

Kg Binsuluk, Membakut

Kg Magatang, Keningau

Kg Pongunon, Penampang

National Cancer Council (MAKNA) BG 03A & 05, Ground Floor, Megan Ambassy, 225 Jalan Ampang, 50450 Kuala Lumpur.

Tel: +603-2162 9178 Fax: +603-2162 9203 Email: makna@makna.org.my www.makna.org.my

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