Neoplasia 1/23

MAKNA | MAJLIS KANSER NASIONAL | NATIONAL CANCER COUNCIL

Penasihat / Advisors

Dato’ Mohd Farid Ariffin

Farahida Mohd Farid

Editorial

Shahril Shafullah

Sophia Ivy Jo

Penyumbang / Contributors

Lim Yee Ching

Najmi Kamal

Shahril Shafullah

Sophia Ivy Jo

Wan Ainin Sofiya

Jurufoto / Photographer

Yuni Fardzuan

Bakri Adnan

Demitri Rohaizad

Diterbitkan oleh / Published by National Cancer Council (MAKNA)

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Editorial Contents

President’s Desk

DATO’ MOHD FARID ARIFFIN

FOUNDER & PRESIDENT OF MAKNA

REMINISCE THE JOURNEY AND CONTINUE THE FIGHT

Dear friends,

The 4th of February is the designated day for the world to recognise the reality of cancer.

We celebrate the heroes and we remember those who passed on.

This year, the feeling is rather bittersweet as we mourn the loss of Mr. Jacob Mathews and Mr. Hari, who passed away last year and earlier this year, respectively. However, we celebrate their legacy of always giving hope to others. They believed that cancer gave them a new lease of life.

In truth, here at MAKNA, every day is cancer day.

There has not been a day in which we do not receive emails from patients applying for assistance or phone calls asking for guidance. From the get-go, it has always been all hands on deck. The amazing people at MAKNA are always ready to serve with passion and love. I also approve cases on a daily basis for

patients in need of our assistance. Come rain or shine, MAKNA continues to fight cancer and help those who are burdened by this disease.

Then there is you, our muchappreciated donor. Through your generosity, many lives have been and will be saved. Words cannot express my gratitude for your kindness and loyalty. You might not realise it, but your donations have brought us one step closer towards building a healthier future, Insha’Allah.

It has been 28 years since I started MAKNA. Due to my age and health, I am unable to serve MAKNA as much as I used to. So, I recently wrote a book in which I poured all my knowledge and aspiration into MAKNA. As I pass the baton to the new generation, I hope the book can serve as a compass as they continue the journey for the sake of our cancer patients.

We have come so far, and I hope that you will continue to stay with us because there is still much to do.

With much gratitude.

A YOUNG CANCER SURVIVOR'S JOURNEY OF PERSEVERANCE AND TRIUMPH

By Wan Ainin Sofiya

Amira Abdul Talib is one of the recipients of the MAKNA Young Cancer Survivor Scholarship programme. Last year, she graduated with flying colours and received the Anugerah Emas Universiti from her alma mater, Universiti Malaysia Pahang (UMP).

Amira’s cancer journey is a life lesson for others. She was diagnosed with Rhabdomyosarcoma, a rare cancer that forms in the soft tissues at the age of 22. When she noticed her vaginal discharge was abnormal, she did what everyone would do; self-diagnose through Google. However, none of the results could pinpoint the problem. After endless clicking and typing that led to nowhere, she then decided to consult a doctor.

The doctor took a sample of her discharge and Amira was diagnosed

with Rhabdomyosarcoma – a type of soft tissue cancer. The doctor suggested her to delay her studies and start treatment as soon as possible. However, since she had never heard of this rare cancer, she repudiated her diagnosis. She convinced herself that her illness was not cancer and decided to continue her studies instead.

During that time, she opted for traditional treatment instead, but nothing changed. Despite feeling severely weak, she endured the pain and attended classes as usual. Over a year and a half later her condition worsened.

Due to prolonged inadequacy of medical attention, her haemoglobin level dropped dangerously low in university until at one point, she almost fainted. It was only then she decided to seek medical help at a hospital in her hometown. However, she did not tell the doctors that she was previously diagnosed with cancer, hoping for a different prognosis. However, it was the complete opposite. To her dismay, the doctors informed her that the cancer has already progressed to Stage 2.

After the news, she finally embraced the fact that she has cancer. The university advised her to take a break for her treatment, but she was adamant to finish her current semester.

I really wanted to complete my studies first, and I just wanted someone to say it’s okay to not proceed with chemotherapy yet, but everyone was against the idea.

She went for chemotherapy for a year, had an operation to remove the tumour and continued with several more cycles of chemotherapy.

Fighting cancer requires a tremendous amount of effort, time and money. Amira realised that in order to win the battle, she needed to get some help. As she was doing very well with her studies, she tried to apply for scholarships which can help to ease her burden. Unfortunately, due to her illness, most of her applications were not accepted. By chance, she came across a blog that mentioned a special scholarship for cancer

patients - MAKNA Young Cancer Survivor Scholarship –and the rest was history.

She regretted not getting medical care sooner and strongly urges those who are diagnosed with cancer to follow the treatment plan that their doctors have come up with.

Cancer is not the end of the road, it’s the start for us to live our lives stronger.

MEMORIALISING

A MEANINGFUL LEGACY

By Shahril Shafullah

That was the recurring exchange when Dato’ Farid Ariffin first expressed his intention of running a charitable organisation professionally to his acquaintances. According to him, starting MAKNA was one of the many crazy endeavours that he embarked on with deep passion and commitment. With blood, sweat and tears, he nurtured MAKNA into becoming the successful organisation that we all know today.

28 years have passed and MAKNA is still standing strong, changing the lives of many cancer-affected individuals in Malaysia. With hopes that MAKNA will continue to grow in his absence, Dato’ Farid took the initiative to document his values, beliefs and personal memoirs in a book. He wishes that the book can be a compass for the future generation, mapping out MAKNA's direction moving forward in the effort towards solidifying its sustainability.

“HANG GILA KA FARID?”

“AKU BUKAN GILA, AKU GILA-GILA!”

With the help of Jovian Lee as a writer/ conduit, together with the support of Dato’ Farid’s family, friends and his beloved MAKNA colleagues, his messages were immortalised in the pages of the long-anticipated book.

A launching ceremony was held to commemorate the book which was attended by the whole MAKNA family and key individuals who played important roles in shaping MAKNA. The launch was officiated by Emeritus Professor Dr Cheong Soon Keng, Vice President of MAKNA and Puan Farahida Mohd Farid, General Manager of MAKNA.

Titled Fading to Clarity, readers will have the opportunity to follow Dato’ Farid as he reminisces his journey from being a humble countryman to becoming a dedicated man serving his country as well as learning the values he honed over the years.

With Dato’ Farid, MAKNA has come a long way and achieved many things which many don’t believe are achievable. As he always says, crazy people do crazy things and achieve crazy results!

said Emeritus Professor Dr Cheong Soon Keng in his speech.

A live reading session by Puan Farahida Mohd Farid was also conducted during the ceremony.

Why does one write?

Why does one keep memories in a book?

So that one doesn’t forget. So that one leaves the traces of one’s existence for when one is no longer around,

read Puan Farahida Mohd Farid.

MAKNA wishes to express its sincere appreciation to everyone who has contributed towards making Fading to Clarity a huge success.

CINTA PANDANG PERTAMA PADA MAKNA

By Najmi Kamal

Tempoh 20 tahun berkhidmat

dalam bidang kejururawatan

merupakan pencapaian

yang amat membanggakan

dalam hidup seorang wanita

yang bernama Puan Ainun

Zubaidah Bt Mohamed.

Beliau kini sedang bertugas sebagai

seorang Pengurus Jururawat di Majlis

Kanser Nasional (MAKNA) dengan

kelulusan Sarjana Muda dalam bidang

Kejururawatan. Beliau juga telah mengikuti

Kursus Lanjutan dalam bidang Onkologi.

Penglibatan awal beliau bersama MAKNA

bermula apabila beliau ditugaskan

sebagai Jururawat terlatih U29 di wad

onkologi Pusat Kanser HCTM - MAKNA.

Beliau mula mengenali MAKNA setelah

selesai pengajian diploma dalam bidang

kejururawatan. Benar kata pepatah, tak

kenal maka tak cinta. Dari situ, lahirnya

bibit-bibit cinta beliau terhadap MAKNA

setelah beliau memahami peranan

serta objektif penubuhan MAKNA dalam

HEROES

membantu pesakit kanser yang kurang berkemampuan, tanpa mengira warna kulit, agama atau ideologi politik.

Konsep kepimpinan melalui teladan yang diterapkan Presiden dan juga Pengasas MAKNA, Dato’ Mohd Farid Bin Ariffin, dalam mengemudi sebuah organisasi, telah mengukuhkan lagi semangat beliau untuk terus berkhidmat serta meneruskan perjuangan bagi membantu pesakit dalam perjuangan mereka melawan kanser. Menurut beliau, antara keistimewaan Pusat Kanser HCTMMAKNA berbanding wad-wad kanser yang lain adalah kakitangan yang dilatih dengan cekap dan penuh integriti di samping sifat berkasih sayang antara satu sama lain.

Bagi Puan Ainun, detik

terindah yang akan terus

bersemadi dalam ingatannya

bersama MAKNA adalah ketika

beliau menjadi sebahagian

daripada kumpulan

jururawat yang pertama bagi

Pemeriksaan Mammogram

Bergerak dan juga Rumah

Perantaraan MAKNA.

Lebih membanggakan, beliau adalah di antara pelopor yang sehingga kini berjaya membantu ribuan masyarakat di kawasan bandar dan juga luar bandar, termasuk pesakit dan keluarga yang menghadapi kekangan dari segi kewangan.

Menurut beliau lagi, tugas beliau juga membolehkan beliau berjumpa rakanrakan baharu di kalangan pesakit yang pernah beliau rawati. Hubungan akrab yang terjalin

berterusan sehingga kini, dimana mereka

sering bersua

muka setiap kali

pesakit tersebut

bertandang untuk menghadiri janji temu susulan.

Hubungan seperti ini merupakan salah satu kepuasan peribadi beliau dalam bergelar seorang jururawat.

Bersempena dengan ulang tahun

MAKNA ke-30 yang bakal disambut pada tahun hadapan, beliau menitipkan harapan agar orang ramai dapat terus menyokong MAKNA tanpa henti, agar

MAKNA mampu meneruskan usaha dalam memberikan nafas baru kepada pesakit kanser yang memerlukan tanpa tembok pemisah.

Hidup ini penuh

dengan orang yang

baik-baik, tetapi

jika anda tidak

menemuinya, maka

jadilah salah seorang

daripadanya. Oleh itu, marilah bersama-sama

kita dekati, rasai dan

fahami kegembiraan

pesakit dan waris

apabila mereka

mendapat peluang

menewaskan kanser.

Beliau turut merakamkan ucapan

jutaan terima kasih di atas sokongan tidak ternilai yang diberikan oleh para penderma MAKNA.

CREATING A MEANINGFUL DIFFERENCE ONE HAIR STRAND AT A TIME.

By Shahril Shafullah

In conjunction with World Cancer Day, Pertubuhan Anak Watan Muhibbah led by Dr Devi Sharmini collaborated with MAKNA and Locks of Hope in organising a hair donation campaign .

The donated hair shall be used as wigs to be given to cancer patients for free. The event was held at Batu Caves during the Thaipusam celebration on 4 February 2023.

“It all started from a simple conversation in a hair salon on 27 December 2022.

I was with my hair stylist when she commented that I could donate my hair. I never knew anything about hair donation. I did a little read-up on what donated hair is used for and came across Locks of Hope - a NonGovernmental Organisation (NGO) that does hair collection from donors. I immediately thought of Thaipusam, as that is a big festival where many would tonsure their head. I then found out that MAKNA is also one of the main NGOs that provides assistance and support to cancer patients.”

Then

a simple thought came to me, "Why not execute an event since the festival is around the corner? You never know until you try, explained Dr Devi.

With the support of her organisation, the event was set in motion.

On 29 December 2023, she made the move of calling the Management Office of Batu Caves, Locks of Hope and MAKNA.

Things started taking shape rather easily right after. From obtaining the temple management’s permission and getting the right group of volunteers and sponsors, to organising the event, everything fell into place rather beautifully. For Dr Devi, it felt like the event was meant to take place. 20 volunteers which included organisers and event coordinators took part in the campaign.

There were many memorable moments for me throughout the event. Children who are usually reluctant to cut their hair voluntarily came to us to donate their hair. I saw a girl forcing her mother to go to the booth just so that she could join our effort. Honestly, I had tears of joy witnessing them having noble intentions at a such tender age.

Apart from the hair donation drive, the event also conducted fundraising for MAKNA as well as cancer awareness activities. A total of 487 hair donation was collected on that day.

According to Dr Devi, she is very grateful that the event turned out to be a huge success and hopes that they can continue the effort next year.

We are still getting calls coming in from people who are keen to donate their hair!

- Dr Devi

WORLD CANCER DAY 2023 WITH A PICNIC

By Sophia Ivy Jo

Every year on 4 February, communities worldwide gather collectively to celebrate World Cancer Day, in an effort of reducing the global impact of cancer and creating a cancer-free world.

To commemorate the annual celebration of World Cancer Day, we at MAKNA once again supported the initiative through online and offline campaigns.

The three-year campaign runs on the theme of

“Close the Care Gap” (20222024 theme) to understand and recognise inequities in cancer care around the globe, creating opportunities to build global awareness and ultimately, making a greater impact.

Indeed, the theme resonated deeply with MAKNA’s purpose of providing comprehensive, multifaceted services, for cancer patients regardless of background, race, creed, colour and station.

This year, we played our part in uniting the voices and taking action. Part of the effort was to rally the communities around the city to gather at Perdana Botanical Garden,

Kuala Lumpur for a morning picnic, aiming to raise exposure, engagement, and impact. Through the event, we were able to engage directly not only with like-minded people but also with the public. Simultaneously, the event held various activities such as a cancer awareness exhibition, a sharing session: BreastcancerinMalesandWomen, games and activities, including a showcase of MAKNA’s services.

2023 marks the 29th anniversary of MAKNA in helping cancer patients. Since 1994, MAKNA has touched the lives of over 72,000 underprivileged cancer patients in their journey against cancer as well as raising awareness amongst the public regarding the early detection of cancer.

World Cancer Day (WCD) takes place every year on 4 February and is the uniting global initiative to raise the profile of cancer in a positive and inspiring way. Spearheaded by the Union for International Cancer Control (UICC), the day aims to save millions of lives each year by raising awareness and improving education about the disease while calling for action from governments and individuals across the world.

Our main purpose for this event is to get closer to the communities and create a safe space to talk about cancer. Not many are willing to open up about the disease and the struggle, be it the patient itself, caretaker and those involved in the journey, says Farahida Mohd Farid, the General Manager of MAKNA.

APPRECIATION DAY 2023: CELEBRATING OUR SOLDIERS OF SOLACE

By Sophia Ivy Jo

On 17 December 2022, we celebrated International Volunteer Day to honour our volunteers for their hard work and dedication in serving the needs of poor cancer patients in the country.

After two years of battling the pandemic and being struck by the Movement Control Order (MCO), the annual Volunteers

Appreciation ceremony was back physically, gathering at least 200 volunteers from east to west Malaysia, commencing at Taman Tasik Titiwangsa, Kuala Lumpur.

Being the first defence on the ground providing comfort and relief, in recognition of their bravery especially in combatting the times of pandemic,

we regard our volunteers as ‘Soldiers of Solace’, hence the theme, as it resonates with the celebration’s official theme of “Solidarity Through Volunteering”.

“The last two years were quite a challenge for all of us especially in having to endure the health crisis. The volunteers moved from one location to another to deliver required assistance and necessities to those who were affected by the pandemic and flash floods. Their efforts embody the spirit of what it means to be the change we wish to see in the world,” she added.

“We are very fortunate to have such incredible volunteers coming from east to west Malaysia. They have contributed a lot of time, effort and energy and have mastered the spirit of volunteerism to achieve a common goal at MAKNA,” said Monica Dius, Programme Manager at MAKNA Volunteer Department.

In total, 22 volunteers received appreciation awards in various categories, with one volunteer awarded the highest recognition – Volunteer Leadership Award, Dr. Timothy Cheng, from Kota Kinabalu, Sabah.

There’s a saying that goes ‘it takes a village to raise a child’. The same way goes for building a great foundation in creating a team here at MAKNA. Our volunteers act as a bridge that connects MAKNA and families affected by cancer, helping us to cast a wider net and extend support to a larger group of cancer patients as they undergo treatment, said Farahida Mohd Farid, General Manager of MAKNA.

Dr. Timothy’s recent star contribution, Cycle for Cancer – a collaboration between the Malaysian Medical Association (MMA) and MAKNA volunteers and cancer survivors, cycling a distance of 1,100km from Sandakan, Sabah to Sibu, Sarawak in a span of 10 days, aimed to heighten cancer awareness. The journey of 10 cyclists, including two cancer survivors, successfully raised RM211,835.

The Volunteer Leadership Award was given upon observing the volunteers’ strong leadership skills, commitment and in setting great examples in

planning, organising, and executing MAKNA’s mission with very minimum supervision, and the ability to amplify the volunteering network, representing MAKNA independently.

Other categories such as the Special Recognition Award was given to nine volunteers, in which seven volunteers received the Potential Leaders Award and five volunteers received the Inspiring Heroes Award.

As of today, we have over 400 active volunteers

across the states, given tasks under the patients’ assistance programmes such as home visits and involved in campaigns and other onground activities.

According to the United Nations (UN), the act of volunteering is where compassion meets solidarity, in which both share the same root values – supporting each other from a position of trust, humility, respect, and equality.

NEW WEAPON IN FIGHTING AGAINST SOLID CANCERS –CAR MACROPHAGE

By Lim Yee Ching, MAKNA Research Department/MK FMHS, UTAR

Conventional cancer treatment including chemotherapy, hormonal therapy, surgery, and radiation improved the overall survival of cancer patients in the last century. However, conventional therapy lacks specificity and is associated with harmful side effects and is only effective on certain cancer types (Debela et al., 2021).

Most metastatic cancers, such as lymphoma or leukaemia are manageable but considered incurable with conventional therapy.

Metastatic cancer is referring to the type of cancer that can spread from its origin to other parts of the body (Seyfried and Huysentruyt, 2013).

Modern cancer therapies such as targeted drug therapy, stem cell therapy and immunotherapy, have

Figure 1: Function of Macrophages.

revolutionised to become more targeted with less toxicity.

CAR T therapy is a type of immunotherapy involving the collection of a patient’s T immune cells, genetically engineered with a Chimeric Antigen Receptor (CAR) to target and attack the cancer cells in the body.

In 2017, the first FDA-approved CAR T therapy to treat Large B cell lymphoma marked a new milestone of immunotherapy in treating disseminated cancer which was considered incurable in the past. Despite the promising outcome in blood cancers, the use of CAR T therapies in solid tumours is still slow in progress due to several limitations including limited cell source, lack of tumour-specific antigens, inefficient in penetrating tumour sites, and high risk of therapy-associated toxicity (Pan et al., 2022).

Besides T cells, other immune cells can be candidates for immunotherapy. Macrophages are a type of immune cells/white blood cells that help in tissue repair and tumour clearance. In the human body, macrophages work as phagocytes or “big eaters” to kill cancer cells by engulfing them. In addition, macrophages can secrete signalling proteins known as cytokines to initiate inflammatory reactions and control the immune response (Lyadova and Vasiliev, 2022).

To overcome the limitations of CAR T therapies on solid tumours, trailblazing discovery on CAR-Macrophage has come into focus. The major advantages of CAR-Macrophage (CAR-M) are that they can penetrate the tumour, attack, and engulf the cancer cells more efficiently. Importantly, CAR-M has a phenotype plasticity which can respond quickly in the complex tumour microenvironment by interchanging between M1 or M2 phenotype that plays a different function in eliminating cancer cells.

The first-in-human clinical trial to

Figure 2: Process of the CAR-Macrophages Generation.

The The first-in-human clinical trial to examine the safety, tolerability and feasibility of CAR-Macrophage in treating metastatic HER2-positive solid tumours had been conducted in December 2020, (ClinicalTrials.gov Identifier: NCT04660929).

The ongoing trial’s preliminary results showed CAR-M has the ability to alter the solid tumour environment, which means it has great potential to be the new cancer treatment. However, the low yield of macrophages from the blood samples is the first challenge to be overcome for the therapy application (Su et al., 2022).

The ground-breaking discovery of the reprogramming technique developed by Professor Shinya Yamanaka, which can revert the mature specialised cells to the stem cells state called induced pluripotent stem cells (iPSC), has offered the solution (Takahashi et al., 2007). Stem cells can replicate indefinitely and form all cell types in the body. Therefore, the primary monocytes or macrophages collected from the donor’s blood can be reprogrammed into iPSC, expand in unlimited quantities then convert into the specialised cell types that are required for therapy.

Our group, led by Professor Emeritus Cheong Soon Keng, generated iPSC from human somatic cells in 2012 when Professor Shinya Yamanaka was conferred the Nobel Prize. More recently, our research focuses on the derivation of targeted cells from iPSC for clinical applications.

Leukaemia is a blood or bone marrow cancer, and haematopoietic stem cell transplantation (HSCT) is used to cure blood cancers.

In 2019, our group generated haematopoietic stem cells (HSCs) from the in-house iPSC, offering an alternative source of HSCs for stem cell transplantation.

Figure 3: Image of Induced Pluripotent Stem Cells (iPSCs) in culture.

Additionally, our group successfully generated functioning macrophages from the in-house reprogrammed iPSC to provide an infinite supply of immune cells for the applications such as CAR-M treatment or transplantation in treatments of blood cancers or solid tumours. We aim to produce different types of targeted cells such as mesenchymal stem cells from the inhouse iPSC for future application and possible clinical translation.

Acknowledgement: This research is funded by the National Cancer Council (MAKNA) of Malaysia.

References

1. Debela, D.T. et al., 2021. New approaches and procedures for cancer treatment: Current perspectives. SAGE Open Medicine

2. Pan, K. et al., 2022. CAR race to cancer immunotherapy: from CAR T, CAR NK to CAR macrophage therapy. Journal of Experimental and Clinical Cancer Research, 41(1), pp.1–21. Available at: https://doi.org/10.1186/ s13046-022-02327-z.

3. Seyfried, T.N. and Huysentruyt, L.C., 2013. On the origin of cancer metastasis. Critical Reviews in Oncogenesis.

4. Su, S. et al., 2022. Induced CARMacrophages as a Novel Therapeutic Cell Type for Cancer Immune Cell Therapies. Cells, 11(10), pp.1–12. Available at: https://pubmed.ncbi.nlm. nih.gov/35626689/.

5. Takahashi, K. et al., 2007. Induction of Pluripotent Stem Cells from Adult Human Fibroblasts by Defined Factors. Cell

Figure 5: Image of Macrophages derived from in-house iPSC in culture.

Figure 4: Image of HSCs derived from in-house iPSC in culture.

Every ringgit raised from this section will literally transform lives. This is where donations “will never go out of fashion.”