Updated Disease Booklets Available!

 

Getting the right information is always crucial for Cancer patients. 

We have disease materials for Chronic Myeloid Leukemia (CML) and Gastrointestinal Stromal Tumor (GIST) below.

Click here to view E-booklet of  CML Disease:

Chronic Myeloid Leukemia (CML) - Bahasa Malaysia

Chronic Myeloid Leukemia (CML) - English

Chronic Myeloid Leukemia (CML) - 中文

MyPCR Soalan-soalan Lazim - Bahasa Malaysia

MyPCR FAQ - English

MyPCR 常见问题解答 - 中文

Click here to view E-booklet of GIST Disease:

Gastrointestinal Stromal Tumor (GIST) - Bahasa Malaysia

Gastrointestinal Stromal Tumor (GIST) - English

Gastrointestinal Stromal Tumor (GIST) - 中文

Personal Note from Prescilla

​Happy world CML day everyone!

#TodayTogether

We would like to share a writing from Prescilla. We noticed her during one of our "Let Sama-Sama" programs. At that time, we invited her to be the facilitator of the program and impressed how well and articulate she's during the session - from there as well, she shares her experience to be diagnosed with CML when she was only 11, back then in 2008. In conjunction with CML day, we reached her - to learn more on her experienced, what motivates her to stay positive along her CML journey. So here is Prescilla's experience and wise word for all of us. 

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I was diagnosed with Chronic Myeloid Leukemia in 2002, when I was 11. However, back then I was so carefree even after the diagnosis because I was too young to understand. However, I can vividly remember the faces of my parents when they received the news. It was a very hard time for them and it took more than a year for them to accept the fact and to function back in their routines.

As I grew up older, up until I was 20, the fear in facing the future started to exist. Multiple times I got my hands sweating while waiting for my blood test result or before seeing my doctor. There was a time when I got overwhelmed and broke down in tears too when the thought of uncertainties rushed in. As time passes by and witnessing myself progressing from one phase of life into another, I pray to God so that I have eyes that see that there is so much life beyond my diagnosis; to worry less and focus on things that I can control – which is taking my medicine on time and going to my regular check-up. I make sure I can participate in life such as spending time with nature, reading good books especially on topics about self-help, psychology and sociology – friends, you may suggest a book about these topics too.

Fast forward from that moment to present time, I might not be able to write down every single thing here but I will summarize my whole experience in three words – all better now. The diagnosis might be bad but life is good and truly a gift. It is a gift that shouldn't be wasted by worrying about tomorrow or the things that are beyond our control. Instead, let's look within us, count the blessings and focus on the things that we can control. I am grateful now because of this journey with CML, I appreciate life more and it is a must to use the gifted time wisely.

A message to my fellow fighters, life goes on no matter what. Let's participate in a purposeful life and always take good care of ourselves by complying with our doctors advises. Learn to grow through it all and always look on the bright side of life. Don't forget to be kind to our doctors and nurses too.

A thank you message to my doctors, nurses, and any healthcare providers especially at Sarawak General Hospital. I can't thank them enough for their kindness, care and time contributed in helping us as their patients to get better. I hope they can always make time to unwind and taking good care of themselves.

Last but not least, to my Max Family, I am really grateful to know the family. Thank you for your presence, supports and encouragements. It makes this journey much more bearable with doses of hope that you infuse within us. I hope the family to remain strong and remain in a good health.

To end this, I shall say that we might couldn't find the best answer to our big WHY it happens to us but we shouldn't let any circumstances to stop us in pursuing a meaningful life. As life must go on, let's keep pressing forward and live kindly day by day.

With love – Prescilla  

Thank you YB Dr. Lee Boon Chye from the CML and GIST patient community in Malaysia

“I had the opportunity to meet with YB Dr. Lee Boon Chye, the Deputy Minister of Health Malaysia at the third-week of December 2018, to highlight and discuss about patients concerns and possible solutions to resume stable medication access, for cancer patients, including myself”, said Gan Li Li.

Li Li is a patient advocate representing Chronic Myeloid Leukemia (CML) and Gastrointestinal Stromal Tumor (GIST) community in Malaysia; she is also a CML survivor, living well and getting her treatment through Malaysian Patient Assistance Program (MYPAP).

MYPAP is made possible by public-private partnership, between Ministry of Health Malaysia and pharmaceutical company, managed by a global health organization, in providing optimal standard of treatment (TKIs, tyrosine kinase inhibitors) for CML and GIST patients. Currently, there are approximately 2, 000 CML and GIST patients benefitting from MYPAP nation-wide.

Back in October 2018, patient advocates from Max Family and The Max Foundation were notified about instable of medication supplies on the ground, by CML patients. Medication were dispensed for shorter timeframe – from one month supplies, to two-weeks, down to one week, and in fact, there were patients who were only given two-days medication. This situation has created much worries, concerns and uncertainties among patients and families.

“Access to treatment is access to life” – holding on to this motto as a patient support group, we reached out to YB Dr. Lee, as we believe he would do his best to support the patients.

We had an opportunity to have a face-to-face meeting with YB Dr. Lee. Key aspects covered in the discussion including patient concerns, on-the-ground challenges from low level of medication, compliance and clinical outcomes. We also covered conversation around roles of stakeholders, collaboration and partnership in cancer care strengthening as a whole. YB Dr. Lee was very attentive, courteous and in fact, a very solution-focused leader.

It is a noteworthy point to mention that two weeks after the meeting, medication supplies challenges for existing patients has been resolved. Thus, we would like to express our heartfelt gratitude to YB Dr. Lee for his prompt action taken.

“For me, circumstances like these are a great learning curve as it forces me to brush up on my advocacy skills and knowledge, being aware of the greater landscape affecting all the stakeholders i.e. governments, pharmaceutical companies, communities and for myself - self confidence and awareness. Daunting but fulfilling, let’s start to win the small battles together.” - Gan Li Li

Let's Sama-Sama CML Johor 2018

On 10 November 2018, we had our annual Let’s Sama-Sama Chronic Myeloid Leukemia (CML) educational workshop at TLJ Hematology Ward, Hospital Sultanah Aminah. Around 100 CML patients and their caregivers turned up at the workshop, where they were divided into two groups based on language preference, with Dr Toh See Guan as the speaker for Mandarin language group and Dr Lim Soo Min as the speaker for Malay language group. The workshop addressed patients’ concerns about diet, basic knowledge of CML, management of side effects of the medicine and monitoring of the disease. 

The workshop was made possible by volunteers who had given their time and effort in planning and making it happened. This year, we presented the award of Best Max Crew of Johor to Ms. Nur Hidayah Johar who is not a patient nor a patient caregiver herself but has dedicated herself to helping the CML patient community through educational workshop and other Max Family initiatives for the past two years.          

World CML Day Celebration

In view of World Chronic Myeloid Leukemia (CML) Day which falls on 22/9, for the past two weeks, CML patients and volunteers from Max Family Society Malaysia had taken the opportunity to celebrate the doctors who have been doing a great job in providing medical and emotional assistance in helping the CML patients to manage their condition. The doctors were treated to some good food, and gifts were distributed to them as a token of appreciation.   

During the celebration, patients and volunteers also brought up the topic of disease monitoring for discussion with the doctors. In CML, PCR test is one of the most important test that detect, and sometimes to quantify, Bcr-Abl (indicator of CML) in bone marrow cells of patients with CML It's a fruitful discussion as patients get to hear from the doctors the importance of the test, how frequent the test should be carried out and what can be done to raise awareness about the importance of PCR monitoring test.