On Sunday 12 July I attended the Patient Support Group Meeting held at Sir Gangaram Hospital India in Delhi, with over 100 patients and their families coming from all over NCR. Many of them were attending a Patient Support Group Meeting for the very first time.
Also at the meeting were FOM Trustees and City Chapter Leaders from Delhi (and visiting from Patna and Mumbai) and physicians along-with the Max India team members.
Over 60 BCR ABL tests were done at the meeting venue at no cost to the patients, to ensure compliance to essential monitoring.
Setting the Context:
Dr. Shyam Aggarwal set the context in his welcome address. He explained the journey of CML, from being a fatal disease to a chronic, manageable condition following the discovery of targeted therapy, and now to the exciting possibility of Treatment-Free Remission (TFR) for eligible patients who have achieved sustained deep molecular remission, for 3 continuous years and have been on the tablet for 5 years and more. He also appreciated the access program put in place by The Max Foundation and Novartis and supported by Friends of Max.
Some key DOs and DON’Ts shared by the doctors reinforcing the importance of treatment adherence and regular monitoring:
- Essential to take the prescribed tablet every single day; Nearly 50% of the medicine’s effect is lost within 36 hours
- Consistent adherence to daily medicine is the only way to stay on the left side of the Phase Slide
- (Chronic Phase->Accelerated Phase-> Blast Phase)
- A good BCR ABL result is NOT a matter of luck- it is an outcome of taking 90 tablets in 90 days
- Nearly 30% of patients miss their tablets for about a week each year, usually due to avoidable reasons such as forgetting, side effects or running out of medicines
- Feeling well is NEVER a reason to stop treatment
- Missing 3 tablets in a month significantly affects treatment outcomes
- Always tell your doctor the truth, especially if you are experiencing side effects, as help and solutions are available
Some important information shared regarding TFR was as follows:
· The first step to take to be considered for stopping the medicine is to first start taking the medicine, every day as prescribed
· To be able to be considered for TFR by your physician, you need to have been on medicine for at least 3years with sustained deep molecular response through regular BCR-ABL testing, done every three months
· When you are on TFR, it requires very close BCR ABL monitoring, initially every month and then periodically for continuous 2 years. Hence, having access to monitoring during this phase is very essential
Q&A Medical Session:
As always the Q&A session with the doctors was very informative and engaging. Super special as it was moderated by Dr. Shyam Aggarwal himself with his team including Dr Aditya Sarin, Consultant, Medical Oncology Sir Ganga Ram Hospital, Dr. Naman Bansal, Dr. Meena Verma, and Dr. Arti Mehrotra. The medical panel also included stalwarts like Dr Dinesh Bhurani, Dr Narendra Agarwal Senior Consultant, Head of Hemato-Oncology and BMT Unit, Rajiv Gandhi Cancer Institute & Research Centre.
Interactive Workshop:
Post lunch it was time for the Interactive Workshop- this time it was on the Importance of BCR ABL testing central to successful CML management and achieving long-term treatment goals. The workshop was adeptly conducted by Beena Narayanan Country Head and Ashika Naik , Program Office at The Max Foundation assisted by the FOM City Chapter Leaders.
Conclusion:
The meeting concluded on a positive and hopeful note, reaffirming the power of patient education, peer support and strong partnerships between treating institutions, physicians, NGO and Support Group for the well-being of patients living with cancer. For many first-timers, the meeting provided not only valuable medical knowledge but also the reassurance that they are not alone but a part of a caring community, which gives them an opportunity to share and learn from one another.
Acknowledgement:
A warm Thank you to Dr. Shyam Aggarwal, Dr Dinesh Bhurani Dr Narendra Agarwal, Dr Aditya Sarin, Dr. Naman Bansal, Dr. Meena Verma, and Dr. Arti Mehrotra and to Delhi FOM City Chapter Leaders (& Trustee Anil Nagpal, Shyam Kankani), Rita Nagpal, Shashi Kankani, Manhar Kochar, Rakesh Sharma, Aditya Sharma, Monica & Sanjay Kapoor, Rajdeep and Supreet, Aashima and Nitesh (from Patna) and Anju (from Mumbai), The Max Foundation team members and the Core Diagnostics Pvt. Ltd. team for their support.
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