A CML and GIST Patient Support Group Meeting was held on 9 May 2026 in Mysore. Over 80 patients and their caregivers attended the meeting.
At the meeting along with other FOM City Chapter Leaders was Ramanathan Seshadri, City Chapter Leader from Nagpur, who travelled specially to be there for this meeting.
Shesh, as he is fondly called at FOM, has been an integral part of FOM since the last 20 years and more. Following the meeting, we asked him to share his thoughts:
- How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?
The important aspects of CML and GIST are significantly addressed in such gatherings that are organised from time to time by Friends of Max and The Max Foundation. They are seen to have a resounding impact amongst patients and they tend to imbibe a clear understanding of the best practices. The hallmark of such a Patient Support Group Meeting of FOM is that it provides a forum for dissemination of useful information on different aspects of CML and GIST. Minute information which are quite relevant are not always imbibed during a consultation with a doctor are discussed threadbare.
2. Now it has been more than 20 years since we have been doing Patient Support Group Meetings, how do you think the meetings have evolved, what are the new changes in the discussions and workshops that you are seeing?
The role and activities of Max Foundation and Friends of Max were presented by Ms Viji Venkatesh and Ms Ashika Naik. The documentation aspects and modus operandi for obtaining the drug were covered. The Max Foundation had organised a BCR ABL quantitative testing with Core Diagnostics and samples of those patients who were interested, were collected. The tie up with FOM and the preferred pricing offered to FOM as a result of this partnership was also mentioned. All were also informed of FOM’s unique awareness and fundraising initiative Chai for Cancer. Some of the other patient centric activities of FOM like facilitating education of pediatric cancer patients or dependents of cancer patients through Project Shiksha was also mentioned. Today these meetings are well structured and enable a significant amount of patient participation. Patients come forward, narrate their unique experiences which entails an easy form of knowledge sharing.
3. What would you like to see in future meetings?
Future meetings can be more theme based touching specific grey areas or recommended best practices and increased patient interaction. An interface through social media could also be worked out to enable exchanges among patients with similar issues.
4. In your experience with Support Group Meetings, can you share a specific instance where you witnessed a notable impact or positive outcome for a patient?
During initial phases of my tryst with CML, I used to have an incorrect perception on the compliance issues. I used to often give a miss to taking my medicines. At a later stage too, I had misconceptions on discontinuation of the drug upon getting favourable results. I used my discretion and carried out some alterations at will. It was an eye opener to me, when in one of the Patient Group Meetings in Kolkata, doctors explained the protocols in vogue on above matters and gave some cases where recurrence of the condition had occurred while deviating from the protocol. There are many such takeaways for a patient in such gatherings.
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