A Participant’s Perception of the Patient Support Group Meeting by Latha Sunderkrishnan

A CML and GIST Patient Support Group Meeting was organized by The Max Foundation for Friends of Max, on Saturday, 8 June, 2024, at Tata Memorial Hospital in Mumbai. Latha Sunderkrishnan, FOM Mumbai City Chapter Leader, was interviewed and asked to share her views:

  1. How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?

The FOM community gatherings are very important. They provide an opportunity to connect with other patients and hear their stories about managing the disease. Patients receive up-to-date and relevant information from doctors on medications, treatments and the important dos and don’ts. This collective knowledge boosts the overall courage among patients. They become better informed about the current developments, learn how to handle side effects, and gain insights into how others are coping with treatment. Thus, after the meeting the patients and their caregivers become more prepared mentally and motivated, and as a result any feelings of depression that they may have had, tend to disappear. 

  1. Now it has been 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 meetings are now very well organised and are held in different cities across India. There has been a noticeable increase in the number of patients attending, along with their caregivers and families. For the overall wellbeing and knowledge of patients, a variety of workshops have been added. Art therapy is one such workshop where we see a lot of interaction amongst patients informally even though it is not related to CML. The meetings also provide a sense of community and belonging regardless of individual backgrounds.

Panel discussions with physicians cover a wide range of topics including management of treatment side effects, the latest updates from the field of CML medical research, to raise awareness. Additionally, the inspiring stories and books provided to patients offer different perspectives on facing and managing the disease, helping everyone handle the situation more effectively.

I would like to see our future meetings cover detailed presentations on

  • Diet and Exercise
  • Overcoming the common side effects
  • How to be a caregiver
  • How to handle emergency situations, if any
  • More details on the need for financial support from patients and their families for the various projects run by FOM for them (Chai for Cancer, Project Shiksha, Providing diagnostic tests at no cost to CML patients)
  • More doctor panel discussions
  • Treatment Free Remission and the SOP regarding the medicine availability in case of relapse of CML
  1. 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?

At the meeting, it became apparent that a particular patient was unsure how to cope with the medication. The meeting addressed the various side effects and reassured the patients that these effects are typically short lived and manageable. The patient learned that the side effects generally occur during the early periods of taking the medication only and tend to reduce over time. Further, it was possible to give up the medicines after a period of five continuous years when the disease is zero by all parameters. As a result, the patient felt much relieved after the meeting, with most of his apprehensions addressed, leading to a more optimistic outlook on the future.