I feel glad and honoured to be able to share a few thoughts about Friends of Max’s Virtual Support Group Meeting for Rajasthan. This meet was long overdue and very much required where the participants displayed unmatched enthusiasm to learn and ask questions. One of the highlights was that the exchange took place in Hindi which makes this even more accessible.
Dr Hemant Malhotra and Dr Lalit Mohan Sharma graciously and patiently explained the different aspects of CML, discussed the discipline required and cleared the misunderstandings. For e.g. The aggressive nature of the disease or the necessity of a bone marrow transplant. They also covered questions related to the often overlooked but very critical social impact of the disease such as getting married, starting a family, etc. One key point to note was that in pregnant females, approximately 10%-15% foetuses were born with some defect whereas no such impact has been reported for males.
The younger generation were very much concerned about passing on the disease genetically to the kids and the doctors explained that this was not a hereditary or a communicable disease. A normal, healthy, balanced diet was suggested and recommended along with a healthy lifestyle. They also emphasized on the importance of the routine and regularity in taking medication, regular check-ups and follow-ups with the doctor and how BCR-ABL tests would help in tracking and controlling the disease. Participants were also informed about the 2nd and 3rd generation of medicines manufactured in India.
A very important question addressed was when to stop the medication and was discussed in detail. It was suggested that medication could be stopped after 8 years of CML in remission and 3 years of 0 BCR-ABL but only under strict supervision of the doctor. This would require monthly BCR-ABL check-up for the first 6 months and then gradually increasing the testing timeline. It is important to trust the doctor and not be your own doctor because there are risks of relapse or reaching advanced stages.
There was a tremendous amount of participation and the question answer session was extremely fruitful. This was an incredible experience to meet everyone, the doctors and Viji ji. Her contagious smile and enthusiastic, energetic disposition just spreads positivity all around.
I would like to thank all organizers and The Max Foundation team for the hard work that went behind this meet and made it a big success.
Shaila Bhandari
