Together we share and learn
The Bengaluru CML and GIST Virtual Support Group meeting was held on 29th August 2020. The event was organised via Zoom app to assist CML patients in this COVID situation, around 100+ guests joined, where all the guests got the meeting invite through WhatsApp group and well-coordinated by Ms. Beena Narayanan and Ms. Ashika, Ms. Roopa, Ms.
Soumya , Mr. Param and all FOM volunteer. The Max Foundation team took great initiative in contacting the survivors & caregivers about the virtual meet happening in for the first time through Zoom App and noted down their questions before the meeting is started.
Ms. Beena introduced Amma who is the force behind everyone in The Max Foundation India. Viji Amma reassured all the patients of continued and complete support by Max on the patient assistant programme now and in the future also. The event then started with a welcome address by Ms. Beena. She welcomed all the doctors, guests and The Max foundation members. Ashika shared an important update on collection of Glivec tablets from a new outlet ie. Apollo Pharmacy, Malleshwaram, Bengaluru. She guided what all are the supporting documents are required to collect the medicines.
After this, the session was open for the Question and Answer session which was promptly answered by all the doctors namely Dr.Hari Menon, Dr.Shekar Patil, Dr.Krishna Prasad and Dr.Sachin Jadhav. Doctors addressed the gathering about the CML disease and the stages of CML. They gave very valuable suggestion on how to handle the side effects like vomiting, diarrhoea, muscle cramps, Vitamin D deficiency etc. A most common question for all the patients was whether the tablet can be stopped, how and when…? For this, our doctors clarified based on patients current situation, how they are responding to the treatment and from how many years their molecular response is zero, based on all these parameters consulting physician will take a call and one positive thing is we can stop the tablets based on the current health condition. Once the treatment is stopped, regular follow-up is required at least for two years.
This session was very helpful for the people who all are diagnosed CML recently and also they have got to know that there are many people who are leading a normal life with CML for more than 20 years. After that informative presentation, Param was called to explain about Friends of Max. He spoke in Kannada and explained what the role of Friends of Max is and why it is was formed and how the meetings were organised etc. Also, the audience was told how to go about the registration to the Friends of Max. Chai for Cancer fundraising event was also explained in detail.
After this Ms. Ashika asked a few volunteers to explain their lifestyle with the Glivec and how they are collecting the medicines during this COVID situation. Last but never the least, CML is not a major health issue we can survive and lead the happy life with the Glivec and the program ended with positive energy.
– Kiran B S, FOM Bengaluru
