GIST Support Group Meeting-15/9/2013
The GIST Support Meeting was held at Tata Memorial Hospital, Parel, Mumbai on 15th Sept 2013.Meeting was organized by ‘Friends of Max’, an all-volunteer group of CML and GIST survivors & care givers.
There were a total of 34 participants including Doctors, Speakers and Patient Advocates in which 27 were GIST survivors and care givers. Staff members of The Max Foundation under vibrant leadership of Mrs. Viji Venkatesh were in full swing to make meeting a big success.
Meeting began with tea and snack by 09:30 Hrs in the Rustom Choksi Auditorium of Golden Jubilee Building. Participant registration went on in the back ground during tea time. Following to registration and tea, by 10:30 Hrs main session of the meeting commenced with National Anthem.
With a warm welcoming remarks from Dr. Bhawna Sirohi, meeting entered into its fruitful sessions.
Following to welcoming speech, Mrs. Viji Venkatesh, Country Head of Max Foundation in India provided a brief but precise power point presentation revealing history of The Max Foundation, objectives and blissful events The Max Foundation had have so far. Participants put all their ears together to absorb all essences of this presentation in which majority of partakers are blessed beneficiaries of The Max Foundation.
Afterwards, Mrs. Anjali Nair, Chief Dietician of Tata Memorial Hospital delivered an in-depth interactive power point presentation on diet and its role in ones well-being. She described several keen factors about food habits, food preferences and its mediocre influence with several disease conditions, if not administered properly. Few of participants placed queries about dietary aspects and Mrs. Anjali Nair cleared all their concerns in a moderate way.
Next to dietary session, Dr. Bhawna Sirohi, Oncologist and Dr. Shailesh V. Shrikhande, Surgeon of Tata Memorial Hospital managed a Question and Answer session. Several participants shared their concerns and put forward candid doubts on different disease progressive conditions. While Dr. Bhawna Sirohi cleared all medical based interrogations in most sensible and informative way, Dr. Shailesh V. Shrikhande was firmly interactive with all surgical bound apprehensions. Possibilities of RFA and need of prolonged medication & strict follow up care for metastasised disease progressions were vital outbound deliveries from the doctors. Need of mutational analysis on tumours during different disease progression stages, particularly during metastasis was also a valid information. Answering to a strong doubt about effectiveness of generic Imatinib, doctor specifically advised to go with generics of BMP accredited pharma Companies as alternative option but advised to continue on Glivec if one is a beneficiary of it already. To another keen doubt of a metastasised patient who had have multi surgeries, doctor advised that there is no surety on progression free survival even resection was successful as GIST cells would be circulating through blood stream and any point of time another bad prognosis can’t be ruled out. This point emphasizing survivors to be very strict with scheduled medical reviews and medications under direction of an expert GIST doctor.
Trailing to Question and Answer session, Dr. Bakul Pandit and Mr. N.T. Raghu Nandanan, Patient Advocates jointly but in different instances explained the importance of a Support Group for GIST survivors and care givers. Main deliveries were;
• With togetherness, we can share and learn to become supporters each other.
• As a ‘Parivaar’ (Family), wellbeing of every family member will be important to co-members.
• Veteran Oncologists must develop skills to become ‘GIST Specialists’ too as behaviours and treatment protocols of GIST is quite different.
• Lack of authentic GIST Experts is a challenge in India, even in several developed Countries too.
• India is a large Country having around 364 known languages, 84 living languages, 26 official languages with intricate topography, dissimilar cultures and attitudes of people are main challenges to organize a group logistically and uniquely. So, bonded togetherness of group members are very important to run an efficient and successful group for mutual benefits.
• There is well set Global GIST oriented community consisting of Scientists, Researchers, Expert Doctors, Patient Advocacy Groups, Volunteers and self-learned Survivors to support us in case of a need.
• Life Raft Group, U.S.A is keen to provide education to Doctors, Patients and Patient Advocates to make them fit to face and manage threats of disease. Video Conference to the Doctors is a novel idea of LRG.
• Several Patient Advocacy Groups, worldwide are highly determined and research oriented, for the instance ‘GIST Support International’, U.S.A and ‘Das Lebenshaus’ (House of Life), Germany are with lot of statistics and constant updates on GIST matters, fortunately happened to be very supportive to entire GIST community.
• Though GIST is not fully curable disease at the moment, it is a treatable ailment. Several researches and clinical trials are in the pipeline and one day it shall be possible to have a recurrence free survival.
• As Patient Advocates are closely associating and learning all new happenings with the GIST researches, clinical trials and several new outcomes, it is possible to co-patients/survivors to share even their tiny concerns and get correct directions at any point of time but not bypassing treating Doctors.
• GIST is getting more popular now-a-days, partially may be diagnosed as benign. Though, there is no permanent term ‘benign’ in GIST for the moment and regular follow ups are important to this category too.
• Whatever treatment options are available, first line ‘medicine’ is courage to face and manage disease. At this point, a support group can help a lot.
Afterwards, a Yoga session was administered by Ms. Nishu Singh Goel, which was interactive. She explained basics of Yoga and how it is beneficial to tackle certain kinds of Cancers. A practicing session with simple warming up linked with Yoga aspect was also conducted by Ms. Nishu and all participants were actively accomplished this small training period. A ‘Pranayama’ drill was also taught by Yoga Mistress, which could give a good feel to all interim trainees. Ms. Nishu Singh Goel entreated all participants to practice these Yoga basics for their own benefits.
Before ending of meeting, several GIST survivors and care givers collected contact details of Dr. Bakul Pandit and N.T. Raghu Nandanan personally to enable them to contact in case of a need.
Mrs. Vasamvada, a stalwart, GIST survivor for past 13 years, at the end of meeting thanked everyone for being engaged and actively participated. She expressed special thanks to all Doctors, Speakers, Administration of Tata Memorial Hospital for allocating such a well-equipped auditorium, Volunteers, The Max Foundation and its staff members, especially Mrs. Viji Venkatesh for coordinating such a regimented meeting.
Ms. Ayeshah Dadachanji, NOA Coordinator at The Max Foundation anchored meeting from the first to last with her active presence everywhere. Mr. Ganesh, Secretary of Dr. Bhawna Sirohi happened to be a silent Volunteer in the background who was the main source to enable such a noticeable gathering.
N.T. Raghu Nandanan, GIST Patient Advocate, FOM