Patient Support Group Meeting in Mumbai
Report by FOM Volunteer Waman Joshi
FOM Patient Support Group meeting was held on 24 June 2018 at Tata Memorial Hospital, Mumbai.
It was on Saturday June 23rd 2018, in Mumbai it was raining so heavily, and we all CML & GIST survivors and caregivers were thinking about the occasion which was scheduled on 24th June 2018 at Tata Memorial Hospital, Mumbai: The CML & GIST Patient Support Meeting.
The strong dedication and prayers of patient worked and the Sunday morning was bright and shining and by 9:30 AM the registration desk had completed the 90+ patients & caregivers’ registration.
Amma (Ms. Viji Venkatesh) and FOM team was busy welcoming each and every person, with Amma’s “Pyar Ki Jhappi” everyone was charged and interacting with all dear Philadelphians, and enjoying the delicious breakfast.
By 10:15 AM most of the seats in the Rustom Choksi Auditorium were full, everyone was getting comfortable seat.
Mr. Pramod started the proceeding exactly at 10:30 AM by welcoming one and all and the meeting was inaugurated with the National Anthem.
10:45 AM FOM city chapter leader and trustee Mr. Nirmesh (Bhai) shared the wonderful experience of CML Horizons 2018 meeting held at Poland. Giving insight of world CML Advocate network specifying the impressive figures as:
18,000 + FOM patients from India
250 + City chapter leaders
12 Members of Trustees
118 CML patient group from 88 countries conducting the annual meet for last 16 years.
The mission of CML Horizons was categorically defined as “facilitating and supporting best practices sharing among patient Advocates across the world.
Mr. Nirmesh briefly mentioned the main objectives of CML advocate group as:
Item 1: – What causes CML is unknown
– It’s not hereditary or contagious
– It occurs more in Men than women
– Average age world over is 65 years, but in India it is found 38 years
Item 2: – Why cells become resistant to drugs is unknown
– Doctor knows which TKL works for the patient
Item 3: – Test for CML are CBC, Cytogenetic – FISH, PCR, BCR – ABL.
Item 4: – Low risk patients generally 1st generation TKL are best.
– Intermediate or high risk patient 2nd generation TKL are found better.
– May be time to recommend the reduction of dosage.
Item 5: – Research to eradicate CML
Item 6: – Evidence based data to be accepted with seriousness by all stakeholders.
It was great experience to all of us by knowing the CML advocates group activities.
At around 11.15am Ms. Ameya, Max office, welcomed the young and dynamic Ms. Priya Katariya (Dietician), Ms. Sushma Kale (Yoga Trainer ) and Mr. Ilango Nader (Cancer & life motivational coach) for giving us the interactive session on Nutrition, Healing and Meditation tips for cancer patients.
– Ms. Priya explained in simple terms concept of Nutrition: The building blocks of Life.
– Explained the important of nutrition for the cancer patients, giving efficacies on :
o Proteins / Minerals / Carbohydrates’ / Fats / vitamins / Water
– Ms. Sushma Kale had given the live demonstration by doing simple but effective yoga exercise and explained how important to know your body.
o She gave brief information on Human body, Birthing, Mind, Interact & spirituality
– Mr. Ilango explained the state of emotions and how to control them.
o He explained the wellbeing of mind, Emotions, Tensions handling, and techniques of diverting the emotions.
Session was followed by Q & A which commenced at 12.15 pm
Amma welcomed the Doctors panel of physicians namely Dr. Advani ji, Dr. Banavali and Dr. Hasmukh Jain.
Dr. Advani ji opened the meeting by giving past 40 years of CML patient history of treatment and stages of medicines available during the 40 years. He categorically stated that Gilvec tablet is one of the best medicines and normally 90 to 95 % patients get treated successfully.
Dr. Banavali ji supported Dr, Advani ji and explain that it was very difficult period for CML patient before Glivec. Also explained the newer TKL medicines.
Dr. Hasmukh ji being the young generation haematologist, explain the newer medicines and treatments available to CML & GIST patients.
Session was then open to audience for questions and explanatory and simple language answers from the panellist Doctors.
It was indeed a great knowledgeable experience for both CML & GIST patients.
Vote of Thanks given by Ms. Rashmi (City chapter leader FOM) and small token of appreciation was given to panellist doctors by City chapter leader, Mumbai
Ms. Ameya informed everyone to have the lunch and return to auditorium by 2:30 PM for post lunch session.
Thanks to the Tata Memorial Hospital canteen manager for serving the delicious food and “Kulphi” ice-cream.
After the lunch break, we all were full of energy. Amma ji told us the important of Compliance. Different aspects of behavioural influences that determined both good and bad adherence practices were discussed.
GIST awareness day session was celebrated. Nikhil, our city chapter leader and GIST Volunteer took the lead and conducted this session which started with a GIST101 for our CML brethren. He shared experiences from all our GIST meetings and GAD events till now including information on the various Life Raft Group and GIST Horizon conferences, the recognition and the awards FOM has received for their work in GIST Awareness.
This year the GAD theme was ‘GIST Do It’ and our small band of GIST champs did it…they took the lead and throughout the meeting inspired everyone by their positive energies.
Overall the meeting was a highly successful and lot of takeaways for one and all.
All dear Philadelphians started saying ‘Sayonara” with promise to meet again