Report by FOM Volunteer Dr Nikhil Guhagarkar
On Saturday the 8th July 2017, The Max Foundation arranged a grand celebration of GIST Awareness Day (GAD) for its Support Group Arm Friends of Max at the Lecture Hall, Rustom Choksi Auditorium, TATA Memorial Hospital, Mumbai. It was titled ‘Patient Powered Hero Campaign’, drawing inspiration from Life Raft Group USA’s initiative.
GAD is an annual event in July celebrating the survivors of the rare cancer GIST. This was the fourth year of celebrations.
Two new initiatives from Life Raft Group were introduced namely: Tommy Tissue and Dina Data.
Tommy Tissue seeks to create awareness for tissue donation, the more the samples of GIST tissues donated to the Tissue bank, the more research can be carried out on GIST, namely mutational analysis, testing GIST tissues for sensitivity to new TKI’s and other drugs so that more drug options are available for treating GIST. Also, having more tissue means a better understanding of the biological behaviour of GIST.
Dina Data signifies the importance of having more data on GIST, more data about GIST obtained across the world will lead to better understanding of the disease, its demographics, pattern, response to treatment, outcome of various drugs and types of surgeries.
The meeting, well attended by GIST survivors and caregivers, started with the national anthem. This was followed by an introduction by Ameya and Viji Venkatesh who gave an introduction on Friends of Max and GAD. She talked about the various programs conducted by FOM on GAD in the past four years. A video on all the GAD events was played.
Viji talked on the rare cancers like GIST and the importance of celebrating GAD. She spoke on Tommy Tissue and Dina Data and on her journey of 15 years with Max and GIST and CML survivors brought together by Imatinib. After an inspiring talk the stage was handed over to Dr Jagannath.
Dr P Jagannath is the Chairman, Department of Surgical Oncology at the Lilavati Hospital and Research Centre Mumbai. He spoke about the difference Imatinib has made to the treatment of GIST. How the survival of patients has shown a great improvement since the advent of Imatinib and other TKI’s. He also dwelt on the importance of support groups like FOM which makes a big difference to ease the journey with cancer for patients and their relatives.
I was called upon to explain the two new websites of Life Raft Group namely GIST Prime and SideEQ.
GIST Prime: https://www.gistprime.org/
This is the patient Registry in which the GIST patient enters the specifics of his treatment like date of diagnosis, site/size of the tumour, biopsy and its reports, evaluation reports like CT scans etc, and his treatment like Medication and Surgery done. This data helps Researchers to follow the pattern of the disease and improve its treatment.
This is the patient support site for managing the side effects of the drugs and surgery for GIST. It is an interactive website whereby one can record their side effects and also follow relevant side-effects. Other users offer solutions to these problems and makes the journey easier.I thanked Dr Jagannath and Viji for inspiring me to take up advocacy for GIST.
This was followed by Q&A session by Dr Vikram Chaudhari from the Department of Surgical Oncology, Tata Memorial Hospital. Dr Vikram answered all the questions by the patients very patiently and in simple language. Questions ranged from weakness, duration of follow up, bleeding in the eyes, diet and exercise to some questions on individual case problems.
A fun session was introduced by Vijaya which included pinning ribbons and taking photos with masks as Super heroes. As every cancer survivor and his family are Super Heroes in their own right!!