My journey through GIST- diagnosis & treatment

It started as a vague pain in the upper abdomen on the left side occasionally. Little had I known that it would turn out to be something that would completely shake my world.

I was diagnosed with a tumor in the stomach & a series of tests revealed that it was a Gastro intestinal stromal tumor (GIST).  The diagnosis was followed by two major surgeries-first one at Bombay Hospital in 1999 & the second at Tata Memorial Hospital in 2000. Fifteen months after my second surgery, it was revealed that I had metastases in the liver. A routine ultra sound detected one & the CT Scan that followed the ultrasound showed that there were two such deposits in the liver.

My journey with Glivec started in August-2001. My treating physician, Dr. SH Advani suggested that I try this medicine stating that it was a fairly new drug but held a lot of promise and he was hopeful it would work for me. The first six months of therapy were tough-emotionally & financially. Emotionally because there always lingered the big question “Will it work for me?” and financially because it was very expensive and at that time not available in India hence had to be imported from Novartis, Basel. After a number of visits to various government offices, we obtained the import permit & I started taking the medicine in September 2001. We purchased the medicine for the initial six months and after that learned of GIPAP (Glivec International Patient Assistance Program)-again through Dr. Advani.

Dr. Advani referred me to the one Mrs. Viji Venkatesh-a representative of the Max Foundation at Mumbai and life changed completely after that. Viji as I know her today, very patiently & meticulously guided us through the application process & I became the first GIST patient to be approved for enrollment for assistance through GIPAP in India.

It has been more than 10 yrs now that I have been a recipient of Glivec through GIPAP. The medicine has worked wonders for me. In the past ten years plus, I have been very regular with my medicine taking care not to miss my tablets any day. Both the mestastatic lesions detected previously have disappeared & by God’s grace I am keeping good health now. I am able to continue with all my daily activities and make sure I keep a positive attitude. I have experienced some side effects occasionally but have managed to modify my routine & lifestyle to overcome them with ease.

I am still taking the medicine and continue to benefit from it. I make sure that I take my medicines regularly, keep my check-up appointments with the doctor and never let negative thoughts discourage me.  I am now a volunteer of the Friends of Max and regularly attend all the patient support group meetings and continue to benefit from the advice given by the doctors at all such meetings.

I am extremely grateful to Novartis, GIPAP & the Max foundation for giving me a second life.


Report by Mrs. Vasamvada Shukla.