25 Years of Glivec
It is my pleasure and honour to bring to you the fourth in our series of the special Patient Advocate of the Month – Ashish Poddar of Mumbai.
– Viji Venkatesh
This is the series presenting the stories of those CML and GIST patients who till today, are living testament of the magic Glivec continues to work upon on them.
It is fitting that we at Friends of Max (FOM) bring you these lived experiences as the world of oncology celebrates the 25th Anniversary of the advent of the Magic Bullet that burst upon the firmament of cancer therapy.
Friends of Max (FOM) the largest registered support group for CML and GIST patients will in a few months turn 25! What grew organically from the needs felt by those who were faced with a life threatening diagnosis and who had to be on life long medication continues to remain that safe and secure platform for the thousands it supports.
To live with cancer and to remain on life long treatment for a life threatening, life limiting condition ; few of us working in the world of cancer care would have even thought we would be confronted with a situation like this.
Yet, a quarter of a century ago this is exactly what presented itself to us.
I met Ashish for the first time in 2002. He walked into my little cubicle and it felt as though the sun god himself had walked in.
He carried his six foot something height with great lightness and his wide smile matched his wide shoulders. Must have come to discuss a parent’s or another family member’s case I said to myself as I greeted him.
He saw my look and said laughingly, “No one believes I’m the patient! Even at the hospital just now the orderly told me to get up and let the patient sit!” I was his fan from that very moment.
Diagnosed in 1995 when he was just 21 years old, for the next few years he was on therapy which was the only protocol for managing CML given till the leukemia became, well, unmanageable. This was Hydroxyurea, Busalfan, Interferon …
When the Imatinib (STI571) trials began Ashish managed to raise funds to go to the US but missed the enrolment deadline.
Somehow in 2001 with great difficulty his family managed to procure the Magic Bullet for him from international sources.
It was only with the introduction of the Glivec Patient Assistance Program (GIPAP) in India that Ashish had regular access to Imatinib. That first day he came to meet me for enrolment into the program, Ashish told me all about how his CML was detected. In his own words ( which left me stunned) “If I hadn’t fallen off the local train that day on my way to meet friends I would never have known I had CML” . We all know about the infamous Mumbai Local trains and how hazardous the commute is with passengers having to hang on to dear literally as they travel the length of the city from home to place of work.
Ashish fell off the train on one such commute and it was harrowing just to listen to him about how he fell off and an alert linesman saw him fall and swiftly managed to bring him to the safety of the platform. He doesn’t recollect much other than somehow his brother was informed and then he was taken to the hospital. There were injuries that were attended to but it was the reports of a routine blood test the doctor advised that brought shock beyond belief to the family.
Ashish’s CML journey too has been as exciting, tumultuous and unnerving as that eventful one all those years ago in the Mumbai Local.
Medical events involving severe side effects and some disease progression meant he move from one TKI to another – Nilotinib, Dastainib, Ponatinib each with their own side effects which over the years wore him down but never his spirit. Ashish has remained that same energetic and helpful soul who will never turn away anyone in need of anything; be it a kind word or words of assurance or assistance of any sort.
Active in Friends of Max and in his community Ashish continues to be the one resourceful person anyone can turn to.
Today, more than 30 years after his diagnosis and on the latest TKI for managing CML, Ashish credits his well being to all the good blessings from family, friends and well wishers.
Ashish and his wife Pratibha (the sweethearts married in 2001) and their daughter along with his brother Sandeep and his family live with their parents in Goregaon , one of the largest suburbs in Western Bombay. The Poddar family run a thriving catering / restaurant and florist business and continue to remain a very strong pillar of social engagement and support in their community.
