25 Years of Glivec
As we commemorate the 25th Anniversary of the advent of the Magic Bullet that burst upon the firmament of cancer therapy I am beyond proud and happy to bring to you the second in our special Patient Advocate of the Month series, the stories of those CML and GIST patients who till today, are living testament of the magic Glivec continues to work upon on them. For all those 25 years and more we hope.
– Viji Venkatesh
To live with cancer and to remain on life long medication 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.
Today Friends of Max (FOM) the largest registered support group for CML and GIST patients will soon turn 25! It 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.
Together We Share and Learn became its motto and this month we feature one of our most loved members Vasamvada Shukla who is the epitome of what FOM stands for. Vasamvada Shukla is our GIST patient advocate and yes, been on Glivec ever since we was diagnosed 25 years ago. By her side all these years as a committed caregiver and FOM City Chapter Leader has been her husband Vinay Shukla and her daughters Prachi and Pallavi .
Thank you Pallavi for sending us this inspiring testimony of your mother’s journey .
25 Years of Grace, Strength, and Hope: Our Journey with GIST, Glivec & GIPAP
In 1999, our family’s world was suddenly and profoundly shaken when my mother was diagnosed with a rare and life-threatening cancer called a Gastrointestinal Stromal Tumor (GIST).
The rare seem to love her-Her name Vasamvada is very rare-I did a deep dive and could find only a few hundred people with this name, her blood group is AB Negative (just 0.5-1% of the global population) and she was diagnosed with GIST (a rare tumor making up about 0.1% of total cancers diagnosed worldwide). That’s my MOM-rare.
The news shook our world and the ground beneath us crumbled further when, even after enduring two major surgeries, the doctors discovered the cancer had spread, resulting in liver metastases. In those days, the medical landscape had no answers and standard treatments held little promise. Yet, faced with a diagnosis that threatened to steal her future, my mother chose to meet the storm with an immense and quiet strength. My dad walked with her every step of the way and was her rock solid support with my sister, and me—standing fiercely and tightly by her side. My mother refused to let the illness consume her life. Remarkably, throughout the grueling reality of surgeries and the heavy emotional weight of cancer, she continued her vital work as the Principal of her school serving as a pillar of leadership for her community while privately fighting for her life
Then Dr. SH Advani informed us about a revolutionary targeted therapy called Gleevec (Glivec) and it brought a beacon of hope in our lives. But, it also brought agonizing financial strain. The medication was overwhelmingly expensive. Our family stretched every resource to purchase it out-of-pocket for a short time. We were getting desperate as we couldn’t afford to continue buying the medication indefinitely.
Then a God-sent miracle reached us. This was GIPAP-The Glivec International Patient Assistance Program (GIPAP). This patient assistance program, run by Novartis and administered by The Max Foundation, threw our family a lifeline, providing my mother her medication entirely free of charge. My mother was the first GIST patient to be approved under the program. Mom responded very positively to the medication and was disease free within 03 years of starting Glivec and continues to do so.
This profound, life-saving grace transformed not only my mother’s life, but my own. Deeply moved by the help that saved our family, I was drawn into volunteering for the Friends of Max-a support group for many other families like ours who were fighting the same battle. We came together sharing our struggles and deriving strength and hope from each other and thus was born our motto-Together we share and learn.
After working as a volunteer for the Friends of Max, I formally joined The Max Foundation as a Program Officer helping other families navigate this terrifying terrain—guiding them to fight this life-threatening diagnosis with the same hope, dignity, and grace that my mother did. During my three years as a program officer I met so many simple yet very special people who gave me some very special and precious experiences that I still hold very close to my heart.
Today, 25 years since the dawn of Glivec, the journey continues. A quarter of a century later, my mother still takes her medication every single day. There are always small bumps, ups, downs, and unexpected turns along the way, but she continues to overcome every single one of them with strength and a smile that amazes everyone who learns of her journey. She remains the pillar of strength for our entire family, keeping us all grounded, united, and focused on moving ahead. Her survival is a beautiful testament to the power of medical science, the fierce love of a family, and the beautiful ripple effect of a miracle called Glivec.