25 Years of Glivec
Meet Kothai and Thiru, the next and the sixth champions in our special Patient Advocate of the Month Series.
– 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.
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.
A cold December night in 1999 and Thirupati, father of two young boys the youngest just a year old, was on yet another business trip somewhere in the US. He was missing them and his wife Kothai feeling bad he had to be away leaving her alone with the children so frequently.
Surfing channels on the television, he found himself watching a talk show featuring a physician called Brian Druker who was speaking about a wonder drug that was creating history in the world of cancer therapy. This compound called STI 571 was all set to convert a hitherto fatal leukemia into a chronic, manageable condition. He felt the passion and excitement in the voice of Dr Druker and thought to himself how much mankind owed to science and the efforts that went into seeking and bringing succour to those who needed it most.
Meanwhile the day had already dawned in his home city of Coimbatore, deep in the South of India where Kothai was already on her way to work as usual on her two wheeler. The children were with their grandmother and Kothai who worked as an agricultural scientist at a research laboratory had a long day ahead which would end only after she had collected the reports of some blood tests she had got done some days ago.
She tells me she remembers how she had been quite reluctant to do the tests and had them done only because a friend had insisted seeing how listless and tired Kothai had been for a few months now. Kothai had not paid much heed to all of it blaming it on her hectic and tiring schedules post resuming work after the baby had arrived. In fact she had laughingly told her friend that she was just jealous of her slim and trim figure calling it weight loss because the friend herself was struggling with being a little overweight!!!
A call from the senior pathologist asking her to come collect reports had reminded her and she left work a little early to do so. Once there she was asked if there was someone from the family they could talk to and if not they would send the report directly to the physician. Not really suspecting that something could be amiss she explained she was a scientist herself and would like to take the reports herself. She remembers how there were quite a few of the lab personnel there and handing over the reports to Kothai the senior in charge shared the diagnosis. Chronic Myeloid Leukemia with a prognosis that gave a maximum of three to five years!
Kothai doesn’t remember how she even got back home through the late evening traffic carrying this terrifying news with her. All she wanted was to talk to her husband. Who was all the way across the ocean on the other side of the world. And unknown to her, watching a talk show on the drug that would change the way in which Chronic Myeloid Leukemia would be treated and managed.
Cut back to the Christmas of 1999 the day after their younger son turned a year old. Thiru had returned immediately to India hearing of his wife’s diagnosis knowing now there was this wondrous treatment for his wife’s leukemia but not knowing how and where to ensure she could access. He remembers how during that time what an insurmountable task this seemed.
All the Hemato Oncologists in town were out attending an important conference in Bombay that weekend and the wait for their return seemed interminable. Helped by Kothai’s brothers, Thiru was on the lookout for any clinical trial Kothai could qualify for and that was not easy considering costs and treatment protocol that had to followed. Finally, they were allotted a slot in the Interferon + STI 1571 trial by Stephen O’Brien in Newcastle with Dr Ramnathan Jayaram coordinating from Coimbatore.
Eighteen months later when the Glivec Assistance Program was launched it was my very pleasant duty to work through the intake process involved and ever since then Poongothai and Thirupati have been an integral part of the Friends of Max fraternity.
Being diagnosed with Inclusion Body Myositis (IBM) a rare, slowly progressive degenerative muscle disease 18 years after the CML has not deterred the spirits of Kothai, who as a young athlete with a deep passion for sports had excelled in sprinting, proudly representing her State and University.
Kothai and Thiru continue to live in Coimbatore with their now grown sons and their families.
“I’m ever grateful to have seen my children grow before my eyes” she says now enjoying the company of her grandchildren.
Her advice to the CML community.
Her message to others is simple yet profound: “Take your medicines and do your tests regularly. Be thankful to your caregivers and to your family. Always be grateful for what we have at any phase of our life. God always has better plans that we may not yet see.”
She would also like to send out a message to all those patients who have been on Glivec for over 10 years and whose BCR levels has been zero for the past 5 consecutive years. With their doctor’s guidance, they may want to explore Treatment Free Remission (to be without medication) while ensuring regular monitoring and testing. However, it’s important to remember that every patient’s physiology is different, so patients should only proceed with a doctor’s approval and access to necessary diagnostic test facilities.
