25 Years of Glivec
Continuing our observance and celebration of the 25th Anniversary of the advent of the Magic Bullet that burst upon the firmament of cancer therapy. It is my pleasure and honour to bring to you the third in our series of the special Patient Advocate of the Month.
– Viji Venkatesh
Dr Raghu Krishnaswamy from Hyderabad
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.
To live with cancer and to remain on lifelong 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.
Friends of Max (FOM) the largest registered support group for CML and GIST patients will also 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.
Initially dismissing his weight loss and discomfort as minor ailments, Dr Raghu who was a practicing cardiologist himself, was confronted with the stark reality of his condition after blood tests confirmed a diagnosis of CML. The year was 1999, and treatment options were bleak. His children were still young, and the future seemed uncertain. The aggressive treatment with Hydroxy Urea failed, unable to find a match for BMT (as his siblings did not match) and the severe side effects of Interferon and Cytosine Arabinoside, which he was put on to, made life unbearable. Professional aspirations pretty much took a backseat, and hope dwindled. His wife, a highly qualified plastic surgeon, knew the seriousness of his condition.
Dr. Raghu’s journey to Glivec was arduous to say the least. It was 2001 and he had missed the U.S. clinical trial by a week. However he was able to make it to the trial in Singapore. Once enrolled, within a month, he experienced deep remission, and his life took a dramatic turn for the better. Frequent trips from his home in India to the Trial Centre in Singapore took its toll but it had to be endured. The drug was working!
Once the Trial was over and the support of The Max Foundation and Novartis’ patient assistance program ensured continued access to treatment. For Dr Raghu and his little family this marked the beginning of a second lease on life.
I can never forget that bright morning in Hyderabad when I joined Raghu and Niranjani for breakfast in their beautiful and cosy home. Sitting at the table with both of them and their little boys enjoying the traditional South Indian fare accompanied by piping hot coffee. How often has this been repeated over the past two decades and more! More importantly what joy to have witnessed how over these years, at this very home, around this very table, the birth of the Hyderabad Chapter of Friends of Max. Dr Raghu has indeed been the most inspiring force bringing together CMLers young and old and their families to work as one furthering the mission of FOM: Together, We Share and Learn.
In his own words now, presenting Dr Raghu’s journey of 25 years as a CML Survivor since June 1999.
“I am a practicing Cardiologist currently working as Senior Cardiologist, Clinical Director Cardiology, AIG Hospitals, Banjara Hills, Hyderabad. My family members include my wife Dr. Niranjini who is a plastic surgeon, my two sons Varun and Vikram who are both engineers from reputed Universities and have in addition acquired their Master’s degree from the United States. Both my sons are married having selected their own life partners. My daughters-in-law are highly qualified, the older, Priyanka, an MBA from SP Jain Institute and the younger, Adora, a PhD in Artificial Intelligence from Rochester University, New York. And we are also proud grandparents today to our 3 years old grandson (with the second one on its way).
Reading the above lines, you must think, “Wow! This guy has got everything going for him.” Well, life wasn’t that simple to start with and that is what my story is about.
I was born in Chennai which I have always regarded as an aberration for I have lived almost my entire life in the most lovable city on earth which is Hyderabad. I did my schooling from All Saints High School, Gunfoundry after which I obtained a seat in M.B.B.S in Gandhi Medical College O.U. after writing an entrance examination. I then went on to do my MD Medicine from Osmania medical college and then my post-doctoral degree of DM Cardiology from the prestigious Sree Chitra Tirunal Institute of Medical Sciences, Thiruvananthapuram. After a brief stint in the Middle East, I joined the Nizam’s Institute of Medical Sciences as Associate professor of Cardiology. Everything seemed hunky dory to me at this stage. However, that is when things came crashing down. The advent of the year 1999 was like any other year before that. At least there were no portents of any impending misfortunes.
It was in early June that my colleagues and friends started remarking on my weight loss. I didn’t give it much thought as I felt quite healthy at that point. However, a fortnight later I started experiencing frequent loose motions, and a dull pain in my stomach region. Suspecting malignancy of my intestines I decided to undergo a CT Scan of the abdomen and incidentally also obtained a few blood tests. I knew things were terribly wrong the moment I sighted the look on the Radiologist’s face through the glass. The blood report came shortly after and the diagnosis of CML was made. Suddenly the world around me seemed shattered. My children at that stage were 10 and 7 years old and still in their primary school. Then, started the darkest and most difficult period of my life. I was started on Hydroxy Urea which was ineffective. My siblings did not match for a bone marrow transfer and so without any more options I was started on Interferron and Cytosine Arabinoside. The side effects were so unbearable that I was living practically in hell. My professional career started declining and suddenly life was without meaning for me.
I went to the US with my students’ help to enroll in the Gleevec trial but unfortunately missed it by a week. Unable to bear my plight, Niranjini’s brother found out about the trial being on in Singapore. I enrolled in it and for a year would travel to Singapore every 3 months for tests and a supply of Gleevec. I developed a deep remission within a month and am in MMR since then. Thanks to Novartis and The Max Foundation I have not had to look back ever since.
I have withstood a major fracture of my leg requiring operation and an appendix surgery but never needed to stop Gleevec through all these years. I am a fit 72 years old now (with the birthday coming up on 1st August) and am able to play two sets of doubles tennis and work for 9 hours in the hospital. A quality of life that no other chemotherapy drug would permit. This is why when people harp on the side effects, I get quite impatient with them, for in my opinion, the side effects are very minor compared to the humongous benefits that it confers.
In the year 2002, the Gleevec trial ended and the alarming possibility of having to purchase the drug became a reality. It was then that Novartis stepped in and initiated the programme of providing Gleevec at no cost through the good offices of The Max Foundation. It was then that I came in contact with an amazing person with a rather old-fashioned name of “Vijayalakshmi.” The shorter version suits her very well and she is known the world over as Viji and in India as “Amma.” I still remember, as if it happened yesterday, my telephonic talk with her and the vibrancy in her voice. Also, the triumphant feeling of placing her as a South Indian despite a perfect North Indian accent. This was followed by a brief visit by her to Hyderabad. She visited me and we soon set out to meet the other recipients of Gleevec from Hyderabad. A core committee was set up and we soon started conducting meetings for patients with CML who were on the drug. A number of regional meets followed culminating in a National Meet, which was attended by over 1200 patients and caregivers. We also conduct core group meetings regularly and have been celebrating CML Day with great enthusiasm year after year. Good collections are also made every year during the Chai for Cancer Campaigns.
Gleevec has given me a rebirth. Friends of Max and The Max Foundation has become another family. I feel twice blessed. To those who happen to have CML and read this I want you to understand that CML, like Diabetes and Asthma, is just a condition and not a disease. Gleevec has given us the opportunity to live a full life without worries for the future. CML has made me a better person, able to empathize with my patients better and understand their needs well. I am able to pursue my hobbies of playing tennis and watching high level international sports. I have watched my children grow and mature into good human beings with a sound set of humane values.
In all this, I am fortunate indeed to have Niranjini as my life partner. Her unfailing optimism gave me the necessary courage to meet life’s challenges. Her steadfast belief that things will work out and that God having given us difficulties will also show us a path through it helped me tremendously. I wish all my fellow cancer survivors and their care givers a great future.”
Dear CML and GIST survivors. My message to you is simply to get on with your life as if you don’t have a problem! Plan your future from marriage to retirement and beyond as if you never had a problem. The way we see it with improving treatments and newer and newer drugs coming in, the ten and twenty year survival is more than 95%. That is similar to the life expectancy of someone who does not have CML. You should not hold back from what you set out to do because of this.
Today we consider ourselves lucky that we have a bigger family, FOM to fall back on. A family you weren’t born into but fortunate to acquire thanks to CML.”
