CML, Glivec and all that!!!
Ashoke Roy – Kolkota, 2008
As my reader should understand my story, I’ll tell you briefly who I am. I am a Kolkata bhadralok,a, a retired academic but still associated with a newly-founded University near my city. My principal preoccupation is teaching and research. I was diagnosed with CML almost three years ago but I am still alive and kicking thanks to that very generous scheme, GIPAP, jointly run by Novartis and The Max Foundation, which has brought hope and confidence to thousands of patients spread across many countries.
My CML history as it unfolded
My encounter with CML was, like that of many others, a devastating experience. It had periods of high drama and moments of great elation, as I will now try to describe. However, at no stage did I feel that the curtains were finally coming down for me. Perhaps I am an incorrigible optimist. It all began in a typically unexpected way on a morning in August 2005 when I gave blood to a pathological laboratory for a routine examination prescribed by our physician. Later that afternoon while I was having my siesta- we Bengalis are fond of such naps which are pleasantly induced by the vast quantities of rice that we eat -an urgent call from the lab asked me to come there for a second blood test as there was something inexplicable in the results of the first. My wife and I went there with some trepidation, the sample of blood was taken, quickly analyzed and the knock-out blow soon delivered –I had CML!I was stunned but my wife broke down completely and I remember that I felt more sorry for the poor woman than myself. The young pathologist was very sympathetic and assured us that the disease was eminently treatable these days by a wonder drug called ‘Glivec’ and he suggested that we consult a lady oncologist in the city, Dr.Sarmila Chandra, for my treatment. We returned home in a daze and made a transatlantic phone call to our son and his wife. The stage was set for another emotional scene which somehow ended with my son promising that he would be home in a couple of days. He duly arrived, and we met Dr. Chandra who kindly agreed to take me on as a patient. A bone-marrow test was arranged soon thereafter, followed by the so-called ‘Fish’ test, which confirmed the diagnosis, and with the help of Dr. Chandra an application was sent to The Max Foundation requesting the supply of Glivec.In its characteristically efficient way, the Foundation approved the application quickly and the life-saving drug started arriving from some date in October that year.
Soon after the bone-marrow test I had a close brush with real, if not life-threatening, danger but its connection with CML was tenuous .I was advised by the clinic where the test was taken to refrain from bathing (a strange restriction!)or doing any kind of exercise for the next three days; restrictions which I carefully observed. But on the fourth day, being a physical fitness fiend, I did some stationary running at home with disastrous consequences. Excruciating pain in the right leg resulted in a sleepless night and it was found next morning that the leg had turned dark-brown in colour, an obvious sign of internal bleeding. Dr.Chandra was very disturbed when informed about the incident and immediately ordered a Doppler test to determine whether a blood clot had developed. Fortunately, the results were negative but a precautionary blood test revealed the alarming fact that my haemoglobin level had come down to six. More consternation for the doctor who had me hospitalized instantly, and then transfusion of blood in copious quantities finally restored the level to something like normal. I lived to tell the tale and came back home a much chastened man after being severely reproved by the lady for my carelessness in disregarding instructions.
Like everyone else I had to suffer the side effects of Glivec. I was taking it with watery eyes, pain in the joints, nausea, gas and acidity. Quite frequently it was followed by vomiting which actually came as a great relief but which my wife found disturbing. The severity of these side effects declined with time and I have now settled down to a more-or-less normal life style but I am forced to stay on a bland diet as rich food and Glivec refuse to coexist in my system.
A visit abroad
BCR ABL tests at regular intervals showed that complete remission was achieved in April 2006 and the remission continues. With the enthusiastic permission of Dr. Chandra, I accepted an academic assignment in the U.S. where my wife and I had a happy time barring an incident that threatened to cut short our stay. Again, this had nothing to do with my affliction as such and yet was related to it in a curious way. I had been assured of a supply of Glivec for the period of my stay but the Health Insurance Company associated with the University refused initially to sanction the expenditure on some technical ground. Arguments and counter arguments went on causing great suspense and uncertainty to us till the HR department of the University stepped in and sent a strongly-worded e-mail to the CEO of the company saying that a serious view would be taken if this refusal was not withdrawn and, to our great relief that worked. CML patients intending to go abroad for any extended period of time would be well advised to first ensure an uninterrupted supply of the drug before they undertake such a trip.
A little philosophy.
Now that the history of the illness has been related, it is a interesting exercise to look back and see how my life and outlook have been affected. I would like to do this in an impersonal and detached way, if possible.
(1)Christians believe that “suffering purifies”. There must be some truth in this because one who has suffered is in a better position to understand the pain of another human being and offer him what the Buddha has called ‘loving kindness.’ However, too much suffering can frustrate, embitter and may even destroy a person’s will to live.
(2)It is meaningless to ask, as sometimes my wife and relatives are inclined to do, why all these things should have happened to me of all people. Such questions are, in the nature of things, unanswerable. The sanest attitude is to regard them as natural but random events which affect a (relatively) small number of unfortunate people. If there is any lesson to be learnt, it is surely this: we are all, without exception, subject to the laws of nature. Remember even Ramakrishna, the great saint of Bengal who is worshipped as an avatar by many of his devotees, died a painful death from throat cancer.
(3)It helps tremendously if one believes in a ‘divinity that shapes our ends rough hew them how we will.’ There is something to lean back on for support even if a tsunami ravages one’s life. Sceptics and Doubting Thomases, on the other hand, have a much harder time. Even for them, ways for dealing with such traumas have been shown by some exceptional individuals. I would like to illustrate this by quoting the last few lines of a poem composed by J.B.S.Haldane, a noted biologist, after he was diagnosed with cancer(not CML)many years before the advent of life-saving remedies like the ‘ magic bullet that every CML patient has in his/her armoury these days. The poem’s carefree; wryly humorous treatment of a dreaded subject like cancer has captivated many readers ever since it was penned.
“Cancer’s a funny thing”
‘My final word, before I’m done,
Is ‘cancer can be rather fun’
I know that cancer often kills
But so do cars and sleeping pills:
And it can hurt one till one sweats,
So can bad teeth and unpaid debts.
A spot of laughter, I am sure,
Often accelerates one’s cure.’
This kind of fearlessness, tinged with humour and a cheerful optimism, is admittedly very difficult to have but it can be acquired as Haldane and others have shown .The impact of the poem is not lessened by the admission that its author eventually succumbed to the disease.
I have indicated that my wife was my constant companion throughout my travails. To borrow a happy phrase, Glivec may have given me a new lease of life but she consolidated it and brought it to some kind of fulfilment through her untiring efforts on my behalf. I am more grateful to her than it would be safe to admit here. My son and daughter-in-law, despite the great physical distance that separates us, have always been very supportive: they visit us as often as their busy work schedules permit, and they are constantly in touch to find out my condition. I am happy to have such a family. I was fortunate to be the patient of two expert oncologists: Dr.Chandra in Kolkata and Dr.Charu Trivedi in the U.S. Their invariable kindness and cheerful response to my endless questions, made life easier.
The future beckons
Indications are that we CML patients have a promising future. A complete cure, which would of course be a ‘consummation devoutly to be wished for’, may not be in the offing but I would be quite content if Dr.Drucker and Co. one day declare that CML is another chronic disease like diabetes and hypertension…