This could not be happening to me

Kamala Devi Jain – Lalitpur, 2008 It came as a big shock.

Even in my remotest dreams  I had never imagined that I , Kamala Jain , a happy and contented woman , devoted to my dear , caring husband, would become a Blood Cancer Patient. Every one only knew me as the happy and healthy (and according to my husband, beautiful) wife of Dr Jain, my loving partner of fifty golden years. Nobody in my family had a history of a disease of this kind.

1993 – It was almost fifteen years ago when all of a sudden and without any warning there was an onset of an unexplained feeling of weakness and body ache. Painkillers and tonics seemed to be of no help and I kept feeling weaker and more and more exhausted. There was also no relief from the pain either. My husband was very concerned and decided to seek the opinion of his colleague and friend Dr Raj Kumar Jain MD. After hearing my case history he advised some blood tests. The reports showed a WBC count of 1, 62,000 and the diagnosis was given as CML!! I had Blood Cancer and I could not believe it. My family and household were in a state of shock and fear. Everyone was in tears and ruing my bad luck. By then it was early 1994 and my husband decided to take another opinion from the laboratories in Jhansi the biggest city nearby but their diagnosis too was the same – CML. In Jhansi they advised not to wait any more but asked us to seek expert help by going for a consultation at Mumbai’s Tata Memorial Hospital.

I was afraid and confused about what life had in store for me.

It was in February of that year, along with my father and husband that I came to Mumbai. Unfortunately it was a Saturday and we were told that the hospital was closed that day. Having come all the way we were very dejected to be told that nothing could be done for two days. My husband decided to be a little persistent and asked around. His efforts did not go unrewarded. We were told that Dr R Gopal, one of the senior Medical Oncologists was indeed at the hospital that day and we somehow managed to see him. One look at his kind face made me break into sobs and I poured out my full story. He wanted some more blood investigations to be done and eventually put me on Hydrea capsules of 500mg. I was to take three tablets a day and come back to see him after three months. So I started my treatment for cancer and slowly my WBC counts began to come down. But when I went for follow ups the counts were not still satisfactory and Dr Gopal decided to change the treatment.  In August 2004 I was put on Interferon injections. For almost four years then, every Monday, Wednesday and Friday I had to take these injections. During this time my blood counts seemed to be under control and my three monthly visits to Tata hospital continued. It became a routine, my injections, the side effects of Interferon and these trips to Mumbai.  How my whole life could change in this manner was something I could never have believed. In January 1998 the counts rose once again and my therapy changed to Interferon and Hydrea. I took more than 17 months of this combined therapy but the results were never totally satisfactory. We decided to meet Dr Suresh Advani, the best cancer specialist in the country and went for an appointment with him at Hinduja Hospital, also in Mumbai. Upon his advice, for about six months I was put on a combination therapy of Interferon and chemotherapy – a drug in a tablet form called Thioguanine.  Eventually by the end of 1999 I came back to just Hydrea capsules 500mg three times a day – back to where I had begun in 1994. The blood counts would sometimes be under control and sometimes not. Over the next few months, gradually it was understood that Hydrea was no longer working. By this time some changes were happening at Tata Hospital too. Dr Gopal had left and my case was being managed by Dr Sudeep Gupta. We had also seen Dr Tapan Saikia and both of them spoke to us about a new medication for CML that had come into the market – Glivec.

Novartis was donating it free to people who could not buy it.

The cost of this drug was above our means so with great expectations my husband went with an application and all papers to their office at Churchgate. He was supposed to meet a Mrs Venkatesh who would help us in this matter. But the day he went, he found that she was not there and came away leaving our request for her to work on when she returned from her trip. We were so happy to hear from her immediately afterwards and to know that our papers were processed and we could collect the first three- month supply. It was the best news we had heard in many years. From November 2002 to September 2008 I have been on this magic medicine, alive and well on 600mg every day. Even if I die today I want to say I will not have any sorrow or regret in my heart for it is a miracle that I have lived with cancer for sixteen years.

This miracle was possible because of Novartis and the love we got from Viji Madam and her team.

Above all I am grateful to my husband Dr Amar Chand Jain who has cared for me with love and not left any stone unturned to see that I got the best care and had the greatest comfort. Then I want to express my heartfelt gratitude to all the wonderful doctors who looked after me, Dr Gopal, Dr Advani, Dr Saikia and Dr Gupta. These great doctors have worked so hard to keep me alive. Finally and most importantly, my thanks to Novartis and GIPAP because of whom I have been getting the medicine all these years and to the team at The Max Foundation Office in Mumbai who have  treated us like their family , their own family. My prayers that they may always be blessed so that they can continue the good work that they are doing through GIPAP and this programme.