My experience with CML

Vinay Kumar , Patna 2009

I come from a modest, middle class family of farmers. It was Sunday morning, 14th January 2007 and “Makar Sankranti” was being celebrated. On that day we have curd, churma, til laddoos and other delicacies  made at home. I was 20-25kms away from my home in an institute which gave extra private coaching to students. I was to appear for my tenth standard board exams in March that year. Since I was prone to a cold and cough, I used to avoid curd but as it was a festival I took the liberty and had it. What I feared happened.  I got a bad attack of cold and cough and intermittently also started running a fever. It did not deter me from studying for my board exams. I consulted the visiting doctor at the institute who prescribed a treatment for me .I started taking the medicines but they had no effect on me and I felt weaker day by day. I also got fever every evening, which would last till late night. My whole body trembled with pain and I also started getting abdominal cramps. I felt like going to the toilet every fifteen minutes. I went through this for about ten days. As my exams were fast approaching, I called up my mother and my brother and told them about my failing health and my desire to go back home to them. Subsequently I went back to my native village. On 23rd Jan, 2007, my brother took me to see Dr M P Choudhary, who was the Head of Primary Health Centre, Bakhri, Begusarai (Bihar).After a preliminary check, he asked me to go in for some blood investigations. He suspected that I had malaria. But the test proved negative. I was prescribed some tablets and injections. Different medicines started having different side effects on me. My skin started getting pigmented too and I was also getting weaker by the day. I used to see the anxious faces of my family members but I did not get affected.
My brother took me to all the best physicians, in the hope that I would get cured.

In that order, I went to see Dr K K Singh (M.D,D.T.M.&H.,D.T.C.D.) on 28th Jan 2007.I had to take a bone marrow test as he suspected CML. The investigation itself brought a lot of misery to my family members as on one hand I was suspected to have this life threatening disease and on the other hand my exams were fast approaching. To investigate further, on 5th Feb 2007, I took an appointment with Dr Rajiv Ranjan Prasad of  I G I M S Patna. After the initial check up, the doctor advised some blood investigations and a bone marrow test. I did the necessary investigations/tests and the next day the reports again showed CML. The doctor immediately put me on Hydrea and other medication and referred me to Dr Ashish Bakshi- Consultant and Medical Oncologist at TMH Mumbai. I was blissfully unaware of my diagnosis, but I saw pain and misery in the eyes of my well wishers who were aware of it. .All my relatives, friends and well wishers who were aware of my life threatening disease thought my end was near and would call me and enquire about my health. I would shrug off their questions and tell them that I was fine. Two or three days after my return from Patna, I went back to my institute, as my exams were just around the corner. The short stay with my parents and family members gave me a temporary but good feeling.

Glivec worked like magic on me in the first month itself.

My CBSE Board exams were from 2nd March till 27th March 2007.I engrossed myself in studies but I felt empty. While I was busy with my exams, my brother went to I G I M S Patna, got a railway concession, and made my travel plans to Mumbai. My exams were over and on 29th March at 8.30 a.m I boarded the Gauhati L T T Express for Mumbai along with my brother .We reached Mumbai on 31st March at 9 a.m.We stayed with one of my cousins who was working with BARC. We visited THH on 2nd April and after doing all the investigations, the fact that I had CML Chronic stage became very clear. I was already on Hydrea 500mg.I found out that every week one representative of Max Foundation would visit TMH and after completing certain formalities they gave GLIVEC free of charge to financially needy patients. Glivec was a magic pill and I could safely call it the “Sanjeevani Herb.” Sanjeevani was the herb mentioned in the Ramayana. Hanuman had fetched it for Laxman. The patients who got enrolled under GIPAP got GLIVEC free of cost. I met Ayeshah Madam and after finishing certain formalities got enrolled into GIPAP. On 4th April 2007 I got my first stock of Glivec 400mg. I got this through the effort of the Max foundation and of course Novartis who donated the same. All my blood counts came to normal. Along with Glivec, I started going for a walk every morning and evening and also did yoga for half an hour daily. After three months, my skin colour started changing which was attributed as a side effect of the drug by Dr Kumar Prabash medical Oncologist TMH. Gradually I started feeling better but I had to see my physician every month who gave me valuable suggestions.

I completed my Xth and XIIth standard.

I now want to enroll myself into an Engineering College. I owe all this to Madam Viji, Ayeshah,  Ashok, Novartis, Max Foundation and Dr Kumar who have helped me  achieve a goal in my life .I am indebted to all my friends at Max Foundation who helped me in my struggle against CML and I know I will emerge victorious. Thank you.

Translated from Hindi by Vidya S Tahilramani