My Experience – Such a Long Journey

Binu Mathew – Bangalore, October 2007

From my childhood I had a great dream of becoming an Engineer. As I was pursuing my dream after securing  a seat in Engineering suddenly I was diagnosed with Chronic Myeloid Leukaemia (CML). This was when I  was in my 3rd yr of B.E in the year 1991. I never had any problematic symptoms but realized that my stomach was getting harder day by day. So I just went for a casual check-up to the nearest health centre. After thorough blood tests and an x-ray the doctors concluded that I was suffering from CML. This came as a rude shock to me as I was at the peak of my youth and in pursuit of my dream career. I could see that all my dreams started crumbling down one by one as I realized the intensity of my diagnosis and the very few options available in the medical world during those periods.

At that time CML was supposed to be a very dreaded disease as not much of advancement in the medical field had taken place. I had almost started preparing myself for the last phase of my life as I did not have much hope. Moreover, I was living in one of the remote areas of Maharashtra Chandrapur where medical help for CML was not available. Therefore the doctors recommended me to be taken to Tata Memorial Hospital in Mumbai (TMH). I got registered in TMH and started the treatment. My Doctor put me on Hydrea & comforted me that I was detected at an early stage. However I was not aware of stages of Cancer or  what CML meant and also was not very keen to speak about this to anyone. Every three months I used to visit TMH and continue my regular checkups. Initially I was on 1000 mg per day and later based on the counts I was prescribed an increased dose of 2000 mg.

With Hydrea my counts started stabilizing and the body was responding pretty well to the drug. In due course I continued my studies and secured my Engineering Degree in First Class. That was one of my greatest dreams come true as after diagnosis of CML I never even expected to reach the point of completion of my Engineering degree. It was really God's grace in my life of fulfilling the greatest desire of my life. Many times I have asked God why I had to go through all this pain in my life & just got one assurance from Him “My grace is sufficient for you, for My strength is made perfect in weakness” – Bible As I finished Engineering the dreams which had been shattered earlier due to the CML diagnosis started once again taking shape but with a new direction. During those days all the prestigious jobs were in the Government sector and I knew very well that I could not get a job there due to my medical condition.
However determined to work I set out to Delhi in search of a job. After three months of multiple interviews in various organizations I finally secured a job in an IT company. Those were the days when India had started getting a foothold on the software industry and many private sectors started getting into software development. This opened an avenue for me to be placed in a good job without facing the trauma of rejection on the health grounds. By this time I realized that my CML was no more a deterrent in leading a perfectly normal life. I was leading as much of a normal life as any other person except for taking 2000 mg of Hydrea every night. I had some side effects of the treatment as my skin started becoming dark, I lost my appetite, and had nausea all the time but I was ready to accept all of this as long as I could live & do my day to day activities without depending on any one.

During the course of my stay in Delhi one day I decided to discontinue Hydrea as I was getting really upset by the continued side effects. Without informing anyone I stopped the intake of medicine. This continued for almost a year. In this period I never went for a check up also. During this period I came to know about a Naturopathy treatment in Kerala and thought of trying that for the cure. I took the Naturopathy treatment for twenty days and at the end went for a blood check up to see if there was any change, to my disappointment the counts had shot past 6 lakhs. Even the Naturopathy doctor was surprised to see the results. So with not much success again I came back to Delhi and resumed my job. During this time I had a severe attack of cough. After trying all the medicine it was not subsiding. Then I started loosing my strength & was bedridden for almost 3 months. My health was deteriorating day by day as I was not taking any medication too. All I was doing was sleeping the whole day and just getting up for the food . Even this I could not manage for more than short periods as the body was very weak. Finally my parents were forced to
take me to TMH again for medical advice. After a check up the doctor again put me back on Hydrea and blasted me for not taking the medicine for almost one 1 year. My doctor commented that it was a miracle that I was alive after stopping the medicine and also pointed out the fact that I could have damaged my kidney due to the lack of medication.

In a month's time I started regaining strength and coming closer to a normal life. Then I decided to pursue my career further and went to Bangalore in search of a better job. As soon as I landed in Bangalore in the year 1994 the climate, scenic beauty & the nature fascinated and welcomed me so much that I knew that this place is going to be a new era of my life. Again I started my professional career in the Garden City after a gap of six months. It seemed as if I was rejuvenated in life and with a new purpose decided to once again focus on life in spite of all the setbacks.

I normally used to go to Mumbai once in six months to meet my doctor at TMH and take her advice and a standard check up. During one of the consultations I discussed with my Doctor the possibility of marriage. She advised that as long as the person I wanted to marry was aware of my diagnosis and ready to accept me with my CML I could go ahead and get married. Then I enquired about my expected life span and she said that there is no specific time frame or standard answer that be given to such a question asthere are some people who have survived CML for good number of years.

There were multiple proposals coming for me without the knowledge of my diagnosis. I had decided that I would like to speak out about my health condition to the prospective bride before getting married to her. So when this proposal came from Sheeba's parents in June 2000 and I went to meet her, I took time to get her acquainted with my condition and its implications. She asked for three days time before making a decision. After those three days of prayer she told her parents that she would like to get married to me.

This was something which really surprised me that in spite of all the setbacks of CML in my life there was nothing which I was deprived of in my life. Also this gave me a lot of confidence in life and a new dimension. So finally we got married on 17th June 2000 and then onwards we are living a purposeful family life.

All these years I was continuing on Hydrea and in the year 2001 my health deteriorated. I consulted the local doctors in Bangalore and after the blood test they informed that my condition is not very appreciable. I again rushed to Mumbai to consult my doctor. After thorough examination she concluded that after 11 years of CML I was getting into an accelerated phase. She explained to me that I was lucky enough to be in CML phase for such a long time. My doctor also advised me to have a local consulting doctor as my situation seemed to be critical. The other suggestion of my doctor was to try to enrol for Glivec trials. As I gathered information on the trials I came to know that it had already got over. The other option was to import Glivec.

When I checked the possibility of importing the drugs I discovered that it is going to cost me almost Rs. 1,50,000.00 per month, which was simply unaffordable. Then I was discouraged that in spite of the availability of a good drug due to financial constraint I was not able to get the advantage of the same. When things seemed to be out of my control I just passed on all my burden and thoughts over to God and waited for Him to perform a miracle for me. One of the verses in Bible kept encouraging me “And we know that all things work together for good to those who love God, to those who are the called according to His purpose”

As my TMH doctor had advised me for a local doctor in Bangalore, as per her advice I got in touch with Dr.Shekhar Patil of Bangalore Institute of Oncology (BIO). Under his treatment I was still continuing with Hydrea with not much of improvement in my health. I used to be off and on from my work due to frequent spells of weakness in my body. After 3 months of consultation in BIO one day when I went for my regular consultation with Dr. Shekhar Patil he gave me great news that there is a Foundation which is helping people who cannot afford the drug to get Glivec through a donation programme. Immediately I collected the details of The Max Foundation from him and he gave me Viji's (Amma) contact number. I called her to check out the details of Glivec and the first conversation with her itself gave me such comfort and confidence that something great is going to happen. She told me that Novartis has put in place a wonderful donation programme that is providing the drug at no cost. As required by the programme guidelines explained to me by The Max Foundation I furnished all the personal details. To my surprise within less than a fortnight I got three boxes of Glivec which could take care of my medication for three months. When I received these first three boxes in my hand I really could not believe in my life that such miracles also can happen. Though that time I did not have much information about Novartis or The Max Foundation but certainly I knew one thing that whoever is behind this donation programme is doing a great thing for the cause of needy CML patients. In three months the people around me could feel a drastic change in terms of my health.

I could feel a total rejuvenation of my body and mind. As my appetite started improving there was better good intake of food stuffs. Gradually I could see that all the side effects of Hydrea which I had faced for those eleven long years started getting neutralized. In no uncertain terms I could really feel the magic of wonder drug working in a holistic way in my life and personality. Suddenly I could see a fresh ray of confidence and hope in me as well as my family's life. My life started taking a new perspective and a new meaning.

With Amma's motivation and encouragement we formed the Friends of Max group in Bangalore during 2001. That is where a strong urge came in all the CML survivors who were receiving Glivec free of cost to give back to the community. As a team we started visiting the Cancer Centres like the BIO and KidwaiInstitute and Karunashraya the hospice. Our primary objective was to encourage the patients not to loose heart and extend to them as much of emotional support for them and their families. On June 22nd this year we adopted a baby girl of nine months old and named her Angeline. She is a new ray of hope in our lives and has made our family complete. After this I do not have any more dreams left in my life. When I saw death from a very close distance in the year 1991 l could have never dreamt that I could have such a fulfilling life of almost 16 years after being detected with CML. I just have no words to describe the blessings of God in my life.

“When life gives a rude shock in some way there is another door opened for you to give enough hope in the rough weather.”

My family and I are really grateful to Novartis and The Max Foundation and their team which has been a ray of hope in many CML patients' life worldwide. Let me acknowledge the fact that your ceaseless efforts to deliver the Glivec boxes in each and every CML patient's hands month after month without fail is a commendable job which cannot be thanked with just mere words!!!

With Viji's constant motivation I am well convinced that we are going to become a force which can do wonders for CML patients and of course needless to say the Annual All India meet has become an event which we look forward to as something that will bring closer all the survivors across the country. A precious chance to cherish a dream together.

May God bless the Novartis and The Max Foundation family and make you a channel of blessings for many CML survivors & touch many lives.