The progression

During late 2009, Dad was under going through lot of pain and suffering. He used to get fever often. Legs had swelling. Eyes were a little impaired and couple more problems. Till this time he was being treated at Kidwai hospital, Bangalore.

This continued for couple of weeks. We consulted a doctor nearby and Dad used to take medication. We had the least knowledge that this could be because of CML. Later, probably after couple of weeks more, there was a particular test done and doctor disclosed that he had developed resistant to Imatinib and the disease had progressed to Blast Crisis stage.

CML has 3 stages
1. Acute
2. Accelerated
3. Blast Crisis

The disease had jumped from Acute to Blast Crisis. And at this stage, the disease has to be treated with a medicine called Dasatinib or Sprycel. The doctor could have given a heads up explaining about further care or further course of action. I felt we had to consult a doctor who can give personal care. 

From one of our relative we got the contact of Dr Neelesh Reddy, Oncologists, Columbia Asia Hospital, Yashwantpur. Dr Neelesh did the complete case study and explained everything and possible treatment. Dasatinib was the only medicine to control at this stage. There were side effects involved with this medicine as well. Fatigue, diarrhea,  constipation, reduction in platelets are a few.

The initial days of the medication was roller coaster with Dad's health. With constant consultation he became stable and started leading a better life.

The medicine cost was Rs 1.6 lacs per month, but with a program run by Bristol Mayers, manufacturer of  Sprycel, we could get couple month's of free medicine on purchase of one.

I would mark this as a second stage of his fight with CML.

CML - How did it start

Weight reduced dramatically : This was the first symptom. Dad noticed his weight reduced rapidly in couple of months. I don't remember or know of any other issue  that he had faced. Probably he went down 5 to 10 kgs in two months.

Dad consulted a local doctor and got primary investigations done. His platelets count had dropped a lot. Doctor was suspicious and asked for further investigations to be carried out. He then came to Bangalore and investigations revealed that the dreaded disease had chosen another victim. He was suffering from blood cancer, medically termed as CML, Chronic myelogenous leukemia.

CML is a cancer of the white blood cells. It is a form of leukemia characterized by the increased and unregulated growth of predominantly myeloid cells in the bone marrow and the accumulation of these cells in the blood. CML is a clonal bone marrow stem cell disorder in which a proliferation of mature granulocytes (neutrophils, eosinophils and basophils) and their precursors is found.

The disease was in its initial stage. Imatinib or Gleevec as termed by Novartis, was the preferred medication. During 2002-03 a month's medicine costed around Rs 10, 000/-

Later, after several years probably in 2008-09 the medicine was being distributed from free, in India. Not sure if its available for free now throughout India.

Dad had to get preliminary investigations done every month. Basically his platelets had to be in control or should not go below 1.2 lac barrier.

That's how it all started.

The Story of a Life

It was around 4 or 5 months that I had joined THBS. EE project specific training was in progress which was about to start in a week.

Doddamma calls me and asks me to visit her home. No reasons mentioned. To my surprise, mom was already at doddamma's place. Was wondering why I wasn't I aware of her visit. Her face was dull, worried, perplexed and a mixture of so many grievances. Slowly doddamma tells me Dad is admitted to Kidwai hospital. I didn't know what was going and kept calm. She asks "do you know kidwai hospital?". I straight away replied "no" for which she answers "its cancer hospital and your dad has cancer". She didn't stop for me to react continuing "don't get angry on your parents for hiding it....it was not a bad intention".

I had no immediate reaction but slowly anger started showing up as to why was it hidden from me. There wasn't much room for my anger since dad was already hospitalized and was in need of platelets.At that moment Platelets was an alien word.

Many people came forward to donate blood. Sriki, Sheshav from Thbs volunteered. Doddappa had arranged a couple. I donated for the first time. Dad recovered in couple of days and returned back to Dwr.

This is how the story revealed around 8 years ago. But it had begun probably a year or two before.

Its been a decade now that Dad has been fighting CML. 

I just finished explaining the whole trauma of a decade with one word "fighting". It doesn't do justice. As I am writing this post at 1 am, Dad is struggling to sleep due the complexities of 2 times brain stroke in a duration of one month. The brain stroke though is not related to CML but has doubled the pain and suffering for the whole family. Even Dad's brothers shed tears looking at their younger brother.

It was very unfortunate that Dad was the victim of the brutal disease. Later I saw so many victims of Cancer, of various age and at various stages of the disease that I literally felt "we are in a better position".

I don't know my exact intentions of this post. Why would somebody sketch the pain and suffering on a blog ? A psychologist may throw some light on this. My brain seems to be bitten by a stroke as well. But the posts that are going to follow will throw some light on the symptoms,  problems, medications suggested by doctor and the progress of disease.

Dad has finally asleep. Let me get my share of sleep. This post and the forth coming ones have been pending since a very long time. The wait is over!

CML aka Chronic Myelogenous Leukemia

Looking forward to compile a few posts regarding CML.Will make sure I will put some effort to give as much knowledge I have and share with you all. My only thought is to give information, which might help anybody in need. 

If you need more information, not published in any of the posts then you can contact me as well at avinash [dot] thm [at] gmail [dot] com

Not that I am an expert, but I have been with a person who has suffered this deadly disease for more than 10 years now and is still struggling with it for life.