I was started on Glivec (Imatinib Mesylate) in less than a month after I was diagnosed and that was considered fast. I was on Hydroxyurea only for about 3 weeks before Glivec drastically reduced and normalized my white cell count in a matter of months. I know a few patient that has to wait many months before their application for Glivec through the GIPAP programme being approved. Thanks to the hospital that supported my medicine supply. For your information, an average cost for a person to take a standard dose of Glivec is about RM8000 per month and this is definitely not affordable to most Malaysian with an average income. That is why we are so thankful to Novartis for being supportive through the GIPAP programme.
My first repeated bone marrow test was done after about 6 months taking Glivec. It was a joyful time for me when my hematologist told me that the remaining positive chromosome of CML cell was down to 33%. He would think that I will do well and he expected me to be in complete remission in a year. But good news never last. I had another repeated bone marrow test after one year of treatment and the result had upset me and my hematologist. He advised me to have a mutation analysis and PCR test in Singapore as to identify what is the problem and to confirm the earlier result. So I went to Singapore a couple of time and it shown that I had a mutation that could explained why the response is getting slower.
That means that I am left with other option which is Bone Marrow Transplant. Through a latest development of newer drug trial, I was explained that I could be one of the candidate but having to know that I have a mutation i.e. my gene could be 'unstable', I am at risk to develop another mutation with this new drug after a period of time and when it happen it could be an endless problem.
The other reason for not to delay BMT anymore is because I am still within the "golden time" i.e still in less than 18 months after diagnosis and having said that I am a good candidate (young recipient and donor) I should go for it.
Scared of transplant? Obviously I am scared especially after I knew that all the complications associated with it. I read and read and the more I read, the more I am getting scared. I stopped reading now. May be I should listen more to my hematologist. I should listen more on other people that always tell me its going to be okay.
The date is yet to be confirmed but its going to be in August 2007. Definitely I ll be taking a career leave for about a year and sadly I could not go to San Diego for my fellowship training which I have already confirmed the place in July 2008. Anyway, I am all out to get fully recovered so I could go back to my family, friends and career.
As for today, I am still working. I have a chance to go for 'umrah' last month and alhamdulillah I got to pray a lot and hope God will give me the strength to go through the BMT and out from it sooner.