I wanted to share with everyone my status at 8 months on Gleevec. It has been a tough time, mostly adjusting to the knowledge that I have leukemia and how to deal with the side effects of treatment. I am doing very well on treatment and over time I am adjusting to my new normal. My side effects are manageable, sometimes more bothersome than others, but overall not too bad. My biggest complaint is probably fatigue. I also have muscle aches and I get frequent stomach aches. I don't really have the intestinal problems most people have (very grateful), I tend to just get pain up in the belly, but it usually passes after a while and is usually tied to something I ate, or didn't eat; I'm still trying to get my diet right. I have found that exercise helps the leg pains a lot and does seem to help with the energy level throughout the day, but I am definitely not at the energy level I was before I started taking Gleevec. Recently I have developed a couple of other issues that may or may not be related to treatment but they seem to be transient and so far doctors do not see anything to be worried about. Specifically I have been having some lightheadedness, which may or may not have something to do with fluid building up in my inner ear and I have had some erratic heart beats lately. I've seen a cardiologist who said things looks okay and it may be stress related. I am going for additional tests to rule out anything else. Despite these issues, I still manage to work full time, go to school, and spend time with my kids. By the end of the day I feel it, but it lets me know I got the most out of the day.
I am still new to this but I have learned a lot over the last 8 months and I would like to express my gratitude to everyone on this board who participates and makes this a community that we can all come to and participate in with people who understand what we are going through. The advice from the veterans is invaluable and I know I appreciate it and I am certain everyone else does too, so thank you for being there. In that tradition, I would like to share where I am treatment wise as someone who is still somewhat newly diagnosed. There has been a lot of talk about Gleevec and the newer drugs. I think we are very fortunate to have options and that all the drugs appear to be valuable weapons for us to utilize in this battle we are fighting. The newer drugs appear to be very good, but I think my results show that Gleevec is still a very effective option. As my doctor says, "Gleevec is the work horse".
First some background information:
38 Year old male first diagnosed June 2010 during my annual physical. I presented with no symptoms but a routine CBC showed elevated WBC at 35. A repeat of the test a week later showed WBC had risen to 55K. I was officially diagnosed by my first oncologist on 6/23/2010. I then went for a second opinion and decided to be treated by a CML specialist beginning on 7/7/2010. For this reason, I have excluded the 6/23/2010 PCR since it was done at a different lab. I recently asked my doctor if she did a Sokal score for me during her initial evaluation. She checked and said she could not technically score me because I was below some of the thresholds, so she would consider my score to be very low.
I began taking Gleevec on 7/8/2010. I achieved CHR by end of August.
Karotype test in Dec showed I had achieved CCyR in five months (even though my FISH still showed a few positive cells, my doctor confirmed that the negative karotype was sufficient to achieve that milestone). Some might even argue that my FISH in Oct at 5% positive on a 500 cell sample could be construed as acheiving CCyR at 3 months. Since no bone marrow was done at that time, I can't say for certain. In March of 2010 I finally got my 100% negative FISH and a very nice surprise when my PCR dropped to .0081 from 1.2 at diagnosis (note: my lab is not on international scale).
So all in all I am very happy with my results. I know cancer is tricky and can catch you off guard when it appears you are doing well, but I try not to dwell on things that may never come. For now, I am doing well and the odds are in my favor, so I will focus on that and just keep trying each day to adjust to life with CML.
Here are some numbers for anyone who is interested. Once again thanks to everyone for being there. I hope you are all doing well and your treatment is coming along and I join you all in hoping that one day they will find a cure for this disease. But even if they don't, I will take what I can get and try to make the most of it.
Best wishes to all.......
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