I've been reading posts on this site for a good while, but haven't posted as there was a problem with my account set-up, which has now been sorted (Thanks Sandy)
Here's a brief account of my story:
I was diagnosed 2 years ago, fortunately very early. I've had a low WBC for >20years, and when I moved home the new GP wanted to do a test, my "normal" had been around 2.5, which 2 haematologists had investigated to no great effect - to quote one "You have fewer white cells than most people, but the ones you have must be pretty good!
The first test was high (for me) at about 9 - WBC was repeated, and was higher, so I got an appointment with a haematologist (at N Durham University Hospital, who are great), and was diagnosed almost exactly 2 years ago. PCR ABL was 99.9%, last WBC before starting Glivec (400mg) was 78. Spleen was still normal.
3 months later PCR 7.3%, but WBC 1.4, so I was briefly reduced to 200mg, but next PCR was 3.7%, so given that I have never had any real infection problems, went back to 400mg, and got to 1.9% 9 months post diagnosis, and little progress at 12 months. Then at 15 months, PCR 0.04% (Zavie, I think that scores me a club number, look forward to hearing from you.) I live with a WBC around 1.2, I carry some broad spectrum antibiotics and very seldom have to use them. The PCR has stayed around the 0.03 - 0.04% level - its more difficult than usual for them to be accurate as they have so few cells to work on!
I've been fortunate compared to many on side effects. I had a lot of muscle stiffness for the first few months, but that has worn off and I'm now fine - so that excuse for my tennis failures has gone. I've worked full time throughout in a pretty pressured job, and I do get tired, but how much of that is Glivec related is hard to say. With some fairly strict diet and exercise I managed to lose 12lb in 3 months last year, but a combination of circumstances (including a lot more business travel) has seen me put some of that back on. Again, I can't blame that on Glivec.
I think for me the why question is pretty straightforward. I had a testicular cancer 22 years ago, and had daily radiotherapy for 3 weeks.
My thanks to all those who have posted about insurance, new treatments and generally dealing with CML.
