Hi, I am Kate (a 36 year old Brit who now lives in Australia.)
I was diagnosed in September with a very high white cell count and after initial treatment with Hydroxyurea and Allopurinol started on a trial which involves taking 600mg Glivec and, if I become resistant / don't respond well, Nilotinib.
When I first started on the Glivec I was so pleased as I had very few side effects and my white cells were coming down nicely. But then I started getting bruising all over my legs (worse than before dx) and blood tests showed that my platelet count plummeted to 12. My doctor took me off the Glivec and after 3 weeks off it all my cell counts returned to normal and the bruises have disappeared (just in time for summer here!)
I started back on Glivec (600mg) on a Friday morning and by this Tuesday I was suffering terrible pain in my legs. I had read that Glivec can cause muscle cramps etc. but this was unbearable and long lasting. I could hardly walk and had to take the day off work. I was told to take Panadol (have read conflicting advice about this too) and luckily had a routine appointment with my doctor at the hospital on the Thursday. He has taken me off the Glivec again and given me some Volateren (a NSAID) as I am in so much pain (especially morning and evening.)
Further tests on my blood show inflammatory markers, signs of arthritis but he doesn't seem to see this is a long term thing and mentioned that it could be a result of the cell death? They seem to be considering putting me back on Glivec at 400mg at some point.
I am beginning to dread going back on the Glivec as I have never felt pain like this (and this is someone who has given birth and had a bone marrow biopsy!!)
I have always found this site very useful and positive and my friends commented on what a positive attitude I had to this whole situation. I went back to work after 2 weeks etc. (I work part time) but I am concerned that I might have been a bit blinkered. I thought "I'll go on Glivec and it will all be plain sailing from there" but this feels like a bit of a roller coaster and it is affecting my ability to look after my very active 20 month old little boy.
Has anybody else on the forum had such severe pain or a diagnosis of arthritis as a result of CML or Glivec? Any suggestions on pain relief (baths seem to help.) Also I am wondering if 600mg is quite a high dosage for someone like me (5"3 and 52 kg.) I took second opinion advice on the trial and was told to go for it given my high white cell count.
Also a bit worried about the possibility of Nilotinib because it seems to have to be taken very stringently (time before food etc.) and not sure if I could drink alcohol with it.
Apologies for such a long post!
Kate