I have now got the reeferal for a second opinion/shared care at a CML centre of excellence, which I asked for.As you may remember I was on a reduced dose of Glivec for 8 weeks, reduced to 200mg from 400mg. The reason my doctor reduced the dose was because of my almost intolerable side efects. I now know this is below the recommended dose level. Having had excellent advice from this site (thanks Sandy)I began to question my treatment and find out more. It has been 1 year since dx.
My two hospitals are now comminicating! As I am due a bone marrow biopsy (one hospital forgot this & I had to remind them!) The prof has asked for a Q-pcr biopsy. Does anyone know what the "Q" stands for? I shall have to wait the resuts of this befor I can see him, so another few weeks of awfull side effects as I am back on 4oomg, which is what I should be on. I put my faith in the Drs at my local hospital & feel very sad that I have had to question them.
Perhaps they will change my drug for Dasatinib or Nalotinib. I know that these both have different side effects but cant find out what they might be..can anyone fill me in here please? I hope they might be more managable. I know the PCT in this area are reluctant to fund it and also I dont think its NICE approved in this area either.
Thanks for your time in reading my post kind regards to you all.