I sincerely apoligise for starting a new thread when there are others similar but in my defence, I have searched and not found one thats the same.
Prior to going to the hospital today for my 2 monthly check up I was cock-a-hoop as my last PCR was 0.12% which was my lowest yet after 2 years on Glivec, even though I know it could have been better.
Today I had the usual blood tests and my white count was 1.9 and the 'fill in' consultant said that if this does not raise over the next 2 months then would think about reducing the dose of Glivec.
I hate to sound like I am moaning when I am one of the lucky ones that doesnt get the side effects of Glivec when I know a lot of you suffer terribly, but I am just concerned about what will happen to my PCR results.
I started to air this concern but the consultant said "We treat the patient and not the disease" and said It would be no good if I am getting struck down with colds all of the time, which I appreciate.
Any thoughts would be much appreciated.
Your such a good crowd and wish I had more to advice to input to help other people. Thanks.
Bram.
You are here
Lower Glivec dose suggested as white count is too low.
I have been in your situation,but I was able to self inject GCSF to keep my white cell count up,best advice if your not already being treated at a specialist CML clinic such as the Hammersmith or Kings
get refered to one,You have to be pushy to get the best treatment,I take it the you are getting weekly blood tests,whats your neutrophil count?
Early days thought you might bounce back on your own,its good your still on Glivec and with no side effects,And theres second generation drugs to move onto if the Glivec stops working so please dont over worry,
Michael
My wife was in a very similar situation to you about 3 years ago. She was not responding to Glivec as well as we had hoped and her white cell count started to fall. She was attending our local clinic and her dose was reduced from 400mg to 300mg. Fortunately, she was also offered a referal to the specialist clinic in Birmingham. They recommended increasing the dose to 600mg to get as good a response as possible and monitoring closely so that any further fall in the white cells could be "dealt with". As it happened, the white count recovered and her response to Glivec improved so the dose could eventually be reduced to 400mg again. The response continued to improve and she has now achieved the desired 4 log reduction. She still makes regular trips to Birmingham but we feel the extra journey is worthwhile to attend a specialist clinic.
Hi Bram,
Listen to Michael. You really don't want to be treated by a 'fill-in' consultant who knows very little about treating CML. Get yourself to someone who has lots of experience in treating CML patients.
The red flag went up with this consultant when he started using scare tactics (and not scientific investigation) by threatening to lower you Gleevec dose. One should not lower the Gleevec dose below 400 mg without doing serum level testing. You can become resistant to Gleevec by taking a suboptimal dose.
Zavie