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Not great results?

Dear All

Am feeling a bit down about the whole CML thing again today - I am now a year down the line with regards to my treatment on Glivec, and have just found out that my PCR is still around 2%. This is not the magic 3 log reduction I was hoping for (infact it is only a 1 log reduction) - and on top of this my WBC and neutrophil counts are constantly depressed (2.7 and 0.8 on Tues) which means GCSF injections and infections (just started another round of antibiotics). I would love to know if anyone has had a similar response to Glivec.....and if it has eventually worked??!! We are now discussing higher doses (600mg as opposed to the 400mg I am on at the moment) but as far as I can see this is only going to worsen the blood count scenario.......A number of people that I have come to know are doing really well at the moment, and many have reached CCR or better which I am very pleased about - but I can't help feeling miserable and wishing I was one of them!!! Has anyone been here too??

Hi
I have had a constant battle with Glivec since the beginning and was never able to tolerate more than 300mg with the help of GCSF. I did eventually get down to a very low PCR 0.014 [if my memory serves me correctly] and kept this PCR. Unfortunately for me I acquired another leukaemia and had to abandon Glivec for more harsh chemotherapy etc... but Glivec worked well on my CML despite platelet problems and constant use of GCSF.
Your PCR being 2 is in fact pretty good and a PCR of 2 at Hammersmith puts you just above the 0PH - you must be marginally PH+ but very low. So do not despair as this is not a bad result. Some patients have to wait 2 + years to even see a decrease in their PH.
One tends to get very impatient for results but slowly does it and eventually you will get your zeros.
Take Care.
Elizabeth