Just had my latest blood counts and my WBC is down to 1.4, I have been on 400g of imatinib for 6 weeks or so, doctors are suggesting a lower dose 300g if no improvement of next few weeks...so obviously they and I are concerned about the low number, but is it a sign of something else, or is it just a typical reaction to the drug?
how worried should I be?
also is there any suggestions as to how to help keep the numbers up with diet or lifestlye changes?
thoughts and ideas?
Hi Rob
Low counts on imatinib are a fairly common occurrence. A dose reduction is also very common. I could not tolerate more than 300mg Imatinib due to low counts and with the help of GCSF [growth colony stimulating factor] injections I manager to get into CCR. GCSF is widely used to help patients' low wbc cope with imatinib. Where are you being treated ?
I would discuss GCSF with your doctor before considering the dose reduction. It would be best to stay on 400mg and have regular GCSF injections to help your wbc. Having said that many patients do well on a reduced dose also. Definitely something to run past your doctor.
Just had a look at your blog. Muscle cramps are a well recognised side effect of imatinib as are the tiredness and aches and pains. You can take a good magnesium/calcium supplement to help your cramps or if that doesn't work ask your doctor for some quinine tablets, this has helped many.
I also see that you have been to Hammersmith which is excellent and before Royal Berks decide what to do about the low counts may be you should make another Hammersmith appt as they are highly experienced in dealing with patients with low counts on imatinib.
Best wishes and good luck
Elizabeth
Hi Rob, although I cant give any words on your low WBC, Ive read your Blog with interest as it would appear that our circumstances are very much alike.
Just wondered if I could get in touch with you in some way, maybe by phone, or if you were un-easy about that then some other way, as I think it would be interesting to compare notes and see how your plan of attack compares to mine. Not sure how old you are and if theres a difference there. Im 30 by the way and was diagnosed on the 24th of February 2007.
My email address is ....... If you would get in touch I would appreciate it.
Cheers.
Bram.
Hi Elizabeth - thanks for the response, GCSF is a new one one to me , so will do a trawl to find out some more info on it. Your post, plus a few days reflection have made me not as down as I was about the low count, knowing it is a typical reaction, and there are ways to move forward is good news.
Muscle cramps, thanks for this, although I have suffereed from cramps for ages i was confident in making to what seemeed to me a logical connection with the Imatinib, strange the doctors at the Royal Berks dismissed this.
Currently being treated jointly by the Royal Berks and the Hammersmith where I will next visit in early June. If things don't improve I will have a conversation with them.
thanks again for your words
