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800mgs!!!!

Hi All

I havent posted for a while but i've been checking up on you all. I've been on 800mgs Glivec now since Oct. Other than side effects and having to split my dose morning and night i've been doing ok. I've been getting weekly blood tests done as my blood counts were shall we say a bit of a roller coaster. Then they settled down but now the have dropped a good bit.

White blood cell dropping , haemoglobin dropping , i'm now anaemic.I'm starting to worry if the Glivec is getting too much. My GP thinks that if things continue they might reduce my dosage. That concerns me .Should i just keep on going with the Glivec route or is it time to ask about other options.. My head is all over the place.

Any advice would be good.

Elaine

Hi Elaine,

I assume you were increased to 800mg for a reason? In the US (where I am) if you have a problem with low whites or anemia with the higher dose, they give you a cell booster (like Procrit for red cells, or neupogen? for white cells) in order to keep you on the dose....this is not uncommon.

I was on 800mg for about 5 years (I am now on Sprycel) and needed a Procrit shot once a week for a long time and then gradually less frequently. The US cml specialists say that this is preferable to taking drug breaks.....and it should keep you on the higher dose.

Nancy C.

hi elaine, one way of looking at dropping white counts etc. is that it is a sign that glivec is successfully supressing ph+ white cells.
so maybe, as nancy has said, you can remain on the drug at this dose by either, waiting for a while to see if the white count stabilises, or add another drug to boost your white cell population.
as for the anaemia, it is unfortunately a side effect of this form of therapy.... sandy C ;o)