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Blood clots in my fingers

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Hi All,

I've been on 400mg Givec for just over 5 years from my CML. In the last few months my side effects have changed.

The aches and pains have increased in severity and I've been getting what look like blood clots in the veins of my fingers .... Just at the joints. The veins swell up. It's sore for a few minutes and then resolves to a dull ache. The swelling stays for a couple of days though.

Has anybody else had this? My blood counts are all fine. My GP is a little stumped and my haemotologist doesn't seem in interested unless I start bleeding from my eyes!!

Thanks,
Alan.

Alan, your symptoms in your fingers are not one I've heard before, and after 10 years on Glivec/Imatinib and being active on this site for a lot of that time I've heard of most of what it can throw at you. One thought is to ask the GP what he would do if someone who was not on imatinib presented with your symptoms - it might not be the imatinib. Another (if your consultant is up for it) is to get your plasma concentration of imatinib checked. Kings College offer this service to the NHS - not sure what the cost is. They have shown that the serum levels can differ by a factor of 10 for people on the same dose of imatinib. If your level is at the high end of the range, it may be possible to reduce your dose and maintain a therapeutic level but reduce any side effects. The link to the Kings service page is here. I don't believe this is done routinely (I only know about it by chance having worked in the field of toxicology and meeting Prof Flanagan at Kings) but if you don't ask ....

Hi Alastair,

 

Thanks for your reply. So these vein issues are probably not related to Glivec then. I'll definitely have a chat with my haematologist about serum levels in my blood. Even though I've been on Glivec for over 5 years, I still haven't achieved PCRU. I'm down to 0.01% though which everybody is happy with. But they're reluctant to reduce my dosage as my response was very very slow.

I'll follow up with my GP and try to get to the bottom of it. Thanks again for your reply.

Alan.

Hi. I'm not sure I'd say the issues with your fingers are probably not Glivec related, but I'd certainly get any alternative causes checked. Always wary of an assumption that something is due to a side effect of a drug. While you're not at PCRU you are pretty close, and it would be interesting anyway to get an idea of your glivec serum level. Good luck and let us know what happens.

 Alastair

A black finger which throbbed for about 3 weeks is how I got diagnosed 8+yrs ago as my GP asked for a full blood count. I still get a bruised finger - not always the same one - for what reason I don't know as it isn't after an injury or anything obvious. I don't go back to my doctor as it goes down after a couple of days. Have no idea whether it is connected with Imatinib or CML or what but I sympathise as it is quite painful.

 

best

Chrissie