Team In Training Update/Warfarin, Etc.

[Guest guest]

Hi all,

For those of you who are interested, I just wanted to let you know that

the Leukemia Society's Team in Training groups (from across the US) that

ran in the Anchorage marathon and half-marathon last week raised more

than $4 million, collectively, for the LLS! That money goes to patient

services and treatment research.

I personally ran the half-marathon and am happy with how I did, all

things considered. I got a nasty case of food poisoning right after I

arrived in Alaska (I'm thinking from the airplane deli sandwich), but

thankfully I had two days before the race to recover. So although I

wasn't in best form, I did have a good time. Anyone else here who was in

Alaska for the TNT races?

I'm doing OK overall. My PCR remains positive, but I can live with that.

Unfortunately, I've had to switch to daily heparin injections and stop

taking the warfarin pill because my INR refused to stabilize -- it was

just all over the place. So, I'm back to daily jabs, sort of like my old

interferon days. :-) My stomach is a mass of bruises thanks to the

anticoagulants, but at least they're not painful. I'd be interested in

hearing how others taking both Gleevec and warfarin (Coumadin) are doing

(Zavie -- I know you're doing OK). The good doctors at OHSU told me a

few weeks back that the interaction between these two drugs can cause

unpredictable swings in INR, and that's indeed what was happening to me,

and that can be a bit dangerous. The question that remains to be

answered is whether the warfarin changes the blood levels of Gleevec.

Apparently that is a possibility, but without monitoring of Gleevec

blood levels, we won't know for sure.

Novartis has become very interested in my case because of my unexplained

deep vein thrombosis and pulmonary emboli and managed to track me down

both by phone and email. They've requested a copy of my records and to

speak to my current hematologist. I did talk to a pharmacist and a

safety specialist at Novartis. They told me that they have had reports

of thrombosis in Gleevec patients, but they claimed that they did not

keep statistics on how many incidents there have been (which I find hard

to believe!). The current Gleevec prescribing information has listed

DVT/PE as a possible but rare adverse event since it was updated in

2004.

I'm sorry that I don't keep in better touch with you all, but I do read

your emails and hold you all in my thoughts.

G.

www.cmlsupport.com

www.upstairswindow.org