TDM-1 side effects

[phil]

my wife Lorraine is doing great on t dm-1 , 26 months, ned over a yr. sounds like you are having low platelets, like her. red rash, bloody noses, etc. she reduced to 3.0 back in 2010. she was in an eap " trial " , now in an extension study . last 3 doses she and others w/ low plats have been granted an "exception " , if her plats are below 75,000 , she can wait a week or two , to get them over 75,000. went 4 weeks, then 5 weeks , then 4 weeks, and plats have risen some already. ( normal is 150,000 + ). we hope to go to every 4 weeks after appr. Lorraine follows a diet of some top quality , bone-in red meat, greens, berries , nuts, pineapple. sharks liver oil , chlorophyll from health food store. 1000mg folic acid. works well with red counts which may give u more energy. works ok w/ plats. when L. gets close to 100,000 plats, those red " rashes ' or capllaries fade some. ask your doc what your plats have been. they clot blood. think about telling your story . PM me to tell it , its a travesty that this drug hasn't been appr. costs so many lives. God Bless , good luck.

[Eva Sophia]

Phil, my platelet count has actually remained normal - it was 195k last check. But when they did the advanced blood work, they found out it wasn't clotting correctly...so while there are a good number of them, they appear damaged / not working right - and so therefore my clotting is compromised.

I'm in the Marianne study so I can only skip so many sessions. Right now, I've been getting treated every other time, which is the minimum to stay in the study. And they just lowered my dose to 3.0.

I heard that I'm the last patient still in the study at my site, so I'm glad to hear there are other with 2+ years on the drug. With the weird side effects with my blood and the fatigue they say they can't explain (because my counts are not very low), it makes me worried that we don't really know what going on with me.

I would be happy to "tell my story" - just not really sure where the best place to do so is.

I would also be happy to learn more about your wife's story.