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Clementine

Dr Furst Meeting Today

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Hello,

Today I got to listen to Dr. Furst talk about scleroderma and a lot on stem cell transplantation. It was really enlightening. Depressing, yet hopeful.

 

Sadly, I froze during the entire two hours with chills up and down my spine, one hand under my leg and the other in my husband's hand for warmth. I was so annoyed that the room would be so cold at a scleroderma meeting. Um, hello.

 

I was looking on this site at clinical trials. Where does Cellcept fall in? It's not really a proven medication so it's really a trial drug, right?

 

Thanks,

Jen

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Tangie,

 

I do think so regarding the Cellcept. Sometimes I feel like an experiment as my doctors REALLY REALLY didn't want me to go off Cellecpt and on to something affordable because she said although there are no official studies on the effectiveness of Cellcept on sclero, of the 13 sclero patients she sees who are on Cellcept, they all have been doing very, very well.

 

Did Dr. Furst say anything about Cellcept or did he just talk about stem cell transplantation?

 

He used to be at UW Medical Center in Seattle. I guess he's in CA now...bummer for me as I will have to switch from Virginia Mason to UW when I switch health insurance. But I think there are some doctors with good experience with sclero at UW so I'll be in good hands.

 

I am sorry his talk was at all depressing for you. He's supposed to be giving us hope not depression! But I guess he has to be honest...

 

Anything more you can share about what he said? Wish I could have been there.

 

Take Care,

Love ya,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Barefut,
OH, actually Dr. Furst did give hope, but not for my case in particular, LOL.
He said they've discovered a particular protein that they believe to be the culprit for sclero and then he went on to say 5-10 more years that he felt there would be a break through. He mentioned two new drugs that may be used in sclero, but I cannot remember the names and I don't want to blab a bunch that isn't accurate. Too bad my hubby isn't here because that man can remember everything.
He did not talk about Cellcept at all. He did talk a little about cyclophosphamide but no mention of Cellcept.
He was very factual, and sometimes I don't want to hear that.
Tangelo

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Tangelo,
I am about to start taking cyclophosphamide could you tell me what Dr. Furst said about this particular drug...(if you can remember..lol)!
Thanks so much.....
Laurie jill

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Laurie Jill,
One thing I remember that Dr. Furst said about cyclophosphamide was that they were still unclear how long it should be administered and that it seems to come back a while after the treatment is halted. He really did not talk a lot about treatments. The class was mostly on stem cell transplanting. He knows his stuff.
Tangie

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