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Stem Cell Transplants For Limited And Crest


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#1 americanmike

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Posted 17 January 2007 - 05:28 PM

For instance, in a study of 1432 cases from the Pittsburgh Scleroderma Databank, 10-year survival among patients with limited cutaneous disease was 88% in the group with anti-U1-RNP, 75% in the group with anticentromere antibodies, 72% in the group with anti-PmScl, and 65% in the group with anti-Th/To. Ten-year survival in patients with diffuse cutaneous disease was 64% with anti-topoisomerase antibodies, 61% with anti-U3-RNP, and 75% with anti-RNA polymerase III.

This is the survival from taken from the section on sclero.org survival and prognosis, article titled "Prognostic Markers in Systemic Sclerois"

What jumps out is that the survival is not that different between limited patients and diffuse.

So maybe Stem Cell transplants are appropriate therapy for patients with limited scleroderma?


And for that matter I still don't understand why doctors aren't recommending stem cell transplants for most of their patients. I'm not a doctor, not even close, but I can do math. If you have a decent chance of a long term remission and the procedure is really really safe... why in the world wouldn't it be the smartest option?

It seems like liability, rules about experimental therapies acceptance, insurance, and a million other factors are clouding what seems to be the only logical option?

I just keep pressing this issue because I know many people say they never knew all the options they had, and that their doctors were slow to explain or recommend the procedure. Yet, upon deeper investigation they realized this was the best option.

Michael In Florida

#2 bookworm

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Posted 17 January 2007 - 08:44 PM

Mike, I have CREST and I am interested in stem cell transplants, however, I was under the impression that they were quite dangerous and that one only wanted to risk having that done if one was in very serious condition.

I am doing pretty well on the meds I'm taking and I certainly expect to live longer than 10 years! So the 10-years information was confusing to me! I've already lived with CREST for over 20 years. Still, I agree with you: If there was a chance of a long-term remission, I'd certainly be interested.

I confess that I am confused by all the acronyms and letters, numbers and statistics. I read your first paragraph, quoted from somewhere, and I just don't know what most of that means! I feel that I should know what it means, and I promise myself that I am going to look it all up, but frankly, looking all that up sounds like a real chore.

I wish I trusted doctors to know all about any disease they are treating and to research and learn all the options for their patients. It seems to me that's their job! However, I don't trust them, and this board has shown me that I'm right about that! Some of the people who post in here have had and are having the most astounding experiences with some doctors who don't seem to have a clue what they are doing! Of course, other doctors are excellent, but it's not always easy to find them, especially if you don't know what you are looking for!

I am going to write down some of the information in your first paragraph and ask some questions next time I see my rheumatologist, which will be in February.

Mary in Texas



#3 janet905

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Posted 17 January 2007 - 08:59 PM

hi mike,
you are like me. I hate this business of waiting around for organs and things to be permanently damaged by this disease. I can tell you this much; if we all were 20-30 year olds with 10-15 years left to live the treatments would get MUCH more aggressive. but we are mostly 40-60 years old and if the disease isn't progressing too quickly (like limited) they figure we'll have roughly a normal life span and something like cancer will probably kill us first. then they won't feel guilty (or get sued) if they would have suggested stem cell transplant and we died from this. I"m not being flippant about it. this is really the way it is. we are high maintenance and this isn't a good thing in medicine. sorry if I sound a bit pessimistic. I know that sometimes I am not as upbeat as others on this site . also patients are partly responsible for this situation. the doctors are expected to cure everything and never have a negative outcome from any treatment or surgery. that just isn't reality. but not many people are willing to blame themselves for choosing a risky procedure if something goes wrong. that's my opinoin.
janet

#4 LisaBulman

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Posted 18 January 2007 - 03:02 AM

Hi everyone,
I would just like to add that I am in my thirty's and have had sclero for 14 years. I was first diagnosed with diffuse but my dr says now that maybe it is limited. He said either way it doesn't matter, I have sclero with organ involvement and that is what he is treating. As far as the stem cell transplants go, they are not fully approved yet and are only being tested on people who are in the first phase of being diagnosed and falling into certain criteria. My dr looked into it for me and I fall into all of the criteria but I have been sick for too long.
Like everything, things take time and I am sure they want to make sure this is going to work for the majority of people, have all of their I's dotted and T's crossed before they will approve this. Someday there will be a treatment that will help the majority of us, if not this then something.

Hugs,
Lisa
Lisa Bulman
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