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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 DBHYGRELL

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Posted 14 December 2006 - 01:07 PM

Hello all,

I am being evaluated for a bone marrow transplant at Northwestern. I was wondering if any of you have any advice or warnings etc. This is still new and I need to talk about it to digest it all... know what I mean :unsure:

Denelle

#2 Sweet

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Posted 14 December 2006 - 01:28 PM

Hi Danelle,

Wow, this is a big step for you I bet. I don't know too much about this, but I will give you a link that perhaps you can search around in. Also, I believe there are a couple of others here in the forums that are going through this as well, so hopefully they can give you more direct advice.

Stem Cell Transplants for Scleroderma.


Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#3 GocartMoz

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Posted 15 December 2006 - 03:38 AM

Hi Danelle,

I am not sure whether you are asking about a bone marrow or stem cell transplant? The stem cell transplants that are being done for Scleroderma, does not actually involve a bone marrow transplant per se, as I understand it. The cells are taken directly from your blood. I have been to both Northwestern and Duke exploring the options of a stem cell transplant. Both involve blind studies, meaning even if you are accepted into the program there is no guarantee you get the transplant. You could be randomized into the cytoxan arm of the study involving monthly IV treatments. The Duke study involves total body irradiation, which has been a source of controversy. Northwestern does not use total body irradiation and they have a crossover option where if you are randomized into the cytoxan arm, if it fails, there is a chance you could still receive a transplant. The Northwestern study is called the ASSIST trial and Duke is part of a multi-facility study called the SCOT study. I was very impressed with both facilities I visited . I believe both studies involve the finest facilities and dr.'s in the world in the field of Scleroderma and you just have to go with your gut on who to choose after talking with them about their protocols. I will tell you, however, I have reached the point of information overload and want to get to the treatment already. Nonetheless, it is too important of a decision to make in haste. Good luck and I wish you the best. If you need any further information about what I have learned don't hesitate to e-mail me.

Dave

#4 janey

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Posted 15 December 2006 - 03:54 AM

Denelle,

We have the blurb for 4 current trials going on right now. Here's a previous posting that lists them all.
Scleroderma Clinical Trials using Stem Cell Transplants
I'm glad Dave chimed in since he's going through this process as well. It will be interesting to hear from both of you as you go through this. It's so new, but it looks like it could the future for scleroderma treatment.

I look forward to hearing more.

Big Hugs,


Janey Willis
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International Scleroderma Network (ISN)

#5 DBHYGRELL

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Posted 15 December 2006 - 07:44 AM

Actually, there is also a trial at Northwestern where you will get an allogeneic bone marrow transplant from a sibling - which is the one that I am interested in. I've been on Cytoxan and it isn't working... so that is why I am headed that direction.

Denelle

#6 janey

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Posted 15 December 2006 - 11:58 AM

Denelle,
Is this the trial at Northwestern that you're looking into?

Allogeneic Hematopoietic Stem Cell Transplantation (NST) for Patients With Systemic Sclerosis.

I found the sibling connection quite interesting. Any information you get, please pass it on.

Big Hugs,


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#7 DBHYGRELL

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Posted 15 December 2006 - 03:33 PM

Yes, this is the study that I am looking at... I am hoping to be evaluated very soon as my lungs/heart are getting worse. Trying to get the logistics worked out is very complicated and stressful. I am no longer completely worried about getting fired from work... so I am working with HR to figure out how to work out a leave.

Denelle