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Scot Study


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#1 Bird Lady

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Posted 14 April 2007 - 04:43 AM

Hello everyone We are home from Duke, finished with screen one and two, Birdman has been randomized into the Cytoxan arm. We are supposed to start around the 24 of this month. We are a little disappointed we were hoping for Stem cell transplant, not sure at this point what we are going to do. Thought about checking out Northwestern, any one have any thoughts? also I have a neice with lupus, is there a web-site for lupus thats like this scleroderma site? Thanks everyone
Birdmans Wife
Hugs for All,

Julie (Bird Lady)

#2 Shelley Ensz

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Posted 14 April 2007 - 05:01 AM

Hi Birdmans Wife,

I'm glad he's accepted into the study, at least, if not to the arm that he would have preferred. They are doing it to figure out whether cytoxan is just as good as stem cell transplant or not, so who knows, in the long run its possible that cytoxan might be better. Anyway, of course, do whatever you both feel is best!

We have a whole section on lupus on the site. See
Systemic Lupus Erythematosus (SLE)

We also serve people with scleroderma and related illnesses, of course, but more comprehensive support for lupus could be found on the sites we've linked there.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Heidi

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Posted 14 April 2007 - 05:19 AM

Hi,

I am glad to hear that your husband has passed through screen 1 and 2 and been accepted into the study....just sorry it wasn't the arm you wanted. I wish you both the very best as you struggle with the decision of what to do next. Please do keep us posted on what you learn and what you decide.

Warm wishes,
Heidi

#4 janey

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Posted 14 April 2007 - 07:25 AM

Glad to hear from you Wife! Sorry that the arm of the study was not what Birdman and you really wanted, but then that is one of those chances you take I guess. At least both arms are a treatment of some kind. I wouldn't even consider those studies where one arm is a placebo because with my luck - I'd get the placebo.

So what do you think you're going to do? Is he going to go ahead with the study? Is there a timeline in which you have to make a decision as to whether to participate or not? If he does do the cytoxan, will that knock him out of any stem cell study elsewhere? That might be a question you ask Northwestern.

I'm sorry that your niece has been diagnosed with Lupus. In the link that Shelley provided there is a section on "support" that will take you to the Lupus Foundation of America.

Well - please keep us informed.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#5 Sweet

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Posted 14 April 2007 - 08:36 AM

Hi!
Thanks for the update. I am glad he was accepted. I wish you two the best! Keep us posted as you can.

I believe there are many here on this board with Lupus. I for one. B) I'm sure she would receive a lot of support here and I'd be happy to answer any questions she may have.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 americanmike

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Posted 14 April 2007 - 07:37 PM

sorry about the arm decision!

Northwestern is a top level stem cell center. They have pioneered much of cellular therapy for autoimmune disease. I would check them out.

There are articles posted on the site about recent studies from NWU and scleroderma. One study was only 10 people but the results were really good!

Also there is a paper out there from Northwestern and Europe and others about TBI and how its unecessary and really bad for scleroderma patients. Northwestern was involved in SCOT but pulled out and changed the study so that it skipped the TBI (radiation). To compare studies is really hard to do and the data is not in yet. But...it sounds like Nwu are being more critical and on the next version of the procedure. But whether they are right is impossible to tell.

Make your best guess. But it can't hurt to consult.


MIchael in florida

#7 Bird Lady

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Posted 16 April 2007 - 03:04 AM

Thank you everyone for the kind words, Can anyone direct me where to look for more info about NorthWestern studies? I have recieved a package from them but would like to know if anyone has personal experience form NWU. Mike have you or anyone been through Stem Cell @ NorthWestern? Just trying to get more info to help make the best decision for "ol' Birdbrain" ooopps I mean Birdman !!!!! Thank you everyone
Wife
Hugs for All,

Julie (Bird Lady)

#8 janey

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Posted 16 April 2007 - 03:22 AM

Good morning,
Here's a posting from last fall in which I listed four stem cell studies going on. I believe 3 of them are at Northwestern.

Current Stem Cell Trials

I believe these are the same four trials that come up at Clinical Trials.gov when I did a search there.

Hope this helps.

Big Hugs to you both,


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