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PrincessB

ASTIS Trial

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Hi,

 

Just wanted to tell everyone that I had my appointment yesterday to discuss my test results from July, which were compared to the baseline done before I had my stem cell transplant. My lungs have completely cleared up and I still don't have heart or kidney involvement. My skin has become softer on my chest and lower arms, although sadly my lips haven't gone back to how they were.

 

My specialist also gave me some news about his other patients: the lady who started her treatment right after me has not had such good results unfortunately - she was worse affected before she started and was almost outside the trial parameters - but she has seen some improvement; and a male patient of his who was hesitating whether to join the trial got too bad in the meantime and was no longer able to. I feel for them and feel extremely lucky that I had such a good result.

 

B x


Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

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Hi, B. So glad things have worked out so well for you. It is unfortunate that not everyone has the same luck with their treatments. I suppose there is a lot more to it than luck, as you mentioned, but I am happy for you, anyway.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi B,

Would you tell us about your exeprience with the transplant? Was it really tough? how long before you recovered from the treatment? I noticed that you live in France, I wonder is US citizens are eligible for trials in Europe. Here most inurance companies will not cover the SCOT trial.

 

Hugs,

Ana

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Hi B, just wanted to say am so pleased to here the good news re the improvement you have had. It gives hope that stem cell transplant is effective and will become a mainstream a treatment option in the future.

X Lizzie

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B,
thanks for sharing your good news! I have been holding off on the SCT as I want to see my daughter through high school but I may not have much of a choice as my lungs have become unstable and the only option seems to be the SCT.

Ana -- the Northwestern trial is the same as the Europe trial in that it uses high doses of the cyclophosphamide rather than the radiation in the SCOT trial to weaken your immune system. United Healthcare and BCBS of Florida is covering the Northwestern trial.

Regards, Gidget

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Hi PrincessB

 

Yes, it definitely is sad that the treatment doesn't always work for everyone but I'm also glad to hear that you have had some improvement in several areas.


Sending good wishes your way!

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Princess B,

 

I'm happy to hear your results show improvement from your baseline. I had my stem cell transplant 6/2000 and the improvements from the first two years was music to my ears. My lungs also got better. I'm excited for you and look forward to hearing more about your progress!

 

Hugs,

Razz


Live well, Laugh often, Love much

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The Astis trial in America is called the Assist trial and is being undertaken at the Northwestern in Chicago it follows the same principles of the european trial as it is non myloblative. This means it is designed for scleroderma and other auto immune diseases and has a better outcome than the scot trial. Insurances in America will cover it as my wife is undergoing the treatment at the moment.

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Hi Princess B ,

 

I just wanted to say that I am glad you are doing so well. Thanks for sharing your upbeat story.

 

Take care, Everyone.

Margaret

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Ana - I had the transplant in Sep 2007 and I guess it was in April/May that I really felt back to normal again. Partly it's psychological though, I really suffered through losing my hair (even though I know that was the least of my worries!). If you do a search for my posts, all the ones with ASTIS Trial in the title are about the experience.

 

RTC - No regrets whatsoever! I hope this becomes a mainstream treatment so you can all benefit from it.

 

Thanks to you all for your good wishes and support x


Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

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PrincessB,

My wife is getting the stem cell treatment at the moment. Your improvement and the others who my wife and I have spoken to who have received the stem cell transplant let us realize we are following the treatment that will give us the best chance long term. The treatments she received upto now concentrated on symptom management rather than treating the cause of the disease. The new immune system that is scleroderma free will be a new lease of life for my wife. She has just undertaken the mobilization stage and her stem cells will be collected next week. The Northwestern in Chicago and the immunology team are amazing and we are so glad we chose this treatment here.

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PrincessB,

I'm thrilled to read your results!!!!! Obviously, it was a hard decision to make and a timely decision. I'm so glad that things went in the right direction and you have had such wonderful improvements!

 

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)

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