Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


SCOT study Youtube video

  • Please log in to reply
5 replies to this topic

#1 razz


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 344 posts

Posted 22 November 2008 - 03:41 PM

Hi everyone!

I just finished watching this recent Youtube video. It is an excellent video profiling patients who have participated in the SCOT study where they discuss their experience. It also includes doctors who explain the two different procedures, the cyclophosphamide infusions and the stem cell transplantation. The people who put this video together did a fantastic job. Click here to see it.

Scleroderma Patient Experiences with the Scot Trial on YouTube. You can find this link and more about the SCOT Trial at this ISN link. Scot Trial.


Live well, Laugh often, Love much

#2 Margaret


    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 998 posts
  • Location:Pennsylvania

Posted 23 November 2008 - 05:29 AM

Hi Razz ,

Thank you for posting that. I watched it with tears in my eyes and then, sent it on to my family and friends who have no clue what Sclero is like except for what they see in Gareth. I am soooooooo thankful the the Plaquenil is working for him!!! All of you are in my thoughts daily.

Take care, Everyone.

#3 scragporter


    Senior Bronze Member

  • Members
  • PipPipPip
  • 48 posts
  • Location:phoenix Arizona

Posted 23 November 2008 - 06:24 AM

My wife is undergoing the stem cell transplant at the Northwestern Memorial Hospital in Chicago. We had the choice to enroll in the SCOT trial but decided against it as there is no cross over from the chemo side to transplant. The total body irradiation is off putting as it is linked to leukemia in the future. We are very glad to have chosen the treatment in Chicago as it follows the research already done as part of the Astis trial in Europe. We got randomised to chemo initially and after completing it she switched over to the stem cell side we would not have been allowed to do this in the SCOT trial. Dr Burt an immunologist has saved my wife and we are so glad to have chosen the Northwestern instead.

#4 ozzy69


    Silver Member

  • Members
  • PipPipPipPip
  • 169 posts
  • Location:Taylorsville, KY

Posted 23 November 2008 - 07:17 AM


Thanks so much for posting this. I am going to UK myself and my doctor is working with doctor. Crawford. I feel like I am in great hands with them. Hope you are doing great!

Thanks again,
Nina Lynn

#5 Snowbird


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 23 November 2008 - 09:30 AM


I agree, this is an excellent video...thank you!
Sending good wishes your way!

#6 razz


    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 344 posts

Posted 25 November 2008 - 06:33 AM

Snowbird, Ozzy69. Margaret,

I am glad you watched the video. It's great to see results from other scleroderma patients who have participated in the SCOT who are doing well. It is proof that the stem cell transplant with partial radiation does help patients return to a better quality of life.


Nine years post autologous stem cell transplant SCOT study and I'm doing very well!
Live well, Laugh often, Love much