razz Posted November 23, 2008 Share Posted November 23, 2008 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. . You can find this link and more about the SCOT Trial at this ISN link. Scot Trial.Hugs,Razz Quote Link to post Share on other sites
Margaret Posted November 23, 2008 Share Posted November 23, 2008 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. Margaret Quote Link to post Share on other sites
scragporter Posted November 23, 2008 Share Posted November 23, 2008 Hi, 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. Quote Link to post Share on other sites
ozzy69 Posted November 23, 2008 Share Posted November 23, 2008 Razz, 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 Quote Link to post Share on other sites
Snowbird Posted November 23, 2008 Share Posted November 23, 2008 Razz I agree, this is an excellent video...thank you! Quote Link to post Share on other sites
razz Posted November 25, 2008 Author Share Posted November 25, 2008 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. Hugs, Razz Nine years post autologous stem cell transplant SCOT study and I'm doing very well! Quote Link to post Share on other sites
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