I started a message and was very far into it but looks like I lost it. Anyway, I fought insurance for a year before they approved my participation in the SCOT study. I was randomized to the cyclophosphamide arm. I have had scleroderma for 3-1/2 years, and I am very excited to say that I have had 4 treatments and I have experienced increased movement in my joints and I have more energy. I receive treatment in Milwaukee Wisconsin. Everybody there is very nice.
Posted 17 November 2008 - 03:36 PM
Good luck to you on your decision process and
Posted 17 November 2008 - 03:43 PM
At my last doctor appointment she gave me all the paperwork for the Scot trial. I go to the rheumatologist in Lexington, KY (UK). I was dxed about 4 months ago. As of the lungs function test 3 months ago, I do not qualify for the Scot Trial, but she is retesting my lungs this month, and every three months. My rheumatologist said as soon as I show lung problems we can fill out the paperwork.
The thing I did not like about the Scot Trial is that you did not get to pick your treatment. I would rather do the Stem Cell. The treatments would be done at Duke. My rheumatologist has given me all the paperwork for the Scot Trial. It does state the Stem Cell could have worse side affects including death. The study she gave me stated that out of 33 people, that 19 have not progress and are doing better, 5 died from reactions to meds, 5 died from progression of disease, and 4 are still alive but are still having progression.
It is scary when you read the material but, if it comes down to it, I am ready to apply. I do wish you had a choice of treatment.
Please keep us updated on the trial. I try to read everything about it, sometimes I think I read too much.
I am so glad you are getting the chance to go through the treatment. Please keep us updated. Have a great time in Disney!
It is great that you are feeling better already. Please keep us updated!
Posted 17 November 2008 - 10:41 PM
I am happy that you seem to be having good results so far and look forward to hearing more about the trial and also to getting to know you better.
Nina, I know how you feel about all of this, but I personally hope you don't qualify, in that it will be better if you never have the lung problems.
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International Scleroderma Network (ISN)
Posted 18 November 2008 - 04:31 AM
Hi Hudson's Mom and Ozzy,
Congratulations on taking the steps necessary to get in the SCOT study. I hope the treatment is as beneficial for you as it has been to others who have gone through the study, including myself. I was randomized to the stem cell arm and had the transplant in March of 2007. It has been wonderful for me. I know others that have gone through the cyclophosphamide arm, who are on this board, who also have had great success. Ozzy, I had my treatment at Duke and cannot say enough wonderful things about the adult bone marrow treatment center doctors and staff. They are fantastic in every way. You will be in good hands, should you be admitted into the trial. If you have any questions don't hesitate to e-mail me. I go back every three months for follow up, through 2012, and frankly look forward to the trip. After being either hospitalized or staying at an apartment close to the ABMT clinic, for approximately 9 months, they have become like family.
Posted 18 November 2008 - 03:48 PM
Your right it would be great if my lungs do not progress, but if they do Iwant to be ready and fight it with any chance I have. My doctor and I both seem to think I have been progessing fast, hopefully we are both wrong.
Thank you for sharing with us. I am glad you liked Duke. If things progress I will be asking you all kinds of questions. I really like my doctor at UK, she has been great and speaks highly of Duke. I am really glad that you have had such a great outcome, it gives a lot hope to others.
Posted 18 November 2008 - 05:33 PM
It's thrilling to here that you are getting positive results from the cyclophosphamide! I trust that you will continue to see improvements. Thanks so much for sharing such encouraging news!
Also - Welcome! I look forward to learning more about you and your clinical trial experiences.
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International Scleroderma Network (ISN)
Posted 20 November 2008 - 05:24 PM
Posted 23 November 2008 - 07:45 AM
Posted 25 November 2008 - 06:24 AM
I am glad you were accepted into the SCOT study and look forward to hearing how you progress. Everyone has their own views on the pros and cons of each study. The most important thing is being positive and proactive in your improvement. I've heard great things about the doctors and staff at Duke and I wish you the best results!
Sending you positive healing.
Nine years post autologous stem cell transplant SCOT study. I'm doing great with NO adverse side effects.
Posted 25 November 2008 - 09:36 AM
I agree whole heartedly. There are pros and cons to all studies, including SCOT and Assist at Northwestern. The bottom line is that both are achieving remarkable successes. I couldn't agree more that the key is being proactive and being your own advocate in finding a treatment that is right for you. I have to admit, I was very worried about the fact that SCOT was using total body irradiation vs. Assist, which did not utilize radiation, and the potential future problems associated with going the radiation route. Nonetheless, for me it came down to a gut feeling connection with the doctor.'s and staff at Duke.
I can't say enough wonderful things about both programs, however. In my research leading up to my stem cell transplant, I checked out a number of facilities, including Northwestern, U. of Pittsburgh, and spoke with Dr.'s at Johns Hopkins and University of Pa. They were all fantastic and eager to help.
There are so many experts out there willing to help. However, it is up to the patients and caregivers to seek them out on there own.
Posted 25 November 2008 - 02:10 PM
I hope you continue to improve with the cyclophosphamide but I know how difficult it is to obtain funding for the stem cell transplant. What I would keep in mind is if it does not work there are people who have received chemo before and do not fit the parameters of these trials that still get stem cell transplants at the Northwestern for scleroderma.
We were lucky that we could switch arms when needed with the assist trial. All the best in the future.