Monday, February 11, 2013

Steady, As She Goes


It's been a long time since I updated my blog, but so much is happening in my life and in the world of scleroderma, that I felt it was time to share the news.

First and foremost, Dr. Burt has now published two articles on me, or at least me and my cohorts. :) Both articles were published in Lancet, a very well-respected journal. The most recent just came out this month. So, I want to post the links here in case you want to access and read these articles. The data, in summary, show very encouraging results. Those with aggressive forms of scleroderma are living longer and living better, thus far, following autologous stem cell transplantation. Relapse rate after transplant is about 30%, and 5 year survival is 78%. For a disease which typically can take 7-12% of patients each year in its aggressive form, the form which requires stem cell treatment, these results are encouraging. Those who did best received their transplants early, prior to any cardiac involvement. Dr. Burt is continuing his research in scleroderma and stem cell transplants, but there will no longer be a control group. He is comparing two different conditioning regimens (the chemotherapy used to eliminate the faulty immune system will be different in the two groups) but both groups will receive stem cell transplant to reboot the immune system.

Here is the most recent article, discussing all 90 patients transplanted so far between Dr. Burt and his colleague in Brazil. This includes patients who were older and had more long standing disease than within the ASSIST trial.

Here is the article which discusses the 19 patients in the ASSIST trial, in which I participated.

I, unfortunately, meet relapse criteria. However, it's not as bad as it sounds. The criteria are very strict, if you will. Because my skin began to tighten again about 14 months after the transplant, my local doctors tried new therapy for me. I did not tolerate the treatment, and developed complications. Hence, I have really not been on any immunosuppressants for any extended period of time... perhaps 60 days total. But, using any new treatment at all qualifies as a "relapse."

At my most recent appointment with Dr. Burt, we discussed the use of immunosuppressants, and he feels that my situation is so stable that there is no need. My lung function is stable year over year for the first time. My cardiac status is stable. My kidneys, after a brief decline in function last year, are once again running full steam. All of the potentially life-threatening complications are seemingly stable. I am enjoying riding my horse, and my biggest health issue at present is a dumb back injury I got falling in my garden. I love normal problems. :)

I got my second set of teal streaks in my hair recently... so much fun. I'm streaking for scleroderma. I continue to work for scleroderma awareness, I continue in my volunteer capacity with the Scleroderma Foundation, I'm planning my third education day (April 27) and just loving time with my kids and family.

NOW! Hair aplenty!

I'm looking forward to reading the ASTIS trial--I contacted the investigators this month, and they are hoping to go to press this year, too. This European stem cell transplant trial in scleroderma is larger than ASSIST and will definitely add substantially to our understanding of the treatment's potential. The SCOT trial, the multi-center US trial, is not yet published, and I look forward to those results, as well. In the meanwhile, some of the SCOT investigators have started a new trial which does not include total body irradiation, and is enrolling in Colorado and Seattle. This trial, called STAT, also will not have a control arm.

I am so encouraged that my own experience with the control arm, as painful as it was to lose cardiac and pulmonary function, may have contributed to medical science. Dr. Burt says "no;" he believes that it was never necessary to have a control arm. But, I understand the need for solid science. I just always thought I'd be on the other side of the bench.


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