Posted 21 August 2007 - 04:09 AM
I have been reading about the SCOT study and the eligibility criteria.
Interesting stuff. One of the inclusions for SCOT was that the
duration of SSc must be â‰¤ 4 years from the onset of first non-Raynaud's symptom. Is that saying that if you have had any other symptoms other than Raynaud's over four years ago you are not a candidate?
I am not interested in Cytoxan in the least bit but I am interested in stem cell transplant.
What do you all think about stem cell?
Posted 21 August 2007 - 08:36 AM
Five years ago I had an autologous (you get your own stem cells back, not someone else, so no rejection issues) stem cell transplant for the treatment of Burkitt's Lymphoma. I did not see any permanent improvements in my CREST/scleroderma. In fact, the weakening that arose from the treatment made it worse (I was very weak about 3 months, largely bedridden - sort of like a much worse version of the dreadful feeling that chemotherapy causes). Also, about 9 months later my Raynauds got much worse - all fingers bandaged and much pain. This went away after a while. I am still much weaker and more prone to aches and pains that I associate with scleroderma than before.
At the recommendation of Dr. Furst of UCLA, I spoke with someone at a major center that has a protocol for scleroderma stem cell transplantation (Sloan Kettering?). They told me that they only do it when the scleroderma is life-threatening. This is due to the high risk associated with the procedure. There is something like a 10 to 20% death rate.
Also, I took quite a bit of Cytoxan during the cancer treatment (it is mainly a drug for treating cancer). I imagine that the dose was probably higher than for scleroderma. I would take a very close look at the side effects before taking any of these cancer drugs. Some of the others that I took (not Cytoxan) list leukemia as a possible side effect! ...but when you consider the alternative.
26 years ago, my father (who also had CREST/scleroderma) was treated with Cytoxan and Prednisone for kidney failure and pulmonary fibrosis. It seemed to work. He did not end up on dialysis, and he was able to come off of oxygen.
Posted 21 August 2007 - 09:53 AM
Even if you have the transplant, you will still have cytoxan, you will just have a high dose in a shorter period of time. A transplant is not only done when the scleroderma is life-threatening, because mine isn't, but maybe that was once the case. In fact, I have been told that it is better for the patient to be given the transplant earlier rather than later because the risks associated are worse when combined with other complications caused by scleroderma, e.g. heart complications.
Posted 21 August 2007 - 12:27 PM
As you may be aware, I had my stem cell transplant at Duke in North Carolina in March. This was part of the Scot Study. The jury is still out on its effectiveness for me though I can tell you my skin score is much less and I am out of pain. I still have alot of gastro issues and my pft's have remained stable. I believe there have been 7 done at Duke for Scleroderma and I have spoken with many of the previous patients. They did very well and some feel as though they are back to normal. Be prepared though, it is a rough road. You can look at some previous posts or my wife's blog for more info on that. However, I was told I was unique in my post transplant course. I had alot of complications but am on the road to recovery. Your road may be far easier. Remember that if you are accepted into the trial you are randomized. As such, there is no certainty you will get the transplant. You may wind up in the Cytoxan arm. If you have any questions about the process please e-mail me if you wish. One thing I can say for sure, if you are going to do SCOT, the doctors and nurses at Duke are first rate. I recommend them highly. One other thing, remember that SCOT includes total body irradiation without any crossover options to one arm or the other if treatment is unsuccessful. The trial at Northwestern does not use radiation and has a crossover option. I chose SCOT because of the gut feeling and connection I felt to the doctors and staff there. However, be aware that the rheumatologist involved in the study, Dr. Joseph Shanahan has since moved to Wilmington, NC and is no longer at Duke. He was wonderful and was a major reason I got in the study. Ultimately, the first decision is whether to have it, not where. I can tell you that the transplant is done on those with a Systemic diagnosis in the early stages, with a rapidly progressing disease process. I was told I had a 50% chance of surviving past 5 years. That is why I chose to have it. Good luck in whatever you decide.
Posted 21 August 2007 - 01:55 PM
Craig, PrincessB and Dave,
Thanks so much for taking the time to respond to my post.
I admire all of you for your courage to do this and wish you
success and better health. I am sure the decision to do the
transplant was difficult.
I do not think I am anywhere near needing stem cell treatment or cyclophosphamide I am on Cellcept and it seems to be working for me. I stress because my DLCO and TVC are in the high 50s and low 60s.
My Dr. and I have never discussed it and I do feel good, relatively
speaking. I don't want to give anyone the impression that I
am at that point. I just want to be prepared so that if the time
comes, I can at least carry on a conversation with my Dr about it.
Some days I feel so worn out and sick, and then there are days when
I don't believe I am sick. My symptoms are all internal (except for telangiectasias and I have started to embrace them) so I think it may be easy to fool myself sometimes.
PrincessB, get lots of rest!! Take care of yourself and hopefully you'll get a good meal. Just add butter
Please keep us posted on how you all are doing. Thanks again for all
this great information. I hope it helps others too.