Stem cell transplant

I am just wondering if there are others that are considering stem cell transplant therapy or those that have had it

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I didn't know it was available but would be interested in any info u have.

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I am new to this group but there is a stem cell clinical trial called SCOT which is in progress at several places around the country. According to the .gov website they are no longer recruiting for the trial. However, my doctor is looking into it to see if he can get me in the trial. It is hard to find much information on the internet about the trial but it appears to be promising. Findings are scheduled to be released to the public in 2016. It started around 2001, I assume the fact that it is still on-going is a good sign.

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Mariannh wrote in about four weeks ago to say that she had a stem cell transplat at Northwestern. She was not a part of the trials from what I understood. She researched it and arranged it on her own.

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The SCOT trial took its last patient in May 2012, I believe. Each patient will be followed for a period of 5 years, so they won't really know just how successful the stem cell transplant was until 2017. I went to Duke to try to get into the trial in 2010 and was accepted as a good candidate; however, my insurance company would not pay for the transplant. Most insurance companies consider it to be "experimental" and will not approve it. The out-of-pocket cost is about $300,000. I went through the appeal process with an attorney but still lost out on coverage for the procedure. The transplant required you to be at Duke for 3 months, with one month in the hospital and the other 2 nearby so you could be seen daily at the hospital. The alternative for me was to do the Cytoxan therapy, and Duke was nice enough to send my doctor here their protocol for it so it could be done here rather than in Durham. It was a high dose chemotherapy, and I took it once a month for a year. I think it slowed the progression of my Scleroderma. Each treatment lasted about 7 hours, so it wasn't fun; but I tolerated the chemo well and didn't even lose my hair. My last treatment was over a year ago, and this past March, the disease got aggressive again, moving into my lower legs and ankles and feet. My lungs have also gotten a little worse.

The last time I talked with Duke, they said that they were unable to get the required number of participants into the study in order for the results to be considered as a viable treatment, even though they are continuing to monitor the progress of the patients. I talked to one of the patients who said that he was amazed at how the disease had almost gone away. After 5 years, he said he is back to about 90% normal.

Hope this info helps.

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I live in the uk and it appears we are far behind you guys in treatment. I am grateful that I get my treatment for free but it's not as easy as it seems. Firstly I can't have all the treatments that are available. My consultant has to ask for funding and it currently keeps getting turned down. Secondly i haven't even heard of most of the treatments that people are talking about on here. I am currently on mycrofenalate and have been for years but as I understand it this is the only thing they can do for me. I was really surprised to see that stem cell therapy is a possibility. It has at least given me a light at the end of the tunnel :-)

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A few people seem to have used Dr. Burt with great success. He has a scleroderma protocol and a SLE protocol. Currently I only have SLE, but with high levels of SCL-70 antibodies. I'm hoping I don't one day develop scleroderma, but if I do I hope they are still taking patients for stem cell therapy.

http://fsmweb.northwestern.edu/faculty/FacultyProfile.cfm?xid=14172

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I was told about the therapy by dr. Simms who was apart of the study but after further testing I didn't qualify due to less than 50% lung capacity. Tried Cytoxin but landed in the hospital . They said it was a serious reaction to it. So taking cellcept amoun other things for Gi. but grateful they are helping to keep me at bay. Hoping to improve enough that when stem cell will be available to most I can be in lines less another possible fix happens as here are seeming to make more strides as scleroderma becomes more recognized and researched.just keeping up hope!

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Ironically, we had a speaker at our support group meeting that said stem cell transplants are most successful in the first 2-4 years of the disease. Unfortunately, many people don't even get diagnosed that early or are two ill by that time. I remain hopeful that this will be the most promising treatment for this disease.

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hi everyone,
thanks for the replies. i posed the question because i wondered how many people are aware of the this treatment option and are taking advantage of it.
i was diagnosed with scleroderma in 2007, but started having symptoms in early 2006. i met dr richard burt in july 2011 and had stem cell transplant in february of this year. i am on disability and have medicare. medicare covers the cost of the treatment; thank God. i had out of pocket expense for hotel and travel to northwestern in chicago during the outpatient portion.
i am doing much better. my quality of life has improved greatly. before stem cell i wasn't able to put on my own socks and shoes, button a shirt, get in and out of the bathtub without assistance, i couldn't bend over to pick something up off the floor and the fatigue was overwhelming. i have my life back. dr burt is amazing and so compassionate. the staff is excellent.
it's not a treatment for everyone i know, but it's worth it to all to find out if they are candidates or not

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My rheumy was against it because of the risk of death (I currently have SLE, not scleroderma. I do have high levels of SCL-70 antibodies). Would you mind sharing what the risks are? I'm particularly curious about the success rate as well as the death rate. Does he have theories as to why it's not successful for some people?

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those with end stage lung disease and active ischemic and heart failure may not be candidates. dr burt, GI doc, cardiac, pulmonary and rheumy doc collectively perform all the necessary testing ahead of time to determine if patient is a candidate or note. you can get more info from www.clinicaltrials.gov
the biggest concern if one is a candidate is risk of infection since chemotherapy done to eradicate immune system then replace with own stem cells. i have talked to a number of patients that had good success as well. it's worth finding out to improve life by reversing some damage and preventing progression.
here is another great video to watch also
http://www.sclerodermatrial.org/

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Waterview, I am encouraged to hear that you have seen good results from the stem cell transplant done at Northwestern. Were you part of a clinical trial or did the doctor just recommend this treatment? I was told that Medicare would not pay for the transplant due to it still being considered "experimental". I, also, am on Medicare and would like to learn more about your experience. Everything you mentioned in your post "wasn't able to put on my own socks and shoes, button a shirt, get in and out of the bathtub without assistance, i couldn't bend over to pick something up off the floor and the fatigue was overwhelming" describes me exactly. I have some lung involvement, but so far no other internal involvement. Is Dr. Richard Burt on staff at Northwestern?

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mellietn,

medicare does cover stem cell transplant. medicare is the only insurance i have. i know a young man going to northwestern next month for the procedure and he is medicare and they are covering. you can't always believe everything you hear from those who have not had the experience themselves.
dr burt is on staff at northwestern as the chief of the division of immunotherapy.
i know that everyone is not a candidate for this treatment, but as scleroderma patients we have to become more vigilant and aggressive in pursuing treatments. so many have become complacent and have given up hope. I AND OTHERS ARE LIVING WITNESSES THAT THERE IS HOPE! i hope you watched the video i posted above also.

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If you are considering a Stem Cell Transplant PLEASE read my story (in my journal section - https://www.inspire.com/MTFoley/journal/) and reach out to Dr. Richard Burt at Northwestern Memorial Hospital in Chicago. He saved my life!

I'm over three years post transplant and doing great! It's a scary option BUT it's worked for me. I especially encourage those recently diagnosed with Systemic Scleroderma, with lung complications, to consider this before you progress to far.

Dr. Burt: http://www.nmh.org/nm/physician_burt_richard_k_1013

Dr. Burt and I will be featured in an article in the November issue of Good Housekeeping discussing this form of treatment.

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I've always been curious, do the antibodies leave your system? Does your ANA become negative? Or is your blood work relatively the same but you are mostly symptom free?

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mtfoley,

thank you for sharing. my story is very similar except my lung issue wasn't too bad. it's amazing how my hands are still clawed, yet more functional. i go back in two weeks for my 6 month follow up testing and appointment. i agree that dr burt is full of compassion and the staff is amazing, although i miss kristin.

i would love to chat with you offline.

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Thanks for the notes, Waterview and mtfoley.

Yes, as a prospective SCOT patient, I have seen the video many times. Your stem cell transplant was not a part of the SCOT study, was it? From all I've read, the SCOT transplant procedure was a little different from Dr. Burt's procedure, but I'm not exactly sure of the differences. I am so happy that you have seen such success in just your first 6 months. (I assume that you are 6 months out from the transplant.) I hope all goes well at your 6-month follow-up.

Thanks for sending the link so I could read about your experience, mtfoley, as well as the link about Dr. Burt. I see a new rheumotologist here in Knoxville at the end of November---one that was recommended by Dr. Silver at MUSC. (I knew more about scleroderma than my previous rheumotlogist!) I want to discuss the transplant options at Northwestern with him when I see him. I feel that things are only going to get worse if I don't do something soon. Even though a stell cell transplant is scary, the thoughts of this disease continuing to get worse and worse is just as scary.

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Waterview you said that Medicare covers the transplant. I'm wondering if where you live plays a part? I say that bc I have Medicare also but was told by Medical staff that my insurance won't cover it. In fact, they wouldn't even allow me to have the oncology appointment that my Rhem made to examine/evaluate me to see if I would be a good canidate for the transplant. My Rhem really thinks that I would benefit from the transplant & she thinks that I would be a good canidate but I was told that my Medicare won't cover it. Wondering if I need to go out of state (N Jersey)

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mzquickfeet,

medicare does cover stem cell transplant to include pre evaluation testing. i live in st louis and procedure was done at northwestern in chicago. i know someone right now that lives in oregon that is on medicare and he is heading to chicago next week.
i think you should contact medicare yourself. you don't need your rheumy's blessing to do this. i called dr burt's office myself once i did the research. i completed the patient info form they needed then requested my medical records be sent to his office for review. i did send info to a rheumy's whose opinion i valued, but ultimately if a candidate it's all up to you and the treatment you want and need to regain your quality of life.

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Hi mzquickfeet, I live in the uk and really want stem cell treatment. I've tried to e mail dr burts team but it won't go through. Do u have any other contact details for him as I am desperate to get in touch to see if he would be will to look at my case. As far as I am aware there isn't anywhere in England that offers it.

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