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Do we have anyone here who has gotten a Stem Cell transplant?


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#1 greypilgrim256

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Posted 25 November 2014 - 08:32 AM

I am reading more and more about Stem Cell Transplant as part of the clinical trial with Dr. Burt at Northwestern University in Illinois.

 

I figure I am roughly 1-1.5 years into this disease and I guess things have progressed slowly and could always be worse, but now I feel that my face is beginning to be affected and feels slightly tighter.  What can I expect after that?  My chest and organs?  

 

Has anyone had any experience with a Stem Cell Treatment?  My understanding is that the patient needs to be sick enough, but not TOO sick to the point where they can't handle the treatment. 

 

Stem Cell treatment seems to be a genuine route to remission from this, but I know the procedure itself is costly AND dangerous.  I am only 34 years old and the way I see it is that if there is a way to keep my body from progressing any further.  

 

Looking for input from anyone that has had, or knows of anyone that has had Stem Cell transplant procedure done.  



#2 Amanda Thorpe

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Posted 25 November 2014 - 04:23 PM

Hello Greypilgrim

 

Just a quick reply to say that my understanding is that unless you are terminal/nearly terminal it's not a consideration because of the huge risks. There have been posts over the years about this, type it into the forums search bar, and of the 3 I can remember, 2 died. One guy who used to be a volunteer with the ISN (gocartmozart) made a remarkable recovery and moved on. I am afraid one young woman (Peanut aka Lisa Volz) another volunteer had strokes afterwards, toes amputated and eventually died. Another man died during the process, Roger "Birdman", it was his wife who posted.

 

Ultimately you won't know until you speak to a doctor but I don't think it's the answer to stopping your face being involved and I say that as a woman who was initially obsessed with that possibility. For the first year that was my fear, not dying, losing my face, and I am sure I would have had a transplant then if it had been predicted. Ironic really, I look at myself now and  wonder who is staring back!

 

Let us know what you find out and take care.


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#3 miocean

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Posted 25 November 2014 - 04:45 PM

I was going to bring up what Amanda did about our two members who died after stem cell transplants. However, there are others who have done well. I didn't qualify for the SCOT trial due to renal failure but if I had I would have tried it.

 

Since you are investigating all options, look into it. Ask John Hopkins about it when you go there.

 

miocean


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#4 Joelf

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Posted 26 November 2014 - 02:58 AM

Hi Greypilgrim,

 

I can only echo Amanda's sentiments about the Stem Cell Transplantation. I have absolutely no experience of this procedure, but would suggest that it really is quite an extreme measure, not to be entered into lightly, without sufficient research into the possible pitfalls.

 

I understand how worrying it is to feel that your body is changing, particularly at the young age of 34 and certainly it's worth investigating this bizarre disease and learning as much about it as you can (I do that myself! ;))

 

Kind regards,


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#5 greypilgrim256

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Posted 26 November 2014 - 06:19 AM

I would not be interested in the SCOT trial.  As far as I know they are not recruiting anymore patients.  That, in my understanding, is that it included full body radiation.  The ASSIST trial currently being used by Dr. Burt at Northwestern University is in phase III of its clinical trial.  I don't think they have had any deaths yet in Phase III of the trial.  

 

http://clinicaltrial...how/NCT01445821

 

I'm more worried about my kidneys quitting on me and this disease impacting my heart, thus making me ineligible for a transplant treatment in the future.  I know this is an extreme procedure, but as far as I know, the more healthy you are at the start of your disease, the better your odds of getting a successful transplant. 



#6 Shelley Ensz

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Posted 28 November 2014 - 07:50 AM

Hi Grey,

 

If I remember right (and I may be wrong -- I often am!), Peanut, who we all still dearly miss, had her stem cell transplant at Northwestern, although she may not have been in the clinical trial. In general, the transplants are only offered to patients who have the worst prognosis and it is still not a sure-fire cure for scleroderma. But they do seem to be getting better at them all the time, as they tweak the treatment protocols.

 

Most of us when we first hear about the stem cell transplants go, oh yeah, I want one of those, and right now, please!  But it is quite sobering to learn the nitty gritty details, and to realize stem cell transplants have much higher success rates with other diseases.  Still, if you think you are a good candidate after reading the qualifications for it, and its risks, be sure to ask your scleroderma expert about it.

 

One word of caution, though.  Many years ago, I told my rheumatologist I was concerned because my skin tightening was progressing. And she said she wasn't worried about it at all, because skin involvement would never kill me -- but lung involvement (for example) would. Well, that caught me up short and readjusted my faltering attitude in one big hurry.  And that is actually at the root of what you are talking about for a stem cell transplant, the very understandable desire to avoid or forestall terminal complications. I think all of us totally "get" that wish.

 

Scleroderma facial involvement, if and when it occurs, often is not always entirely bad.  Usually its effect is to gradually erase wrinkles, or even prevent them, sort of like a natural form of plastic surgery. Collagen is what people want in their faces so badly they are willing to pay for collagen injections and have surgery, to emulate it. And there are other and less toxic therapies to address scleroderma skin tightness (and other symptoms as well) such as UVA1 Phototherapy.

 

That said, I doubt there are any among us with scleroderma who didn't spend some quality time researching stem cell transplants, and every other potential treatment. In fact, that's part of the aim of our nonprofit, to continually research, report, and organize all the medical breakthroughs for scleroderma and related illnesses.  Knowledge is truly power when it comes to dealing with a dread disease, and that means every aspect of knowledge -- the good, the bad, and the ugly.  We need to know the possible beneficial treatments as well as their side effects or complications so we can make the best possible decisions for our healthcare.

 

In any scleroderma support group, you are going to find people who have been sobered by the reality of various treatments -- as well as sobered by the reality of the illness, too. There's also a bit of bias to consider, as people who get better (from whatever) tend to move on quickly, not needing the support anymore, and people who die (from whatever) tend to be acutely and fondly remembered, and sometimes the treatment rather than the illness is blamed for their demise. So you'll garner our emotional reaction on treatment topics, for sure, but please balance that with all the scientific info you can muster as well, so as to not make a decision that is unduly biased (in any direction) for your own health.

 

:emoticons-group-hug:


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#7 greypilgrim256

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Posted 28 November 2014 - 04:04 PM

I appreciate all the input from everyone.  However, the aesthetic reasons are actually at the bottom of my list of reasons why I would like to consider the stem cell treatment route.  I found out that the antibody type I have is the U3RNP antibody which has one of the highest mortality rates of any antibody with diffuse scleroderma and tends to affect organs quickly, particularly the heart. 

 

HSCT should not be done for patients with heart involvement and Northwestern is very rigorous with their selection process, hence the near 0% mortality rate in Dr. Burt's trial.  Logically, the quicker I make a decision the less chance I have with having complications with the heart. 

 

My fear is if I hesitate and my heart does become involved/hardened in a few years, I will have missed my chance to actually have the procedure done.  I know what goes into the procedure, and I also know that there are many good medications that slow the progression of this disease down.  Everyone has to make difficult, and permanent, decisions with this disease, as in life.  I do plan to send in my paperwork. It is possible I will even be denied based on the fact that my lungs are not yet involved, as I know that is one of the criteria for being involved in the trial.  Who knows where I, or anyone for that matter, will be in a year from now with our progression.   



#8 Amanda Thorpe

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Posted 29 November 2014 - 03:22 PM

Hello Greypilgrim

 

Please let us know how you get on with your application.

 

As a word of encouragement, heart involvement does not automatically redline you to the morgue, if so this post comes from beyond! 

 

When diagnosed I had major skin involvement and nothing else, with negative antibodies (ANA & SCL-70) I was told it was highly unlikely I would have internal organ involvement. This put me off my game so when scleroderma began to target my heart I paid it no mind, in addition none of my doctors were alarmed. Well what began with a left ventricular bundle branch block ended a year later in myocardial fibrosis and serious heart failure, as in queuing to join the redline. My life expectancy at that point was 2 years.

 

Well, 5 months later I had a biventricular implantable cardioverter defibrillator implanted and hey presto I could breathe again! Although I will always be in heart failure as my heart doesn't work without the device and trying to have anesthesia is a palaver, it's all good!

 

Internally scleroderma targeted my heart and not in the usual way but I'm still here and there are many people still alive against the odds!

 

I hope this helps and take care.


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#9 Chip

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Posted 06 December 2014 - 11:31 PM

My husband had a SCT for acute leukaemia - it is NOT something to be considered lightly and I know he would never wish go through it again - however his transplant CAUSED his scleroderma.

I'm not sure if the conditioning for transplant would be as intensive as it needs to be for a blood cancer, but it is hard work and horrible to watch someone go through - if you have to have total body radiation I know my husband would say don't do it.

#10 greypilgrim256

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Posted 08 December 2014 - 02:30 AM

The HSCT done at Northwestern is nonmyeloablative and does not use radiation at all.  I don't think I would ever consider that unless there was no other option.  



#11 Amanda Thorpe

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Posted 12 December 2014 - 03:02 PM

Hello Chip

 

I have just read your post, apologies for being tardy, and I wanted to thank you and your husband for being so straightforward and honest. I am so sorry that having survived all of that, he now has scleroderma and not just having scleroderma but having it because of a life saving procedure.

 

Take care.


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