Stem Cell Transplants
Posted 27 December 2006 - 07:44 PM
If you haven't already heard... stem cell transplants (allo and auto type) are making huge impacts on scleroderma. There are many remissions and some cures. In fact, the allo type transplant cures many autoimmune diseases and is quite common for other autoimmune disease like Aplastic Anemia and other blood autoimmune diseases.
So the cure is right there in front of our face. We're so close.
If you ask your doctor this question... "if I had a new immune system from somebody healthy would I be better?" he'd probably chuckle and say..."probably. but that's not so easy to do." But it's getting easier every day!!!!
Some studies show transplant related mortality as low as 8% for allo transplants. And that was for very sick cancer patients. Given these improved survival numbers it's not outrageous to hypothesize that undergoing such a stem cell transplant would have a 90% chance of curing sclero, and an 8% of dying. That's not a bad starting point. Imagine what we might come up with taking all the best ideas out there (on allo stem cell transplantation) and tailoring them to fit Scleroderma specifically?
I really think the cure is within reach.
Michael In Florida
Posted 28 December 2006 - 05:45 AM
One thing we all need to keep in mind is that the stem cell transplant is ONLY for individuals who have early onset, aggressive diffuse scleroderma (which is a very small minority of those with scleroderma). There are also lots of studies going on right now with scleroderma patients looking at clinical efficacy of stem cell transplants. In fact, there are so many different studies that at times it gets confusing to keep all of the different ones straight.
Posted 28 December 2006 - 12:31 PM
I've heard that UCLA has a good program for this (or a doctor Furst who specializes in the procedure), but only for very severe, life-threatening scleroderma, since the risks are so great.
I've suffered from CRST for 30 years, and 4 years ago had an auto stem cell transplant for Burkitt's Lymphoma. Of course, no GVH probelms with an auto transplant. However, there was one CRST symptom that occured about 9 months after the transplant: Raynaud's came on extremely aggressively, with all fingers ulcerated and very painful attacks- sort of like the hands had hundreds of pins going through them or were on fire. I'd previously had finger ulcers, but never with such intensity. Adalat and Prazosin brought it under control, and it has since remitted. The cancer has also gone into remission - essentially considered cured, since it an extremely aggressive cancer that returns in a matter of weeks if not eradicated.
My experience with stem cell transplantation.
Posted 28 December 2006 - 03:55 PM
The other day I wanted to post a question for those that have been battling with sclero and/or other CTD's for at least 10 years of their life to see if I could get an answer other than "making lemonade." A good attitude will help with any illness, but it doesn't cure everything, and I was wanting to know what people are really feeling, especially those of us that are used to keeping up appearances for those around us. I don't remember who has the "If life hands you lemons..." on her posts, but please don't take any offense to my remark(s)--it's a great reminder, and I'm glad you have it there, and hope that you can make an ocean of lemonade in spite of everything you're going through!
I've been dealing with various CTD's since 1972, and the last 3+ decades of life have been an uphill battle to say the least, especially trying to get a doctor to listen. There are others on the site, primarily women, who are also true products of the '60's and '70's medical world, spending far too many years getting blown off by doctors who figured that nearly everything is hormonal or mental. Take a tranquilizer, get a hobby, or get a hysterectomy. Done. You're "fixed." Or they figured that kids only get strep, colds, and earaches, then promptly sent us home with a bottle of penicillin and a bottle of olive oil to drop in our ear. Over and over again in the early to mid 80's I was told, "Don't drink coffee or eat spicy food" and sent away without an examination or bloodwork. My chiropractor was the one that finally started the ball rolling for a proper diagnosis, but it took from 1985 until 2006 to finally get one. Bizarre!
Even if you can stop sclero in its tracks with stem cell transplants of any kind, can you reverse 34+ years of major damage? It seems that you got an early diagnosis, which is wonderful (you've got a beautiful wife and daughter!), but way too many of us weren't so fortunate. Between 2004 and 2005 I was told no less than five times by different doctors, "You just aged rapidly" and "Your body is just old and worn out." One doctor that did some spinal block injections was discussing me with the nurse in the hallway before seeing me the first time and thought I was in my 80's after looking at my medical history. I had just turned 39. Even if they could stop the sclero, the thought of living another 30 or 40 years with the condition my body is in now is downright depressing. Trying to do simple things, like putting on socks or walking 5 feet across the room is agonizing even with meds, and the symptoms have taken off like wildfire over the past 15 months. If I'm 80+ years old now, how will I be when I actually hit 80?
If you, or anyone else on the board are at a point where you can be helped, go for it!!!! Don't think for a second that although I'm a little tired of "making lemonade" some days that I've now opted for "sour grapes." It thrills my heart to see someone find relief, and better yet a complete remission, since we all know how horrible this disease is, and I'd hate to see you end up like so many of us. It's just a fact that too many of the 40 pluss'ers didn't get the medical attention we desperately needed and now we're stuck with varying amounts and types of damage.
Like the rest of us, I'll get up tomorrow as long as my eyes open, will figure out what my body is willing to do, and take it from there. My mind is always rolling on something, most of which is impossible now, but I still love to hope against all hope that something might change all this. I truly hope that all the research pays off, and one day very soon you'll be able to say that you're in complete remission.
Best wishes to you and your family,
Posted 28 December 2006 - 05:14 PM
you very possibly could have safe allo stem cell transplantation that would benefit the vast majority of scleroderma patients early late diffuse and limited.
Thanks Craig and Elehos for your responses. Craig your experiences with autotransplant and later a worsening of your symptoms is why I want more attention paid to allo transplant.
Elehos, --- bless you. I'm so sorry you've had such a hard time over these years. Perhaps you would be too far gone to benefit, but perhaps not. Only study directed at this procedure would tell.
Posted 28 December 2006 - 06:26 PM
But the reality is there is no cure, or is there? I've only been researching scleroderma for a few months now and has anyone been cured of Scleroderma?
and what exactly does it mean to be in remission? Does it mean your symptoms reverse, stop or disappear? And if they disappear would I then be left with irreversable damages?
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 29 December 2006 - 05:55 AM
Many thanks - I thought I might be the only one refluxing on lemonade. Having scleroderma for 18 years I can well understand where you are going with this. I live near and work with the University of Tennessee who has a research department for connective tissue disease. In hope, I call them once in a while to find out what they are doing. In March 2007 they are beginning 'Bovine research', it is directly for patients who have long standing disease and I may persue this. With that in mind, I have otherwise opted to not further treatment with the exception of my gastroparesis - since as long as we live we have to be able to ingest and digest. Going to the doctor (7 of them) only adds to my depression, confusion, and financial demise. Scleroderma takes it's toll, whether very quickly or slowly one day at a time - it is truly a day to day battle. I appreciate all the research and information available on this site - I wish well to all who participate or just read the forum messages.
So, I guess I just wanted to thank you for your message which expressed so well the long term effect of coping with this disease. I hope this will be a good day for you.
Posted 29 December 2006 - 06:29 AM
There are a bunch of great links from sclero.org to stem cell info, Stem Cell Transplants for Scleroderma.
There are people who have had bad sclero, then had an allo-transplant, had all of their skin return to normal, and had no further progression of the disease. Call that whatever you want.
There are also people who've had auto transplants and have gone 7 years or more without any clinical signs of their disease.
And of course there are people who had transplant and experienced a relapse of their disease in a very bad way.
It's a matter of study and research. But you cannot say Scleroderma is an incurable disease. It is just not true. And the next 5 years hold major promise!
Posted 30 December 2006 - 06:18 AM
I just noticed the replies here, and it's good to know that others will admit to being a bit tired of the mask and squishing lemons and wanted someone to say it! In spite of everything, my attitude is very good, but the reality for some of us is that by the time the medical world figures out something, we might not be here to benefit. It's not a depressing thought since there will be those that will benefit, but it seems like I'm getting closer to the finish line every day, and frankly that doesn't bother me. My heart aches for those that are afraid and hurting every day, and I hope that you can find some peace of mind in the midst of your uphill battle.
I hope all your research will pay off in a big way for you and others. The reason I had mentioned my medical history is that I have had remissions, whether small or big, from childhood until my second son was born (1992), but it seems that those remissions can come with a big price. It's like "borrowing time" from a loan shark; when they come to collect, you pay through the nose! It was interesting that when I was pregnant things settled down, and since my second pregnancy was only 9 months after my older son was born, maybe my body was given some extra time off from any major symptoms. At the beginning of 1994 though, the loan shark knocked at my door, and hasn't gone away! It's just a fact for too many of us, but hopefully the "newbies" to sclero can find medical help in the very near future.
Best wishes to both of you,