Stem Cell Question

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Hi guys,

I am new here. I was reading all day today all the stories presented here and I wanted to tell you that I am praying for all of you as much as I can.

My girlfriend that I really love has few symptoms of Crohn's, her mom has it too. She is not yet diagnosed, but I am trying to be proactive behind her back.

I have read about long remissions after successful stem cell therapy and was really happy to hear that if all fails we can always try to go through that, but after doing some more research I found out on a clinical trials government website that NCT00271947 trials were terminated and couldn't find a reason... it says " This study has been terminated. " Is that mean that they are done with this types of treatments? Is it no longer an option for people with crohn's. What went wrong? I would appreciate some more info if anyone has it.

Thank you
God bless you all.
 
I am currently in the evaluation process for a stem cell transplant, and know a few people who are undergoing the process right now. I don't know the specifics on the clinical trial side of it, but stem cell therapy as a treatment isn't going anywhere anytime soon!
 
I just re-read your post, I think the Stem Cell Trial termination you are referring to was a trial in which stem cells were simply infused therapeutically, which didn't have lasting effects because the underlying malfunctioning immune system was still there to wreak havoc. The treatment I'm referring to is a Stem Cell Transplant, which is very similar to a bone marrow transplant. The patient undergoes chemo to kill off the faulty immune system, and stem cells are infused to grow a new (hopefully healthy) immune system. At first this seems like a drastic measure to take, but this treatment is only for people who have exhausted every other option available to them. Hope that clarifies things a little! Have a great day, and best of luck to your girlfriend. :)
 
I just re-read your post, I think the Stem Cell Trial termination you are referring to was a trial in which stem cells were simply infused therapeutically, which didn't have lasting effects because the underlying malfunctioning immune system was still there to wreak havoc. The treatment I'm referring to is a Stem Cell Transplant, which is very similar to a bone marrow transplant. The patient undergoes chemo to kill off the faulty immune system, and stem cells are infused to grow a new (hopefully healthy) immune system. At first this seems like a drastic measure to take, but this treatment is only for people who have exhausted every other option available to them. Hope that clarifies things a little! Have a great day, and best of luck to your girlfriend. :)

Thank you so much. It seems like everyone at some point in their life is stopping to respond to any kind of drugs for crohns. Why is it not a first option for crohn's patience to reset the immune system.

Is it dangerous?
Is it expensive? How much does it cost in chicago without insurance at the best facility in USA.
What is the chance of your immune system not restarting and you getting stuck with 0 immune?
When you say "but this treatment is only for people who have exhausted every other option available to them" Is it because it's very dangerous and the success rate is low or is it because it is expensive?

Thanks a lot for your response. I am sure it is hard enough as it is. Stay positive.
 
I would hope that at some point in the future, this would be the go-to treatment for all auto-immune disorders, because it makes a lot more sense than all these other immune suppressants, etc. But, Western medicine never ceases to amaze me... and I don't mean that in a good way.

As of now the treatment is still very new (only 15 years old) and there haven't been any major double blind studies (they are underway, but do not have results yet). So the newness factor, combined with the unappealing chemotherapy factor, would make it a last resort even from a patient's point of view.

I don't know the exact statistics on the risk factors involved in this treatment, but I do know they are minimal. The most dangerous thing in this situation would be an infection, or developing host v. graft disease, which I think is pretty rare. I think the most likely or most common downfall would be the donor stem cells not "winning out" when re-growing the immune system. Which means the patient's own body is re-growing the immune system. So there is a likelihood of the disease returning at some point, but most patients (myself included) feel that even five years free of this disease are well worth all the risks and expense. And when I say five years disease free... I think that is almost 'worst case scenario', at least for me. Majority of patients so far don't see a return of disease for 10-15 years, and for many the disease has not returned at all. But the really great thing is that if or when the disease comes back, all the medications and therapies that stopped working before will work again because you have a brand new immune system. It could probably even be controlled through diet and holistic approaches in most cases. But, I am not a medical professional and don't know the research front and back, so please, don't take my word for fact.

The transplant is very expensive. The big pharmaceutical companies cannot profit from this, so there is no one bankrolling the research and trials, making the process take longer and making it less accessible to patients because of cost. Also, many private insurance companies will not cover it, or at least put up quite a fight, taking months and months of repeated denials and appeals. The cost is approximately $125,000-175,000 from what I know. I don't think that includes travel and board expenses.

Your question about the immune system not restarting and being stuck with 0 is actually a very good question... I have no idea! I'm not sure if it's even possible. The biggest concerns in the screening process are: 1) Making sure that the patient is healthy enough to endure chemo. 2) Being certain that there are no existing or persistent infections in the patient's body that might cause a problem once the patient becomes neutropenic (sp?) or is without an immune system.

And your last question- The answer is that any patient being considered has to fit a certain criteria, as with all new treatments. Part of that criteria is trying and failing to respond to all 5-ASA medications, and failing to respond to at least two of the biologics (i.e.-Remicade, Humira, Cimzia, etc.). Also, you have to have been diagnosed with Crohn's disease for at least five years. Not sure the exact reasons behind these criteria but that's pretty much standard for any drug trial.

Hope that helps... my memory is terrible though, so if you want to do further research, send me a private message, and I could probably dig up a few sites for you. Also, if you look under Stem Cell in the treatment section of the forum you can find blogs from patients who have undergone the transplant, which is how I found out about it.
 
On a side note- I don't know your girlfriend's symptoms or the severity, but I can tell you that I wish, more than anything, that I had been given a chance to fight this disease naturally (diet, supplements, etc.). But, mine blindsided me, and within a month of diagnosis, I was in the hospital and given the "option" of either having my colon removed and living with a bag for the rest of my life, or getting on Remicade and being dependent on it, or other medications like it, for the rest of my life. Not much of an option. If she is genetically predisposed to it, and is starting to show symptoms, try to get her on board with the prevention route. Also, one of the most important things for new Crohn's patients to do is to figure out what their triggers are, and avoid them at all costs! For most patients, the biggest triggers are stress and certain foods.
 
Avw, Thanks so much for your in depth answer. Information is power. Damn those pharmaceutical companies, if they are dampening development of cures for all these diseases. I might have few other questions for you in the nearest future. And to answer your question, Yes her mom has Crohn's. Go stem cell treatments. Life is precious and amazing. It sucks that our world developed in such ways that making money is more important for companies than completely curing people. I am 100% sure it is possible with research. We're cloning people for christ's sake.

soon.
 
Indeed. I won't even get started on big pharma bashing because I'd be here all day!

On the upside though, most doctors I've spoken with about it do believe stem cells are the future in treating most diseases, especially autoimmune.

Within the next five years it should become much more accessible. Judging by the time it is taking me just to get in for an evaluation, they are busier than ever. So the research and the trials are being conducted as we speak, it just takes a little time for people to warm up to the idea, especially when they are undereducated on the topic of stem cells for medical use, and think that stem cells = abortions. Which is not the case, whatsoever.

These treatments are using adult stem cells only, the current focus being sibling donor transplants. So, hopefully one of my siblings will be a match, and test negative for autoimmune genetic markers. If not, the next best thing would be cord blood stem cells. And last but not least, you can actually use your own "cleaned" stem cells.
 
Avw has done a great job covering everything. My (unprofessional) two cents about your immune system not coming back: It would take another condition (like aplastic anemia) to prevent the immune system from returning. If your bone marrow is functioning properly, your immune system should be rebuilt. I'm not even sure if that would be a risk, anyway. Stem cell transplants are actually a treatment option for aplastic anemia so, if that were to be an issue, it might resolve itself.
 
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