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FAQs: Dave's stem cell transplant—the risks, the costs, the benefits(?), and more
The mere mention of stem cells for multiple sclerosis conjures up a dreamy future free of MS where we all dance among the flowers with harps playing in the background. But that's not reality—that's just the side effects of the stem cell hookah too many people have been smokin'.
After undergoing a stem cell transplant in March, I wanted to answer common questions that will hopefully clear up some misconceptions and better explain the risks (and hope) of SCTs. (Details of my experience will come later.)
What kind of stem cell transplant did you get?
I received an autologous transplant, which means they used my own stem cells, which they harvested from my bone marrow. This is safer than using stem cells from a donor, but may not be as effective as using, say, embryonic cells, which has ethical concerns and so is not being studied at this time.
What kind of time commitment is necessary to get an SCT?
Expect to spend 3-4 weeks in the hospital, and several weeks before and after for prep and follow-up. When all is said and done, I will have spent 3 months in Houston, all the while missing my home in Albuquerque.
How dangerous is getting a transplant?
The consent form I signed listed the risk of death as high as 5%. In actuality, it is closer to 1 percent, perhaps even lower when done at an experienced facility like MD Anderson.
What makes it so risky?
Because chemotherapy wipes out the immune system, your body will struggle to defend itself against even a minor infection. My immune system won't return to normal for about a year. The next six months will be risky, but the first three months will be riskiest: I will have to avoid crowds and wear a mask in public. And because I got chemo, the risk of blood diseases (like leukemia) are much higher over the next decade... um, and it makes you sterile.
How expensive is a typical SCT?
A boatload, or should I say yachtload. In the US, expect to pay $150,000+. Few insurance companies will pay because it is considered experimental. I know of others who have gotten it done in Europe for under $100,000.
What hospitals in the US offer SCTs for MS?
None. To get an SCT, you need to participate in a clinical trial.
I still may be interested. What would make me a good candidate?
You need to be fit and be able to walk at least a little bit. Successful recovery is tied to exercise and getting out of bed. Early SCT studies focused on those more disabled (including those with PPMS and SPMS) and the risk of death and serious complications soared. Hopefully safer SCT treatments will be available in the future, but it's not there yet.
I've heard of people going to Costa Rica or Israel for stem cell treatment. Is it the same?
No. Those are stem cell infusions. The immune system is not ablated by chemotherapy, meaning it is far safer and much cheaper ($30,000 or so). But the effectiveness of such treatment is highly questionable and there have been no studies on infusion-only therapy.
What's the benefit of an SCT?
Researchers theorize that by "resetting" the immune system with chemotherapy and cleaning the stem cells of the potentially MS-causing T-cells before reintroducing them to the patient, MS will be stopped in its tracks. No more damaging T-cells, no more relapses, no need for any MS therapy. There have also been frequent reports of repair (in some cases dramatic repair) but that is not necessarily a typical result of the treatment.
After undergoing a stem cell transplant in March, I wanted to answer common questions that will hopefully clear up some misconceptions and better explain the risks (and hope) of SCTs. (Details of my experience will come later.)
What kind of stem cell transplant did you get?
I received an autologous transplant, which means they used my own stem cells, which they harvested from my bone marrow. This is safer than using stem cells from a donor, but may not be as effective as using, say, embryonic cells, which has ethical concerns and so is not being studied at this time.
What kind of time commitment is necessary to get an SCT?
Expect to spend 3-4 weeks in the hospital, and several weeks before and after for prep and follow-up. When all is said and done, I will have spent 3 months in Houston, all the while missing my home in Albuquerque.
How dangerous is getting a transplant?
The consent form I signed listed the risk of death as high as 5%. In actuality, it is closer to 1 percent, perhaps even lower when done at an experienced facility like MD Anderson.
What makes it so risky?
Because chemotherapy wipes out the immune system, your body will struggle to defend itself against even a minor infection. My immune system won't return to normal for about a year. The next six months will be risky, but the first three months will be riskiest: I will have to avoid crowds and wear a mask in public. And because I got chemo, the risk of blood diseases (like leukemia) are much higher over the next decade... um, and it makes you sterile.
How expensive is a typical SCT?
A boatload, or should I say yachtload. In the US, expect to pay $150,000+. Few insurance companies will pay because it is considered experimental. I know of others who have gotten it done in Europe for under $100,000.
What hospitals in the US offer SCTs for MS?
None. To get an SCT, you need to participate in a clinical trial.
I still may be interested. What would make me a good candidate?
You need to be fit and be able to walk at least a little bit. Successful recovery is tied to exercise and getting out of bed. Early SCT studies focused on those more disabled (including those with PPMS and SPMS) and the risk of death and serious complications soared. Hopefully safer SCT treatments will be available in the future, but it's not there yet.
I've heard of people going to Costa Rica or Israel for stem cell treatment. Is it the same?
No. Those are stem cell infusions. The immune system is not ablated by chemotherapy, meaning it is far safer and much cheaper ($30,000 or so). But the effectiveness of such treatment is highly questionable and there have been no studies on infusion-only therapy.
What's the benefit of an SCT?
Researchers theorize that by "resetting" the immune system with chemotherapy and cleaning the stem cells of the potentially MS-causing T-cells before reintroducing them to the patient, MS will be stopped in its tracks. No more damaging T-cells, no more relapses, no need for any MS therapy. There have also been frequent reports of repair (in some cases dramatic repair) but that is not necessarily a typical result of the treatment.
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