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Old 01-15-2013, 09:02 AM
4-eyes 4-eyes is offline
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Join Date: Aug 2009
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4-eyes 4-eyes is offline
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Join Date: Aug 2009
Posts: 642
10 yr Member
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Hi Juanita,

Sure, I'll answer your questions:

1. I had it done at UTSW in Dallas. This is my regular neuro's office.

2. Yes, there was a list: refractory MG, debilitating weakness, treatment failure of at least 3 previous drug trials. In addition, I had many, many labs run to test for all sorts of viruses, blood diseases, kidney and liver function HIV, etc. I also had a chest x-ray and a MUGA scan of my heart to make sure it was functioning adequately and to get a baseline in case there was damage from the chemo. In my case, I was pretty darn healthy, aside from the severe MG. I don't think they would accept a smoker, someone with diabetes, or someone extremely elderly or bed/wheelchair bound.

3. This was not a transplant--but close. One of the nurses called it a "transplant without harvest." The cytoxan kills all but one specific immune cell. The immune system regrows from the embryonic cells of that particular type that is left (with the help of drugs, of course.)

If you want to try for the whole enchilada, they are doing stem cell transplants as part of a trial in Chicago, at Northwestern. They use your own cleaned stem cells that they harvest a few weeks before killing your immune system.

Good luck going without any immune drugs after your final infusion. I am curious to see how it works. As it is with me, I still use MG drugs, and have since about a month after the reboot. The only difference is that now they actually seem to work, whereas they never really did before the reboot.

Good luck and keep us posted!
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AnnieB3 (01-16-2013)