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4-eyes - question on reboot

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Unread 01-14-2013, 11:27 PM   #1
Juanitad
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Hi 4-eyes - I had my next to last cytoxan infusion today and the oncologist and I were talking about where I go from here - He has been in contact with the Vanderbilt doctor who recommended that I do the Cytoxan and the concensus seems to be that we'll do that last Cytoxan in March and then wait to see what happens from there - no immune suppressents of any kind. I told him a little bit about your re-boot but I didn't have all the details at my fingertips.

My questions are: Where did you have the reboot done? Were there a list of criteria before they would even consider you? Was this actually a bone marrow transplant? If so, whose bone marrow did they use?

Sorry if you've already posted this info, but I can't seem to find it - probably a problem with my search, not the website.

Thanks for your help!
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Unread 01-15-2013, 09:02 AM   #2
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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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Unread 01-15-2013, 03:59 PM   #3
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Thanks - that's exactly what I neede to know. I will see my neuro about a week after my final cytoxan infusion and I'm sure we'll discuss it all then.

BTW, I'm a type 1 diabetic but wear a pump and have had great control for about 20 years. I'll definately talk to my endo before I even think about going further.

Thanks again and I admire you for being willing to take this step and share it with us here.
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Unread 01-15-2013, 05:39 PM   #4
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No problem...just hope you don't need to consider it at all! It's brutal!

I think the diabetic stuff is due to the increased infection risk, as well as the instability of sugars during the nausea/vomiting part of the whole thing. I went days with very little intake, and I can see how that would be risky for a diabetic. Also, when the blood counts are hovering around zero, they really want to keep skin puncturing to a minimum due to bleeding and infection risk. I'm sure there are other "cellular" reasons why, too, about which I don't know.

Good luck!
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