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Old 07-23-2009, 11:41 PM   #1
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Join Date: Jul 2009
Location: Scottsdale, AZ 8525
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kathydeang HB User
Successful stem cell transplant

I have secondary AML (leukemia), stemming from Myelofibrosis, and had to have a STC. I wanted to post because others' posts helped me when I was looking for info. I am 44 years old.

I went to Mayo Clinic Scottsdale where they recommended I have chemo to try to get my leukemia in remission before the STC. This would "up the odds" of it being successful. I had a month in the hospital, a week of heavy chemo followed by three weeks of recovery. This first time was the worst experience ever. I have asthma and got a pneumonia right away. My pic line clotted several times. It was miserable. Unfortunately, my leukemia did not go into remission. Mayo recommended a second round of chemo and another month in the hospital. I was not sure it was the right move, and I think everyone should get a second opinion when making a big decision, so I went to MD Anderson. My doc there had no bedside manner whatsoever and told me bluntly that, since I was "chemo resisitant", the chances of anything working were so slim that I should take a JAK2 inhibitor instead. (I don't even have the JAK2 gene or mutation or whatever.) I said, has that ever worked at getting anyone's AML into remission? He said, no, it hasn't been tested, but wouldn't it be great to see what it did? Well, the short answer was, no, that wouldn't be great. My doctor at Mayo had already assured me I had a chance to beat this, and with 2 small kids, I was will to go through about anything to have that chance. I thank God every single day that I went back to Mayo and didn't go with MD Anderson's recommendation. I went through the second week of chemo followed by three weeks in the hospital. This time it was fine, no big side effects, and I just got stir crazy being in there while I felt good. Unfortunately, again, the leukemia did not go in remission. This brought my odds down from about 35% to about 15%. I had the stem cell transplant, another month in the hospital, and I am happy to say that was 120 days ago and I don't have a trace of leukemia in my blood or marrow.

The actual stem cell transplant is kind of a non-event. It is like a blood transfusion. There is a bag of stem cells, which look like blood, and it drips through and IV into your vein for about 2 hours. However, it is preceded by a week of chemo and you are in the hospital for about three weeks recovering, and then you are at the hospital as an outpatient every day, then every other day, then once a week, until 100 days. They watch you very closely, and it is a long recovery. I did not have any complications after the stem cell, nor during the recovery. There were 5 other people I met having transplants at the same time, and all of us agreed, the fear of it is much worse than the actual process. 3 of those people are 66 Through 71 years old. If my leukemia becomes active again, I would not hesitate to have another stem cell transplant.

I would strongly recommend my doctor, Dr Reeder, or Dr Slack, if you end up needing a transplant.

I also posted this on the leukemia and lymphoma society web site, which I recommend.

Good luck in your journey,
Kathy

 
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