Acute Myelogenous Leukemia (AML) Support Group

I had mylefibrosis which turned to leukemia. They wanted to do a stem cell transplant (STC) on me, but wanted the leukemia in remission first. I had "induction chemo", hard chemo for a week in the hospital, followed by three weeks in hosp. in recovery. This did not put leukemia in remission. For some reason, this round of chemo hit me hard. I got a pnemonia (I have asthma) and some blood clots around my pic line. A few weeks later, I went in for a second round of chemo for a week in hospital. I had very few side effects from this, and the worst part was sitting around "recovering" for three weeks in that tiny room with two kids at home! My leukemia still did not go in remission, so they scheduled me for a STC and told me I had about a 10 percent chance it would work. It did. It is 120 days from transplant, and I have no trace of leukemia in my system.

I got to know slightly five people who had SCT at the same time I did. (they had various cancers). All of us agreed the fear of it was worse than the actual experience. An STC consists of a week of chemo, at the end of which the put the stem cells in you just like they would give you a blood transfusion. It drips in like an IV and takes about 2 hours. The five people I was with all made it through and met again in "recovery". (You have to come in every day for awhile, then every other day, then every week, etc.) 4 of us got great results. One person still had leukemia when it was finished.

I encourage you to get a second opinion when you make big decisions. After Mayo Clinic Scottsdale wanted me to do a second round of chemo, I went to MD Anderson for a second opinion. They told me I was "chemo reisitant" and that they would suggest an experimental JAK2 inhibitor. I don't even have the JAK2 gene or mutation or whatever. I said, has that ever worked at putting leukemia in remission, and they said, no. I have two little kids and needed a decent chance to beat this. I went back to Mayo and my doctor, Dr Reeder, assured me I had a chance. And he was right. I shudder to think I might have gone with MD Anderson's recommendation. I would also recommend Dr Slack at Mayo Scottsdale.

Oh, and by the way, 3 of the 5 people who had SCT's with me were between 66 and 71 years old.

Anyhow, good luck in your journey.
Kathy
42 years old
Posted on 07/23/09, 12:07 am