[Chad S]

My wife's initial diagnosis at Baylor in Dallas was that she had AML coming from MDS (she had 20% blasts). However, we got a second opinion at MD Anderson and they said they wanted to treat her for MDS, not the AML.

The key difference here is that Baylor wanted to go straight to the AML chemo protocol. Which is a very heavy dose of chemo (hospital 4 to 6 weeks) which has a good chance of bringing you into remission. Then when in remission you follow up with another round of chemo. If relapse occurs, you go to transplant.

MD Anderson, in my opinion, thought more outside of the box of a protocol and more about long term reality. They told us that yes, the initial heavy chemo would most likely bring about a remission, but due to the underlying MDS she would most likely relapse. Meaning that eventually a transplant was in her future. And if that is the case, the initial blasts of heavy chemo would only weaken her body for the inevitable transplant (and the chemo that comes with that). So they recommended she go straight to a trial chemo followed by transplant asap.

The trial chemo is called SGI 110. It had very low side effects. She did not lose any hair and never threw up and was not hospitalized. Her quality of life was very good during this time, and it worked! She went to below 5% blasts within two months and had her transplant at 3 months. Each round of SGI 110 is a 28 day cycle, so she had three cycles.

The key takeaway here is that she was in excellent health when she began the pre-transplant chemo, which has lots of side effects. It was the same as you hear about all the time with the hair loss, mouth and throat sores, nausea, etc. But it was her body's first big hit, not it's second or third.

If you have a high risk case of MDS, it might be worth asking about the likelihood of a transplant and if it is a very high likelihood ask what treatment you will have prior to finding a match. There are treatments like SGI 110 that are much less abusive to your body and can leave you in better shape for the real battle that lies ahead.

I am not a doctor, so you should find a hematologist that you trust and go with whatever they say. I know just enough about this stuff to be dangerous, so this is just based on our experience.

May God be with you on this journey.
Chad

PS: My wife goes for her 9 month post-transplant follow up at MD Anderson in 2 weeks. She is now completely off of her immunosupresant (tacrolimus) and is doing well.
Chad