Non-myeloablative Transplant

[Lori Patrick]

I would be interested in hearing from anyone who has had the Non-myeloablative transplant. I am 52 with no health issues except the MDS. I've never had cancer. Any information you can give would be appreciated. Thank you. Lori

[Mary4Mike]

Lori,
This is the type of transplant that Mike had. His pretransplant chemo drugs were Fludarabine and Busulphan. They called it FluBu2. He had no radiation. The first transplant center we consulted wanted to add radiation, but U of M felt it wasn't necessary. Each case is reviewed by a board and this was the regimen they came up with for him. He also did a clinical trial for GVHD. He took Vorinostat prior to transplant and I believe for 100 days after in a pill form.

He did his pretreatment in the hospital and had absolutely no ill effects. His taste kind of went away for a few months, dry mouth, but no nausea at all. He also lost his hair around Day 8, I believe. The main GVHD he experienced was the dry mouth and eyes. He had to have his tear ducts cauterized and this really helped. They explained to us that they want a little GVHD because this has an antileukemic effect.

His transplant date was Octobr 1, 2009 and he is doing great. His HGB last week was 17.8! The doctors call him their poster child for transplant. I pray that you will have as great of success. He still takes a low dose immunosuppressant - sirolimus, acyclovir, and actigall. We are into supplements, so he takes several of those too.

I am happy to answer any questions you may have about this.

Mary

[Lori Patrick]

Thank you for the reply Mary. My doctor didn't mention the drugs prior - he is the head of this "mini" research at IU Hospital and he says they are equal when it comes to relapse. I was set up for the standard treatment (radiation/chemo) but he really was pushing for the mini. He said that is all older patients or patients who have other illnesses can handle, but he really believes it is the best way for everyone.

I guess it is scary not having that extra coating of cleaning the house out with radiation. But radiation can make you so sick...... They are checking with our insurance to see if they will cover the mini since it is in clinical trial. I will know Monday. In the meantime, I'm leaning to the mini. I'm going to ask about the pill you mentioned. He did say I will get 7 days of chemo at a lower dose than I had last month.

Lori

[Mary4Mike]

Lori,
It is interesting how everyone looks at things differently. We were actually greatful that Mike didn't have to have radiation. We felt there was too big a risk of it triggering another type of cancer later in life. I am surprised to hear that they consider a mini transplant a clinical trial. They never told us that and Mike did not have to sign the paperwork required for a clinical trial. He did sign "clinical trial" paperwork for the Vorinostat. Perhaps the pretransplant chemo drugs are something they are doing a clinical on.

Are they leaving the decision up to you about doing a mild versus a total ablative transplant? This is so much info to process in such a short span of time for you. Your head must be reeling. If they are, do your research, pray about it, and make your decision.....then you can concentrate on getting this thing over with and getting on with your life!!!

Let us know what you decide. I am hear to answer questions about our experience.

Mary