Scared

[ang]

just found out I need a sct. going to st francis in indianapolis. reading about low survival rates and terrible side effects. any advice would be apprecated.

[Neil Cuadra]

ang,

Stem cell transplants have a better and better track record every year. There are good reasons to worry about any procedure that has risk, but don't be fooled by statistics that were gathered years ago, before the latest procedures, techniques, drugs, and knowledge were available.

You may find useful information at the Indiana Blood and Marrow Transplantion website. They are partners with St. Francis Hospital.

What was your diagnosis? Who is your donor?

[ang]

my diagnosis is
CLL, coexing MDS with a rising blast count, and red cell transfusion dependent.
Both my brother and sister are matches.

[ang]

i would like to hear about anyone's experience with stem cell transplants. I do not have to have radiation but intense chemo.
thanks.

[Neil Cuadra]

ang,

You'll find some descriptions of the transplants of forum members in our Transplants forum.

I can give you a general outline:

You'll have a certain number of days of chemo, to destroy your diseased cells, essentially removing your faulty immune system. They may then have you wait a day or two before the next step: the transplant itself.

Meanwhile, your brother or sister will receive injections of Neupogen or a similar drug, which causes stem cells to move from the bone marrow to the circulating blood, where they can be easily extracted.

On the scheduled transplant day, you'll be given the stem cells from your sibling. It's just like getting a transfusion.

Then comes the phase where you wait for the new stem cells to move into your bone marrow and engraft, i.e., take over and become your new immune system. You are at high risk for infection before and soon after engraftment, until your white cell count builds up again, so they will keep you as protected from infection as possible. You may need blood and platelet transfusions until those counts rebuild too.

Side effects vary quite a bit from patient to patient, e.g., very sensitive gums, loss of hair, nausea, and other discomforts that will be dealt with symptomatically as you begin the recovery phase. The biggest risk is graft rejection, but that's less likely with a sibling donor. If that does happen, a second transplant might be the backup plan.

[Lori Patrick]

Ang, I had my transplant at IU January 11. Let me know what questions you have and I can give you my experience. My brother was a perfect match and I am without any problems as of now. Did have a bit of diarhea a month ago which they think was gvh - took prednisone and went off immune suppresant drug and it went away. I had the non radiation transplant. Good Luck and try not to worry too much. Lori

[squirrellypoo]

Hi Ang.

You can read my thread in the Transplants forum for my play-by-play story, but I'm only a month and a bit away from celebrating my 2 year rebirthday, and I'm running a 10k race in two weeks' time! I just had a checkup with the haematologists this morning, and they really are at a loss as to what to do with me at these appointments these days, since I've got precious little to complain about. It's amazing that exactly 2 years ago, I was getting four transfusions every single week just to stay alive, and now I'm out there running for a good hour straight without stopping, trying to beat my pre-illness running times!

The transplant road ahead will be really tough, but it is possible to come through it and regain a healthy life afterwards.

melissa