Newly diadnosed MDS RAEB-1

[Lisa Z]

I was just diagnosed 3 weeks ago with MDS, RAEB-1. This was a change from a diagnosis of apalstic anemia 3 months ago. For 1 year i have had low counts all around...red, white, platelets.

I had my first transfusion of packed red blood cells Sept. 19, and my 2nd transfusion on 11/8.

My white count fluctuates in the low to mid 3's.
My hemoglobin was 6.3 for my first transfusion, and 7.0 for my 2nd.
My platelets fluctuate between the high 40's and low 50's.

I was fine w/the Aplastic Anemia diagnosis. Basically told to "wait and watch". Now, of course, much more concern. I am having another biopsy tomorrow to confirm the last one....make sure it was not a "fluke".

this is my 5th BMB in less than 1 year. I'm getting used to them, but in truth, dread them.

I am not sure what path to take from here. Treatment or BMT...I do have an exact match sibling......so many things to consider it is overwhelming....literature says only CURE is BMT, but there are many risks like GVHD, which you can die from. Treatments may help you for number of years, but sounds like MDS will ultimately return. I am turning 54 in 2 months. Do I just go for the BMT or try treatment for a while. When will insurance say I'm too old for BMT....don't want to miss that window....etc., etc.

anyone recently diagnosed, or who remembers all the confusion at the start, I'd love to hear from you. Also survivors!!!!!

Thanks in Advance!

[Birgitta-A]

Hi Lisa,
Since it is 2.5 years since I was dx and I am too old for stem cell transplantation I don´t have any good answers to your questions. Still many members have been in your situation and if you search "sct" at the meny I hope you will get many answers .
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal 4 days with transfusions for ironoverload, Neupogen 2 injections/week for low white blood cells, asymptomatic

[Cathy]

Hi Lisa,

I was about your age when I was first diagnosed with MDS -- RCMD and 2 years later it progressed to RAEB 1. My brother was a perfect match and after much deliberation, I decided that the SCT was the best option for me. My platelets were extremely low and I was having transfusions every few days -- and once I had a transfusion in the morning and needed to go back for another one in the evening. The transplant offered a possible cure and I was concerned that other treatments might weaken my organs and make a transplant more difficult later. I had my transplant in February and it was easier than I expected. I returned to work full time at the end of August. Everyone's experience is different, but I am glad I did the transplant

[Beth I]

Hi, Lisa.

I am in the same boat as you. Your numbers are a bit lower than mine, but low nonetheless. I, too, have a matched sibling. I'm 47. So, I've been told that the decision to go forward with the BMT is mine and that, I think, is a terrible decision to have to make - what if you guess wrong? I wish I could tell you that I have come across some sure-fire way to know the right thing to do. I can tell you that I have gotten several "second" opinions. All they can tell me is that they can't really tell me anything. But at least it helps to get more information so that you aren't necessarily groping in the dark. That, I think, is your best ally in all of this. For me, I may have to decide to have the tranplant if only because I can't live in limbo like this for too much longer, waiting for things to get worse. It takes a huge toll.

I'd like to compare notes as you go through your process.

All the best,

Beth