Newly Diagnosed

[Nancy D]

Hi all. I've recently been diagnosed with MDS. I have acquired this from prior chemotherapy for breast cancer. My red cells keep falling. My white cells are low but stable and my platelets normal.

I have Intermediate 1 MDS, RA. Normal chromosomes. I had my first transfusion a few weeks ago.

It seems I'm in the early stages, but I'm not sure if I'm asking my doctors the right questions as I don't have a lot of info I am reading on this thread. Maybe you can help me know what I need to ask??

The talk is going back and forth between needing a stem cell transplant and monitoring and getting transfusions. As of today and my most recent BMB which showed no change, the current plan is to monitor.

They said I'm being watched for now to see if I need transfusions too often, or if anything else changes then I'll need a BMT. They are searching for a matched donor. My only sibling is not a match. I was told on the preliminary screening I have a potential 3 perfect matches and 200 or so near matches, but they need to further search the compatibility and availability of these donors. Is there something I should be looking for/asking as my doctors do this search?

Thanks for any help you can give. I'm quite overwhelmed, and other than this very healthy!!!

Are there more specific questions I should be asking about my condition? I don't really have a handle on this, but do have confidence in my doctors.

[LynnI]

Hello Nancy
You need to read everything that you can, keep copies of all your tests etc and don't look at the old statistics on this disease.

Take care
Lynn

[Martha B.]

Hi Nancy,
I never had transfusions before my transplant, but I will recommend that you are treated at a hospital that is rated highly for transplants when you do find yourself in that situation. There are newer and better treatments being used all the time and those with the best ratings will treat you better too. If it's a matter of distance I say go the distance, and have someone with you who will advocate on your behalf during the time you are being treated, because there are times that you will not be able to do that yourself. I for one have had a transplant in the past year and I have come through it wonderfully. I hope the same for you!

[Nancy D]

I may be illiterate, but if you wrote me a private message, I tried to reply, but I think it got kicked, no clue why. I'll give a general response here in the hopes of helping..

My white counts have be low (1.8-2.2) since chemo in 2001. Then my red counts went down to the 11 range (hgn). for years no symptoms, just monthly shots.

a few months ago, the hemoglobin started falling. when it got to the low 9s, I was still feeling fine, but had a BMB that showed early MDS/RA. Soon after, it started falling markedly, and then I started feeling symptoms when it got in the 8s: shortness of breath, fatigue, leg muscle weakness. Got a transfusion when it went to 6.5 (I resisted before then). Waiting to see what happens next!!!! I'm 52 for what that's worth!! And otherwise very healthy!