MDS – Life Expetancy

[Royl]

Hi,

I am a 57 year old male.
Two weeks ago my hematologist, together with 4 colleagues diagnosed me with MDS.
I have also been diagnosed with ITP (low platelet count) and Multiple Myeloma back in 2006.
I have had a splenectomy for the ITP, chemo for the MM, 4 blood transfusions for anemia (low RBC) and 6 bone marrow biopsies.
I should say that I consider myself lucky in the sense that with all of the above I have been leading a pretty normal life with just minor bruising and just a bit of loss of hair (which is back now). I have not been sore and just a bit tired from the anemia.

However, with this latest diagnosis I’m not sure how to take it. What I have read up on MDS it could lead into AML which is extremely hard to cure/control.
My hematologist is pushing me towards a BMT (bone marrow transplant) which is very intrusive on one’s immune system. From posted articles these are only 30 – 40% successful, so I’m not too hopeful on this route, so I’m trying to convince my doctor to go for a stem cell transplant instead. This is much, much less intrusive and there’s a chance I can use my own stem cells without relying on a donor.

Even though everyone’s case is different, does anyone have an idea what is the life expectancy of someone with MDS?

Thank you all.

[Mary4Mike]

Royl,
MDS is such an individual disease. Everyones response to treatment and progression is different. As you can read from my signature, my husband had a stem cell transplant 3 years ago after "living" with MDS for 10 years. I don’t believe you can use your own stem cells with MDS. I know you can with MM. Do you have siblings that could be tested for match? Don’t read the statistics on the internet. Most of them are dated. Yes, there is risk with transplant, but there is also risk with the treatments. My husband was much sicker with the treatments (Dacogen for example) than he was with the transplant.

I know that many on here get upset with this suggestion, but another source of patient info is the MarrowForum.

All the best to you and keep asking questions!

Mary

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