Myelodysplasia Support Group

I have MDS. I have had 6 rounds of Vidaza beginning in January. This chemo is mild compared to many. I did not lose my hair and I do not have nausea. I do feel bad for about 5 days after the treatments - sort of like the flu...hot and cold flashes, dizzy, and weak. I then have 2-3 weeks that I feel normal (still weaker than before the chemo).

I am doing great. My blood counts are now normal. I may only have 2 more treatments. Then I can work on getting my energy back. When my white count was low I was nutropenic and could not eat any fresh food - everything had to be cooked.

I am in no pain. I have great faith that the Lord is watching over me. I am not worried or afraid. I am thankful that I have a wonderful dr. and good friends and family to help me when needed.

I am 62!

I am also on oral Vidaza. I was diagnoses with MDS with a subtype of CMML. I got to MD Anderson in Houston, TX as fast as I could from Illinois and have been very satisfied with my results. I am on my 3rd round of chemo with no side effects if I take the Zofran. I am on a clinical research trial as the oral Vidaza is not FDA approved yet. No more blood transfusions!!!! I am 60 years old.

ShanDar, so far I'm not on any treatment, not until my hemoglobin drops below 10.0 (was 10.0 last month!). My Dr told me that nothing I do or don't do will stop the progression of the disease. Of course, a healthy diet & lifestyle are going to mitigate the effects.

I'm not anxious, nor in pain. My only symptoms so far are tiredness & running out of breath when I dance too fast. I'm 70.

I gather you are not yet a senior?

My mother was diagnosed with MDS in Aug. 08. She was/is 59 years old. She underwent an allogenic bone marrow transplant at John Hopkins in February. The transplant is a difficult thing to go through - however she is now cancer free. She experienced a bit of Graft-Versus Host Disease of the gut, but she was treated with steroids and it has appeared to subside. She is still regaining strength and weight. Have you looked into the possibility of a BMT?

Dina...did they question whether your mother could have a bone marrow transplant? My doctor said this is not a possibility. I am 60 years old and questioned the doctor about this. I am at MD Anderson but would go to John Hopkins if this is a possibility.

Well, you have to be a candidate for a BMT. I think 60 yrs of age is the cutoff, anything older than that is risky. Also, you have to have a good bill of health (they run a gammut of tests.) Good dental hygiene as well, since bacteria is a concern after a BMT.

Getting a consultation at Hopkins can't hurt...

Dr. Jones is my mother's doctor.