My name is Suzanne and my 66 year old mother was just diagnosed with MDS.
She had follicular lymphoma 4 years ago and was very lucky in beating that with just radiation. She see her hem/onc every 3 months to monitor the lymphoma. The MDS was found after a blood test where her hemoglobin was at 9. They did some blood work and a bone marrow biopsy. He was pretty evasive and told us not to worry about it, that she was a very mild form of the disease with no chromosome abnormalities. I don't have all the particulars that eveyone lists on here, when she goes for a follow up on May 8th I will get copies. My mother really doesn't think she has anything wrong with her of concern, and I think we will leave it that way for a little while. Like I said, the doctor made it sound like it wasn't a big deal.
I guess what has me so depressed is what I am seeing about median survival with this disease. Is it really 4 years at best? If you have a mild form of MDs does it eventually convert to a more aggressive form? I feel so helpless with this. Thank you for listening!