new mds patient

[Allan Romriell]

I am a 64 yr old male diagnosed in june with MDS the RARS variety. A routine physical in april showed low blood counts and I was referred to a Hematologist/Oncologist who ordered a Bone Marrow Biopsy which confirmed the disease. For now I appear to be one of the “lucky” ones and am on a monitor and wait basis. Since june my hemoglobin has varied from a low of 11.4 to high of 12.1. Platelets have been 98,000 to 154,000, white blood count has been steady and normal, so Dr is pretty happy and will see me again in Oct.
I would love to hear from any one who has this particular variety of MDS and some of your experience and advise, anything that has been a help in managing it etc. Like most of you who have commented on this forum, I was pretty blind sided. Just living my life and had felt maybe a little more tired than I thought I should but chalked it up to getting older. Thanks for listening, god bless us all.

[Sherry Pratt]

I was diagnosed with same disease 3 years ago. I too was a wait and see. Had I waited much longer I was told this would have become leukemia. In Jan I had a stem cell transplant using my sisters stem cells. She was a perfect match. My hemoglobin got as low as 6 prior to this? I went to the cancer treatment center of America in Zion, Il. I highly recommend this place. I am now in remission. HGB is now 13.

[Allan Romriell]

Sherry,
I am glad you are doing so well. I had seen your name in other posts and wondered how you were. How long did it take you from the wait and see to a treatment stage. I know it can stay that way for a long time or turn rather quickly. I of course hope for a long wait and watch phase but I feel like a ticking time bomb sometimes wondering when I will go off. Thanks for your response, and hope for your continued remission/cure. That is good news. I am a few hours from the Huntsman cancer center in Salt Lake City. They are a top flight cancer center and if need be I will go there. I am very happy with my Oncologist right now, I feel he is on top of my case so I will wait and watch for now.
Thanks again

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