[CAR]

Thank You for the info. I know I get ahead of myself. I wish I could see all the pros and cons of blood transfusions in one place so that I could be prepared should we get there.

[CAR]

I reread your post today. April is a tough month for me, especially Easter. My father died of lung cancer easter day. My Mother just died of Lukemia after having MDS for a short time and my father-in-law died in April. We just learned my husband has MDS though it is low risk MDS-RA with low blasts, only low red blood cells and no chromosomal abnormalities. It still scares me and after 32 years of marriage it’s unbearable to think that I might lose him at such a young age. We also just got hit with another diagnosis of COPD whcih is chronic, progressive and often fatal. So we are just learning how to cope with diseases that are chronic and life threatening. I didn’t think I would have to face this in my 50’s, but I guess it is never easy no matter the age.

Your sharing is brave and honest. It must be so difficult right now for both of you. I hope you can feel the prayers and love directed your way.

Chris

[CAR]

Judy

I totally understand where you are coming from in your posts. Keep the feelings flowing. We all understand and care about you and your hubby. It isn’t fair, it just is. None of us want this disease and I’m mad as hector that so little is known about it. I don’t see anything on TV about it. In fact until my mother was diagnosed about a year ago, I had never heard of it. My mother is terminal now with acute lukemia and my husband has the beginning stages: MDS-RA with no chromosomal abnormalities. I think somebody better wake up and realize that this disease is much more prevalent then anyone ever realized.

Chris

[CAR]

So Sorry for your loss. I will keep you and your family in my prayers. I’m glad his suffering is over, tough Texan or not.

Chris

[CAR]

Thank you all for the advise. The Doc says Alan has MDS-RA with no treatment (RBC is at 11.8) except blood tests every two months and B 12. However, the cytogenic test is not back yet and if it comes back with the chromosomes looking normal then it could be argued that this is not MDS at all but merely anemia related to low B12. That is what I’m hoping for. If it is MDS-RA for sure he is setting us up with City of Hope to look at the transplant since Alan is so young and in such good health. Anyway, the research we did ahead of time really was right on, albeit overwhelming, and we shocked him with our knowledge of the situation and understanding of treatment options. He is board certified in hemotology, oncology and internal medicine and we were right on top of everything thanks to this foundation and the other reasearch we did.

[Author]

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