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Patti: My heart goes out to you both. Both Bruce and I were in kind of a daze for a couple of months after he was diagnosed with MDS. It was confusing to me that your oncologist referred Dean to hospice before initiating treatment. The life expectancy figures Dean's doctor might have based the hospice referral on were developed before most of the present treatments were available. As Greg said, a number of people with Dean's diagnosis have responded well to treatment. There was a recent post in the forums by someone who was diagnosed with RAEB-T 5 years ago.
I would just like to echo some advice given by others. When things settle down for Dean a bit, please encourage him to see an MDS/AA Specialist. We call our local oncologist Dr. Doom. We have had much more encouraging experiences with the specialists we've consulted. Doctors who specialize in bone marrow diseases have a different perspective than oncologists who treat a wide variety of disease. Also, different pathologists will often interpret the Bone marrow biopsy differently. That was the case with the most recent BMB (Bone marrow biopsy) Bruce had. One said Bruce had MDS, another said he didn't. The bottom line though is that Bruce has low blood counts which he needs continuing treatment for.
It's important not to give up hope.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
Last edited by cathybee1 : Sat Jul 7, 2012 at 06:45 PM.
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