Quote:
Originally Posted by Neil Cuadra
Coping1,
Having two experts give you differing recommendations puts you in a tough spot while making a major decision.
Aplastic anemia and hypocellular MDS look very much alike - symptoms of low counts and too few cells in the bone marrow. The lack of cells makes it hard to look for the cell dysplasia that would be strong evidence of MDS. The third biopsy could help with the diagnosis, although with a previous bone marrow biopsy result of "clear dysplasia" and ringed sideroblasts it's unclear to me why they haven't both decided it's MDS. It's true that if you have to have a transplant then it may not matter what disease you have, but the catch is that knowing what disease you have lets you know what alternatives to transplant you have.
MDS can be classified several ways and I think you should know what classification they'd consider you to have. The includes an assessment of the relative level of risk. That's a factor in deciding whether "wait and watch" is worth the risk that things will get worse if you don't act.
Have you considered taking copies of your medical records, including the previous biopsy results, to another doctor or treatment center for a third opinion? We each have our stories, but anecdotes from forum members here may not give you enough information compared with another expert who is looking at your full history. Your unconfirmed diagnosis, long-term autoimmune disorder, and sepsis incidents no doubt make you unique, and that's when expert advice is most valuable.
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Neil,
I have been to Johns Hopkins, Case Western & Cleveland Clinic twice for my other blood disorder/infections. The last visit to Cleveland Clinic was May, 2011 and they are the ones who first brought up MDS and suggested the BMB.
I probably will seek out a 3rd opinion if this 3rd biopsy is inconclusive, but in addition to dealing with this, I have monthly infusions and plasmapheresis for my autoimmune issues and am fighting infections every other week. The thought of starting with another Dr. seems daunting:/
My local hematologist has given me the diagnosis of MDS and the BM specialist I went to told us that in his "heart of hearts" he felt that it was MDS but is afraid that the BMT will be too risky because of my other problems. The only other treatment that has been mentioned is Vidaza, but neither one of them seem too eager to try that.
The Dr. in Nashville, was very upfront and painted a pretty grim picture-we felt kind of shell shocked when we left-but when he called later with the biopsy results he said there were just too many questions left unanswered and their whole team agreed that right now the risks out weighed the benefits and a 3rd biopsy was needed.
Right now my counts are pretty decent (last CBC hgb-8.6, wbc-1700, plt-86,000), so no decision has to be made immediately, but as my Dr. here says "we are always just 1 infection away from a crisis", so I would like to have a plan. They have already tested my brothers to see if they are a match and they are not-I think when I go to Nashville in Nov. they are suppose to have done a preliminary search of the national registry.
I know that it is best to get expert advice, but one can get so much from hearing about others experiences and being able to ask questions as they come up (and explained in terms I understand
Thank you so much for your answers!
~Coping