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Old Sun May 31, 2015, 09:32 AM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Hi Franscib - I understand your fear - especially with so many family members stricken with cancer - try not to let the fear overwhelm you - there is plenty of reason to remain hopeful.
The doctor you describe sounds like a general oncologist, not a specialist in blood/marrow disorders - if you can, I suggest you find a hematologist/oncologist specializing in MDS - if possible, try and get a second opinion at an MDS center of excellence http://www.mds-foundation.org/mds-ce...of-excellence/

When they did the BMB did they also do cytogenetic studies to see if there were genetic mutations? if not they should have - some mutations impact prognosis and treatment options.

Don't know what she meant by low dose chemo - the frontline drugs in treating MDS are Vidaza and Dacogen - they both act similarly on the disease and can put some people in remission or at least improve their blood counts. These drugs are not a cure but can work for a period of years - or can be used to put you in remission in preparation for a bone marrow or stem cell transplant. -- transplants can be curative and you age alone should not disqualify you - there are different types of transplants. There is another drug, Revlimid that is used in MDS the is very effective for a specific type of mutation - there are also studies using it alone or in combination with Vidaza in patients without the mutation.

MDS is somewhat rare and, if possible, its important to find a doctor who has experience with the disorder and access to the latest information and treatment options.

Stay positive and enjoy everyday as best you can -
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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