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Old Fri Apr 2, 2010, 08:05 PM
bun bun is offline
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Join Date: Mar 2010
Location: Lakeville, MN
Posts: 4
BMB and Mayo Clinic

I agree with Neil's response. Mayo is an MDS Center of Excellence, so their pathologists definitely see more examples of bone marrow failure "marrow" than other hospitals. I'm relating my husband's story that includes Mayo.

Sometimes it takes awhile for a definite diagnosis of MDS. If there are no chromosomal abnormalities, there isn't a "smoking gun" to say definitely a patient has MDS. Pathologists & Hematologists don't want to mistakenly diagnose MDS. Sometimes it takes looking at changes over time before a diagnosis is made. It took 5 bone marrow biopsies over the course of 2 years before Mayo pathologists were comfortable saying my husband has MDS.

My husband's local clinic is in the Minneapolis, MN area. His first BMB wasn't sent on for a 2nd opinion, but a few months later his 2nd BMB was. Still no official diagnosis, but it was helpful to know experts at Mayo agreee with his local pathologist & hematologist. From that point on, his BMB slides were seen by both places. From the start, MDS was suspected ... as was the posibility that an autoimmune condition could be causing his bone marrow problems ... or that his condition was very early stages of an eventual lymphoma.

For your father in law ... Learn what you can about MDS & other bone marrow failure diseases. Ask many questions of his doctor to understand. If a BMB is inconclusive, understand why & what will be done to monitor further.

Your father in law may want to be seen at an MDS center of excellence at some point in time. For my husband, we did that after 1 year & a 3rd BMB & things were still inconclusive. I would highly recommend Mayo for hard to diagnose problems or as a second opinion. They are world renown.

We have been very pleased with how my husband's local hematologist & pathologists and Mayo hematologist & pathologists work together. We know an eventual stem cell transplant will occur at Mayo. Now we are looking to the experts for help in identifying when. A general suggestion: if a SCT is possible in one's situation ... get testing done to find a donor. The availability, etc likely will impact decisions related to timing.
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Beth, wife of Tom 48 - MDS (no chromosome abnormalities) suspected since 1/2007, confirmed in 2008. Vidaza since Jan 2009 with excellent results since June 2009.

Last edited by bun : Sat Apr 3, 2010 at 12:56 AM.
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