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Old Mon Oct 15, 2012, 10:15 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
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Quote:
Originally Posted by BrendaF View Post
Hello, I was recently diagnosed with MDS Refractory Anemia. This came as a huge shock to me and one which I am still finding difficult to believe as I struggle to learn the language and implications of this disease.
Most of us went through the same period of shock and realized that only by learning what was happening to us could we help do anything about it. Like you, my wife was diagnosed with MDS/RA. We were frightened at how serious a disease MDS can be, and only slightly relieved that MDS/RA is at the less-risky end of the MDS scale. Gather all the information you can, including from the Aplastic Anemia & Myelodysplasia Association of Canada, and ask all the questions you want.

Quote:
After the bone marrow biopsy, I was informed that chromosome testing would take 4-6 weeks. When I rang my Hematologist after 7 weeks, she checked with the Labs and was told it would take 2-3 MONTHS. Does anybody have a similar experience and if so, why would it take so long after I was told a far shorter timeframe? Thank you for your thoughts.
There's a certain amount of time needed to process and analyze the biopsy, so waiting a week or 2 isn't unusual, but the long delays you've been told about sound more like procedural delays. It sounds like your hematologist isn't part of a major treatment center and has to contract out the lab work, or maybe she can get it done only on a monthly cycle. Even then, I can't imagine what could take 3 months. If your hematologist is associated with a treatment center, you might try asking an administrator there about it instead of asking the doctor, or ask to be put in touch with the lab directly. It's awful for them to leave you hanging in the balance for so long, especially if your other lab results indicate that you should begin treatment soon.
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