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Old Mon Jan 30, 2017, 11:09 PM
Catl Catl is offline
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Join Date: Jan 2017
Location: Canada
Posts: 14
New member - father just diagnosed with MDS-EB-2

Hello all,

I have been a lurker for the past few weeks and have finally found the time to post a message. Thanks to everyone for posting messages and sharing information - it has been so helpful!

I am new to the Forum. As you can see from my signature, my father was recently diagnosed with MDS with excess blasts (previously RAEB-2, renamed since new 2016 WHO revision). It has taken forever for him to finally receive a diagnosis and the wait was brutal. We live in Canada and while it is great that we don't have to worry about private insurance, the system is bogged down and we have no choice but to wait (took almost 2 months to receive initial diagnosis). He also received an initial diagnosis of AML based on previous WHO criteria and was transferred to a large hospital to receive IC but the larger hospital re-did another BMB and they upgraded his diagnosis to MDS with excess blasts type 2 and are now recommending Vidaza. He has a total of 15% blasts but the majority of the blasts are erythroblasts (13%) and only 2% being myeoloblasts. He also has 70% erythroid precursors. Under the old WHO classification he would have been diagnosed with Acute erythoid leukemia. It's kind of scary that 6 months ago he would have received IC but that now he will be receiving Vidaza instead. I hope that the hematologists made the right call.

With respect to the Vidaza, I am wondering if anyone can help me with a concern that we have. His blood counts have been very low since Nov. He basically has required HGB transfusions every 7-10 days and has also been having platelet transfusions every 4-5 days for the past month (HGB generally around 80 or less and platelets have gone as low as 6 (generally between 10-19). I read that with Vidaza, it can get worse before it gets better. He will be having the Vidaza administered as an outpatient. I'm really concerned that his levels will get so low that it will put his life in danger. He has been relatively in good shape given his condition, but if it gets worse for him, will they be giving him transfusions more often? Should he not be kept at the hospital so they can monitor him closely? Has anyone received Vidaza while having such low blood counts?

Any insight anyone may have would be greatly appreciated!

Thank you,
CatL
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Catherine, father age 65 diagnosed Jan. 2017 with MDS with excess blasts (MD-EB-2); starting Vidaza on Feb. 6th 2017.

Last edited by Catl : Tue Jan 31, 2017 at 07:29 AM.
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