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Old Mon Nov 10, 2014, 09:39 AM
Data Data is offline
Join Date: Sep 2014
Location: Florida
Posts: 245
AA&MDSIF Conference

My wife and I recently attended the last AA&MDSIF Conference of 2014. The conference was great. In addition to hearing from some of the top doctors in the bone marrow failure field we were able to sit down and talk to others who are in the same proverbial boat we are in. It was interesting to note the wide range of ages and differences in how the diseases affect people differently. A couple of the highlights of the meetings were:

DNA mutation testing is not currently the standard of care but will probably become so in the future.

The speed at which MDS evolves is prognostic of the severity quickly is worse than a slower progression.

One of the differences between AA and MDS is that in AA the bone marrow makes too few cells but the ones they do make are normal. In MDS the bone marrow also makes too few red blood cells and the ones they do make are defective.

The conference was very informative. I would highly recommend anyone who is concerned with AA, MDS, or PNH attend one of the conferences in 2015 if possible.
Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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Old Mon Nov 10, 2014, 11:23 AM
bailie bailie is offline
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
The difference between "quickly" and "slower" is interesting. Mine was "quickly" and so quick that I have never experienced the effects of MDS (RAEB-2) since I have had it. It has been a year since diagnosis and now I am feeling about the same as pre-MDS (following a SCT). I am keenly aware that this can change at any time and probably will. But it is interesting that through all of this I have only had additional platelets once when they dipped to 10, but no additional transfusions. My MDS seemed to have occurred within a 6 month period by looking back at previous blood tests.

Your observation that everyone seems to have a different story is consistent with everything I have encountered. That makes MDS interesting as well as very difficult.
Thank you.
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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