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  #1  
Old Tue Aug 9, 2016, 09:10 PM
disco3md disco3md is offline
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Smile Wife Diagnosed w/ AA

Hi - new member to the forum. My wife was diagnosed with AA today.
her doctor suggested a clinical trial at NIH. I'm not sure about that, I concerned about the "trial" part?? I may want to get her treatment at another center in the DC area - Georgetown & Johns Hopkins have good treatment for AA? Any input or advice on next steps would be greatly appreciated
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Old Tue Aug 9, 2016, 10:15 PM
Neil Cuadra Neil Cuadra is offline
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disco3md,

I'm sorry that your wife has this illness.

Have they told you the severity of her aplastic anemia? There's an important distinction among moderate aplastic anemia (MAA), severe aplastic anemia (SAA), and very severe (VSAA) aplastic anemia.

If it's MAA, you have a number of approaches to take, including waiting and watching to see what happens over time, transfusions if her blood counts are sometimes too low, or maybe drugs that boost blood cell production.

If it's SAA or VSAA, it's more serious and likely requires stronger action. For SAA, you can look at this article, in particular Figure 1, to see the typical decision-making that goes into choosing a treatment approach (such as choosing between an immunosuppression treatment called ATG or a stem cell transplant from a brother or sister). However, your wife may have unique circumstances that influence the recommendations you'll get.

I wouldn't jump at a clinical trial without knowing more. What classification is the aplastic anemia? What treatment, if any, do they recommend if you aren't in a clinical trial, and why? What clinical trial are they referring to? We know that trials benefit science and medical researchers, but how would it benefit your wife, and how would it affect the risks?

Have you started reading about aplastic anemia to get an understanding of the disease, symptoms, and treatments? You can read about it at this site or start here at the website of the Aplastic Anemia & Myelodysplastic Syndromes International Foundation (AA&MDSIF), which is the largest patient support organization for aplastic anemia.

The medical centers at Johns Hopkins and at the University of Maryland have a lot of experience treating bone marrow failure. Closer to DC, so do Georgetown University and NIH. NIH has some of the world's foremost aplastic anemia experts doing the clinical trials.
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Old Sat Aug 27, 2016, 02:13 PM
disco3md disco3md is offline
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thanks for the feedback really good insight and info. my wife has moderate AA, we got a 2nd opinion at NIH to confirm. Her numbers did make her eligible for treatment at a study @ NIH which is what we decided to do for a number of reasons. We'll see how well see reacts to the treatment, hoping it works.
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