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Old Sat Oct 4, 2014, 05:24 PM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
Overview of aplastic anemia treatment...

Hi Data,

I am sorry to hear of your possible diagnosis, but glad you found this forum. I want to preface all I say below with the disclaimer that I'm just a patient, so though I believe I am on the right track, I'm not technically qualified to be fully confident on this.

I strongly agree with Steve that you'd be well-advised to 1) empower yourself to ask the doctor educated questions about your condition and possible treatments, and 2) get a second opinion.

I think it is crucial when talking with the doctor to flesh out her level of expertise & previous experience in treating aplastic anemia. To be honest, I've heard several unsettling stories of aplastic anemia patients being treated with a brutal combination of arrogance and incompetence by doctors who know very little about this disease. Aplastic anemia is a very rare & mysterious condition that can run several possible courses, and as such there is no substitute for extensive previous experience in treating it. A given hematologist may be quite good at treating leukemia for example, may be a perfectly competent doctor, yet still not be qualified to treat an aplastic anemia patient due to lack of experience with this particular condition. And I am afraid under those circumstances ego often gets it the way, and the said doctor doesn't humble themselves in the face of what they don't know, doesn't refer you to or even consult with the proper expert on crucial treatment questions.

I believe Dr. Neil Young from NIH, the pioneer of ATG/CsA treatment, would agree with the jist of what I just said above, although he puts it in more polite non-accusatory terms. To paraphrase what he says at the end of the video below "there are very few excuses today for aplastic anemia patients not to be seen at a center with deep expertise & experience treating this condition".

https://www.youtube.com/watch?v=02rvFOFYOVw

All that said, in some cases even the best experts can disagree on treatment paths in aplastic anemia. There was an article on the AAMDS website a while back (I highly recommend AAMDS, they are a wonderful resource) about a family whose child has SAA. They took the child to see some top experts, and were left with contradictory treatment suggestions. In that case, I personally wouldn't blame the doctors at all. Rather, unfortunately the science isn't always established enough for even the best SAA doctors to have a unity of opinion. And in this situation, disagreement is a good healthy thing I believe, the discourse helps advance the cutting edge of the science (along those lines if you can get somewhere with multiple SAA experts, I think that is best). I think very highly of my treatment center (Colorado Blood Cancer Institute), and several times during my treatment the doctors would discuss/debate what to do at a particular juncture (and I am happy to report I've went from near death to having my life & health restored).

All that said, what is the patient to choose when you know the best doctors sometimes disagree? Whose advice do you go with? I agonized over this, thinking "who am I to cast the deciding vote here, I know nothing about hematology?". But all of us as patients are the definitive experts on our symptoms, the sum total of our past experience, our hopes for the future, and the risk/benefit trade-offs we are willing to accept. It may not be scientific, but when the science isn't completely there, we are left with intuition, with the small quiet voice in our heads (or sometimes the screaming terrified voice in our heads) pointing towards the best personal path. I think this is even sometimes the case with the doctors themselves. Again, Dr. Young said something to this effect, that he feels the most promising advances in treating aplastic anemia come from hematologists operating within the established framework of knowledge, but using intuition to build upon this framework.
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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