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Old Fri Jun 15, 2012, 06:44 PM
alyse alyse is offline
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Join Date: Jul 2010
Location: new york new york
Posts: 12
Campath trial update

Hi,

As I have stated many times, I was diagnosed with severe Aplastic Anemia in October 2008. I was treated soon after with ATG Horse at NY Presbyterian Hospital. I was fortunate because my counts went up almost immediately following treatment and never needed a transfusion. The bad news was I relapsed after I was taken off Cyclosporine in May 2010. Since I had serious adverse reactions to ATG, I was fortunate to be accepted in a clinical trial of the drug Campath at NIH. This trial is for refractory and relapsed A.A. patients.

It has been almost a year since I posted anything on this thread. My two year anniversary of the Campath trial is August 9, 2012. I have been transfusion independent for about 18 months. My counts have been consistently good: platelets 100; wbc 2.4; rbc 12.1. I know that I am one of the lucky ones and I am thankful for all of the love and support I have received over the past four years.

I want to encourage anyone who has relapsed following ATG treatment to consider this trial. The principal investigator is Dr. Phillip Scheinberg. You can find the information you need at the NIH website.

This week's announcement by Robin Roberts, co-anchor of Good Morning America, that she has been diagnosed with MDS (following chemotherapy and radiation treatment for breast cancer about five years before), brought back many of the emotions I felt when I first learned about my diagnosis. Finding out you have an illness you have never heard of has to be one of the most frightening things about bone marrow failure diseases. Fortunately Robin will receive a bone marrow transplant, a potential a cure (her sister is a perfect match). However, I doubt that she has any idea how difficult the road is that she is facing. Her courage in announcing this publicly has helped raise awareness and educate the public of bone marrow failure diseases -- something that is rarely seen in the media. My prayers are with her as she begins this journey. May she have the courage to continue to share the experience with the public and have a full recovery.

All best,
Alyse
__________________
Alyse, dx AA Oct 2008, ATG+CSA; relapse May 2010; Campath trial Aug 2010; good counts 2011- Sept. 2013; then re-dx MDS borderline AML,
Nov. 2013, Vidaza+Pracinostat trial; Jan 2014, considering chemo/transplant.
Please donate blood and platelets.
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