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Old Tue Jan 25, 2011, 12:00 PM
alyse alyse is offline
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Join Date: Jul 2010
Location: new york new york
Posts: 12
Alyse Booth's Personal Profile

Hi everyone. I've had aplastic anemia since 2008. I was treated with ATG in November 2008 and my counts were near normal almost immediately. When I had a relapse in 2010 I participated in an NIH trial for Campath (alemtuzumab) and I documented it day by day. You can read the details of my experience on my Personal Profile Page.

Even though every patient's experience is different, I hope that my profile will help patients who are considering a clinical trial by showing them what the experience is like from a patient's point of view.

In this thread I'm continuing the story by writing about my experiences after the trial. Read my profile first, then read this thread. This is also the place for comments or questions about my profile and my ongoing experiences. Please tell me what you think!

January 3, 2011: This is the first week since my relapse last May that I do not have blood work. A happy, healthy New Year to all.

January 17: The roller coaster ride continues. Yesterday my red was 8.6; neutrophils 1280 and WBC 2.1. Those are big drops from Dec. 28th. My platelets were steady at 36,000. I am thankful I don’t need a transfusion -- it has been eight weeks since my last red blood transfusion -- which is beginning to feel normal. Is that a dangerous feeling? Am I deluding myself that the Campath is working? Are my counts going up or down? Do they frequently fluctuate after Campath? Is not knowing what is happening the nature of this beast?

January 24: Yesterday I went back to NY Presbyterian Hospital to see Dr. Roboz and get my blood work done. Good news! My red was up a bit and so were my neutrophils. My platelets seem to have plateaued around 35,000. (Quite a contrast to the 147,000 platelet count less than two months after ATG.) In deference to Dr. Scheinberg, Dr. Roboz said she is "very encouraged." (You have to read my profile to get this.) Hopefully, I will learn more when I go to NIH on February 1. I will report back then. Meanwhile I hope everyone who reads this is moving forward in dealing with this disease and towards long term remission.
__________________
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.

Last edited by alyse : Tue Jan 25, 2011 at 12:12 PM.
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