Alyse Booth's Personal Profile
Introduction • Entering a Trial
Entering a Trial (2010)
Setback. Two months later at the end of May, I went to see Dr. Roboz, thinking this would be my last appointment for a very long time. To our mutual shock, my platelets had gone from 160,000 to 20,000 in six weeks; one week later my platelets were 10,000 and my red blood count plummeted to 8. I had a bone marrow biopsy and was diagnosed with relapsed Severe Aplastic Anemia (SAA). From that moment on, I entered the exclusive world of transfusion dependence and began weekly hospital visits for platelets and bi-weekly for red blood transfusions.
Evaluating the choices. Hoping to avoid another round of ATG, I asked Dr. Roboz to put me back on cyclosporine. After a few months, it was obvious that my prayers were not being answered — the cyclosporine alone wasn't effective. I told Dr. Roboz that my greatest nightmare was going through ATG again. She spoke to Dr. Neal Young, chief of the National Heart, Lung, and Blood Institute's (NHLBI) Intramural Research Hematology Branch at NIH, who said the NIH Campath (alemtuzumab) trial for relapsed and refractory severe AA patients might be a good fit for me. While I was ambivalent about trying something that had been tested on very few people, the thought of another round of ATG was depressing, to say the least.
At the AAMDSIF conference in July 2009, I met Lisa Z. who had been through the Campath trial for MDS patients a year or so before. She had a successful outcome and encouraged me to do it. A few weeks later I went to NIH to be evaluated for the trial and met with Dr. Young and Dr. Phillip Scheinberg, the trial's principal investigator. Dr. Young said that interim results showed Campath as effective as ATG for relapsed patients. Besides fewer side affects, there is no cyclosporine with Campath. With platelets around 10,000 and a reticulocyte count just under 60,000, I was accepted. I arrived at NIH on Monday, August 9, 2010 for the 12-day trial. Here is an account of my experience during the trial and afterward.
Next: Campath Trial: Day 1