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A Rare Case of Aplastic Anemia Later in Life Won't Stop Me

I grew up in Louisiana - born in New Orleans and raised in Lafayette. I joined the Army, and went to Seattle and worked at Madigan General Hospital where I met my wife. I was then sent to Vietnam. After I returned, I worked for a bank in Seattle for 16 years, becoming a vice president and manager. I helped finance an auto auction as part of this job, and as a result, I fell in love with the car businesses.  I was accepted for a Ford training program that lasted for two years at a Seattle Ford dealership. I then looked around the country to buy a dealership and ended up buying one here in Lufkin, Texas in 1987, where we’ve been successful in expanding our business ever since.

I was pretty healthy as a young person, although I was exposed to Agent Orange in Vietnam. I had a heart attack seven years ago, and about three years ago, I thought I might be having another heart attack. So I went immediately to my cardiologist and although it was not a heart attack, I still had an unexplained fatigue, and the routine tests found that my blood counts were low.  I next went to my general doctor who referred me to a hematologist. I had a bone marrow biopsy done, and the diagnosis was severe aplastic anemia. Because the disease is exceptionally rare at my age, it was thought possible that this may have been related to my Agent Orange exposure while in Vietnam.

Of course I was devastated when I received the diagnosis! I thought about selling my dealership, which I didn’t want to do -- but I still got my affairs in order.  However, I never gave in to the discouragement, and I followed the doctor’s orders exactly. Because of my low blood counts, I was receiving weekly blood transfusions to help with my fatigue, overall weakness, and some bleeding. Like most others, I sought information on the Internet, but my daughter-in-law provided some guidance as to where I should look online. I found AA&MDSIF, called, and received their information packet right away.

I was next then referred to Methodist Hospital in Houston where I had another, confirming bone marrow biopsy. In January 2012, treatment on horse ATG and cyclosporine began with encouraging results, but I had a very bad reaction (tremors) to the cyclosporine that put me back in the hospital. So ATG/cyclosporine didn’t work for me for that reason -- we needed another approach. The hospital next tried eltrombopag (Promacta®) for a period in the middle of 2012, because my symptoms and the need for transfusions had returned. But it wasn’t a good response, and by October I had relapsed, and was back on transfusions.

My daughter-in-law is a doctor in the Washington DC area, and she and thought I should try to get into a program at NIH. So I applied and was asked to come to NIH for evaluation, which I did in November 2012.  From the start, I had been advised to start thinking about a stem cell transplantation. My brother was only a half match. But the NIH staff thought because of my age, we would try another medicine first before a stem cell transplant. So that’s when I was put on alemtuzumab (Campath®), which I had no response to.  So in late 2013, they put me in a clinical trial for eltrombopag, which I had already tried once before, but this is when things began to happen.  After three months, I was a non-responder by the standards of the trial, but in reality there was a response.
So I am on the extended eltrombopag trial at NIH, and as of today, things are going well! I have much less fatigue and the other symptoms I that previously had. The ongoing maintenance -- blood tests and transfusions -- are all done in Texas, and that information is communicated to NIH in Maryland. I have now been to NIH six times since late 2012 for periodic evaluations.

I realize I am not cured and that a stem cell transplant is the only potential cure. But I have decided at my age that I am better off with my current approach because it appears to be working, and it would be hard to undergo a transplant because I just turned 70. I have been transfusion-free for four months, all my counts are improving, and I feel better. I also quit smoking and did other things that would support my health.

My advice is to get the best information you can and read it – I mean really study it. Be informed and learn about the programs and treatments that help aplastic anemia patients. You have to spend time to understand your disease and the process and steps in treating the disease.  You need to be seen at a large institution that can handle your case and has experience in treating this disease.  I was fortunate to find the right doctors and get the right care.

And people have been there for me!  I have been on prayer lists here in Texas, and I was even covered in two articles in the local newspaper, two years apart, and it was in those two years when the improvement happened.

I still visit NIH twice a year for follow-up and evaluation as part of the clinical trial I am in. I have been off and on eltrombopag (Promacta®) a few times over the last few years but it appears to be working for me, so I am pleased with these results.

We recently took a 12-day trip to Seoul, South Korea, where my wife is from. And after running my Ford dealership for 30 years, I’m slowly retiring and selling it to a long-time employee.  I just celebrated my 73rd birthday on July 14, 2017 and my 49th wedding anniversary on July 19 – so I’m grateful for how things have gone since my treatment for aplastic anemia.