I am a patient advocate and provide awareness about bone marrow transplantation for leukemia and clinical trials. I was diagnosed with Chronic Myeloid Leukemia in January 1995. I had given some tests right before the Christmas holidays here in Michigan and went to collect the results after the holidays in January. I gave these tests because I was experiencing back pain and fatigue, but I did not have reason to think that a severe medical condition caused these symptoms.
My first reaction
When the doctor told me that I had Chronic Myeloid Leukemia (CML), or Chronic Myelogenous Leukemia as they called it before, I was shocked. The doctor was sitting at his desk, and I was seated on a couch in front of him; as he told me that I only had three years to live, I felt like I was sinking into the couch. He gave me a lot of information, but I was numb and shocked.
I came to know that I had a three-year prognosis, and the best possible treatment for this cancer was a bone marrow transplant, preferably from a sibling donor with a higher chance of matching. The doctor also told me that minorities had a difficult time finding a donor match.
This was in 1995, and there were less than a million donors available in the bone marrow registry, unlike now when there are more than 23 million. But, the doctor told me that if I find a match, I have a 50/50 chance of a better outcome. He also warned me about graft vs host disease, where the transplant is not successful and can turn out to be fatal.
Processing the news and planning the process
I had a sister, so my chances for survival seemed pretty good. As I process the information, I think about my daughter, who is just five years old. If my prognosis really is three years, then she would only be eight years old when I die. All the new information is swirling in my mind while I go home and tell my wife the news. She obviously became really upset and cried.
I was stationed as a Major in the army then, so I had to inform them too. I was soon called in to see an oncologist who took a bone marrow aspiration to ensure it was CML. The oncologist confirmed it, but I was still in denial, so I went for a second opinion at Walter Reed hospital in Maryland, and they too confirmed that it was CML.
Starting with the treatment
After the second opinion confirmed cancer, I decided to begin with the treatment. My first treatment was Interferon, administered through daily injections in my thigh, arm and stomach.
While this treatment was going on, my sister gave tests to see if she was a match for me and the results showed that she was not. We checked the bone marrow registry, and there were no matches there either. My coworkers were also really supportive of me during this period. Hundreds of them were tested to check if they were a match, but unfortunately, none were.
Beginning with bone marrow drives
At this point, I decided to do bone marrow drives and the organizations I contacted initially told me that it would be better if someone else did the drives for me. Still, I wanted to do this myself because people tend to respond quicker if I ask them myself.
So, I did a bunch of drives all over the country to military bases, churches, and malls with many different groups of people. I had to take medical retirement from the army and decided to move south to the state of Georgia, and doing drives became a full-time job. Every day, I would wake up and do these drives, and there were matches found for many other people, but not me.
The drives picked up momentum, and soon, people were doing drives for me, too; my aunt was also involved in it and did the drives in Columbus, Georgia. When I was visiting that drive, a guy who survived hairy cell leukemia told me about a specialist in Texas who helped him through his journey and advised that I see him.
Encountering clinical trials
When I met this guy, it was already eighteen months since my diagnosis, and according to the prognosis, I only had a year and a half left to live. So, I went to Texas, and the doctor analyzed my report and told me we still had time. He told me about clinical trials and informed me about the process that would follow.
The doctor told me that he would increase the dosage of Interferon that I was taking, add a combination of drugs to the treatment, and try out different clinical trials. So, I was a part of many clinical trials, and I would fly to Texas every few months for the new medications.
I conducted the drives simultaneously, and many people found their matches. Even my best friend was a match for someone, and I got to be with him when he went through the procedure. Time went by, and soon I hit the three-year mark. The medicines from the clinical trials would work initially but did not have a lasting effect, so I was still not completely cured.
The last hope
I finally asked the doctor what I was going to do now, and he told me about this one drug that would be of help, but there are still a few problems in the lab, and it hasn’t been approved for human testing yet. I knew that was my last hope, so I went back home from Texas.
I got a call from the doctor after seven months, and he told me that the drug had been approved for clinical trials, so I flew back to Texas, and I was the second person to try that drug in clinical trials. I started with a very low dosage but responded to it well.
I began with this drug in August 1998, and it worked so well that by the same time next year, I ran a 26.2 marathon in Alaska for our cancer organization called the Leukemia Oklahoma Society. Five months later, I cycled for 111 miles.
This drug was only approved three years later for everyone’s use. That is why I advocate for clinical trials because it allows people to try tomorrow’s medicine today. I would have been long gone if I had waited for the drug to be approved. I am also the longest-living person on this drug. It is called Gleevec (Imatinib) or TKI.
There have been a lot of trials and tribulations along the way, but I feel very blessed to have been on this journey. I have met a lot of patients who are a part of various organizations, and it has been good to encourage them and listen to their stories.
The message I learned through this journey
If there is one thing I learned, it is not to lose hope. Hanging on to what you have is crucial because it may not work, but it can help you get to the next step, which might lead to the solution. Even amongst people with the same type of cancer, each person may respond differently, but maintaining your hope can bring you the answers you need because nobody knows what the future holds.