August 24, 2022
10-year multiple myeloma survivor: Why I joined a clinical trial at MD Anderson
BY Jerry Burley
When I was diagnosed with multiple myeloma at age 63, it actually didn’t bother me. I felt like whatever this was, God had a plan charted for my life before I was even born. Apparently, cancer was meant to be a part of it. So, there was no sense in getting angry or upset about it or throwing myself a big pity party. This was just my lot in life.
I chose MD Anderson for my multiple myeloma treatment because that’s what my doctor recommended. But I’d already been coming here regularly for prostate cancer screenings. So, I trusted its doctors as medical professionals and experts in cancer treatment. As it turns out, that trust was well-placed. Because I’m still here, 10 years later. And, my cancer is still in remission.
Surprise multiple myeloma diagnosis leads to first round of treatment
By the time I was diagnosed, my disease was not considered curable. Multiple myeloma has only three stages, and I was in the final one. I’d experienced no symptoms, save a little back pain. But an X-ray showed cancerous lesions all over my spine and rib cage. Two of my vertebrae had cracked because the cancer was growing through the bone.
Myeloma specialist Dr. Michael Wang recommended a stem cell transplant under Dr. Betul Oran. But first, I’d need two weeks of radiation therapy under radiation oncologist Dr. Chelsea Pinnix, to treat the lesions on my spine, and several rounds of a chemotherapy drug called bortezomib to prepare my body for the stem cell transplant.
Multiple myeloma relapse leads to clinical trial
I had a stem cell transplant using my own cells on July 9, 2013. Recovery was rough. I ended up back in the hospital the next two Christmases in a row for various issues. But after that, I finally started getting better.
Unfortunately, my cancer relapsed just a few years later. But Dr. Wang said I was a good candidate for a clinical trial involving a new targeted therapy drug now called daratumumab. If I joined it, I’d get an infusion of that drug once a month, then take an oral chemotherapy drug called pomalidomide once every other day for 21 days out of each month.
I thought about all the people who have cancer, and how some of them can deal with it pretty well and others can’t. I felt like me having this disease might be an opportunity for doctors to study it more closely and possibly find a cure. So, if I could help out with that process, I wanted to do it.
Life after a stem cell transplant and a targeted therapy clinical trial
I joined the clinical trial in September 2015. It went really well, and the experimental treatment I received put me back in remission within a year.
I still have a little weakness in my arms and legs. And I’m taking a different course of drugs today due to another relapse. I may have to keep taking it for the rest of my life. But that’s OK.
I don’t get around as easily as I’d like to anymore, but I’m alive and able to do most of the things I want to do. When I was diagnosed in 2012, the life expectancy for someone with multiple myeloma was only five years. And here I am, still around after 10 years.
I haven’t completely recovered because multiple myeloma isn’t my only issue. I also have diabetes, heart problems, high blood pressure and sometimes deep vein thrombosis, or dangerous blood clots. But I have a team of specialists at MD Anderson who help me manage all of those conditions. I see endocrinologist Dr. Sonali Thosani, cardiologists Dr. Kaveh Karimzad and Dr. Cezar Iliescu and hematolologist Dr. Cristiam Rojas Hernandez.
I also see multiple myeloma specialist Dr. Elisabet Manasanch now instead of Dr. Wang, because he shifted his practice to focus on a very specific subtype of cancer that’s different from mine. I really hated to lose him, because Dr. Wang was great. But all of the doctors and staff I’ve met at MD Anderson have been wonderful. And I am grateful for the care of both Dr. Wang and Dr. Manasanch.
I believe if my life’s journey were finished, then I would be finished, too. So, I must not have done everything I’m supposed to do just yet. I am grateful to both God and MD Anderson for giving me more time to meet my goals, because I know with their help, I will.
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If I could help, I wanted to do it.