Chuck Dandridge: Surviving Acute Myeloid Leukemia Thanks to Clinical Trials
Since being diagnosed with acute myeloid leukemia in September 2014, I have taken part in two clinical trials. The pioneering treatments I received through these clinical trials were successful and I feel back to normal, 100 percent.
It all started in March 2014. I was visiting my primary care physician for a routine blood test to monitor my health because I take a statin to control my cholesterol levels. The test showed that my blood cell counts were slightly lower than normal. After another two blood tests confirmed the result, my doctor suggested I see a local oncologist.
The oncologist diagnosed me with myelodysplastic syndrome, or MDS. I didn’t have any symptoms. I was living my normal life. But the oncologist explained that MDS was a precursor to leukemia and that over time I would begin to feel unwell if I didn’t start treatment. I took azacitidine for about eight to ten months to try keep the disease in check. But the number of abnormal cells, or blasts, in my bone marrow kept rising and my disease progressed to acute myeloid leukemia, or AML.
At this point, the oncologist told me that my only option for a cure would be a stem cell transplant. He suggested I consider being treated at one of the large cancer centers in Texas because they would be more oriented to these procedures.
The first place I visited was UT Southwestern in Dallas. The doctor I met made me feel really comfortable. She explained the disease and how there were lots of new treatments being developed for the type of leukemia I had. I felt my anxiety level come down, and decided there and then that this was the place where I would continue treatment.
Many of the options mentioned by my doctor were for people whose leukemia had abnormalities in certain genes, so my leukemia cells were tested to see if I was a match for any of the new treatments. They found a mutation in a gene called IDH2, which made me eligible for a clinical trial testing a medication called AG221 [enasidenib; Idhifa].
After listening to the doctor and discussing everything with my family, I decided to enroll in the clinical trial. I knew that even if AG221 did not help me, the results of the clinical trial would help the researchers and help other patients in the future.
I took four pills every morning for eight months. They did not get rid of the leukemia completely but they did lower the number of blasts in my bone marrow dramatically. Without that, I would not have been able to have the stem cell transplant that has eliminated the leukemia.
Then, because there were no donors who were a good match for me, I had to receive the stem cell transplant through a clinical trial that was testing a way to use cells from a partially matched donor using genetic engineering.
The way the doctor explained the trial to me is that the problem with using a partially matched donor is that the transplanted cells can cause something called graft-versus-host disease, which is when the transplanted cells attack parts of the body. This can be life-threatening. The genetic engineering was being done so that if I got severe graft-versus-host disease, the transplanted cells could be eliminated.
My son was my donor. They took his cells and sent them away to be genetically engineered. That process took about 3 1/2 weeks. During that time, I was admitted to the hospital for chemotherapy to wipe out all the leukemia and my own immune system. I was in isolation because I was at very high risk of getting an infection.
The doctors then infused genetically engineered stem cells and immune cells called T cells from my son. I was the first person in the United States to have this type of transplant.
Currently, I have a blood test every three months and see the doctor every six months. Fortunately, I never got severe graft-versus-host disease so the doctors did not have to eliminate my son’s cells using the genetic modification they had engineered into the cells, and the latest tests showed that my blood counts are good and that the transplant worked.
I am truly blessed. I am doing great. I feel extremely healthy and am back in the gym working out. I’m living proof that clinical trials can save lives.
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