When Ralph Hills was diagnosed with an aggressive blood cancer called acute myeloid leukemia (AML), his doctor told him to get his affairs in order. He interpreted that statement as a polite way of saying that he didn’t have long to live. But a last-minute phone call from the doctor led him to the right treatment for his disease.
AML is driven by as many as 76 gene mutations. Therapies under development that target those mutations are opening up the possibility to tailor treatments for individual patients. Now, three years after his diagnosis, Hills is raising awareness of how precision medicine can help save lives by sharing his journey with AML.
How did you learn that you had AML?
“In December 2014, I was 70 years old and experiencing back pain. I thought my doctor was going to schedule surgery, but instead, he told me to make an appointment with our local cancer center in Connecticut. A couple days later, my wife and I were sitting in a room with an oncologist who told me I had AML. He said that he was going to prescribe chemotherapy and that I should get my affairs in order. He also suggested that we get a second opinion.”
How did you react to learning you had AML?
“That meeting left me in a haze. I felt like I lost control of everything. We cried. I knew that the prognosis for AML was not good for someone my age, and I lost hope. But a few days later, we took my doctor’s advice about getting a second opinion and went to the leukemia department of Weill Cornell Medicine in New York City.
“Targeted therapy inhibits the activity of specific genes, proteins or antibodies that have mutated and are helping cancer cells to grow. This inhibition can slow or stop the growth of cancer cells.”
Did your treatment plan change after receiving the second opinion?
“It didn’t, at first. My new oncologist recommended the same decades-old standard of care for AML, which is an aggressive chemotherapy regimen. I knew the treatment would have harsh side effects and would not cure my AML.”
“The week before my treatment was scheduled to start, I visited a friend who was being treated with chemotherapy for his blood cancer. He told me that he was tired of fighting and ready to give up. I imagined that I was going to be in his position in a matter of months.”
What happened next?
“The night before my chemotherapy was going to start, my doctor called during her ski vacation. She asked me if I would consider changing my treatment plan. Apparently, I had a molecular mutation in a gene that might respond to a targeted therapy that was in clinical trials. So I had a choice of being treated with chemotherapy or an unknown treatment. I trusted my doctor and knew that she wouldn’t have offered it to me unless she thought it was the right treatment for me at that time.”
Did you know that your doctor had ordered molecular profiling of your disease?
“No, we didn’t know at the time. She took my blood and bone marrow samples when we first met with her, but I thought that was just pretty standard routine tests. I didn’t know that she went the extra mile and ordered molecular profiling to see if I had any mutations. But that test was what qualified me for this trial.”
What was your treatment experience like?
“For six months, I could hardly move. I was in my bed unable to eat regular foods, getting all my sustenance from nutritional supplements. I lost 45 pounds.”
“After that, the bad leukemia cells began to disappear, leaving room for the healthy blood cells and platelets. Every two weeks, I went in for testing and watched the number of bad blood cells drop. Then I was told that I have indiscernible leukemia. The doctor told me to go home because she had sick people to see. That moment was the start of my second life.”
The idea to target the bad guys and avoid affecting other healthy cells makes sense to me.
What kept you going during your treatment?
“My dedicated wife, Dorcas, handled much of the physical and emotional load. She made phone calls and wrote newsletters to keep my friends and family up to date. They sent me get-well cards and flowers. I played card games with my grandchildren for five minutes at a time, which was all I could manage. But little things like that kept me going.”
How do you feel now?
“My life has changed in many, many ways. Like all cancer survivors, I visit my doctor for regular medical check-ups. I’m eliminating all the stuff that wasn’t important and enjoying every moment more. I’m semi-retired now. This summer, I spent a couple of months in Canada. In September, I will celebrate my third birthday after my diagnosis. That’s the way I’m treating all this — as a complete reset on my life.”
What do you hope the future has in store for AML patients?
“The idea to target the bad guys and avoid affecting other healthy cells makes sense to me. I’m delighted that my doctor did the molecular profiling to qualify me for the right clinical trial among the 7,000 that are ongoing in the United States so I could get the right treatment. I hope every person, young and old, rich and poor, gets the right treatment at the right time like I did. I feel like I am one of the very, very lucky ones.”
To learn more about how our understanding of the genetics of AML is opening up treatment options, read “Personalizing AML Treatment Through Mutational Profiling.”