Research Saved My Life
After Bob Heffernan's cancer progressed to Stage IV, his doctor referred him to the National Institutes of Health where he joined an immunotherapy clinical trial and had a good response. Bob shares his wisdom with other melanoma survivors in his book, “Cancer's Gifts with Love & Hope" and is an advocate for cancer research and clinical trials.
Near the end of November 2006, I felt a bump on my scalp. I thought it was a pimple, so I put off seeing my dermatologist until January 2007. In the back of my mind, I worried it could be more serious, and it was. What I thought was a pimple turned out to be melanoma. Waiting that long was a mistake.
My dermatologist referred me to a well-known research hospital in my home state. A month after I was diagnosed, we discovered the cancer had spread to the lymph nodes in my neck, making it a Stage III melanoma. I was 52. My doctor started immunotherapy with a cytokine that was considered standard of care at the time. For the first year, I received a shot every two weeks, and I felt like I had the flu for the entire time.
The month after I stopped my cytokine treatment, scans found cancer in my lungs. I had surgery after diagnosis to remove the nodules in my lungs, and then had a year of clean scans. In the third year, the cancer appeared again. The doctor decided it was inoperable and tried a different cytokine for a month.
The side effects of the second cytokine were much harder. This treatment turns the immune system way up. It’s like a scattershot approach to boost the immune system, but it required hospital inpatient treatment for two weeks. I recovered but I had exhausted all of the approved treatments, so I was referred to the National Institutes of Health (NIH), which was testing a new treatment. Back then, Stage IV melanoma had a 95 percent mortality rate, so I wanted to try all of my options. Luckily, I had some.
I joined NIH’s clinical trial for a revolutionary treatment that involved tumor-infiltrating lymphocytes (TIL), which are immune cells that move from the blood into a tumor to try to attack it. Surgeons removed the largest tumor they could find and sent it to the lab to determine if it contained TILs. It did, so they sent the TILs to be multiplied, and more than 67 billion cells were generated. Four days later, I was able to see my TIL cells through a microscope.
While I waited for the new TILs to be ready, I underwent a procedure similar to a stem cell transplant to reduce my immune system. Three weeks later, the TIL cells were infused into my body to build back my immune system. It was a tough procedure, but it was a declaration that research saves lives. It certainly saved mine.
Never be afraid of research, especially if you have a rare cancer type. The researchers all talk to each other, and they know more about what’s in the pipeline way before your oncologist does. You need to keep going as long as you can because you never know when that next breakthrough will be discovered.
Since the procedure, scans have shown two tiny lung tumors that remain small. The doctors are unsure if they are actually melanoma or scar tissue from the immune system attacking the lung tumors I had, so I can’t be considered in full remission, but the cancer has been gone more than a year.
I believe there is a connection between body and mind. You have to have hope and determination. I notice that people who are fighting cancer on multiple fronts seem to have a greater chance at a better outcome than those who give up.
For me, patient group meetings were very helpful, as were my husband, who is a medical lab technician, and my mother. My work community enabled me to get to treatment and keep working from home. Everyone’s support helped keep my life as normal as possible. Reach out to others. Have someone go with you to appointments because your mind races and can go on autopilot.
Also, I learned how very important it is to tell any doctor treating you that you’ve had immunotherapy. Serious side effects can occur even after treatment has stopped, and it’s critical for the medical team to know your treatment history. In my case, I also let them know about my low platelet count, a long-term side effect I have.
Going through cancer was a wild experience. It taught me many lessons that I share in my book, “Cancer’s Gifts with Love & Hope.” Each chapter addresses feelings such as faith, hope and courage. As I write in my book, “Cancer is all about the intimate human experience. It brings out the best traits in so many of us. How we choose to handle a disease is just that — a choice.”