My battle with cancer started shortly after watching a beauty pageant in 1994. More than two decades later, I am living longer and better thanks to an investigational therapy called CAR-T.
I want to share my experience with CAR-T because it not only saved my life, but has given me a quality of life that I feared I might never see again.
What I have learned most from my journey is that you must advocate for yourself. Cancer patients with no viable conventional treatment options might have options in clinical trials that medical providers (especially at the community level) may not be aware of. I might not have found the clinical trial for CAR T that gave me another chance at life, or the quality of life that it made possible.
[See: What Causes Cancer? 5 Unlikely Claims Explained.]
Chimeric antigen receptor T cell therapies, or CAR-T cells, are created using a patient’s own immune cells, genetically engineering them and giving them back to the patient to fight their cancer — a living medicine made from my own cells. My experience with this therapy has me convinced that we could be on the verge of changing cancer treatment for the better.
It all started on a Saturday night in 1994. At the time, I was 30 years old, a wife, mother to a toddler and a neonatal intensive care unit nurse practitioner. I was watching a national beauty pageant on TV. One of the contestants was a breast cancer advocate. She talked, and I listened. That night, I did a self-examination and found a lump. After a biopsy, I was diagnosed with diffuse large B-cell lymphoma, or DLBCL, which rarely shows up in the breast.
I was optimistic. The regimen of chemotherapy and radiation — and all the side effects that came with them — put me in a long remission. I continued living a normal life.
But after 15 years of remission, lymphoma would show up again — four times. That meant more chemotherapy, each regimen more intense than the previous one and more awful side effects.
Once, the lymphoma went into remission, only to have breast cancer arrive in its place. The breast cancer treatment worked great on the breast cancer, but allowed the lymphoma to come roaring back less than a year later. This time an autologous stem cell transplant was added to the regimen. But ultimately, the lymphoma came back.
So, over more than 20 years, I had radiation, rounds and rounds of chemo and a stem cell transplant for two different types of cancer. I had a double mastectomy and reconstruction. I even had an eye removed. And yet, I still had cancer.
The toll these treatments took on my body ended up being too much. I had to stop working because of the side effects. All the drugs from the 1990s and 2000s that helped so many others were not helping me and left me with severe bone marrow suppression.
[See: 10 Seemingly Innocent Symptoms You Shouldn’t Ignore.]
Each chemotherapy regimen I had worked initially, but I didn’t stay in remission long enough for my bone marrow to recover before getting hit again. By the time I entered the CAR-T trial, I probably would have not survived the chemo required for a donor transplant. And that was the only other option: a donor stem cell or “allogeneic” transplant. It came with a so-so chance of success and a real possibility of killing me. I said no.
Instead, I spent hours working with the Leukemia and Lymphoma Society to find a clinical trial to help me. That’s how I found and enrolled in a trial for an experimental CAR-T drug at Massachusetts General Hospital.
I am so glad that I did this. Long years of brutal treatments could not have been more different from my CAR-T experience. The CAR-T cells didn’t completely wipe me out like other treatments. It was a million times better than the stem cell transplant I’d had.
Three days after getting my CAR-T cells, a tumor that had been pressing out of my pelvis was no longer visible. I had side effects like fever, a port infection and pain that needed heavy-duty medication. But two weeks after, I was fever- and pain-free, and my tumor biopsy was negative. Two months in, I was clear — complete response.
By now, you could probably guess that my battle with cancer didn’t end there. My remission was interrupted when a tumor reappeared, but it disappeared shortly after it was found. And although I can’t explain how that happened, I know I’m still here because I got access to CAR-T therapy.
I had time to take a honeymoon, swim with dolphins and plan my daughter’s wedding. Not just because CAR-T gave me time, which it did, but because I had my life back.
My story shows the potential for patients if companies, scientists and the government keep pushing the envelope to find something less harmful and more effective than chemotherapy, radiation and stem cell transplants. Of course, I know that just because CAR-T worked for me doesn’t mean it will work for everyone. It may not even keep working for me forever.
[See: 7 Innovations in Cancer Therapy.]
CAR-T is not without risk, and there have been deaths on clinical trials. But I’ve become all too familiar with the downside of conventional treatments. That’s why I went to a clinical trial. There was a risk even with standard medicines, and especially with stem cell transplants, that the treatment, not the cancer, could kill me.
There are thousands of patients like me every year who don’t get the chance at more time. I hope that one day, hopefully soon, CAR-T therapies for cancer will be more widely available and even better than the kind I got through a clinical trial.
Based on my personal experience fighting cancer, both as a nurse and patient, I know how inadequate the options are for some patients today and that CAR-T could be a big positive change. I also know that health care providers want better treatments for their patients, especially the patients who are out of options. I’m hopeful that we are seeing the start of something revolutionary with CAR-T for cancer — because I know that’s why I’m still alive and thriving today.
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How CAR-T Therapy Has Helped One Woman Survive and Thrive, Despite Cancer originally appeared on usnews.com
