A stage 4 metastatic breast cancer survivor describes her experience with a clinical trials and how they changed the trajectory of her life.
I attribute a large portion of my prolonged survival to clinical trials. When I was first diagnosed with stage 4 metastatic breast cancer in 2013, I felt an urgency to find one. My partner and I wrote letters to various medical institutions with no luck. I read about one clinical trial managed by an oncologist at a different Seattle facility than the medical center where I had first received cancer treatment.
I requested an appointment with Dr. Salazar, the primary research oncologist. With the blessing of my first oncologist, I switched my treatment over to her.
Despite my sense of urgency, it took over a year to qualify for Dr. Salazar’s trial. Initially, my blood work concerned her. She started me back on a chemo medication— Abraxane (paclitaxel)—and I continued with the antibodies Perjeta (pertuzumab) and Herceptin (trastuzumab) for weekly infusions.
My partner and I searched for other clinical trials in the meantime. We hired a consultant who found potential research studies in Texas, Boston and Beijing. Nothing tangible materialized.
The most promising of all of the clinical trials was still the one Dr. Salazar was leading. Each time I came close to meeting the criteria for the study, some new obstacle emerged. After my blood work improved, I started to have seizures — shaking events in my right arm and leg. Dr. Salazar called for a brain MRI, which revealed 15 brain lesions. I underwent two weeks of whole-brain radiation followed by several more months for brain metastases to resolve completely.
At last, I finally qualified for Dr. Salazar’s clinical trial. My partner and I were thrilled. Dr. Salazar’s study was in its final stage. It involved four vaccination appointments over four months. The vaccine was proving to be effective against my type of breast cancer —HER2-positive. Another main objective of the research was to discover whether drinking a mushroom-based tea could also be important in late-stage breast cancer treatment. Each study participant would either receive the mushroom tea or a placebo tea to drink daily over the four months of the study.
To this day, I have no idea whether I drank the mushroom tea or the placebo. My partner asks every so often if I have learned which tea I received, but I am not interested in finding out now.I decided to believe — somewhere along the way — that I was drinking the mushroom tea. It gave me hope.
After completing that clinical trial, I had no cancer flare-ups for almost five years. Toward the end of that NED period, Dr. Salazar retired. Fortunately, her research partner, Dr. Gwin, took over my treatment.
In late 2020, a torso scan found cancer flares in a lymph node and lung tissue. Dr. Gwin immediately suggested a new clinical trial. This study involved a vitamin E-based medication that had proven effective in tandem with the antibody, Perjeta. Dr. Gwin hoped that the experimental medicine would help contain and resolve the flare-ups. He preferred to try this strategy before adding other chemo agents or medications to my treatment. I would be the 14th candidate enrolled.
I am still participating in Dr. Gwin’s stage 1 study. I take the experimental medication every morning for two weeks. Then I have two weeks off. I also keep track of any missed doses and side effects. With each new cycle, the medication dosage slightly increases.
On the first day of each cycle, I have a pretty notable-sized blood draw, up to 25 vials, for current and future clinical research. In addition, a research nurse checks my vitals and gives me an EKG to monitor my heart. One concern about the clinical trial medication — similar to the antibodies I have been taking for years — is damage to the heart muscle or heart failure. So far, my heart seems to be handling all the medications well. In addition, the cancer flare-ups seem to be contained and gradually resolving. Fortunately, other side effects have been minimal.
I need to pause here to say that besides being grateful for access to clinical trials, I’m glad to learn that more patients may soon have that same opportunity. Patients have traditionally been excluded for where they live, their medical insurance — or lack thereof — or age. Race, socioeconomic status and proximity to research institutions have also excluded patients from clinical trials, as has a co-occurring illness such as diabetes or a heart condition. All of these exclusions are now being scrutinized and updated in U.S. medical institutions. The use of telehealth and the possibility of mailing medications directly to participants are also on the horizon. Both of these changes could improve clinical trial access for patients in rural areas.
In the meantime, I will continue my clinical trial and continue advocating for and supporting more access to cutting-edge medications for all patients.
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