January 16, 2023. When I agreed to consider participating in the “Phase 2 Study of Magrolimab Combination Therapy in Patients with Unresectable, Locally Advanced or Metastatic Triple-Negative Breast Cancer,” the coordinator gave me a 33-page participant information and informed consent form, a 4-page HIPAA Research Authorization form and a 1-page UCSF Experimental Subjects Bill of Rights form. Reading through each page and digesting all the information they contained was overwhelming, intimidating and frightening. Each one required my signature, my acknowledgment, my consent. I hesitated to commit. It was only after reassuring myself I could back out at anytime, did I finally put pen to paper.
Reading the potential/common side effects was similar to watching a commercial on television for some new miracle drug while the possible side effects endlessly scroll by in a barely readable font size.
With all that being said, my first treatment as an experimental subject aka guinea pig is this Wednesday. I’m nervous but ready to get started.
On Friday the 6th I had a port implanted. As you probably recall, I had one few years ago and hated it. I couldn’t wait for the day it could be removed. Nothing has changed. However, when it comes to the likelihood of weekly infusions for the next couple years or even the rest of my life, it is the only way to go.
As was the case in early 2019, the doctors and nurses who cared for me in Interventional Radiology were stellar. They were warm, friendly, knowledgeable and thorough. As is the norm, they had me change into one-size-fits-all hospital-wear. It felt a bit like I was channeling Billie Eilish. The procedure went smoothly, although the medication (fentanyl) later made me sick. Thank you, June, for pulling over so quickly. I hope I didn’t kill that beautiful succulent in the process.
So here I sit trying to enjoy my last day and a half of “normal.” Not giving this clinical trial a shot might have given me regret. At this stage in my journey, that’s something I just can’t afford.
No regrets. No looking back. Just hold onto life and move forward. — Susan Gale