
October 18, 2023. Yes, that’s right. After a really good meeting with Dr. Rugo, I did go ahead with Day 1 of this cycle. Once I told her about my increasing fatigue, my desire to withdraw from the trial, and my body’s need to take a break from infusions after being assaulted for the better part of the last 5 years, she suggested I not do Cycle 14, Day 8. She said skipping a treatment was within the guidelines for the trial should I change my mind about continuing. How could I argue with that?
We also discussed her conversation with the radiation oncologist about focal radiation (stereotactic body radiation therapy or SBRT) on the two largest nodules in my right lung. This is a specialized type of external beam radiation that allows highly precise delivery of high doses of radiation to small targets. After reviewing my last CT scans the radiation oncologist felt confident about moving forward, and is recommending 5 treatments over a 10-day period.
It is my understanding I would have to abstain from any chemotherapy for two weeks prior. I would also need to remain off any type of chemotherapy treatment for at least two weeks after. I’ve read that SBRT has potential short term side effects of fatigue, radiation dermatitis, sore throat, trouble swallowing, cough, chest pain, loss of appetite, shortness of breath and nausea. Long-term side effects can take months or years to develop and may include heart complications, radiation pneumonitis, chest pain, and shortness of breath that gets worse with exercise. There is also the possibility of it causing more cancer much later. The fact is I have Stage 4 triple negative metastatic breast cancer. In all honesty, I will have cancer no matter how much longer I live…5 years or 10 years, whatever amount of time there is before my end date. So none of these side effects–short term or long term–give me reason to pause.
Rugo suggested to me that we wait until after my next CT scans on November 1 before meeting with the radiation oncologist. I asked her what the benefit would be in waiting, that I had read about focal radiation and its risks and was ready to start treatment as soon as possible. She immediately texted her colleague, and he quickly responded that he will contact me for a video meeting this week. So there you go.
As for Phase 14, Day 1 treatment, it could not have gone more smoothly. My vitals and bloodwork were perfect, Deeann (my former scholarship student at Mendocino College) was my oncology nurse, the premeds were ready and waiting for me, the Magrolimab was delivered before the premeds were done, and the Sacituzumab was ready just as the last drop of Magrolimab entered my port. We were on the road around 430p and home by 730p. If that was my last day of this clinical trial, then it ended on a high note. I couldn’t ask for more than that.
Living is a form of not being sure, not knowing what is next or how… We guess. We may be wrong, but we take leap after leap in the dark. —Agnes de Mille
