It’s hard to believe it’s been a month since I last posted, and all that has been going on is in keeping with the title of today’s blog post. I do feel like I have been “running to stand still” (one of my favorite U2 songs from the “Joshua Tree” album) for the last month.
An aim of both our “Medical Minute” video podcast series and this blog is to give cancer patients an insight into what cancer patients go through as part of their journey. My goal is not to complain, but rather to educate and let patients know when and where Cincinnati Cancer Advisors can help.
Keeping this in mind, one thing I have tried to do is to convey the financial toxicity that can often accompany a cancer diagnosis. Lemme tell ya… neither the treatment nor the billing is for the faint of heart. I have recently learned the importance of “coordination of benefits” in the insurance billing setting, which becomes an issue if you have more than one medical plan. The confusion around that is what scored me $99K in medical debt, which I am slowly working through.
The other part I wanted to update everyone on is the clinical trial option that I am pursuing at MD Anderson Cancer Center in Houston. After researching a variety of clinical trial options at different hospitals throughout the eastern U.S., my conclusion (as well as that of several members of my oncology team) was that the “PSMAfore” trial at MD Anderson was my best option.
The nice thing about this trial is that it is based on the same treatment protocol as what led to the FDA’s recent approval of Pluvicto for advanced prostate cancer. This is a “radioligand” treatment that uses a PSMA PET scan (of which I have now had three) to not only find prostate cancer cells, but delivers a potent dose of radiation at the same time that is designed to kill the cancer cells. That said, the recent FDA approval of Pluvicto applies only to guys whose PSA is progressing despite hormone therapy and have already had chemotherapy. By contrast, the PSMAfore trial does not require you to have previously had chemo, which is great for guys like me.
There’s only one problem with that though, and it’s a pretty big one. Novartis, the drug manufacturer, just voluntarily suspended production of the Lu 177 radio tracer that the clinical trial relies on, which means the clinical trial is on hold until further notice. Meanwhile, I just had an FDG PET scan a few weeks ago as a condition of getting into the trial but now I need to acquire a physical CD of the scan and upload it to MD Anderson. Two problems with that; (1) being provided a copy of the scan on a CD and (2) finding a computer that even has a CD drive.
So in summary, I am running hard, but currently standing still. 😊
Until next time,