No blog post today, just a few points of interest from my recent past:
Yesterday I started cabazitaxel chemo on the advice of Dr. Beltran of Dana Farber. I asked if it would be effective against neuroendocrine cancer, and she said it should. I already have partial biopsy results, the tumor samples in my liver is 100% neuroendocrine. Its proliferation rate is off the charts at 85%. If cabazitaxel acts best on rapidly dividing cells, it ought to work very well. Stay tuned for anecdotal evidence after a scan to be done after 2-3 cycles.
She also recommended stopping abiraterone as it didn't appear to be working anymore (progression on CT scan). Based on other things she said, it was also to limit the number of drugs I'm taking to improve quality of life.
My PSA fell below 0.1 in January 2019, then to <0.01 after starting abiraterone in May 2019. This summer it went up to 0.02, then 0.03, and about two weeks after stopping abiraterone it was a detectable by all standards 0.16. Looks like it was doing a little something. Since stopping, I've also noticed more cleavage on women (and still on eliguard)
Even if the cabazitaxel doesn't work on the neuroendocrine cancer, it hopefully will knock my PSA down, which may be related to the increasing pain in my rib (which also showed progression in my September scan).
I'm generally handling all this surprisingly well. I'm thinking my next step will be looking into clinical trials. Any advice on those? Will my oncologists know about all of them? Or just the ones at their facility? How can I efficiently find them on the web?
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tom67inMA
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They haven't tested my rib mets. Back in January, some of them lit up dimly on the FDG(?) PET scan used to find the source of my neuroendocrine cancer, so some probably are mixed at least. They weren't nearly as bright as my bladder and liver.
Someone said she will be starting a tri-specific DLL3 trial - that is certainly your best bet. If Misha Beltran isn't the lead investigator on a relevant clinical trial for you, she will know about it anyway. All the top oncologists know each other and know what the others are working on.
Ah yes, I recall mentioning that to you after reading her notes from my appointment with her, but I don't know what that trial is all about yet. She also mentioned my history of a second cancer (bladder) may disqualify me from some trials, but that cancer is considered curable and hasn't recurred in two years, but I digress. I will specifically ask her about that trial.
They engineer a molecule that attaches to the DLL3 protein on the cancer cell at one end. On the other end, they attach something that stimulates an immune response. I'm not sure what the third entity is in this case - sometimes it's a second T-cell stimulant, a chemo drug, an antibody, or a virus. Let us know.
Certainly good for you to do homework but your Doc should know the best trials. Perhaps she can devise one where you have to run/walk for your treatment plus cut some wood. Win win.
Seriously, we need more trials like that in humans! I've read some very encouraging exercise studies in mice (not sure I'd the researchers made miniature mauls for the mice to split wood), but human research is lacking.
I'd settle for researchers doing drug trials giving patients surveys on diet and exercise habits, then doing a meta study on that data to see if exercise and diet are associated with outcomes. Of course, the very sick don't exercise, but smaht people might figure out how to account for that.
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