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I am also on Verzenio and it is life-altering! Along my cancer treatment journey (chemo with cold cap, double mastectomy with reconstruction, radiation, verzenio, Letrizole) I have been able to find private Facebook groups to share experiences with, give/get encouragement and get advice regarding that treatment. Most doctors haven't actually experienced the treatment and may not be aware of all the tips and tricks to make it easier. The dialog tends to be bias towards issues or extremes.
I laugh uproariously when reading about how this or that chemo — red Devil to the ever-popular Taxol/Carbo combo — is “generally well tolerated.” Meaning what? That the patient didn’t croak at the infusion center or shortly after arriving home??? Oncologists gloss over side effects (some permanent) as if there’s no tomorrow, because candor would make sane patients say hell no. After all, oncologists can’t stay employed if nobody is willing to spend $$$ getting poisoned.
Kathie
In this political climate where clinical trials are being defunded, it is more important than ever that we patients use or voices. I was in a trial which was working extremely well (Stage 4 NSCLC), but dropped due to "liability" after 14 months due to stroke mimicking side effects, later labelled "Toxicity Build up" in my brain....a term I wish had been reported. My current tx Cemiplimab is working, slowly, but neuropathy and other side effects remain, BUT I am alive.
May 20, 2025 • Oregon