I am 48, well-diff, grade 3 (ki67 17-29), unknown primary with tumors in liver (innumerable), pancreas, lungs, adrenal gland, parotid gland, and bone. Diagnosed Jan 2020. I started on CapTem, then FOLFIRINOX (10 rounds), FOLFIRI (50 rounds), PRRT w/octreotide (3 rounds), Cabozantinib, FOLFOX (4 rounds), IPINIVO immunotherapy, and I most recently started everolimus (10 mg) in June 2024. I had a bit of fatigue and an acne-like face rash, which was totally manageable, but my counts went too low (platelets and neutrophils), so I was switched to 7.5mg after about 3 weeks. I’ve been on that dose since early July.
Face rash has lessened, fatigue is rare, and I feel fine. Counts have gotten back into a better range—platelets and neutrophils are still a bit low (100 and 1.4, respectively), but I’m able to continue treatment with few side effects.
My oncologist at Mayo Rochester suggested I “hide” my pill in a spoonful of yogurt or pudding and swallow whole, followed by 8oz of water to reduce chance of mouth sores. I’ve heard others have purchased vegan capsules online (Amazon) to put the pill in as well. I was prescribed dexamethasone mouthwash if I get any mouth sores, but I haven’t needed it. I use OTC Peroxyl mouthwash every night, and so far, so good.
Good luck, and many hugs to you.