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Everolimus for multiple Neuroendocrine tumors
I’ve been on this Mayo support group for a couple of years, but was always the one answering questions and making suggestions, not the one asking for feedback. But times have changed.
Briefly, I had a blockage in my small intestine in 2018 that was a Neuroendocrine tumor. The surgeon removed 10”, I started on Octreotide injections and moved on. July 2019 I had a blockage in my large intestine - they removed 11” and I moved on - until March 2020 when I went to Mayo in Phoenix for a consult about PRRT. But the pandemic came along, the docs felt it was ok to wait, so I returned in April 2021 to start treatment. After the first session, I was so sick, they had to cut the dosage in half. I finished in Oct. that year, and was basically fine until January this year until I started getting very sick. I went from 110 lbs to 95 lbs in a matter of weeks - couldn’t stay out of the bathroom, nausea, fatigue. My scan in January showed “stable disease” but the CgA continued to rise. Finally I got my oncologist on board and the scan done 2 weeks ago showed some increase in size of the tumors scattered throughout my body, and some significant increases in their activity level.
My oncologist is in favor of trying Everolimus. The possible side effects sound awful, and the Verapamil I’ve been on for years to control my A-fib does not mix with it (significantly increasing the possibility of the side effects). He was not encouraging about another round of PRRT, especially at half dosage, saying there’s less chance of having some success with achieving some stability in the disease.
I’ve certainly read plenty of negative personal reviews of this med, but would like to hear if anyone had a good or at least an ok experience. And if you did have some side effects (like mouth sores) what ways did you find to manage them.
Thanks
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For me my mouth sores were relieved when using Biotene for dry mouth oral rinse.
I was on 5mg of Everolimus
Within days I developed mouth sores
I found warm water and salt rinse to work just fine
I did develop heart issues and had to stop after 9 weeks otherwise the worst side effect was fatigue
I wish you the best
Thanks @sophiarose. They're planning to start next week so fingers crossed, it'll go well.
If not, looks like we'll try another round of PRRT.
My husband is also a patient at Mayo Phoenix.
Have they discussed captem with you?
Everolimus typically aims for stability while captem shrinks tumors. My husband has done both. He was on Everolimus for 3 years with stability and another 3-4 years after taking a break from all treatments. The main side effect was fatigue and an increase in blood sugar. Blood sugar is also increased by lanreotide and octreotide so if you’re on that as well, you’ll need to monitor your blood sugar.
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1 ReactionThanks for your comment @lindabees. I don’t know why my oncologist did not talk about Captem. I see him Tuesday so I’ll bring that up.
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1 ReactionYou’re very welcome!
Who do you see at Mayo? We see Dr Sonbal. In fact we have an appointment next Wednesday to go over scan results
I know Dr. Sonbol myself. Started off with CAPTEM and everything shrunk. I completed 13 cycles of that. I have just been on capecitabine since. No growth. I was diagnosed with stage 4 pancreatic NET with metastasis to the liver in 8/22.
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1 ReactionMy husband is on that same regimen. He was on captem for 14 cycles and cap only for 8 cycles now. He was diagnosed with stage 4 pnet in 2008
Glad it is working for him. 2008 is a long time ago. Wow. That is great. What kinds of treatments did he try prior to CAPTEM?
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1 ReactionIt’s a long list!
Surgery to remove the primary
Y90 to address a 50% tumor burden in his liver (wildly successful)
Lanreotide
Cyberknife on a lymph node
Everolimus
Captem
Cap only
(phew)