Everolimus for multiple Neuroendocrine tumors

I would like to thank you I am on PRRT and my second treatment side effects were horrible
Never was I told the dosage could be lowered!!
Anyway I was on Everolimus for 9 weeks November of 2023 to January of 2024
I started on the lowest dosage
Except for the severe fatigue which every treatment seems to give you it wasn’t so bad in the beginning
Then I started having issues with my heart was in the hospital my cardiologist told me to stop my oncologist told me to continue
Since I knew my cardiologist for 30 years I stopped
I continued to have issues with my heart and in February 2024 went to the hospital did a full cardiac work over and was diagnosed with PVC
I was put on metoprolol it worked till I started PRRT now I am struggling again I am currently on Nebivolol which is keeping my pulse steady but not lowering it but my BP is too low
I am not sure if Everolimus contributed to my heart issues
However there are people out there that have been on Everolimus for years with no side effects
We are all different
I believe that if you don’t take a chance you will never know
I wish you the best

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.

@firepowr thanks for your response and tips. It sounds like so far, so good, and I sincerely hope it stays that way.
Take good care.

@sophiarose Thanks for sharing your experience. Sounds like you’ve had some struggles, but you keep moving forward. I get that. But at 75 I’d like to not have so much to struggle with!
I’m a real controller, and know that I’m trying to control as much as I can right now. I agree that if I don’t try, I’ll never know.
Thanks for your response.

I am following this discussion with interest of PRRT (I get 2nd Lutathera 8/8/24) with Lanreotide shots. Everolimus was the other treatment option but choose PRRT. I have not tried this personally, but an amino acid pill suppliment “L-Lysine 1000mg” was recommended to take following your “E” pill (dosage up to 5000 mg) to combat the mouth sores. We are all zebras so check to verify if this supplement will help you.
I will be following along and hope to hear L-Lysene has elevated the mouth sore side effect.
Best results for you!

I started on Eberolimus 10mg daily March 2023. I developed mouth sores which bece more manageable with Dexamethasone liquid “swish and spit”. Over the 10 months I took 10mg, diarrhea was a constant, I developed hypertension, high cholesterol, and Type II diabetes, lost 50 pounds and by January 2024, I felt awful. There was a reluctance by my local oncologist to lower or stop the dosage as a CT seemed to indicate a new liver mass present. After consulting with my Mayo oncologist at Rochester, including an overread of the CT scan, He determined I had a “culmination of toxicities”, and I went off Everolimus for 2 weeks, then restarted at 5Mg dose on 2/15/24. Since then I have regained 16 pounds, feel better overall with better energy levels and my diabetes and high cholesterol have disappeared thankfully. I will return to Mayo mid September for scans and follow up to make sure the lower dose is effective. Diarrhea remains and I continue on Lanreotide injections every 28 days which I have been on since November 2018. Crossing my fingers for OK reports at my September appointments.

and the CT that local reading identified a new liver met, but Mayo review of that CT against previous scans said not a new tumor but the same one from years before. Mayo doctor also reminded me it was OK to lower the dose or even be off Everolimus if needed to manage side effects. My 50# weight loss was a good reason to alter dosage.

I got a second opinion from MD Anderson's Neuroendocrine research doctors who also recommended Everolimus. My oncologist planned to prescribe it with another med but MDA's research trials showed no significance in adding another med, just the Everolimus and continuing the injections. It seems you know the worst of the side effects of Everolimus, mouth sores. I was told to swallow it quickly, not to handle it more than necessary and to wash my hands afterwards, rinse my mouth and use the meds if sores occurred. Long story short, I never ended up taking it. Before I started it, the next set of scans showed the tumor that caused them to consider this med, was no longer active (it wasn't lighting up on the scans for cancer). This does not mean I will never take it. MD Anderson said I will eventually need all the treatments I asked her about within my lifetime. I am praying the bottle of Everolimus and its accoutrements expire before I need them. You mentioned stomach issues and weight loss. I have been taking CREON with every meal or snack. It works. It did take me a while to regulate it, but it really does help so give it time. If you do take it you may be eligible for copay assistance from the manufacturer. Look up Creon patient support and you will find it. This site will not allow me to share a link. Me in brief: Pancreas NET removed 2020. Secondary liver 2022 started Lanreotide injections, more spots found in 2023 lead me to 2nd opinion with MD Anderson in Houston, they are now part of my cancer team and receive all copies of my tests and bloodwork. I recommend getting as many second opinions as you can to feel good about the decision and stay diligent with your bloodwork and follow up scans. Keep the faith!

thanks for the suggestions. I checked the info on Creon and I am on Allopurinol for elevated uric acid which is a warning for Creon. My NET was small intestine no pancreas tumors-so I don’t know that I have a pancreas functioning issue—but will ask my Mayo doctor next month. You are absolutely right about second opinions. I am seen monthly by our local cancer center and every 6-12 months by Mayo Clinic. They work well collaboratively for my care. Good luck and good health. Hope you will not need that Everolimus.

My husband was diagnosed with GITract small bowel Neuroendocrine tumor
Stage 4 Grade 2 well-differentiated KY 4% metastasis to liver, bones, lymph nodes in January2022. He had surgery removed the primary tumor from small bowel plus 5 ft of small intestines. Removed 22 lesions on liver and some lymph nodes. Everything sound positive started him on Octreotide monthly injection. Scans were good until January 2023 then 6 spots on liver were found Doctor switched him to Lanreotide monthly injection. The scan on July 2023 showed too many spots on liver to count. He started PRRT on September 2023 did 4 cycles last cycle was March 2024. Had his first Pet scan after PRRT treatment on June 11,2024. They think that PRRT has stable the cancer but there is some Fatty liver so can’t see all. His blood tumor markers before PRRT for pancreastatin level 835 and after the treatment on June 11,2024 his pancreastatin level 5054. Has anyone have this happen?