1. < Neuroendocrine Tumors (NETs)

Everolimus for multiple Neuroendocrine tumors

Posted by phyllisden @phyllisden, Aug 2 9:17pm

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

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

phyllisden | @phyllisden | Aug 13 10:07pm
In reply to @lindabees "You’re very welcome! Who do you see at Mayo? We see Dr Sonbal. In fact we..." + (show)
@lindabees

You’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

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@lindabees, I'm no longer a patient at Mayo. That was almost 3 years ago (in Oct). I went down there from April-Oct 2021 for PRRT. I was a patient of Dr. Ahn but saw his nurse practitioner, Kelly. Dr. Rule was my radiation oncologist.

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Turkey | @tomrennie | Aug 13 10:10pm
In reply to @lindabees "It’s a long list! Surgery to remove the primary Y90 to address a 50% tumor burden..." + (show)
@lindabees

It’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)

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I am sorry. After I hit reply, I thought that could be a long list. I feel fortunate to have started with CAPTEM and it worked. I also really like Dr. Sonbol and his team. More importantly, I trust them. No doctor stress is nice. A lot of folks here don't seem to feel the same way about their care team. That has to be hard.

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lindabees | @lindabees | Aug 13 10:18pm

Haha! No worries at all. I get asked that a lot and love to share our experience.
We love the team at Mayo, too. We’ve seen some of the best net specialists throughout California when we lived there and this team is the best.

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kjstein | @kjstein | Aug 14 9:38am

Hi All, I too see Dr. Sonbol at Mayo Arizona and love him and the team. I was diagnosed with an unknown primary in January 2021 with mets to liver. I started Lanreotide immediately and was just taken off that a month or so ago (not stopping progression and no carcinoid symptoms). I did PRRT (4 cycles) starting in summer of 2021 with great results (shrinkage of existing tumors) and had no progression of disease until summer 2024. All the areas treated with PRRT still show no change, but a couple of new areas of concern emerged with scans in June). Started Everolimus 5 mg and did well (except for mouth sores) for one month when we increased the dose to 10mg. Within about 10 days of 10 mg I was having significant side effects and resulting blood work showed anemia. Back to 5 mg starting today and with my first follow up scans in September. I had few side effects with PRRT (mostly fatigue and slight anemia by the end of treatments), and a few with lanreotide, but nothing that couldn't be handled with changes in eating habits. Dr. Sonbol's team were incredibly helpful with all and the Phamacologists (especially Jennah) have just been amazing helping me through the dosage issues with Everolimus. Encouraged to see so many on here with good results from Everolimus.

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1 reply
firepowr | @firepowr | Aug 14 10:03am
In reply to @phyllisden "@firepowr thanks for your response and tips. It sounds like so far, so good, and I..." + (show)
@phyllisden

@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.

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I just had scans on Monday. Everything is stable, and they even noted some shrinkage in tumors in my lungs and liver. They were very pleasantly surprised by the shrinkage. I have had stability with some of my treatments, but no shrinkage since being on FOLFIRINOX in summer 2020. I’ll take it! I hope you are doing okay.

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lindabees | @lindabees | Aug 15 8:38am
In reply to @kjstein "Hi All, I too see Dr. Sonbol at Mayo Arizona and love him and the team...." + (show)
@kjstein

Hi All, I too see Dr. Sonbol at Mayo Arizona and love him and the team. I was diagnosed with an unknown primary in January 2021 with mets to liver. I started Lanreotide immediately and was just taken off that a month or so ago (not stopping progression and no carcinoid symptoms). I did PRRT (4 cycles) starting in summer of 2021 with great results (shrinkage of existing tumors) and had no progression of disease until summer 2024. All the areas treated with PRRT still show no change, but a couple of new areas of concern emerged with scans in June). Started Everolimus 5 mg and did well (except for mouth sores) for one month when we increased the dose to 10mg. Within about 10 days of 10 mg I was having significant side effects and resulting blood work showed anemia. Back to 5 mg starting today and with my first follow up scans in September. I had few side effects with PRRT (mostly fatigue and slight anemia by the end of treatments), and a few with lanreotide, but nothing that couldn't be handled with changes in eating habits. Dr. Sonbol's team were incredibly helpful with all and the Phamacologists (especially Jennah) have just been amazing helping me through the dosage issues with Everolimus. Encouraged to see so many on here with good results from Everolimus.

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Jennah is a treasure!!!

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