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Neuroendocrine Cancer journey update
Cancer journey update.
Most know 4yrs ago I had Neuroendocrine pancreatic cancer. Its a very rare cancer that can take many years to grow or be aggressive. There are many variations such as hormonal or non hormonal, KI-67 rating, etc. Mine was KI-67 4% (very, very slow growing) and non hormonal (no issues with digestion, etc.) Also mine are well-differentiated (meaning cancer cells act like healthy normal cells. Basically I had the best type of cancer to get if you have to get cancer I guess! LOL
I had most of pancreas, spleen and some lymph nodes removed. I did not have any radiation or chemo, just surgery. I instantly became type 3c diabetic but other than that no issues and have maintain all clear otherwise healthy and fell fine for 4 years.
Fast forward to April this year 2026, blood work showed Chromogranin A (CgA) spiked (a special marker for the rare type of cancer I had which ironically doesn't show on regular cancers nor do they usually test for) also the ct scans show spot on liver.
This lead to cat scans that show multiple spots so no I have stage4 cancer. They first suggested surgery on liver and ordered MRI to better map, this show to risky as larger tumors to close to heart and small spots scattered deeper in liver.
Then the biopsy showed same type of cancer as before, only difference KI-67 is 16% (but still slow-ish)
This resulted in different course of Sandostatin (octreotide acetate) injections every 28days (blocks receptors of the cancer cells to slow growth).
Then best plan was PRRT (Peptide Receptor Radionuclide Therapy) towards the end of the monthly Sandostatin injections (I still will get this about a week after PRRT) The PRRT is very radio active but since its highly targeted for the type of cancer I have, it doesn't cause damage to normal cells like the "Red Devil" chemo. Ironically there has to be a lot of check boxes for this treatment to work and all of them are checked in my case so should be very effective.
8-6-2026
Yesterday I made it through first PRRT infusion round. Was interesting as they took me in a small private room with pee pads on floor, the chair, bathroom, etc.. everywhere. Then they gave me 4 pills for nausea. Spent 3hrs getting iv in each arm at same time of stuff to protect kidneys.
Then they wheeled a cart with lead lined container containing radioactive tube about size of 2 c cell batteries. Dr came in and put tube in a machine that started dispensing into ivs for about 45mins.
Then another 3 hrs of the kidney protector in ivs. After about 15mins when that finished, they brought in a Geiger counter and 6' away said i registered 3.5.
Gave me water to drink and made sure I urinated at least 3 times, to make sure kidneys worked and felt OK. I'm slightly tired now and ate OK last night.
8-7-2026
I slept good it seemed except my sugar hovered 250-300 all evening and early night. Normal insulin amount didn't touch it. Don't really feel any different but said days 2&3 are usually the worst.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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My goodness, all I can say, is , God be with you in this journey, it does sound as though you are being greatly taken care of by the doctors and nurses, for that I am so grateful 🥲
I send prayers and peace to you in Jesus Name 🙏🏽
Thank you for sharing your story! It sounds as if it you had felt you'd been cured by the initial surgery. Maybe it was quite a shock to discover it back at stage 4.
I'm glad you have confidence in the PRRT. I hope it makes the difference you need!
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1 ReactionGood luck. Nothing unusual in your account. I had all those treatments (and more) within 2 years as I was stage IV on diagnosis. Two different hospitals also read my biopsy and gave different Ki-67 numbers, so it can be subjective.
Of all the treatments I found the PRRT the easiest to tolerate. My energy level was much higher then on the oral chemotherapy cycles I recently started. I am looking for clinical trials of other treatments and my new oncologist (the third one so far) says he will assist in this.
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2 Reactions@zacharycat
My wife has been battling SB Nets (primary) since 2014 + metastases with the monthly injections until progression was noted; 4 cycles PRRT in 2023; 2 additional cycles in 2026, current imaging shows "stability"
Question: [as NETs often will progress, we have been researching what could be the next treatment(s)] You mentioned "oral chemotherapy cycles" - can you elaborate?
Thanks Mark
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1 Reaction@markmark007 The CAPTEM regimen is an oral chemotherapy combination of capecitabine and temozolomide used primarily to treat neuroendocrine tumors (NETs). It typically follows a 28-day cycle, where capecitabine is taken twice daily for a set number of days, and temozolomide is added for a subsequent set of days. (AI definition)
I'm hoping for some repeat PRRT as well. Four treatments in 2024 with Lutathera.
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3 ReactionsHello @xwing777 and welcome to Mayo Clinic Connect. I see that @zacharycat, @markmark007, @taly, and @nannahaseightneight have already posted with you. I would also like to invite @tomrennie to share his experiences with you.
If you would like to meet others who have had PRRT treatments, here are links to Connect discussions about PRRT:
--PRRT and Lanreotide
https://connect.mayoclinic.org/discussion/prrt-and-lanreotide/
--PRRT Treatment: What to Expect
https://connect.mayoclinic.org/discussion/prrt-treatment-2/
We have several members who have had successful treatment with PRRT. They include @vinnie694, and @sophiarose.
Will you continue to post with your questions and concerns? I look forward to hearing from you again.
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1 Reaction@zacharycat
Many thanks
Mark
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1 Reaction@markmark007 @xwing777 I was on CAPTEM for 13 cycles which took about a year. It reduced my tumors and lesions sizes in about half. It also greatly reduced my number of liver lesions. I have been on a reduced amount of capecitabine for the last three years. It has kept everything relatively stable.
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2 Reactions@markmark007
Following up on the above:
Are there preferred treatments that are used for PNETs vs. SB NETs?
i.e. one more effective than the other?
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1 ReactionMy husband, Ron, has just had his 2nd PRRT treatment on Tuesday, 8/4/26. The main side effect has been fatigue from both treatments although he left for fishing in Canada 3 days after this 2nd treatment. He slept 13 hours the 2nd day and took an hour nap the 3rd day and left on the 4th day. His first NET was found in 1995 and surgically removed from between the Illeum and Bowel. 28 years later, he was rediagnosed Stage 4 with tumors in his skull and entire body. Our prayer is that the PRRT treatment will stabilize the tumors -- any decrease would be a miracle!! It sounds like you have been through a lot in the past 4 years. I hope that Ron's journey will give you hope for the future! God Bless!!
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