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.