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← Return to Started PRRT treatment: Anyone experience tumor markers increasing?
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Started PRRT treatment: Anyone experience tumor markers increasing?
Neuroendocrine Tumors (NETs) | Last Active: Apr 12 8:18am | Replies (27)Comment receiving replies
@mmar2025 it was discovered during emergency surgery for a perforated esophagus. Surgeon saw tumors all over my liver. It was documented with a biopsy. Primary is the pancreas found with Petscan. I have grade 2 ki-67 7% metatastic to the liver 20 -30 tumors inoperable. It is well differentiated. I have gastrinomas that hyper secrete Gastrin I’ve had levels as high as 2200 that was the cause of my perforated esophagus. To reduce tumor burden I had 7 months of Captem with mixed results. Was also put on Lanreotide injection to control symptoms that worked great. All tumors continued to grow September/ October 2022 I had two separate y-90 treatment to the liver with some rare side effects! However the treatment reduced and or stabilized my many tumors for about 3 years gastrin levels went down to 200. Tumors have stated to grow again I had my first SBRT treatment in December 2026 tumor that was targeted is stable unfortunately a new one appeared and another one grew so I am about to have another SBRT treatment in a week targeting those 2. I’ve had a lot of highs and lows. Try to stay positive I go to University of Michigan Medical Center happy to have a great Multidisciplinary team led by Dr Sahai he said I am doing very well and still have tools in the toolbox. I hope this helps and good luck! I hope you have a team.
Replies to "@mmar2025 it was discovered during emergency surgery for a perforated esophagus. Surgeon saw tumors all over..."
@kevinmonroemi Sorry to hear about the new growths. Keep pounding away at them. Please let us know how next week goes OK? Good luck with everything.
I really appreciate your in-depth explanation. I had not heard of SBRT. It
is good to know about options. I will be starting my second PRRT treatment
this week. So far; so good. I am lucky in that I am nonfunctional in that I
do not have side effects other than the extensive tiredness which is
draining, but I just keep going. Thank you for responding. Let me know how
things go for you. I wish you the best.
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@kevinmonroemi thank you for sharing.
I have functional Gastrinoma PNET at head of pancreas removed in May 2020. Since July 2024, has been on 3 monthly MRI and blood tests. Twice CT scans, twiceGA68 PET scans, ultrasound but not lighted up. Last MRI in Feb showed soft tissues at the staples between pancreas & small intestines where it’s impossible to reach with endoscopy. Hence a multiphasic CT was ordered in Mar 26 & unsure if it’s scar or lesion. But my Gastrin level from 1300 down to 656 then up 959 in Feb 26. No treatment is given except for 80mg Esomeprazole to manage the high Gastrin level. Next Blood tests & MRI scheduled in early May 26.
My oncologist said would order Octreotide if Gastrin level hit 1500.
May I know if you are still on PPI? Were you taking PPI when your level went down to 200? What is SBRT?