Started PRRT treatment: Anyone experience tumor markers increasing?

Hi, my wife will be meeting with the doctor tomorrow regarding NETS metastasizing in the small intestine area. It may require surgery. Has anyone gone through this procedure before? What are the expectations?
I have been able to keep my wife to embrace the present moment. ( Gratitude and Thankfulness). Presently, she has been feeding off my positive energy.
I'm reaching out for additional optimistic feedback, please.
Thanks-:)

Sorry you got sick! But happy to hear you are finally going to get the PRRT. I can’t imagine having to wait that long. I was diagnosed in May 2021 with Pancreatic primary grade 2 stage 4. Good luck with the treatment!

@kevinmonroemi You indicate you were diagnosed in May of 2021 with Grade 2/Stage 4. I was diagnosed in August of 2025 with the same. Can you tell me what has been done for you? Was it diagnosed as well-differentiated and what was your ki-67 number? I am hoping that your time frame is something I can look forward to.

@kevinmonroemi You indicate you were diagnosed in May of 2021 with Grade 2/Stage 4. I was diagnosed in August of 2025 with the same. Can you tell me what has been done for you? Was it diagnosed as well-differentiated and what was your ki-67 number? I am hoping that your time frame is something I can look forward to.

@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.

@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.

@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.

@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.

@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?