Anyone with NET stage 4 experience heavy sweating and high gastrin?

Posted by larrycheng @larrycheng, Nov 20, 2022

Hello everyone,
My name is larry from Dallas, Texas. 09/2020 I found a mass in my left neck and Biopsy showed NET stage 4. My gastrin level was high and up to 3580 ( normal <200) at that time. after all the PET scan, Ga-68 Dotatate then started Chemo for 6 months. the neck tumor was much smaller and Gastrin level was dropped to normal level. three months late, the tumor in the liver was get bigger so the PRRT treatment for 8 months but the liver tumor slightly smaller in the three month late CT scan.
May this year, re-biopsy, new Med Port inserted and started FolFox Chemo. during this Chemo therapy, the Gastrin level increased up to 6000+, the same time, I have been excessive sweating and no one really able to explain why the gastrin level so high. anyway, this chemo stopped after 3 months due to not effective treatment.
From September, I have been took Sutent as target treatment but this medication has been dropped my WBC and ANC really low so I have to stop to use Zarxio to simulate the bone morrow to produce more WBC and ANC. the same time, I feel my tumor in my neck getting bigger. I went to the MD Anderson get second opinion but the treatment is nothing changed.
Anyone with NET has been use Stuent? how is the response? anyone has the gastrin level so high and changed up or dow? any explanation?
Thank you for all your time.

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

Teresa, Volunteer Mentor | @hopeful33250 | Nov 21, 2022

Hello @larrycheng and welcome to Mayo Connect. It sounds as if you have a lot of questions regarding your treatment plan for NETs. Have you had an opportunity to speak with a NETs specialist? I would encourage you to see if you can get a virtual or in-person appointment with someone who specializes in this rare form of cancer. There are three Mayo facilities with NET specialists. If you would like to seek an appointment at Mayo, here is a link to begin that process, http://mayocl.in/1mtmR63.

On the Carcinoid Cancer Foundation (CCF) website there is a list of doctors throughout the world who are considered NETs specialist. I would encourage you to look at this as well.
--For Patients
https://www.carcinoid.org/for-patients/
At the CCF website, you will also see information on follow up tests. There are also videos of doctors who specialized in NETs and you might find these videos a good educational tool.

larrycheng, are you open to seeking another opinion at this time?

larrycheng | @larrycheng | Nov 21, 2022

In reply to @hopeful33250 "Hello @larrycheng and welcome to Mayo Connect. It sounds as if you have a lot of..." + (show)

@hopeful33250 Thank you for your answer. I just saw the second opinion with NET specialist from MD Anderson.

larrycheng | @larrycheng | Feb 1, 2023

My NET is everywhere and getting worse now. I just had Sudent treatment for 4 months but seems not working because I end in Emergency for low sodium, GI bleeding and Jaundice. Heavy sweating and high gastrin level. My whole body are aching, change 6 towels on pillows due to the heavy sweating. have to using walker to walk. waiting for new treatment plan from my oncologist. anyone one there with NET has theses symptoms? how to treat it?
Thank you.
Larry