1. < Neuroendocrine Tumors (NETs)

What topics do you want for the Neuroendocrine Support Group?

Posted by amandafl @amandafl, Sep 8, 2019

There’s a new Neuroendocrine Support Group that’s open to patients and caregivers over the phone (for those who aren’t local) and in person in Jacksonville, FL. Are there any topics that you want to discuss?

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

lindaldotson | @lindaldotson | Jan 22, 2023
In reply to @firepowr "Started with two rounds of CAPTEM. Didn’t work at all. Then did 10 rounds of FOLFIRINOX,..." + (show)
@firepowr

Started with two rounds of CAPTEM. Didn’t work at all. Then did 10 rounds of FOLFIRINOX, followed by 50 rounds of FOLFIRI. I was stable from Oct 2020 until Oct 2022 on FOLFIRI. Scans in November 2022 showed growth in a few liver tumors so I started PRRT with octreotide injections in December 2022. Second PRRT treatment is in February.

What are they doing for you? It’s so interesting to me how they have to design treatment for each of us because every case is so different!!

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Sorry, I just read your response. Thank you for your time and experience.

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Teresa, Volunteer Mentor | @hopeful33250 | Feb 7, 2023
In reply to @sanjaykumar1 "My chromogranin A level is continuously rising from 500 after operation to more than 9000 now..." + (show)
@sanjaykumar1

My chromogranin A level is continuously rising from 500 after operation to more than 9000 now in 9 months after operation. All others dota petscan ,mri,endoscopy is ok . Does anyone throw light on this .

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@sanjaykumar1

I can certainly understand your concern about the significant rise in the CgA levels, especially since your surgery. The significance of the CgA levels is best evaluated in relation to other tests. Here is a link to a website of the Carcinoid Cancer Foundation that explains (to patients) the various tests used as both diagnostic and follow-up regarding NETs,
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/

On Mayo Connect, we also have a discussion that addresses this test and its implications as well as the concerns that it raises. I would encourage you to read the posts in this discussion. Here is the link: https://connect.mayoclinic.org/discussion/chromogranin-a-level-was-539/

Your oncologist is the best person to contact regarding this significant rise in the CgA levels. Have you talked with your doctor about your concerns?

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kim1965 | @kim1965 | Feb 8, 2023

My wife is coming up on a surgery date, March 1st for for removal of mass on pancreas, removal of gall bladder, and removal of as many tumors as they can get. This is after 9 cycles of chemo(pills). Just trying to find any and all info on what to expect after the surgery which is very extensive.

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1 reply
pavlina60 | @pavlina60 | Feb 8, 2023
In reply to @kim1965 "My wife is coming up on a surgery date, March 1st for for removal of mass..." + (show)
@kim1965

My wife is coming up on a surgery date, March 1st for for removal of mass on pancreas, removal of gall bladder, and removal of as many tumors as they can get. This is after 9 cycles of chemo(pills). Just trying to find any and all info on what to expect after the surgery which is very extensive.

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Hi! I just came out of the hospital yesterday. Had extensive distal pancreatectomy, spleen and gall bladder removal,plus 5 small liver resections. Simultaneously I had a total hysterectomy ( not NET!), discovered during a PET scan. 9hrs surgery. I had a drain bag that was removed yesterday before going home. I also have a feeding tube (since the tumor was touching the stomach and may needed resection (not extensive and I am slowly " waking it up", so I am eating by mouth 🙂 - it is the small wins in life ❤️).
Now recovering at home. Still waiting for the pathology of all. And trying to stay optimistic!!
Be strong, well motivated, and good luck! Pavlina

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1 reply
kim1965 | @kim1965 | Feb 8, 2023
In reply to @pavlina60 "Hi! I just came out of the hospital yesterday. Had extensive distal pancreatectomy, spleen and gall..." + (show)
@pavlina60

Hi! I just came out of the hospital yesterday. Had extensive distal pancreatectomy, spleen and gall bladder removal,plus 5 small liver resections. Simultaneously I had a total hysterectomy ( not NET!), discovered during a PET scan. 9hrs surgery. I had a drain bag that was removed yesterday before going home. I also have a feeding tube (since the tumor was touching the stomach and may needed resection (not extensive and I am slowly " waking it up", so I am eating by mouth 🙂 - it is the small wins in life ❤️).
Now recovering at home. Still waiting for the pathology of all. And trying to stay optimistic!!
Be strong, well motivated, and good luck! Pavlina

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Thank you so much, big hugs to you. Please keep us updated to your next win!🥸

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