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.

firepowr | @firepowr | Jan 13, 2023
In reply to @lindaldotson "I've only just been diagnosed with two neuroendocrine tumors in the liver. I'm very interested in..." + (show)
@lindaldotson

I've only just been diagnosed with two neuroendocrine tumors in the liver. I'm very interested in reading the messages in this support group and also connecting with anyone else who has been diagnosed with liver tumors. Thank you!

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I have “innumerable” (probably about 80) liver mets. Unknown origin. Diagnosed January 2020. Grade 2/3, well-differentiated. Also have tumors in pancreas, adrenal gland, lungs, bone, and parotid gland.

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2 replies
lindaldotson | @lindaldotson | Jan 13, 2023
In reply to @firepowr "I have “innumerable” (probably about 80) liver mets. Unknown origin. Diagnosed January 2020. Grade 2/3, well-differentiated...." + (show)
@firepowr

I have “innumerable” (probably about 80) liver mets. Unknown origin. Diagnosed January 2020. Grade 2/3, well-differentiated. Also have tumors in pancreas, adrenal gland, lungs, bone, and parotid gland.

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How are you being treated?

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1 reply
firepowr | @firepowr | Jan 13, 2023
In reply to @lindaldotson "How are you being treated?" + (show)
@lindaldotson

How are you being treated?

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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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3 replies
lindaldotson | @lindaldotson | Jan 13, 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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Thank you. I'm so new to this. Saw oncologist for first time this afternoon. They're sending me for petscan. He indicated his gut instinct is that my liver tumor originated elsewhere. He is still trying to connect the dots. I would like to stay in touch with you and share info. Is that ok with you?

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1 reply
lindaldotson | @lindaldotson | Jan 13, 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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Also, there are 3 tumors, but one very large.

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firepowr | @firepowr | Jan 13, 2023
In reply to @lindaldotson "Thank you. I'm so new to this. Saw oncologist for first time this afternoon. They're sending..." + (show)
@lindaldotson

Thank you. I'm so new to this. Saw oncologist for first time this afternoon. They're sending me for petscan. He indicated his gut instinct is that my liver tumor originated elsewhere. He is still trying to connect the dots. I would like to stay in touch with you and share info. Is that ok with you?

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Absolutely!!

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dbamos1945 | @dbamos1945 | Jan 13, 2023
In reply to @sanjaykumar1 "I undergone whipple surgery of pancreatic tumor 9 month back.after 1 months of surgery the chromogranin..." + (show)
@sanjaykumar1

I undergone whipple surgery of pancreatic tumor 9 month back.after 1 months of surgery the chromogranin A level was 500.after every 3 months, the CGA test was done,and it is increasing from 500 to 2200,3300 and finally 9200 now.the MRI and dota petscan is OK.the doctor has no resolution for increasing CGA level.the only issue is that I have motion 3 to 4 times daily with no further weight loss after operation.

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Sanjaykumar1:
I have broached the subject of how patients can evaluate what the RISE or FALL of the ChromograninA blood test results for Neuroendocrine Carcinoid Tumors; however, no info forthcoming from this site yet. Stay tuned?!?! This way of evaluating how the current treatment is indeed shrinking and/or controlling hormone from tumor metastases is needed.
All info will be appreciated. Bette

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sanjaykumar1 | @sanjaykumar1 | Jan 22, 2023

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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1 reply
tennisfan | @tennisfan | Jan 22, 2023

I would be interested in information on how to combat adhesions. I have had for bowel resections and now I am dealing with small bowel obstruction due to scaring.

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lindaldotson | @lindaldotson | Jan 22, 2023
In reply to @firepowr "I have “innumerable” (probably about 80) liver mets. Unknown origin. Diagnosed January 2020. Grade 2/3, well-differentiated...." + (show)
@firepowr

I have “innumerable” (probably about 80) liver mets. Unknown origin. Diagnosed January 2020. Grade 2/3, well-differentiated. Also have tumors in pancreas, adrenal gland, lungs, bone, and parotid gland.

Jump to this post

Thank you for your reply firepowr. How are they treating these tumors? What symptoms are you experencing? Again, thank you!

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