1. < Neuroendocrine Tumors (NETs)

Anyone have experience with "functioning" Pancreatic NETs?

Posted by justme54 @justme54, Mar 16 8:45am

I was recently diagnosed with PNETS saw an oncologist and had a second opinion through University of Kansas. Through that session I learned my tumors are functioning and putting out their own hormones. The 3 levels that are high are serotonin, gastrin and chromogranin A. I was told the normal highs for these compared to what mine are: Serotonin 283/506, Gastrin 180/996, and Chromoranin A < 225/1766. I have discontinued Pantoprazole and was told I could use Pepcid if needed for GERD. I will have another lab done to see if the numbers have changed.

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

pavlina60 | @pavlina60 | Mar 18 2:07pm

PPI ( ProtonPumpInhibitors) like Pantoprazole affect these hormone levels, so definitely repeat the tests after some time without PPI

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kevinmonroemi | @kevinmonroemi | Mar 18 5:26pm

Did I read your gastrin was 996? Mine was 2000 and I stayed on my gerd medicine it can affect the level some however when it’s that high it’s negligible you should also have a gastroenterologist to help manage it. You sound a lot like me grade 2 stage 4 do you belch a lot? Let me know what you find out as I have been trying to find someone that can relate to what I am going through

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1 reply
justme54 | @justme54 | Mar 18 6:07pm
In reply to @kevinmonroemi "Did I read your gastrin was 996? Mine was 2000 and I stayed on my gerd..." + (show)
@kevinmonroemi

Did I read your gastrin was 996? Mine was 2000 and I stayed on my gerd medicine it can affect the level some however when it’s that high it’s negligible you should also have a gastroenterologist to help manage it. You sound a lot like me grade 2 stage 4 do you belch a lot? Let me know what you find out as I have been trying to find someone that can relate to what I am going through

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Does sound familiar. Yes, belching and other gi issues.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 18 6:25pm
In reply to @charliepnet "I have 1 PNET, diagnosed last Dec. Still educating myself. This is a good sight for..." + (show)
@charliepnet

I have 1 PNET, diagnosed last Dec. Still educating myself. This is a good sight for me to stay in touch with. I pick up a lot of things to research. There are also monthly zoom meetings you can sign up for. Sorry you have this but we role with the punches and keep moving forward right. Best wishes for you!

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@justme54, here's more information about the monthly support meetings that @charliepnet refers to. You are welcome to join. They are hosted by Mayo Clinic social workers on Zoom.

- Pancreatic Cancer Support Group Meeting https://connect.mayoclinic.org/event/pancreatic-cancer-support-group-20/
Meetings on the fourth Tuesday of each month from 12:00 noon to 1:30 p.m. Arizona time
Next meeting March 26.

- Neuroendocrine Cancer Support Group Meeting https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-11/
Meetings on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time
Next meeting April 4

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Turkey | @tomrennie | Mar 19 12:17pm
In reply to @pavlina60 "I have been diagnosed with pNET in December 2022. Grade 3 (Ki=18) with liver metastases (Stage4)...." + (show)
@pavlina60

I have been diagnosed with pNET in December 2022. Grade 3 (Ki=18) with liver metastases (Stage4). I underwent distal pancreatectomy/surgery for that (alongside with total hysterectomy for endometrial cancer). Mine was 'debulking surgery', as there were too many small tumors on my liver. I also had spleen removal ( tumor was too close and engulfing the head of the pancreas and the spleen), and gallbladder removal. In March 2023 I started Somatuline/Lanreotide therapy every 4 weeks. I take Creon as my pancreas cannon supply the necessary digestive enzymes. I also follow high protein mostly plant and fish diet. Just had my first anniversary from my chemotherapy :).
You can reach out to me here or in private if you have questions, or are interested in my experience.

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Happy anniversary. Your sharing has helped me so much. You are one tough cookie.

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2 replies
pavlina60 | @pavlina60 | Mar 19 12:51pm
In reply to @tomrennie "Happy anniversary. Your sharing has helped me so much. You are one tough cookie." + (show)
@tomrennie

Happy anniversary. Your sharing has helped me so much. You are one tough cookie.

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Thank you! Ever since my diagnosis I have been looking at this experience kind of from the outside, as if this is not my body, and trying to give myself advice and ideas how best to deal with it.
We have not been dealt the best hands, but fighting we will! Wish you luck with treatment and look ahead with hope!

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1 reply
pavlina60 | @pavlina60 | Mar 20 3:07am
In reply to @tomrennie "Happy anniversary. Your sharing has helped me so much. You are one tough cookie." + (show)
@tomrennie

Happy anniversary. Your sharing has helped me so much. You are one tough cookie.

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Thank you! We all need FAITH, strength and positive thinking!💜🦓

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Turkey | @tomrennie | Mar 20 11:02am
In reply to @pavlina60 "Thank you! Ever since my diagnosis I have been looking at this experience kind of from..." + (show)
@pavlina60

Thank you! Ever since my diagnosis I have been looking at this experience kind of from the outside, as if this is not my body, and trying to give myself advice and ideas how best to deal with it.
We have not been dealt the best hands, but fighting we will! Wish you luck with treatment and look ahead with hope!

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It's funny that we have a similar approach to our cancer. When I was first given my diagnosis in 8/22, I was fascinated with the science behind it. Just like a student in school, my curiosity took over. I let the teacher, the doctor, teach. He knows more than I do. As a student, I asked questions and took diligent notes. The teacher drew pictures that I still have today. Like you, I have the ability to learn objectively as if it is someone else's body. I go home and do what the teacher told me to do. I approach every appointment the same way. Do my homework, but let the teachers... now the multiple members of my care team, teach first. I have found most of my questions get answered. My favorite question is still the same. Forget that I am your patient. Think of me as your student. What should I focus on learning that would make me the best doctor treating someone in my position? I shut up, listen, take notes, then study that. Thanks Pavlina again for sharing. I love learning with and from you.

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1 reply
pavlina60 | @pavlina60 | Mar 20 2:24pm
In reply to @tomrennie "It's funny that we have a similar approach to our cancer. When I was first given..." + (show)
@tomrennie

It's funny that we have a similar approach to our cancer. When I was first given my diagnosis in 8/22, I was fascinated with the science behind it. Just like a student in school, my curiosity took over. I let the teacher, the doctor, teach. He knows more than I do. As a student, I asked questions and took diligent notes. The teacher drew pictures that I still have today. Like you, I have the ability to learn objectively as if it is someone else's body. I go home and do what the teacher told me to do. I approach every appointment the same way. Do my homework, but let the teachers... now the multiple members of my care team, teach first. I have found most of my questions get answered. My favorite question is still the same. Forget that I am your patient. Think of me as your student. What should I focus on learning that would make me the best doctor treating someone in my position? I shut up, listen, take notes, then study that. Thanks Pavlina again for sharing. I love learning with and from you.

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I think this is the best approach! There is no use of being frustrated or discouraged! Science is moving forward and new treatments and tests are available! This diagnosis gave me different perspective at life, and made me appreciate small things! We got this! Pavlina💜🦓

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1 reply
Turkey | @tomrennie | Mar 22 8:57am
In reply to @pavlina60 "I think this is the best approach! There is no use of being frustrated or discouraged!..." + (show)
@pavlina60

I think this is the best approach! There is no use of being frustrated or discouraged! Science is moving forward and new treatments and tests are available! This diagnosis gave me different perspective at life, and made me appreciate small things! We got this! Pavlina💜🦓

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I agree. Cancer is both a blessing and a curse. I choose the blessing. I believe that old time baseball player Yogi Berra said it well; "90% of baseball is mental. 50% is physical."

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