1. < Neuroendocrine Tumors (NETs)

Pancreastatin level at 1500

Posted by Phxsuns @cfuller84, May 1, 2021

Hi,
I have had 2 pancreastatin test 1st at 1,000 2nd at 1500 . My gallidium pet showed diffuse uptake in the pancreas but thought it probably not cancer otherwise normal. I am having chronic severe abdominal pain and fatigue. I feel like my scan missed the tumor due to my symptoms and the high pancreastatin. The GI said they cant do anything other than pain meds because nothing showed up on the scan. Has anyone else had this happen? Any suggestions?

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dbmenger | @dbmenger | Sep 11, 2021
In reply to @cfuller84 "Yes it's good to hear from you too. I plan on posting again and will keep..." + (show)
@cfuller84

Yes it's good to hear from you too. I plan on posting again and will keep you updated 🙂 I have been taking several vitamins and also doing accupuncture and my abdominal pain has improved though not gone away. I still feel very fatigued all the time, and I also get the heart racing episodes where it feels like my heart is pounding very hard and fast and I feel dizzy. I was diagnosed with POTS at mayo and they think that is the cause. I wonder if other nets patients get similar symptoms. I also saw on another post someone recommended a new copper pet scan I think I will definitely look into that if they are wanting me to get another pet scan. Hope you have a wonderful weekend.

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What’s POTS? I’m still being observed for NETs because of high Chromogranin A levels. I’ve had three scans, all negative, and don’t want anymore because my hair is exiting my scalp. Occasionally my heart races and I feel dizzy and I have weird hot flashes.
Is pancreastatin a blood test I should ask for? None of my doctors has requested anything but four (so far) Chromogranin A tests and two HIAA tests. The latter were negative. I’m so weary of all this and wish someone would find a solution.

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2 replies
Phxsuns | @cfuller84 | Sep 13, 2021
In reply to @dbmenger "What’s POTS? I’m still being observed for NETs because of high Chromogranin A levels. I’ve had..." + (show)
@dbmenger

What’s POTS? I’m still being observed for NETs because of high Chromogranin A levels. I’ve had three scans, all negative, and don’t want anymore because my hair is exiting my scalp. Occasionally my heart races and I feel dizzy and I have weird hot flashes.
Is pancreastatin a blood test I should ask for? None of my doctors has requested anything but four (so far) Chromogranin A tests and two HIAA tests. The latter were negative. I’m so weary of all this and wish someone would find a solution.

Jump to this post

POTS stands for postural orthostatic tachycardia syndrome. It is a disorder of the autonomic nervous system that causes issues with heart rate and blood pressure. I was diagnosed after a tilt table test done at Mayo. That's interesting. I had normal chromogranin A but high pancreastatin and slightly elevated HIAA levels. It would not hurt to ask your Dr about it to get their opinion. Every doctor that I have spoken to in regards to pancreastatin has given me a different opinion. Some of the doctors believe a higher than normal pancreastatin is indicative of having a NET. I completely understand where you are coming from. The last provider I saw " said it seems like you have been on a very long road trying to get a diagnosis ". I had to hold back my emotions and just say yes yes I have been. I hope you find the answers and your able to get a diagnosis.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 17, 2021
In reply to @cfuller84 "Hi . I just saw your reply. The ENT was really busy and booked way out..." + (show)
@cfuller84

Hi . I just saw your reply. The ENT was really busy and booked way out but I will be meeting with him on sept 16th. I also had my pancreastatin repeated again and was told if it still high then they want to do a 3rd pet scan and refer me back to oncology. So im waiting the results of this pancreastatin test hoping its much lower.

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Hi @cfuller84

I recall that you had an appointment with an ENT specialist scheduled for yesterday. I hope that appointment was helpful to you.

Would you be able to provide an update?

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Phxsuns | @cfuller84 | Sep 17, 2021

Hi Teresa,
Yes I was able to see the ENT. Well he wants me to get another CT scan done with contrast because he said the tumor was not visualized well on the MRI i had just done LOL.. These imaging tests can get frustrating as it seems they need so many of them. I think I have 3 or 4 already showing the tumors and now i need another. He said after the ct scan then he will probably want to do whats called a fine needle biopsy. I am happy with that as it seems not be very invasive. The great news is my pancreastatin test has come down from 1500 to 50 !! Whatever I have been doing is working and I need to keep it up !!! I have been taking several supplements and also doing periodic fasts and I believe it is working and my body is healing. I am feeling very grateful. I will still continue on with the biopsy plan.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 18, 2021

Hi @cfuller84

Yes, all of those scans do get frustrating! I've had more scans these past two months and it does get tiresome after a while.

I can only imagine how thrilled you must be in the lower pancreastatin numbers, I'm glad that your lifestyle changes have worked so well for you.

Do you have an appointment yet for the next scan with contrast?

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1 reply
Phxsuns | @cfuller84 | Sep 18, 2021
In reply to @hopeful33250 "Hi @cfuller84 Yes, all of those scans do get frustrating! I've had more scans these past..." + (show)
@hopeful33250

Hi @cfuller84

Yes, all of those scans do get frustrating! I've had more scans these past two months and it does get tiresome after a while.

I can only imagine how thrilled you must be in the lower pancreastatin numbers, I'm glad that your lifestyle changes have worked so well for you.

Do you have an appointment yet for the next scan with contrast?

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Yes I am so ready to be done with the scans. At least they said I will not have to get a new pet scan because my pancreastatin came down. Yes seeing my pancreastatin come down has really motivated me to continue with lifestyle changes to improve my health. They should be calling me soon to schedule the new ct scan I haven't heard anything yet. The contrast ct scans are my least favorite I the contrast always gives me palpitations and tachycardia for a while afterwards.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 18, 2021
In reply to @cfuller84 "Yes I am so ready to be done with the scans. At least they said I..." + (show)
@cfuller84

Yes I am so ready to be done with the scans. At least they said I will not have to get a new pet scan because my pancreastatin came down. Yes seeing my pancreastatin come down has really motivated me to continue with lifestyle changes to improve my health. They should be calling me soon to schedule the new ct scan I haven't heard anything yet. The contrast ct scans are my least favorite I the contrast always gives me palpitations and tachycardia for a while afterwards.

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Hello @cfuller84

I've heard from other members on Connect who have reactions to contrast. Some of them had been given an IV of fluids before the contrast was administered. You would probably have to have your doctor put in an order in advance to try this but perhaps it would help.

I don't usually have after-effects from the contrast but I do get flushed and have a strong metallic taste in my mouth during the process (not to mention that it is hard to find a good vein)!

I hope it goes well for you. If possible, will you let me know when the scan is scheduled?

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margaret12 | @margaret12 | Sep 12, 2022

I wanted to ask where did You have Your Pacreastatin test done? I had mine at BioAgilitix lab and then Inter Science Institute and the results came back widely different. Was Your completed at Mayo?
Did You have any findings on CT/MRI/PETCT Gallium68, etc.
I will be willing to talk over the phone. I’m scheduled to have Gallium68 on Thursday but struggle to go through it.
I would appreciate if You could reach out.
Thank you,

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margaret12 | @margaret12 | Sep 12, 2022

Did anyone here had Copper64 v Gallium68 for liver findings? Did anyone had harmatomas or hemangiomas mistaken for liver mets or vice versa.
Thank you,

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anxious88 | @anxious88 | May 27 2:17am
In reply to @dbmenger "What’s POTS? I’m still being observed for NETs because of high Chromogranin A levels. I’ve had..." + (show)
@dbmenger

What’s POTS? I’m still being observed for NETs because of high Chromogranin A levels. I’ve had three scans, all negative, and don’t want anymore because my hair is exiting my scalp. Occasionally my heart races and I feel dizzy and I have weird hot flashes.
Is pancreastatin a blood test I should ask for? None of my doctors has requested anything but four (so far) Chromogranin A tests and two HIAA tests. The latter were negative. I’m so weary of all this and wish someone would find a solution.

Jump to this post

Hey! Can I ask you if you fin the cause of your high chromogranin levels? I am currently in the same situation

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