1. < Neuroendocrine Tumors (NETs)

Still have symptoms after surgery

Posted by mikhailtsapenko @mikhailtsapenko, 5 days ago

Hi, my name is Mikhail, im from Moscow, Russia. I have had NET of small incestine, surgery in july, 2023. G1, ki67-2%, pT1NOMO. Need to admit, that i felt
flushes and sometimes diharea around 12 years before that, but no doctor find any problem. After surgery i did several PET CT, MRI, CT scans but everything was fine. Also i usually do the blood tests, Chromogranine, 5HIIA, serotonine, gistamine, gastrine and some other and they are also in normal range. But the issue that i continiue to feel this syndrome, with flush in the face, goosebumps, tingling of the skin, general fatigue. Also i have arthritis and osteochondrosis. My kind question, is anybody feel the same symptoms that i have even after surgery and with normal markers?

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 5 days ago

Hello @mikhailtsapenko and welcome to NETs support group on Mayo Connect. I am sorry to hear of your continued symptoms. You mention that you had surgery. Was the surgery a resection of the small intestine?

Often these symptoms can be controlled with monthly injections. Has your medical team suggested this to control your symptoms? Have you been able to maintain your weight?

REPLY
mikhailtsapenko | @mikhailtsapenko | 5 days ago

Thank you very much!
Well it was partial resection around 50 cm with ileocecal valve. I managed to hold my weight till last month, but after stress i lost around 8 kg.
Well onclologists here told that you had complete surgery and you should not have such symptoms during last year. But on November i read podcast of NetWise, where Dr. Eric Liu told that a lot of patients still feel symptoms, so that info was stressed to me.
After that my oncologist told to try Orctreotide for some time to check

REPLY
2 replies
vinnie694 | @vinnie694 | 5 days ago
In reply to @mikhailtsapenko "Thank you very much! Well it was partial resection around 50 cm with ileocecal valve. I..." + (show)
@mikhailtsapenko

Thank you very much!
Well it was partial resection around 50 cm with ileocecal valve. I managed to hold my weight till last month, but after stress i lost around 8 kg.
Well onclologists here told that you had complete surgery and you should not have such symptoms during last year. But on November i read podcast of NetWise, where Dr. Eric Liu told that a lot of patients still feel symptoms, so that info was stressed to me.
After that my oncologist told to try Orctreotide for some time to check

Jump to this post

I’ve been on Ocreotide for about 18 months it has worked great on the hot flashes, started working within days of the shots. I was experiencing over 25 episodes daily. .. I hope they find something for you, for me they were a constant reminder…

REPLY
1 reply
mikhailtsapenko | @mikhailtsapenko | 5 days ago
In reply to @vinnie694 "I’ve been on Ocreotide for about 18 months it has worked great on the hot flashes,..." + (show)
@vinnie694

I’ve been on Ocreotide for about 18 months it has worked great on the hot flashes, started working within days of the shots. I was experiencing over 25 episodes daily. .. I hope they find something for you, for me they were a constant reminder…

Jump to this post

Thank you very much for sharing info. What is not clear to me the situation with the thing is if all lab tests are ok, 5hiaa especially, there is no carcinoid heart desease issue?

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 5 days ago
In reply to @mikhailtsapenko "Thank you very much! Well it was partial resection around 50 cm with ileocecal valve. I..." + (show)
@mikhailtsapenko

Thank you very much!
Well it was partial resection around 50 cm with ileocecal valve. I managed to hold my weight till last month, but after stress i lost around 8 kg.
Well onclologists here told that you had complete surgery and you should not have such symptoms during last year. But on November i read podcast of NetWise, where Dr. Eric Liu told that a lot of patients still feel symptoms, so that info was stressed to me.
After that my oncologist told to try Orctreotide for some time to check

Jump to this post

I'm glad that you found Dr. Liu's podcast helpful,@mikhailtsapenko. So, if I understand correctly, your oncologist will begin treating you with Octreotide?

If you would like to learn more about NETs, here is a link to a website where you will find video presentations from specialists in the field of NETs.
https://www.youtube.com/@neuroendocrinecancerawaren6842/featured

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 5 days ago
In reply to @mikhailtsapenko "Thank you very much for sharing info. What is not clear to me the situation with..." + (show)
@mikhailtsapenko

Thank you very much for sharing info. What is not clear to me the situation with the thing is if all lab tests are ok, 5hiaa especially, there is no carcinoid heart desease issue?

Jump to this post

On Mayo Connect, we are not medical professionals and we cannot provide that type of information. Perhaps a consultation with a cardiologist might help you answer that question.

Are you concerned about carcinoid heart disease?

REPLY
1 reply
vinnie694 | @vinnie694 | 5 days ago
In reply to @mikhailtsapenko "Thank you very much for sharing info. What is not clear to me the situation with..." + (show)
@mikhailtsapenko

Thank you very much for sharing info. What is not clear to me the situation with the thing is if all lab tests are ok, 5hiaa especially, there is no carcinoid heart desease issue?

Jump to this post

All my Labs are good, and yearly I get a Echocardiogram, to check the heart, so far no issues with the heart..

REPLY
mikhailtsapenko | @mikhailtsapenko | 5 days ago
In reply to @hopeful33250 "On Mayo Connect, we are not medical professionals and we cannot provide that type of information...." + (show)
@hopeful33250

On Mayo Connect, we are not medical professionals and we cannot provide that type of information. Perhaps a consultation with a cardiologist might help you answer that question.

Are you concerned about carcinoid heart disease?

Jump to this post

Yeah, this is one of my concerns

REPLY
mikhailtsapenko | @mikhailtsapenko | 5 days ago

Nevertheless, my CT and PET CT and MRI scans are also ok, so i just wondering if anyone has symptoms of NET without substract on the scans and without increased lab test?

REPLY
1 reply
mikhailtsapenko | @mikhailtsapenko | 5 days ago
In reply to @hopeful33250 "I'm glad that you found Dr. Liu's podcast helpful,@mikhailtsapenko. So, if I understand correctly, your oncologist..." + (show)
@hopeful33250

I'm glad that you found Dr. Liu's podcast helpful,@mikhailtsapenko. So, if I understand correctly, your oncologist will begin treating you with Octreotide?

If you would like to learn more about NETs, here is a link to a website where you will find video presentations from specialists in the field of NETs.
https://www.youtube.com/@neuroendocrinecancerawaren6842/featured

Jump to this post

Well my oncologist told that i could try Octreotide 0,1 mg 3 times a day for a week

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