1. < Neuroendocrine Tumors (NETs)

Carcinoid syndrome; NET not found

Posted by willowme1963 @willowme1963, Sep 20, 2023

I have been receiving treatment for carcinoid syndrome for 3 years. It is believed tumor is in small intestine. Doctors waffle back and forth about diagnosis, blood test showed significant increase in chromogranin a ( almost 3000) at time of diagnosis. Since treatment started, numbers are in normal range. 2 PET scans and many other diagnostics have not located it other than thickening in small bowel that isn't able to be reached via scope. Stopped treatment 3 times only to have symptoms come back with a rage and more difficult/time to get back under control. Would LOVE to know of someone who is determined to get real answers rather than vague response. Anyone with similar story would be greatly appreciated as I am discouraged.

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pavlina60 | @pavlina60 | Sep 24, 2023
In reply to @meandmysis "She has a well-differentiated grade 3 PNET that metastases to the liver. There were quite a..." + (show)
@meandmysis

She has a well-differentiated grade 3 PNET that metastases to the liver. There were quite a few lessons on her liver and the tumor is located in the tail of her pancreas. The Lanreotide injection was the best route for her at this time. She has a wonderful oncologist. We have been told by several doctors that this is an incurable cancer. It has definitely been a rough time. Her husband passed away unexpectedly in February and she was diagnosed in May. Thank you for your encouragement and prayers. We certainly need them. ♥️

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Hang in there! I am having my 7th Lan injection tomorrow. Had distal pancreatectomy with spleen, gallbladder, part of stomach and full hysterectomy on Feb.1st. It gets better and easier after a few injections! And Lan really worked! I just had my CTscan and it showed slight( but there!) shrinking in my liver mets.
Prayers for you and your sister! You got this!!💜🦓

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1 reply
meandmysis | @meandmysis | Sep 24, 2023
In reply to @pavlina60 "Hang in there! I am having my 7th Lan injection tomorrow. Had distal pancreatectomy with spleen,..." + (show)
@pavlina60

Hang in there! I am having my 7th Lan injection tomorrow. Had distal pancreatectomy with spleen, gallbladder, part of stomach and full hysterectomy on Feb.1st. It gets better and easier after a few injections! And Lan really worked! I just had my CTscan and it showed slight( but there!) shrinking in my liver mets.
Prayers for you and your sister! You got this!!💜🦓

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Thank you pavilna60. Prayers for you as well! 🙏🏼♥️

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pavlina60 | @pavlina60 | Sep 24, 2023
In reply to @meandmysis "She has a well-differentiated grade 3 PNET that metastases to the liver. There were quite a..." + (show)
@meandmysis

She has a well-differentiated grade 3 PNET that metastases to the liver. There were quite a few lessons on her liver and the tumor is located in the tail of her pancreas. The Lanreotide injection was the best route for her at this time. She has a wonderful oncologist. We have been told by several doctors that this is an incurable cancer. It has definitely been a rough time. Her husband passed away unexpectedly in February and she was diagnosed in May. Thank you for your encouragement and prayers. We certainly need them. ♥️

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Has debulking surgery ever been suggested for your sister? I had that plus gallbladder removal as Lan damages the gallbladder and eventually has to be removed (in my case the tumor was in the tail of the pancreas, 20×16 cm, vascularized in the spleen, which had to go, too. And part of my stomach). I had some big lesions removed from the liver, as well. Maybe pain comes from issues with gallbladder? Ask questions! Are doctors planning to shrink the tumors first and then do surgery? Definitely ask for PET with Ga dotatate, NETs and mets glow! God be with you!! There is no cure( for now!), but people live reasonable life with this diagnosis! As the saying goes' I may not die FROM cancer, I will die WITH this cancer"💜🦓Hugs to you both! Support is very important!!

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terlato | @terlato | Sep 24, 2023
In reply to @kathyalbert501 "Hi Teralto, Wanted to wish you luck in finding answers to your symptoms. I have read..." + (show)
@kathyalbert501

Hi Teralto,
Wanted to wish you luck in finding answers to your symptoms. I have read about the Prenuvo Scan and it seems to offer hope to many people. Have you had a proper PET scan to search for the neuroendocrine/carcinoid tumors? Although, that too can come out normal.

I just wanted you to know we all praying for a good outcome of your testing.

Blessings to you and your family.

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Hi, Thank you. Yes I have had ALL the test and scans and ultrasounds and they look at me and say there is nothing. But, the G-68 Pet Scan is not available for me in Las Vegas. And I was told by my Endocrinologist and Insurance Company will would take months before it might be approved! I read even that scan can miss it! They don't really take me seriously. But, I'm the one suffering with crazy symptoms. A friend of mine, who is a retired surgeon, is the only one who knows what I'm going through. He told me in all of his 30 years of practice he only came across one Carcinoid Tumor which was very difficult to find. He is also encouraging me to go further. I'm very persistent when it comes to my health. We will see in a few weeks how everything goes. Thank you and everyone for your encouragement and prayers.

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kathyalbert501 | @kathyalbert501 | Sep 24, 2023

You are amazing. Keep it up and keep us posted. This is what you have to do in order to get a diagnosis. I will be praying and thinking of you.

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anxious88 | @anxious88 | Apr 22 1:06pm
In reply to @willowme1963 "Prayers and we'll wishes for REAL results and answers! Thank you so much for sharing everyone..." + (show)
@willowme1963

Prayers and we'll wishes for REAL results and answers! Thank you so much for sharing everyone and will keep pressing on.

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Did you do a DOTATOC scan?

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