1. < Neuroendocrine Tumors (NETs)

Stage 4 Carcinoid tumor

Posted by badi @badi, Mar 6, 2023

To make a very long story short. Hubby was diagnosed in Oct 2022 with a carcinoid tumor. Dr removed a mass from the small intestine. He had a Pet Scan in November 2022 and the results were not good.
Stage 4 - Areas affected
Abdomen, Large scattered mesenteric lesions are noted
Mass lesion noted in the tail of the pancreas
Musculoskeletal System - Multiple dotatate avid skeletal lesions are noted = Starnum, left 4th rib, right acetabulum, Body of C3, C6 and T3
Head and Neck - SUV - 20.57 measuring 1.34cm x 1.13cm
Thorax - donate avid mass lesions are noted in close relation to the heart and also the right bilar, left hilar, and descending aorta medically
Conclusion of the PET/CT - Extensive dotatate avid lesions are noted in the tail of the pancreas, small bowel, mesentery, heart, mediastinum and atasseous sites.
To put in language that I understood from the Oncologist, bone cancer areas affected his neck, left ear, hips, chest and legs (bone).
He received an injection (I still don't know what injection it is) as Dr just explained that it is to slow the growth of cancer.
He had 4 injections so far one per month.

My concern is that hubby is getting weaker by the day in and out of the hospital with diaree. Last two weeks refuse to go back to hospital, He is losing weight and stamina. Can't even move without any assistance.

Is there a different treatment than the injection and what are the best medicines for diaree, I have tried everything change of diet, only liquids at one stage, and drinking supplements, but nothing seems to stay inside his body.

I would really appreciate any advice or suggestion. Thank you so much

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

kathyalbert501 | @kathyalbert501 | Mar 7, 2023

Carcinoid cancer is so difficult to diagnose. I’m so sorry that you and your husband are going through this situation. This website has wonderful information and resources for you. The people are first rate.

I was recently diagnosed after being besieged by various symptoms. Luckily it appears we have got mine at an early stage and undergoing treatment every three weeks with Lanreotide.

Two things in my suggestion box are #1-contact your oncology staff. Many have nurse navigators to answer your questions and get you appointments with a nutritionist, pain management etc. #2-make an appointment with the oncologist just for you. Make a list of everything you want to ask, and be blunt, proactive. See if you can take a family member or friend so you have a backup.

Go to Carcinoid.org or have a friend help you with the internet stuff. But first contact the oncology office.

Sending prayers and strength for both of you.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 7, 2023

Hi Lisa,
Ivermectin tablets are approved at very specific doses for some parasitic worms, and there are topical (on the skin) formulations for head lice and skin conditions like rosacea. The FDA says Ivermectin is not an anti-viral (a drug for treating viruses).

Researchers are studying Ivermectin to see if it may be used as an anti-cancer drug and early studies show promise. Please note that this research is in the early stages (mice studies) and has not yet been tested in human trials. Ivermectin is not a proven standard treatment for neuroendocrine tumors.

Please tell your doctors that you are self-prescribing ivermectin. They will let you know is this is beneficial or harmful. It may have interactions with proven treatments.

REPLY
1 reply
lisanewell68 | @lisanewell68 | Mar 7, 2023
In reply to @colleenyoung "Hi Lisa, Ivermectin tablets are approved at very specific doses for some parasitic worms, and there..." + (show)
@colleenyoung

Hi Lisa,
Ivermectin tablets are approved at very specific doses for some parasitic worms, and there are topical (on the skin) formulations for head lice and skin conditions like rosacea. The FDA says Ivermectin is not an anti-viral (a drug for treating viruses).

Researchers are studying Ivermectin to see if it may be used as an anti-cancer drug and early studies show promise. Please note that this research is in the early stages (mice studies) and has not yet been tested in human trials. Ivermectin is not a proven standard treatment for neuroendocrine tumors.

Please tell your doctors that you are self-prescribing ivermectin. They will let you know is this is beneficial or harmful. It may have interactions with proven treatments.

Jump to this post

They aren't doing anything. When my GP found the 0.6 cortisol level, and I was having terrible attacks. She prescribed ativan and muscle relaxers. I'm on bovine gland, and feel some better. I know this is serious and needs to be monitored. Nothing. I have to ask for blood work.

REPLY
lisanewell68 | @lisanewell68 | Mar 8, 2023

Over the years, once in awhile a doctor will suggest Metamucil, to bulk up the stool with and hopefully less loose stools. Talk with your doctor, because a couple have varied with how it is mixed up. Good Luck, Be Blessed.

REPLY
badi | @badi | Mar 9, 2023

Dear Lisanewell69,

Thank you for the response, I am going back to the Dr today with hubby will definately asked about the product.

Kind Regards

Maré

REPLY
badi | @badi | Mar 9, 2023
In reply to @hopeful33250 "Please keep in touch, @badi, I look forward to hearing from you again. Will you post..." + (show)
@hopeful33250

Please keep in touch, @badi, I look forward to hearing from you again.

Will you post as you have any questions or concerns?

Jump to this post

Hi,

I will definitely come back to you.

Thank you

REPLY
badi | @badi | Mar 9, 2023
In reply to @sophiarose "When I was diagnosed that my NET had come back 2 1/2 years after my liver..." + (show)
@sophiarose

When I was diagnosed that my NET had come back 2 1/2 years after my liver resection
I was shocked!!! I had no symptoms!!! I was feeling great!!!
My oncologist told me I had to go on Lanreotide to slow down the growth of the tumors it hopefully shrink them
I had a very bad reaction to Lanreotide it gave me severe diarrhea and flashing to the point of sweat pouring off me from head to toes
I barely left my house and when I did I wore a diaper
I did 3 injections 1 every 28 days and since the oncologist insisted it wasn’t from the Lanreotide he put me on Creon which made me sicker I begged and he didn’t listen
I found a new doctor one who did listen
She put me on octreotide
So far I had 7 injections
1 every 28 days
My diarrhea is gone from the beginning and my flashing is still there but nowhere like it was
Neither drug worked on keeping the tumors from growing or multiplying so I just had a liver embolization done
Don’t know the outcome of that yet
I hope this help with giving some direction
I wish your husband all the best
This site is s great force of hope snd direction
Get him on board
Good luck

Jump to this post

Hi,

I agree this site is beyond great. Since I joined am I more informed, Amazing that doctors don't share this information?

REPLY
1 reply
badi | @badi | Mar 9, 2023
In reply to @kathyalbert501 "Carcinoid cancer is so difficult to diagnose. I’m so sorry that you and your husband are..." + (show)
@kathyalbert501

Carcinoid cancer is so difficult to diagnose. I’m so sorry that you and your husband are going through this situation. This website has wonderful information and resources for you. The people are first rate.

I was recently diagnosed after being besieged by various symptoms. Luckily it appears we have got mine at an early stage and undergoing treatment every three weeks with Lanreotide.

Two things in my suggestion box are #1-contact your oncology staff. Many have nurse navigators to answer your questions and get you appointments with a nutritionist, pain management etc. #2-make an appointment with the oncologist just for you. Make a list of everything you want to ask, and be blunt, proactive. See if you can take a family member or friend so you have a backup.

Go to Carcinoid.org or have a friend help you with the internet stuff. But first contact the oncology office.

Sending prayers and strength for both of you.

Jump to this post

Hi,

I've tried the oncologist, went there with a list of questions (with hubby) maybe that was a mistake, and the Dr, answer most of my questions with there will be bad and good days. If the diaree is out of hand, then it is a bad day. If his legs are swollen and painful (another bad day).

However, this site is great, The information that was shared by different people is very helpful.
I will try again with the oncologist, hopefully will they be more accommodating and helpful

Kind Regards

REPLY
badi | @badi | Mar 9, 2023
In reply to @kellysg "Yes, please keep me posted about the PRRT. My experience with the treatment was positive, with..." + (show)
@kellysg

Yes, please keep me posted about the PRRT. My experience with the treatment was positive, with the only side effects being fatigue, which got a little worse with each one, and mild hair loss.

Hope goes a long way in our journey! Hugs and love to you as a caregiver because I truly believe it's just as hard, if not harder, for you than it is for the patient.

Feel free to reach out any time with questions or just needing support. We, on this forum, got you covered 🥰

Jump to this post

Thank you, such a relief to hear from people that understand. I am truly blessed since I joined this support forum.

REPLY
sophiarose | @sophiarose | Mar 9, 2023
In reply to @badi "Hi, I agree this site is beyond great. Since I joined am I more informed, Amazing..." + (show)
@badi

Hi,

I agree this site is beyond great. Since I joined am I more informed, Amazing that doctors don't share this information?

Jump to this post

Hats off to the Mayo Clinic they do go all out to keep people informed weather they are a patient or not
Good luck to you and your family

REPLY
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