Stage 4 Carcinoid tumor: What treatments have you had?

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.

nannybb | @nannybb | Sep 3 11:42am

In reply to @tomrennie "I get a Gallium-68 Dotatate contrast PET scan. It is used to locate NETs. Have you..." + (show)

I would have to go back and check the chart notes. I had no idea there are more than 2 types of PET scans. (With or without contrast) So it is specific to identifying NETs?

nannybb | @nannybb | Sep 3 11:48am

In reply to @tstern7 "I know. It’s normal to be scared. You have to either deal with it or not...." + (show)

If you have always had surgery, then you would have experience in how long recovery usually takes. I am almost 3 months post-surgery and my pain level is still very bad. I'm trying to not take anything but Tylenol. I know everyone is different, but it will get better soon...yes?

tstern7 | @tstern7 | Sep 3 1:11pm

In reply to @nannybb "If you have always had surgery, then you would have experience in how long recovery usually..." + (show)

I recommend getting what you need to recover. The goal is to keep cortisol low and your immune system strong. If I were you, I would go to a pain management specialists. I find Tramadol helps me when needed. Good luck.

Turkey, Volunteer Mentor | @tomrennie | Sep 3 1:33pm

In reply to @nannybb "I would have to go back and check the chart notes. I had no idea there..." + (show)

Yes. Initially, I didn't know that it was the contrast used on my PET scan. I was dealing with the shock of the diagnosis. I went back and checked the chart notes as well to learn that the GA-68 dotatate contrast was used. Please let me know what you find?

sophiarose | @sophiarose | Sep 3 10:44pm

I am so sorry to hear what your husband is going through
Mine is similar no matter what I did it cancer continued to control my body
I finally did PRRT my last treatment was in November of 2024
I am almost 1 year in and I have been stable since
I do get an injection of octreotide every 28 days
I suffer from extreme exhaustion and on and off severe diarrhea
I hope this helps
Good luck