Stage 4 Carcinoid tumor
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.
Hello @panorman3 and welcome to the NETs support group. I'm glad that you found this forum. I joined Connect when I was facing my third surgery for a NET and I found the experience of others to be very helpful in facing the next surgery. As my first surgery was in 2003, I am now a 21-year survivor of NETs.
I look forward to hearing from you again as this sounds like a new diagnosis for you. Is my understanding correct? You say in your post that your NET is too difficult to remove. Could you provide a bit more information on this? Is it the location or the type of tumor?
If the injection is Lanreotide every 28!
I did 3 injections and had to switch to ocreotide because the diarrhea was overwhelming I couldn’t leave the house
They tried me on creon but it didn’t work
He can try Imodium
Good luck
Location, just found said is has been in process for ten years