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Prognosis for Metastasized NET
My husband was dx with metastasized NETs originating in the small intestine 3 years ago. He's been on Sandostatin shot monthly since dx. Up until his most recent pet scan last week the shot seemed to be holding the tumors "at bay". This recent scan showed growth of the 3 large tumors in his liver to have grown and the tumors have also spread to his other lobe. His oncologist said "the next line of treatment would be a chemo pill called Afinitor but since you're not having any carcinoid symtoms that is your choice as to if you wanted to take it". Then he said, "there's nothing else we can do". I asked him about surgery on the liver "debulking" and he said "bc is in the other lobe and he's having no symtoms there's no reason for surgery" and he went on to say "the liver only needs 15% to function". After much research is clear that his once slow growing tumors have moved into a faster growing disease. I can see changes in him, that being more trios to the bathroom with diarrhea and he's more tired lately. But for the most part he still goes to work and dies his normal activities. Bc I don't feel like we're getting straight answers from his Oncologist i would like a straight answer. Understanding that whatever is said is not in stone, and generalized. I know there is no cure, I know their treatment was to try to keep the tumors from growing and spreading but we are at a crossroads now where the shot isn't working. He has heart disease, with 3 stents, middle age, overweight and works in a high stress environment. All things that don't help with his disease. From everthing I've read approx 17% make it to the 5 year mark. I need some insight as to what to expect since he doesn't want surgery or to take the chemo pill. Will he start to decline? Am I correct in what I've read in his prognosis? Is he at the advanced growth stage? I'm a person who NEEDS to know and the Oncologist saying , that's all we can do says a lot. Any advise would be helpful. Thanks.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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Stay positive! My husbands liver tumors have been as big as 9 cm ..up and down dependent on treatment. No scans again until April but feeling positive. He seems better than he has since the beginning. Recouping well from second PRRT.
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3 ReactionsWondering if anyone has heard about monoclonal antibody treatments and if they have been tried on NET’s?
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2 ReactionsI am so happy his PRRT treatments are working and he can tolerate
If it wasn’t for this group I really don’t know I would have done
It has made me so focused I was so all over the place
Thank you for letting me know
All my best and luck fir good results In April
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4 ReactionsHello @bnjncrew
Your question about monoclonal antibody treatments is an interesting one. I found some information on this type of cancer treatment on Mayo Clinic's website. Here is the link to that information,
--Monoclonal Antibody
https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/monoclonal-antibody/art-20047808
While the article above does not answer the question of whether or not it will help with NETS you can read under the heading "Questions to Ask Your Health Care Team" ideas about testing the cancer cells to see if this treatment would work. At the end of this article there is also information about being involved in clinical trials. A clinical trial might be helpful because this is reported to be a very expensive treatment.
Have you talked with your oncology team about this treatment? If so, I'd be interested in what they have to say.
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1 ReactionThank you for sharing in such detail. The information is so helpful. You’ve obviously been through a lot, and there’s no stopping you! I admire how knowledgeable you are about this process. Good luck with your treatment! Please keep us posted.
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1 ReactionI also had chronic diarrhoea, 20 times a day, since having my Nets removed, including a right hemicolectomy in Sept 23.
I have found success by fasting until 12 pm each day. So 16 hours fasting and 8 to eat sensibly.
I still get some urgency after the first meal, usually within minutes, but it’s become mostly normal within three weeks.
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3 ReactionsI’m so sorry you and your husband and going through this. My husband has the almost the same dx. Try connecting with Susan Meckler Plummer on Facebook. She can help you and possibly advise you on next steps. Praying for you and your husband
Hello @chignightoro01 and welcome to Mayo Connect. I am sorry to hear of your husband's diagnosis of NETs. As this is your first post on Mayo Connect, please share, as you are comfortable doing so, a bit about how long he was diagnosed and what his treatment options have been.
Also, how are you doing as a Caregiver?
We are all self-test subjects.
I have been doing intermittent fasting (dinner ending at 5) and breakfast starting 14-16 hrs. later before I knew I had NETs. BUT I was told, and it also works better for my system, if I eat small and frequently (about every 3 hrs.) between breakfast and dinner.
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1 ReactionMy movements have become completely normal the last two weeks. If not a little constipated.
Given how chronic it was I wonder if I had a bug
I started a dose of antibiotics at the same time I started fasting.
But it’s great.
I went on a road trip last week and diving and didn’t have any urgent movements.
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