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Neuroendocrine Carcinoma with Liver Metastasis
So first of all Hi! I’m Carrie and live in Alberta Canada. Just diagnosed and started chemotherapy for my cancer that started in my bowels and metastasized into into my liver. The doctors say I’m terminal but won’t give me a timeline. Is this normal? And I have another question: are NETS the same as Neuroendocrine Carcinomas? This is what they tell me I have in my liver now.
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Hello @amygirl,
Many members have responded to you regarding different treatments for liver METs. Please remember that medications to treat cancer do not always result in the same side effects for all patients. If you read the posts about the monthly injections you will see that some side effects lessen over time. Whenever we consider a cancer medication, we need to consider the benefits that can be obtained.
What side effect is concerning to you?
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1 ReactionNo I haven't been. Only told about shot once a month once my tumors become a certain size and that shot has side effects. I will ask at next appt. Thank you
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1 ReactionI have only been told about a shot once a month that has side effects. Wondering what the side effects could be. Thank you for your reply . I will ask at next appt.
What about CapTem which is a pill form chemo specifically for NET. I just finished my fourth cycle on it, but after my third cycle had a CT scan and all of my measureable tumors have shrank, some by half. My Dr is actually shocked that it is working so well and wants some of my blood so they can test to see why it is working
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2 ReactionsHi! My cancer has also metastasized to my liver and I get Octreotide injections every month and I also just finished my 4th (and final) Lutathera radiation infusions. Please look this up if you’re interested as it is an alternative to chemo which I was told would not help. This particular treatment ( Lutathera) specifically targets the neuroendocrine cancer cells unlike chemo which can go to other parts of the body as I understand it. My doctor won’t talk about timelines but instead tells me never to give up as there are new/better treatments coming out everyday. Are you sought a second opinion and/or a NET specialist? It never hurts to seek a second opinion.
Prayers for you and anyone dealing with this awful diagnosis…❤️
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2 ReactionsI have metastatic NET
Did they tell you about Afinitor? It is a form of chemotherapy
There are many people in it with good outcomes
I took it for 9 weeks however I got one of the rare side effects and had to stop
But other than that it was tolerable
There is also PRRT which I just finished and will get scanned in February
There is a lot of treatments out there
Be strong
Keep fighting
I myself have gotten 3 didn’t options and I am researching a 4th
Best wishes
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1 ReactionHello @amygirl,
Here is a link with some information about Y90 treatments for tumors in the liver.
--Y90 radioembolization
https://www.mdanderson.org/treatment-options/y90-radioembolization.html
You said that you were told that there were no chemo treatments for your situation. Within the past couple of years a chemo, referred to as PRRT has been developed for NETs.
Are you seeing a NET specialist? If so, you might want to discuss with your oncologist other treatments that might be available to you.
What is Y90 treatments? Why chemo? I was told would do nothing?
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1 ReactionI have NET in my liver but was told chemo does nothing. Wondering if u also have another form of cancer also.
Hello @bubbledalmia and welcome to the NETs discussion on Mayo Connect. I can understand why you question the liver metastasis given the clear lymph nodes and blood vessels. This sounds like a good question to ask the oncologist. Have you addressed that in a follow up appointment?
Regarding the discomfort, gas and unsettled bowel movements, that is also a good question for the surgeon during your follow up appointment. However, as I have had three surgeries of the upper digestive tract for NETs, I know that given you are only two months post-surgery, it might take some more time for your digestive tract to accept this new normal.
After any type of digestive tract surgery, small frequent meals, that are low in quantity as well as quality (low fat, broiled fish, chicken, veggies that are well-cooked) all part of the best eating plan. What type of eating plan have you had since your surgery?
If this continues to remain a problem for you, it might be wise to ask for a referral to a registered dietician. I have had two consults with a registered dietician post-surgery and those consults have been very helpful in my understanding of the best eating plan.
Have you considered seeing a registered dietician? Your surgeon or oncologist can most likely make that referral for you.