Anyone have swelling with liver metastases?

Hello @willam and welcome to the NETs support group on Mayo Connect. You ask an interesting question about swelling and liver metastasis. We have several members on Connect with liver metastasis so I will invite them to share with you about their experiences, @tomrennie @hollywood817 @carcinoid23462 and @vinnie694.

As this is your first post on Mayo Connect, please share, as you are comfortable doing so, a little about your history with NETs. Is this a new diagnosis for you? If so, what type of treatments have been suggested for you by your medical team?

I have pNET grade stage4 with liver metastases. I have not noticed any swelling. I am also on monthly Lanreotide injections.
What treatment are you on? Maybe it is a side effect of that?

I also have NET’s in my liver, I am on monthly octreotide injections. I have not noticed any swelling.

I’m so glad you reached out to us with your swelling concerns. My treatment of Somatuline Depot is in its 8th month due to Small Intestine NET primary with metastases to liver, stage 4 with no swelling symptoms. I would check my latest blood labs for kidney function irregularity and discuss with primary doc and oncologist. If all labs normal I would get appointment with Cardiologist to check on heart function and leg blood valve ability to recirculate blood. Just my thoughts… hope they help.

Thank you very much

I have pNET with liver metastases. I had leg swelling after my first CAPTEM treatment. It turned out to be ascites. What type of chemo are you on?

I can only offer my experience. I have ankle swelling with my liver met. It is believed to be caused by heart valve damage due to carcinoid syndrome. If you have had high serotonin levels or carcinoid syndrome I would suggest seeing a cardiologist to rule out heart damage. It is just one of the bonus prizes that our cancer can cause. I hope you find the cause of your swelling. Best wishes on your journey.

thank you for the input

Hi @William my husband's first symptoms of this disease was swelling of ankles, then legs, then abdomen. The oncologist was the first to say it was carcinoid heart disease. We had seen a cardiologist that didn't catch it. The doctors kept upping his dosage of lasix which didn't help. If the swelling persists, you should be persistent as well to have them check your right side heart valves. I think it can be treated with meds if caught early. We are facing valve replacement.

I'm in the same situation. Lasix not helping. Started in legs then around waist then abdomen. I am waiting to be scheduled for right side heart valve replacement and bypass due to some blockage found during a heart catherization. I am currently treating with lanriotide a hormone therapy that is supposed to stop the NET from producing serotonin and spreading. Hoping the surgery takes care of the abdominal fluid. Anybody with similar experience?