Liver NETs: Anyone has extreme swelling in feet and ankles?

@tgsenn70 Where is the swelling?

In his ankles/feet.

Consider compression sox. Swelling is a sign of poor circulation among other things

Where is he being treated in Georgia? Great physicians in Atlanta at Atlanta Liver and Pancreas.

@tgsenn70 Anywhere else?

Hi. I had a NET in my liver that caused uncontrollable high blood pressure, type 2 diabetes, severe anemia, and extreme swelling in my feet and ankles. The swelling was unlike swelling seen in allergic reactions or other causes. I could not walk or drive; the swelling was so bad, you could hardly see my toes and even my husband's shoes were too small. Some of my torso and my face were swollen but not to the extreme degree of my feet and ankles. I used pressure stockings, I used massage guns, had physical therapy at home. I did not see any real results. I had Y90 nuclear beads procedure on the NET April 28, 2024. On May 5, 2024, the swelling in my feet and ankles left and did not come back; the other effects of the tumor, including the diabetes, left. I write this in hopes that treatments for the liver might also lead to some relief to you from the ankle and feet swelling.

I had a lot of foot and ankle swelling in the hospital. It got worse after hepatic artery embolization, which caused high fever and kept me from walking for several days. Was on IV then and fluids got so bad near the lungs that I needed thoracentesis to remove fluids so I could breathe (this happened twice in hospital, a 3rd time after discharge).
Swelling remained while on chemo, prednisone and diazoxide. Finally a consulting oncologist (god bless her) went through my whole meds list, told me to get rid of this, taper off that and see what happens. That plus getting active again (walking and as soon as possible bicycling) got the swelling under control.
She also reduced my chemo dose (still got sick) and got me interviewed for PRRT at another hospital.

@tomrennie he does also have a little swelling in his abdomen that has been there a while. He normally weighs around 260-270. He is currently close to 240. I included his weight information just to provide some perspective on the size of his belly (if that makes sense). Because of his former weight we didn’t really notice if he was experiencing swelling in his abdomen.

@zacharycat I can’t remember if I have already stated but we hope to start PRRT treatments next month.
I hope your evaluation for them goes well.

@mcharlesfrancis he has started back to wearing them. Thanks!