PNET and fatigue/weakness

@tmickelson Hi and welcome to Mayo Connect. Do you know where your tumor is on your pancreas? Is it growing into anything else like veins?

It’s on the neck of the pancreas. I don’t know about growth into veins.

Diagnosed with pancreatic NET in 2023. I have fatigue much of the time, along with occasional dizziness or shortness of breath. Some medications can make the fatigue worse. I just try to get one or two things done a day and not schedule too much. I like getting home early in the evening as I know my energy drops quickly after that.
Sometimes it’s hard to get people to understand this. They tend to think if I’m not currently hospitalized that I must be cured and don’t understand my limitations.

@zacharycat Thanks for sharing what you have experienced. I find the constant fatigue is frustrating, partly because it’s hard to explain and partly because there doesn’t seem to be any solution. It helps to hear that I’m not alone with this.

@tmickelson Like at @zacharycat suggested, sometimes it just come with the diagnosis. I was diagnosed in 8/22. My PNET and liver spread blocked some veins, so I was wondering if you had any of that going on. I too have adjusted to realistic expectations with my energy. I begin the day with the most energy and it decreases with each passing hour. I try to schedule some time for rest mid day. I also run out of energy in the early evening, if not sooner. I do go for hikes with my dog every morning, so my energy level has greatly increased over time one step at a time. Other than fatigue, how are you feeling? How are you holding up mentally and emotionally?

@tomrennie Most days I am in good shape emotionally as I’m fortunate to have a wonderful, supportive family. I have occasional down days, usually due to the limitations on what I can do in a day. My doctor told me he doesn’t think the fatigue is from the tumour, but there is no other explanation for the debilitating weakness and fatigue I experience. It’s one of the reasons I wondered if others with a PNET were dealing with fatigue.