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PNET and fatigue/weakness

Posted by tmickelson @tmickelson, 3 days ago

My tumour is grade 1 and fairly stable at 1 cm so it is just being monitored for now, but I struggle with fatigue and weakness. Do others have this experience and are there any good treatment options for fatigue?

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lindabees | @lindabees | 10 hours ago

I'm sorry to hear of the fatigue you're experiencing. Have your doctors checked your B12 level? Its not unusual for pnets to cause a decrease.

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tmickelson | @tmickelson | 7 hours ago

Thanks for the suggestion. I’m taking B12 supplements but I may not be absorbing it very well.

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pavlina60 | @pavlina60 | 3 hours ago
In reply to @zacharycat "Diagnosed with pancreatic NET in 2023. I have fatigue much of the time, along with occasional..." + (show)
Profile picture for zacharycat @zacharycat

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.

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@zacharycat , exactly! We look okay on the outside, but are completely different from the inside. I am also tired most days and most of the time. Holding on until midday, but very tired in the afternoon. I had dystal pancreatectomy, splenectomy, cholecystectomy and hysterectomy, plus liver metastases - my peritoneal cavity is " really a cavity" :). It is hard from outside ppl to understand that we are still sick, even without hospitalization and visible signs...

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