1. < Neuroendocrine Tumors (NETs)
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PNET: What helps with fatigue and weakness?

Posted by tmickelson @tmickelson, Apr 22 7:30am

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 | Apr 25 10:35am

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 | Apr 25 1:50pm

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

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pavlina60 | @pavlina60 | Apr 25 5:32pm
In reply to @zacharycat "Diagnosed with pancreatic NET in 2023. I have fatigue much of the time, along with occasional..." + (show)
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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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tmickelson | @tmickelson | Apr 26 4:21am

I’m amazed by your ability to make a joke when you’ve clearly gone through so much. That’s impressive and takes strength. I am fortunate that my stage of the tumour means they are monitoring its growth with no plans for surgery until it reaches a larger size. I’m sure I look perfectly healthy to most people, which makes it hard for others to understand why I’m so feeble.

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lindabees | @lindabees | Apr 26 9:56am
In reply to @tmickelson "Thanks for the suggestion. I’m taking B12 supplements but I may not be absorbing it very..." + (show)
Profile picture for tmickelson @tmickelson

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

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@tmickelson
Some people get injections for it. Talk to your doctor about the fatigue and see what they suggest

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Turkey, Volunteer Mentor | @tomrennie | Apr 27 10:23am
In reply to @tmickelson "I’m amazed by your ability to make a joke when you’ve clearly gone through so much...." + (show)
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I’m amazed by your ability to make a joke when you’ve clearly gone through so much. That’s impressive and takes strength. I am fortunate that my stage of the tumour means they are monitoring its growth with no plans for surgery until it reaches a larger size. I’m sure I look perfectly healthy to most people, which makes it hard for others to understand why I’m so feeble.

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@tmickelson @pavlina60 Maintaining a sense of humor helps. The journey can be full of ups and downs. Cancer doesn't play by the rules unfortunately. Sometimes making a joke, and laughing, is a healthy way to cope. I find laughter is very therapeutic.

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tmickelson | @tmickelson | Apr 27 11:12am
In reply to @tomrennie "@tmickelson @pavlina60 Maintaining a sense of humor helps. The journey can be full of ups and..." + (show)
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@tmickelson @pavlina60 Maintaining a sense of humor helps. The journey can be full of ups and downs. Cancer doesn't play by the rules unfortunately. Sometimes making a joke, and laughing, is a healthy way to cope. I find laughter is very therapeutic.

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@tomrennie I agree 100%.

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pavlina60 | @pavlina60 | Apr 27 2:58pm
In reply to @tomrennie "@tmickelson @pavlina60 Maintaining a sense of humor helps. The journey can be full of ups and..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@tmickelson @pavlina60 Maintaining a sense of humor helps. The journey can be full of ups and downs. Cancer doesn't play by the rules unfortunately. Sometimes making a joke, and laughing, is a healthy way to cope. I find laughter is very therapeutic.

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@tomrennie , absolutely! Laughter heals!

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MB | @bellom | May 7 8:41am

I have a malignant one that was incidentally found, 7mm, non-functional. I didn't think the fatigue I get was related to the tumor until I read your post. I just thought it was from something else. I started walking 1-3 miles a day recently, and it seems to help even though my legs and hips disagree. This seems to have increased my energy. I've also picked up pickleball. There are days when my body really needs a nap, so I do, and then I go back out there.

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tmickelson | @tmickelson | May 7 10:39am
In reply to @bellom "I have a malignant one that was incidentally found, 7mm, non-functional. I didn't think the fatigue..." + (show)
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I have a malignant one that was incidentally found, 7mm, non-functional. I didn't think the fatigue I get was related to the tumor until I read your post. I just thought it was from something else. I started walking 1-3 miles a day recently, and it seems to help even though my legs and hips disagree. This seems to have increased my energy. I've also picked up pickleball. There are days when my body really needs a nap, so I do, and then I go back out there.

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@bellom Thanks for sharing your experiences. I’m trying to find a good balance between getting out for walks without hitting exhaustion. And I agree, sometimes the best option is to take a nap. 🙂

My doctor has not been able to find any other cause of the fatigue, so that’s why I have wondered if it’s the tumour, even at its size and stage of cancer. Based on the comments here, it definitely seems like there is a link.

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