Any one with Neuroendocrine tumors getting the shot once a month?

Hi
Extreme fatigue to the point where I can barely walk. I fall asleep mid sentence. Am extremely weak, My legs will not walk.
Very emotional and I am NOT a Cryer yet I cry all the time at the moment. Very Low mood. Main thing though is the tiredness not being able to go out to see my friends and not having any energy to do anything for 3 weeks out of the four.

What have you done differently to help manage your challenges with fatigue and feeling weak? Have you met with a dietician to see if altering your diet can help? Have you met with a physical therapist to get some help with keeping your strength up?

Do they warm the medicine to room temp before injection? If not than that cold fluid will be very painful going in. Most nurses warm it first, but some are in a hurry and just don't care that much.

Hi
Extreme fatigue to the point where I can barely walk. I fall asleep mid sentence. Am extremely weak, My legs will not walk.
Very emotional and I am NOT a Cryer yet I cry all the time at the moment. Very Low mood. Main thing though is the tiredness not being able to go out to see my friends and not having any energy to do anything for 3 weeks out of the four.

Same here the fatigue had me sleeping thru life last 2 1/2 plus years.
Reaction of everyone was sleep study are you sure your not depressed. Everyone is different t but keep digging and don’t stop. It is your quality of life and it is important.

For me ovaries out last fall including a NET tumor
Liver NETS stable. Sleep study showed more issues with restless legs than apnea. I’m still very positive even with the yawning so don’t think it’s depression. My calcium was normal. My PT said it has to be hormonal. Bone pain muscle pain severe fatigue. It’s gone. I had normocalcemic hyperthyroidism. I had two parathroid glands removed two weeks ago and life is night and day. I wake up at 8 or 9am not noon to 1 pm which has been my usual. I asked oncology team to send me to neuroendocrine referral for high PTH/ MEN1 thank goodness's. My husband said he noticed the difference right away. I was too tired to talk before. So keep searching our bodies are complex and w NETS everyone has a different path. Keep asking searching finding something somewhere will help.

Correction normal calcemic hyperparathyroidism
The para is so important

The Lanreotide needs to be warmed up at room temperature at least 20 min and the injection has to be given at just the correct location. My husband mostly have had experiences nurses who know how to administer this, but once he had someone who had never done it before and it was extremely painful for him. Also, if the correct method is not followed, you may not be getting the full dose. Please don’t be shy to ask the nurses about their experience with this.

I agree! Over the last 13 years of getting these shots I have had to educate nurses who did not know how to: mix the sandostatin drug... and now on Lanreotide I make sure they know to give the shot slowly. I have learned to ask each month, even though some nurses do not appreciate me doing that. But it is my body and I want to get the full effect of it.

I agree! Over the last 13 years of getting these shots I have had to educate nurses who did not know how to: mix the sandostatin drug... and now on Lanreotide I make sure they know to give the shot slowly. I have learned to ask each month, even though some nurses do not appreciate me doing that. But it is my body and I want to get the full effect of it.

Hello @michellehcapouch and welcome to the NETs support group on Mayo Connect. I see that you are new to this group. In reading your previous posts, it looks like your diagnosis occurred in 2019 and that you have had two surgeries as well as the monthly injections.

It appears that you also had two parathyroid glands removed. Were NETs also found in the parathyroid glands, or were the parathyroid glands removed because of a non-cancerous growth?