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

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.

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.

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.

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?

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.

Yep, always out of the fridge for at least 12 hours before but it's not the pain of the injection so much I have learned to live with that, it is the side effects. I literally have 1 week.of feeling OK per month

Hello @amygirl,

Often, size is not the most important factor to determine the need for the monthly injections, but carcinoid syndrome symptoms, such as having hot flashes, diarrhea, etc. Are you having a lot of these symptoms?

Also, are you currently being seen by a NET specialist, @amygirl? If not, it might be wise to have at least one consultation with one of these specialists. Mayo Clinic has NET specialists at all three of its locations. Here is a link with appointment information: http://mayocl.in/1mtmR63.

If for any reason you cannot be seen at a Mayo facility, here is a listing of other NET specialists listed by state: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

How are you feeling? Are you maintaining your weight or losing weight? Is your appetite OK? I look forward to hearing from you again.

Yep, always out of the fridge for at least 12 hours before but it's not the pain of the injection so much I have learned to live with that, it is the side effects. I literally have 1 week.of feeling OK per month

Yes me. Lanreotide. Have been having for some months now and is horrendous. Am thinking of stopping as sideceffects awful. The actual injection is sooooooooooo painful too. I feel so lethargic like I cannot get out of bed. Cannot do anything as feel so weak.