1. < Neuroendocrine Tumors (NETs)

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

Posted by amygirl @amygirl, Dec 23, 2024

I have heard there is side effects to the once a month shot( unsure of the name) what has any one experienced?

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zacharycat | @zacharycat | May 16 6:10pm
In reply to @ruthybabybaby1 "Yes me. Lanreotide. Have been having for some months now and is horrendous. Am thinking of..." + (show)
@ruthybabybaby1

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.

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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.

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2 replies
amygirl | @amygirl | May 16 10:10pm
In reply to @mballinger51 "I have been having the monthly injections of Octreatide. (Sp?) for about a year. It also..." + (show)
@mballinger51

I have been having the monthly injections of Octreatide.
(Sp?) for about a year. It also helped with diarrhea and the hot flashes that were so HOT, HOTMAIL HOT!!
I have some nodes in my liver too and one near my inferior vena cava. These are all staying the same with no growth or new lesions. They won’t do surgery on the nodes in my liver because they are too small. Not sure on the one other one but I suspect for the same reason, too small. My scans have shown no growth on these nodes so I am living with the monthly injections and
“keeping the faith” that nothing is growing either new or current. What does your liver show?

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So at least one is an inch or more? Do u know the size when u found out? How long from the time u found out u had NET til u started injections? Do u have fast or slow growing? Thank you

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ruthybabybaby1 | @ruthybabybaby1 | May 17 2:44am
In reply to @zacharycat "Do they warm the medicine to room temp before injection? If not than that cold fluid..." + (show)
@zacharycat

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.

Jump to this post

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

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2 replies
vickihorseman | @vickihorseman | May 17 4:36am
In reply to @ruthybabybaby1 "Yes me. Lanreotide. Have been having for some months now and is horrendous. Am thinking of..." + (show)
@ruthybabybaby1

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.

Jump to this post

I had a really hard time for the first 6 months or so then it started getting a little better. I have them every 3 weeks and dread it however..........I have found that taking an ultram then I climb in bed on a heating pad. Usually if I rest I feel better the next day.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 17 7:50am
In reply to @amygirl "What are the sizes? I was told I wouldn't be started on a shot until one..." + (show)
@amygirl

What are the sizes? I was told I wouldn't be started on a shot until one or more is 1 inch.

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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.

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1 reply
vinnie694 | @vinnie694 | May 17 8:40am
In reply to @ruthybabybaby1 "Yes me. Lanreotide. Have been having for some months now and is horrendous. Am thinking of..." + (show)
@ruthybabybaby1

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.

Jump to this post

My doctor prescribed lidocaine patches, I put them on a few hours before the shot, you know your getting a shot but there is really no pain..

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zacharycat | @zacharycat | May 17 10:56am
In reply to @ruthybabybaby1 "Yep, always out of the fridge for at least 12 hours before but it's not the..." + (show)
@ruthybabybaby1

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

Jump to this post

I dreaded the shot until the warmup. Can't say I've had any side effects, but not sure that its helping much either. Didn't get any shots last May - Nov when receiving PRRT, and that was the best I've felt since cancer started.

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amygirl | @amygirl | May 17 11:26am
In reply to @hopeful33250 "Hello @amygirl, Often, size is not the most important factor to determine the need for the..." + (show)
@hopeful33250

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.

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I weigh 175 told I have fatty liver and visceral fat in abdomen. My appetite is fine but am eating very little trying to get in better shape to try and lose weight. I go to Carbone Cancer Center at UW Hospital in Madison,Wi. Near where I live. I do have diarrhea w certain foods and drinks. I was taking meal replacement drink but caused diarrhea must have too much sugar. Have since been drinking sugar free yogurt. Thanks for your interest.

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amygirl | @amygirl | May 17 11:30am
In reply to @ruthybabybaby1 "Yep, always out of the fridge for at least 12 hours before but it's not the..." + (show)
@ruthybabybaby1

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

Jump to this post

What are your side effects?

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ruthybabybaby1 | @ruthybabybaby1 | 6 days ago

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.

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