1. < Neuroendocrine Tumors (NETs)
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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?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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davidschoonover709 | @davidschoonover709 | Oct 8 2:12pm
In reply to @hopeful33250 "Hello @davidschoonover709 and welcome to the NETs support group on Mayo Connect. It is always good..." + (show)
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Hello @davidschoonover709 and welcome to the NETs support group on Mayo Connect. It is always good to know that tumors are shrinking as a result of the treatments!

How long ago was your wife diagnosed with NETs? Has she had any other treatment, such as surgery, embolizations, etc.?

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@hopeful33250 She was diagnosed in 2009 as a result of discovery during a colonoscopy because the doctor had enough tubing to go to the ileum. Two tumors were discovered. As a result she had a resection removing the iliocecal valve and her appendix. Later discovery on her liver (lesions) she had a microwave ablation which was problematic, later a liver debulking got all but two lesions. She was scheduled for octreotide but stepped away when she wasn't experiencing any symptoms from the NET (flushing, diahrea, etc,) She did visit Cancer Treatment Centers in Zion IL but no treatments were done there. She did try a holistic treatment with a Rife Light and has recently been receiving Lanreotide shots every 28 days. Lesions have been shrinking and Chromogranin has stayed down.

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rkklinger | @rkklinger | Oct 8 2:44pm

His main side effect is extreme fatigue. We talked about it with the oncologist when we were there for the PRRT treatment. Apparently it is expected and happens with many people on the 3rd round. When he feels really tired he has a weak feeling but that also seems to be happening with his heart issues. So it is hard to tell if that is from the treatment or the AFIB. He has also had a difficult time eating - more than usual. The oncologist suggested that he be sure to have 2 Protein drinks (30 gms) daily and try to eat as much as he can.

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jens1005 | @jens1005 | Oct 11 7:02am

I have been getting the lanreotide shots for exactly a year now with success. I had one reaction. The very first one (bad abdominal pain). At 6 months MRI showed no growth in tumors on liver and in abdomen. I also have a very rare one on muscle of left eye which I had gamma radiation to with success. Praying my next MRI in November also showing shrinkage and/or no growth. Life continues.

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dbamos1945 | @dbamos1945 | Oct 25 1:33pm
In reply to @diane888 "@dbamos1945 Hi, may I ask do you still have to get lanreotide or octreotide shots once..." + (show)
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@dbamos1945
Hi, may I ask do you still have to get lanreotide or octreotide shots once a month?

I'm anxious to start PRRT. I want to! I will still have my PET/CT DOTOTATE SCAN early November but even if everything is stable, (I hope it is) I still want PRRT asap.
I want the small tumors to shrink to NXT to nothing, and the larger ones to shrink a lot! I will be using visualization which might be woo-woo but when my mom had a grade 3 astrocytoma in brain, and we were told she'd be dead within a year (this was 1989) I could not sleep. My coping skill was to picture her microphage cells taking away all the cancer. I did this for me to be able to sleep, my mom's tumor never came back. She had a positive attitude. Which must have helped her. But who knows? I doubt I cured my mom but I did that for years. 7 years passed tumor never came back! She passed from emphysema unfortunately.

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@diane888: Lanreotide 28 day injections have been on my monthly schedule since 1st Oncology appt. (5 yrs ago). This treatment I was told controls the side-effects (constant diarrhea, etc) of NET as well as controlling tumors. Since my successful PRRT treatment this is the only cancer treatment I have taken.
I suggest you check the Lanreotide or Octreotide mfg guidelines on specific protocol of shot usage (specific rules are paramount to receiving the best treatment from this injection).
We all hate to question the nurse giving you the injection, but YOU NEED this medicine to reduce risk of tumor progression! Also each of these shots have a huge $ cost ($17K for my insurance).
I am grateful to receive this medicine each month; although I still dread the shots. :-). Be proactive! Be well & happy!

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rkklinger | @rkklinger | Oct 26 8:53pm
In reply to @dbamos1945 "@diane888: Lanreotide 28 day injections have been on my monthly schedule since 1st Oncology appt. (5..." + (show)
Profile picture for dbamos1945 @dbamos1945

@diane888: Lanreotide 28 day injections have been on my monthly schedule since 1st Oncology appt. (5 yrs ago). This treatment I was told controls the side-effects (constant diarrhea, etc) of NET as well as controlling tumors. Since my successful PRRT treatment this is the only cancer treatment I have taken.
I suggest you check the Lanreotide or Octreotide mfg guidelines on specific protocol of shot usage (specific rules are paramount to receiving the best treatment from this injection).
We all hate to question the nurse giving you the injection, but YOU NEED this medicine to reduce risk of tumor progression! Also each of these shots have a huge $ cost ($17K for my insurance).
I am grateful to receive this medicine each month; although I still dread the shots. :-). Be proactive! Be well & happy!

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@dbamos1945 For the past 2 years, Ron has been having Cold Spray put on before the injection of Lanriotide. It makes a painful shot much easier.

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nicknfl | @nicknfl | 1 day ago
In reply to @bluebelle "Hi! I have been receiving Octreotide injections once a month for about a year now. For..." + (show)
Profile picture for Sherry @bluebelle

Hi! I have been receiving Octreotide injections once a month for about a year now. For me, the first few months caused some fatigue but it’s hard to say if it is from the shots or the cancer itself. I am stage 4 and my cancer has metastasized to my liver. I recently finished 4 rounds of Lutathera radiation in conjunction with the shots. I haven’t really noticed any ill effects of the shots personally and I will be receiving them every month for the rest of my life. I hope this helps:) Prayers and well wishes for you…

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@bluebelle

That's sounds like my treatment path. As far as the question, there is no need to be concerned about the monthly shots. I have been doing them for 8 years without any real side affects. Maybe some fatigue day after for me. But it does not change the quality of your life at all.

Mine is currently metastasized to my liver as well. I had a problem with first round of PRRT therapy. I was also undergoing a BCG treatment for cancer of the bladder. That, coupled with the PRRT therapy, made my bone marrow stop producing white blood cells. Therefore low platelets and stopped therapy until my platelet levels are up.

They have rebounded and we are restarting therapy. I was curious if anybody has any insight into dealing with this cancer, emotionally as well as physically and mentally.

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2 replies
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maeve115 | @maeve115 | 1 day ago
In reply to @nicknfl "@bluebelle That's sounds like my treatment path. As far as the question, there is no need..." + (show)
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@bluebelle

That's sounds like my treatment path. As far as the question, there is no need to be concerned about the monthly shots. I have been doing them for 8 years without any real side affects. Maybe some fatigue day after for me. But it does not change the quality of your life at all.

Mine is currently metastasized to my liver as well. I had a problem with first round of PRRT therapy. I was also undergoing a BCG treatment for cancer of the bladder. That, coupled with the PRRT therapy, made my bone marrow stop producing white blood cells. Therefore low platelets and stopped therapy until my platelet levels are up.

They have rebounded and we are restarting therapy. I was curious if anybody has any insight into dealing with this cancer, emotionally as well as physically and mentally.

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@nicknfl
"I was curious if anybody has any insight into dealing with this cancer, emotionally as well as physically and mentally."
A solid resource I have used for living better with this cancer emotionally/physically/mentally is the Neuroendocrine Cancer Foundation's free individual sessions with a well trained Neuroendocrine Cancer Coach.
https://www.ncf.net/healthcoaching
Perhaps it can serve you well too.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 1 day ago
In reply to @maeve115 "@nicknfl "I was curious if anybody has any insight into dealing with this cancer, emotionally as..." + (show)
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@nicknfl
"I was curious if anybody has any insight into dealing with this cancer, emotionally as well as physically and mentally."
A solid resource I have used for living better with this cancer emotionally/physically/mentally is the Neuroendocrine Cancer Foundation's free individual sessions with a well trained Neuroendocrine Cancer Coach.
https://www.ncf.net/healthcoaching
Perhaps it can serve you well too.

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It sounds like you have used this resource, @maeve115. Could you share your experience? For example, how did it help you, and what aspect was most beneficial?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 1 day ago
In reply to @nicknfl "@bluebelle That's sounds like my treatment path. As far as the question, there is no need..." + (show)
Profile picture for nicknfl @nicknfl

@bluebelle

That's sounds like my treatment path. As far as the question, there is no need to be concerned about the monthly shots. I have been doing them for 8 years without any real side affects. Maybe some fatigue day after for me. But it does not change the quality of your life at all.

Mine is currently metastasized to my liver as well. I had a problem with first round of PRRT therapy. I was also undergoing a BCG treatment for cancer of the bladder. That, coupled with the PRRT therapy, made my bone marrow stop producing white blood cells. Therefore low platelets and stopped therapy until my platelet levels are up.

They have rebounded and we are restarting therapy. I was curious if anybody has any insight into dealing with this cancer, emotionally as well as physically and mentally.

Jump to this post

Hello, @nicknfl, and welcome to Mayo Connect. I'm glad that you found this forum. It is a great place to share your experiences (as you've already done) and learn from others on this NETs journey.

It sounds like the monthly injections and PRRT are the treatments you have tried. How are you feeling in general?

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maeve115 | @maeve115 | 1 day ago
In reply to @maeve115 "@nicknfl "I was curious if anybody has any insight into dealing with this cancer, emotionally as..." + (show)
Profile picture for maeve115 @maeve115

@nicknfl
"I was curious if anybody has any insight into dealing with this cancer, emotionally as well as physically and mentally."
A solid resource I have used for living better with this cancer emotionally/physically/mentally is the Neuroendocrine Cancer Foundation's free individual sessions with a well trained Neuroendocrine Cancer Coach.
https://www.ncf.net/healthcoaching
Perhaps it can serve you well too.

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@maeve115
I think the paragraph entitled "What is Wellness Coaching" summarizes my experience very well . https://www.ncf.net/healthcoaching
I also appreciated that the Neuroendocrine Cancer Foundation is a reputable and respected resource. The Coach was well trained and understood the complications and symptoms that are particular to NETs so that greater validation, encouragement and focus was found. Perhaps the information in the link might be beneficial to someone else too.

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