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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 11 6:04pm
In reply to @weavepj "Love your positive and focused mindset - makes a great deal of sense to be seeking..." + (show)
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Love your positive and focused mindset - makes a great deal of sense to be seeking versus avoiding. My MENS1 began with kidney stones and parathyroid removal (x3) the last one was taken from the neck area and placed in my left forearm - very cool huh? Kept an eye on the Ca levels and Pth levels and low and behold they found NETS not only parathyroid but pituitary then pancreas lesions.... removal of all the offending organs (pancreas, gall bladder and spleen) I and my pump/CGM system are rather care free. PET scan last month found a NET carcinoid so the beat goes on.

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Hello @weavepj and welcome to Connect. It sounds like you have had some unusual NET findings with numerous surgeries.

How long ago were these NETs discovered, and how are you feeling now?

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weavepj | @weavepj | Jun 8 9:03pm
In reply to @michellehcapouch "I get the lanreotide injection every three weeks. I have GPNET grade 2 resection from small..." + (show)
Profile picture for michellehcapouch @michellehcapouch

I get the lanreotide injection every three weeks. I have GPNET grade 2 resection from small intestine 2019 with Net metastasized ovaries removed in 2023 and stable metastasis to liver. My best living with NET advice is stop eating sugar. The cancer or the treatments or both mess with your bodies ability to process sugar and the non alcoholic mocktails are all corn syrup so avoiding all liquor just had me putting in more sugar my body I was not able to process correctly. I was so puffy and swollen. Now I’m on januvia diabetes meds cut out cake candy pop and very minimally use sugar / corn syrup . I am down 40 lbs just from diet changes. Swelling is gone. I’m still struggling with severe fatigue but am having parathyroid removed next month for normo calcemic hyperparathyroidism and hoping that will help with the severe fatigue bone pain and short term memory issues. This is a process feel it find it treat it watch it remove it repeat. Repeat repeat and repeat. If your anywhere in the process your on the right track just stay positive and don’t let finding new spots be a negative but a positive. Now you know what to watch. Blessed we have the monthly shot it slows down the liver nets growth for me but not the ovarian net. That’s ok they are all different and all need a different plan. Plan for lots of plans it is not bad news finding more it is good news because now your watching. My first thoughts with initial diagnosis was get it out get it out. get it out was all I could think but now 5 years in I understand the process and am at peace with it and thankful and blessed.

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Love your positive and focused mindset - makes a great deal of sense to be seeking versus avoiding. My MENS1 began with kidney stones and parathyroid removal (x3) the last one was taken from the neck area and placed in my left forearm - very cool huh? Kept an eye on the Ca levels and Pth levels and low and behold they found NETS not only parathyroid but pituitary then pancreas lesions.... removal of all the offending organs (pancreas, gall bladder and spleen) I and my pump/CGM system are rather care free. PET scan last month found a NET carcinoid so the beat goes on.

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lkent | @lkent | Jun 5 10:13pm

Lungs, inoperable, recent chest x ray picked up something on thyroid. I will have a Pet on Monday and see where it goes.

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fraaseo | @fraaseo | Jun 5 6:37pm
In reply to @lkent "I was diagnosed several years ago and I have refused the shots to this point. I..." + (show)
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I was diagnosed several years ago and I have refused the shots to this point. I don't have the symptomology other than Asthma like symptoms that I manage. They sound painful and have side effects besides, how does any one afford them? I am sure I will have to submit sooner or later...

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Where is your NETS located? Do you have regular CT or PET scans? The shots are painful but the pain can be managed with Lidocaine cream or patches. The only side effect I’ve experienced is occasional fatigue. I am very thankful that my insurance covers the cost.

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lkent | @lkent | Jun 5 1:37pm

I was diagnosed several years ago and I have refused the shots to this point. I don't have the symptomology other than Asthma like symptoms that I manage. They sound painful and have side effects besides, how does any one afford them? I am sure I will have to submit sooner or later...

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2 replies
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amygirl | @amygirl | May 30 1:18pm
In reply to @sadragliz "Seeing Oncologist on Tuesday CT showed a 10mm at my thyroid, First lung tumor removed (NET)..." + (show)
Profile picture for sadragliz @sadragliz

Seeing Oncologist on Tuesday CT showed a 10mm at my thyroid, First lung tumor removed (NET) Now this, did not realize this would be an ongoing illness. Need to adjust my mentality with this. I may also need to find a NET team in my area. Do not have one now. I am in Illinois. Staying positive!!

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Depending where in Illinois. I go to Carbone Cancer Center at U.W. Madison,Wi.

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fraaseo | @fraaseo | May 30 1:06pm
In reply to @sadragliz "Seeing Oncologist on Tuesday CT showed a 10mm at my thyroid, First lung tumor removed (NET)..." + (show)
Profile picture for sadragliz @sadragliz

Seeing Oncologist on Tuesday CT showed a 10mm at my thyroid, First lung tumor removed (NET) Now this, did not realize this would be an ongoing illness. Need to adjust my mentality with this. I may also need to find a NET team in my area. Do not have one now. I am in Illinois. Staying positive!!

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Where at in IL? I also live in IL & would be happy to share my NETS Specialist with you.

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Teresa, Volunteer Mentor | @hopeful33250 | May 30 11:09am
In reply to @sadragliz "Seeing Oncologist on Tuesday CT showed a 10mm at my thyroid, First lung tumor removed (NET)..." + (show)
Profile picture for sadragliz @sadragliz

Seeing Oncologist on Tuesday CT showed a 10mm at my thyroid, First lung tumor removed (NET) Now this, did not realize this would be an ongoing illness. Need to adjust my mentality with this. I may also need to find a NET team in my area. Do not have one now. I am in Illinois. Staying positive!!

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Hello @sadragliz,

I can understand your feelings when you say, "...did not realize this would be an ongoing illness." NETs, as well as other cancers, tend to be chronic illnesses. We all wish it were a one-time event, but unfortunately, that is not the case for most of us.

Now your question about a NET team in your area. If the Mayo Clinic in Rochester, Minnesota, is a comfortable drive for you, I recommend that you have at least one consultation with a Mayo NET specialist. This consultation might help set the course of your future treatment and give you a better understanding of this new occurrence.

If an appointment at Mayo is not possible, here is a list of NET specialists by state and by country. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. As I glanced at the list for Illinois, I saw several in the Chicago area.

Yes, please stay positive. Our attitude is the only thing we can control. Has the thyroid tumor been determined to be NETs?

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sadragliz | @sadragliz | May 30 10:13am

Seeing Oncologist on Tuesday CT showed a 10mm at my thyroid, First lung tumor removed (NET) Now this, did not realize this would be an ongoing illness. Need to adjust my mentality with this. I may also need to find a NET team in my area. Do not have one now. I am in Illinois. Staying positive!!

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3 replies
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jlsgt | @jlsgt | May 29 1:36pm

Hollywood said " I just chomp down on a piece of leather and do a shot of whiskey". That's funny. Try that shot of cold spray. You'll like it. 🙂

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