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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cordelia73 | @cordelia73 | Apr 20 10:15pm
In reply to @tmneuro "When my cancer was found, and they removed the tumor in my ileum, this is what..." + (show)
@tmneuro

When my cancer was found, and they removed the tumor in my ileum, this is what was on my report:

Well differentiated
Grade 1 - slow growing
Non-functioning - does NOT secrete hormones
Low volume = small tumors
Ki-67 index: about 1%
Stage 4 - tumors had spread to liver, lymph nodes, and mesentery.

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Thank you, glad to hear you have been fine for 11 years, my husband will start this week with the injections and we really hope that they work. Thanks for sharing

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tmneuro | @tmneuro | Apr 20 6:05am

When my cancer was found, and they removed the tumor in my ileum, this is what was on my report:

Well differentiated
Grade 1 - slow growing
Non-functioning - does NOT secrete hormones
Low volume = small tumors
Ki-67 index: about 1%
Stage 4 - tumors had spread to liver, lymph nodes, and mesentery.

REPLY
1 reply
cordelia73 | @cordelia73 | Apr 19 11:09pm
In reply to @tmneuro "I have been receiving the Octreotide injections (Sandostatin, and now lanreotide) for 11 years, every 28..." + (show)
@tmneuro

I have been receiving the Octreotide injections (Sandostatin, and now lanreotide) for 11 years, every 28 days. The only side effects that I have noticed is that after my first shot 11 years ago, my blood sugar went up and I am now diabetic and deal with that on a daily basis. Other than that, I do not know of any other side effects. My liver and mesentary tumors have remained stable through these 11 years.

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If you don't mid me asking, What was your grade and stage 11 years ago? My husband has just been diagnosed with grade 1/2 stage 4 with liver metastases and Im very scared. He will get the shot every month from now on and hope for no growth.

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1 reply
amygirl | @amygirl | Apr 17 1:24pm

Thank u for sharing 🙂

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amygirl | @amygirl | Apr 14 3:15pm

Feel better? How were u feeling? Where is yours located? Thank u

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ricki8 | @ricki8 | Apr 14 11:45am

Hi Teresa,
I briefly had the 120 mg. every 3 weeks, but am now back to the every 4 weeks but a larger dose.
I feel better right now, but with monitoring, I might require reducing or adding on.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 14 10:33am
In reply to @ricki8 "I have a shot every 4 weeks. I was on 120 mg. every 4 weeks, then..." + (show)
@ricki8

I have a shot every 4 weeks. I was on 120 mg. every 4 weeks, then they moved it to every 3 weeks, and now I am on 180 mg. every 4 weeks (90mg. on each cheek). It's a balancing act.

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Hi @ricki8,

Are you feeling better now that you are getting the injection every 3 weeks?

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ricki8 | @ricki8 | Apr 13 12:20pm

I have a shot every 4 weeks. I was on 120 mg. every 4 weeks, then they moved it to every 3 weeks, and now I am on 180 mg. every 4 weeks (90mg. on each cheek). It's a balancing act.

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1 reply
ricki8 | @ricki8 | Apr 13 12:17pm
In reply to @amygirl "I wasn't given a stage or grade. They said slow growing. Monitoring with MRI every 3..." + (show)
@amygirl

I wasn't given a stage or grade. They said slow growing. Monitoring with MRI every 3 months.

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Ask for the stage & grade. This is customary for Oncologists. Do you have one?

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michellehcapouch | @michellehcapouch | Apr 12 11:25am
In reply to @michellehcapouch "I get the lanreotide injection every three weeks. I have GPNET grade 2 resection from small..." + (show)
@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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I also forgot to mention the acne rash. I have always had still do and believe this cancer is cause. I get some reduction after active net surgical removal. I take minocycline and sirolimus and it seems to keep the acne rash at bay much better than anything else. I used to take 4 Benadryl a day this works better for me.
Hope that’s helpful for some. Lots of makeup my only other solution.

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