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

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

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.

Hi @ricki8,

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

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.

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

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.

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.

I have been on Lanreotide ( every 4 weeks) for 2+ yrs now for pNET with liver metastases. Side effects I have experienced - high blood glucose, hair loss. I feel sluggish the day of the injection , but then it subsides

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

What was your diagnosis when you first found out, if you don’t mind me asking? Stage?, grade?, etc… my husband has just been diagnosed with metastatic well differentiated grade 1 neuroendocrine neoplasm