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

I was diagnosed with nets in April of 2020. The nets were in my right lung. The lower two lobes of my right lung were removed. I have no idea how long I had the nets before my diagnosis. A couple of years ago an MRI detected that the nets were in my liver and I receive Lanreotide shots every 28 days. I started having itchy body rash issues about 30 years and continue to have the itchy body rash issues to this day. I saw an allergy doctor a couple of times over the years, they drew grids on my back, pricked my skin with various substances, charged a considerable fee and came up with no conclusions. While I have no proof of this whatsoever, it is my opinion that the undetected nets caused and continue to cause the rashes. My rash treatment, which works ok, is wearing only 100% cotton clothes and taking zyrtec or generic forms of it as needed. I hope your dermatologist has a solution to your issues. Best wishes!

My husband took Octreotide shots for about 18 months, side effects slightly looser stools & then started breaking out into face & neck rashes so he was switched to Lanreotide. He has been fine with this new shot . We have been fighting this since 2021

My husband took Octreotide shots for about 18 months & some months after the shot he would get a severe rash on face & neck , it would look like hives & a horrible outbreak of acne, he would not leave the house . The dr. said not to common with the shot but we showed him a picture at his worst break out, he said it could very well be from the shot & told him to use hydrocortisone cream . It would take a couple days for it to get under control but then come back as he took the shots , so now he has been switched to another shot of Lanreotide & hardly any break outs

Interesting, hope the lanreotide works better. My husband had the rash before his shots, so not a reaction to the injection. He has no side effects with the Lanreotide and other than the rash, feels "normal"?

I started using Imodium A.D. for the diarrhea, but it did not control it well. I switched to Pepto-Bismol which controlled it much better. I take some the day of the injection. After that I may need to follow up with a bit more in the following two or three days. usually after that the diarrhea is gone, but I still have more daily bowel movements than I had before my diagnosis.

In my reading that sounds like "flushing", affecting neck and face as result of carcinoma tumor?? Our oncologist describes the rash as paraneoplastic, related to this? Dermatologist sending away biopsy but not very sure that it's a dermatitis of some sort?

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

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

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 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.