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Public Support Group 1,009 total results
Discussions (78)
Anyone have side effects after Lanreotide injection?
I have been doing injection for a year now but as of a few months ago after the injection I am feeling very sluggish, and...
What helps with muscle aches and weakness after Lanreotide injections?
I've had only 3 Lanreotide injections for my PNETS and I'm experiencing muscle pain/weakness. Has anyone else experienced this side effect and was there a...
Anyone have problems with elevated blood pressure while on Lanreotide?
Anyone have problems with elevated blood pressure while on Lanreotide?
Lanreotide shot given too fast, any side effects?
I was given Lanreotide injection to fast last month. I had horrible side effects from it I ended up in emergency. Sick all month. Has...
NETS Mesentery, Small Bowel Resection, Lanreotide, Octreotide, Story
Maybe my story helps somebody. I've had well differentiated Nets for a while now. A review early last year of a 2019 CT confirmed mesenteric...
Stage 4 grade2 Pancreatic Neuroendocrine ki67 20% Lanreotide
I was diagnosed late February 2025 by liver lesion biopsy with neuroendocrine grade 2, well differentiated. Ga68 Dotatate Pet scan end of March confirmed pancreas...
Anyone else get bloating and abdominal pain from NETS or Lanreotide?
I have primary NET in the small intestine, spread to stomach wall and liver. I just got my 3rd monthly Somatuline (Lanreotide) injection 4/12. About...
First Lanreotide Injection: Any tips about diet and side effects?
Good morning, I am an 81 yr old female & was diagnosed with stage 4 NETS in my liver metastasized from my lung in Dec...
PET Ga-68 Scan Scheduling vs. Most Recent Lanreotide Injection
I was just scheduled for a PET scan 1 week following my last Ipsen (long lasting) lanreotide injection. Separately, I have read that the scan...
What are the latest developments in Zanzalintinib (311) with LANREOTID
What are the latest developments in Zanzalintinib (311) with LANREOTIDE ACETATE (4-week cycle) in treating pNET high grade 3 metastatic in liver for over 2...
How long do I wait between injections and PET scans.
What is the wait period between the PET scan and my next Lanreotide injection? I had to wait 36 days before my last injection and...
Anyone still have pancreas pain while taking Lanteotide?
I have had three Lanreotide injections and it seems that my symptoms have gotten a little worse with the pancreas pain and some spleen issues....
Everolimus/ Afinitor experience/side effects
Starting Everolimus later this week due to progression after 3 months of Lanreotide. Planning to stay on Lanreotide while on Everolimus. What are your experiences...
Newly diagnosed-Primary Malignant Neuroendocrine of Lung
I am newly diagnosed with Neuroendocrine tumor of lung. I have been monitoring a lung node in the lung since 2017 with no change, until...
Cost of treatment
I am currently living in Panama, without insurance and have been diagnosed with NETS, biopsied and they believe its origin is the small intestine ....
Neuroendocrine Pancreatic Tumors with KIT Missense Variant Exon 10 GOF
Diagnosed in August 2025. Started Lanreotide injections in October. Pet Scan revealed a "Christmas tree". Tumors covering pancreas and liver. Non-functional and no further symptoms....
New to NET: Not sure what to expect from here
I was diagnosed with NET about 6 weeks ago at Dana Farber in Boston. It’s predominantly in my abdomen but looks like it has made...
Help understand interval progression
First scan after 4 lanreotide monthly shots for pancreatic net grade 2 stage 4 w liver (both lobes) metastases. Advice on understanding interval progression and...
First scan after 3 months of lanreotidec
My partner has pancreatic NET, grade 2 stage 4 w metastases in liver - she is having first post diagnosis scan after 3 months lanreotide....
NET related side effect constipation
My partner has recently been diagnosed with stage 4, grade 2 pancreatic origin NET. She started lanreotide & is experiencing diarrhea but then painful problematic...
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