Neuroendocrine Tumors (NETs) Support Group | Page 15

Sol, fatty liver seems to be a common problem. I apparently have it as well. I...

https://connect.mayoclinic.org/comment/1376449/

Discussion: Neuroendocrine Tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2025

After 8 months of lanreotide my latest CT scan shows growth in my tumors, so my...

https://connect.mayoclinic.org/comment/1049403/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2024

Allow me to be the acronym buster for this discussion: - SSA = Somatostatin analogue https://www.cancerresearchuk.org/about-cancer/neuroendocrine-tumours-nets/treatment/somatostatin-analogues/what-are...

https://connect.mayoclinic.org/comment/1001311/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2024

Yes, Cap/Tem is chemo in oral form. Ten days of Cap and day 11 through 14...

https://connect.mayoclinic.org/comment/955870/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29, 2023

Hello @spinhead, There are several members of the group who have had a reduction in NETs...

https://connect.mayoclinic.org/comment/933319/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2023

I was diagnosed with NET’s December, 2022. Started the same, small intestines and spread to the...

https://connect.mayoclinic.org/comment/842035/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

I have completed my 4th shot . I stand corrected the shots are octeotride, a cousin...

https://connect.mayoclinic.org/comment/1453510/

Discussion: Cost of treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 5, 2025

@nannybb I on Medicare they would only approve the long term my RX insurance wouldn’t approve...

https://connect.mayoclinic.org/comment/1540439/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1 12:33pm

Low fibre diet was advised due to my small intestine net causing a possible bowel obstruction....

https://connect.mayoclinic.org/comment/1050410/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2024

I have 3 years to retirement yet, but I was concerned how Medicare A&B, plus whatever...

https://connect.mayoclinic.org/comment/819288/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

I took lanreotide shots for approx 8 months and they caused me more issues than they...

https://connect.mayoclinic.org/comment/1223097/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2025

Hi Rogerstc I am on my 12th Lanreotide injection (120ml). I just recently discovered that my...

https://connect.mayoclinic.org/comment/1049273/

Discussion: Anyone have problems with elevated blood pressure while on Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2024

Me, too. Husband is being treated for Carcinoid Syndrome after having a benign gastro tumor removed...

https://connect.mayoclinic.org/comment/899059/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

I don’t think so have you been diagnosed with gastrinomas? I have Pnets and have been...

https://connect.mayoclinic.org/comment/1509381/

Discussion: Can long-term octreotide therapy lower gastrin serum levels?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 19 5:21am

@doonman: Lanreotide 210mg is a standard 28 day injection for NET patients; it is touted to...

https://connect.mayoclinic.org/comment/1503245/

Discussion: What helps with muscle aches and weakness after Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 11 1:05pm

@jessie59 I take esomeprazole 3 times daily Pepcid twice daily. Also take sultanate up to 4...

https://connect.mayoclinic.org/comment/1542796/

Discussion: Started PRRT treatment: Anyone experience tumor markers increasing?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4 2:59pm

I also have Neuroendocrine cancer of the mesentery. Also get the Lanreotide shots. Like you, I...

https://connect.mayoclinic.org/comment/1531305/

Discussion: i am taking the shot "L"

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20 10:10am

All forms of nets are still pretty rare but more cases are being diagnosed all the...

https://connect.mayoclinic.org/comment/1296399/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2025

The tumors are grade 2 Stage 4 I had bland embolization No radiation I am now...

https://connect.mayoclinic.org/comment/978230/

Discussion: After liver embolization: Looking for the best diet + food suggestions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 10, 2023

Hi, I hope all is well. My wife received her first injection of lanreotide. Presently she...

https://connect.mayoclinic.org/comment/1374184/

Discussion: (Spouse)Supports Stage 2

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2025