Neuroendocrine Tumors (NETs) Support Group | Page 4

Yes I’m on the Lanreotide injection every 28 days. I started February 10th 2021.

https://connect.mayoclinic.org/comment/1285659/

Discussion: NET in jejunum spread to liver: Treatment options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19, 2025

Me, too💜🦓. Diagnosed in 12/22. Still alive on Somatouline/Lanreotide

https://connect.mayoclinic.org/comment/1299116/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 7, 2025

@tattyk, checking in. How is it going so far with lanreotide treatment? How are you doing?

https://connect.mayoclinic.org/comment/1113992/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 29, 2024

@janmar1960 More or less had the same initial symptoms for years. Stomach problems that were treated...

https://connect.mayoclinic.org/comment/1547697/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 11 7:49am

I have continually gotten my lanreotide and have MRIs with contrast on a regular basis for...

https://connect.mayoclinic.org/comment/1169863/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2024

Hello @destinjim and welcome to the NETs support group on Mayo Connect. I see that many...

https://connect.mayoclinic.org/comment/1468454/

Discussion: Lanreotide side effects: Anyone having GI issues?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2025

Not sure if IPSEN Cares program for Lanreotide injections is available in your area but you...

https://connect.mayoclinic.org/comment/1415346/

Discussion: Cost of treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

So, are you saying thst the Lanreotide increased the growth of the tumor in your case?

https://connect.mayoclinic.org/comment/928853/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2023

Had lanreotide injected Oct 2, and Ga 68 Dototate PET scan 3 weeks later.

https://connect.mayoclinic.org/comment/1425312/

Discussion: PET Ga-68 Dodatate Scan & Octreotide LAR Injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2025

I have a PET scan every six months. I have a Lanreotide injection once a month.

https://connect.mayoclinic.org/comment/1354102/

Discussion: Initial imaging and tests; what to expect after initial NETs diagnosis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2025

I just went last week. On lanreotide but dentist was not concerned. Hope that helps

https://connect.mayoclinic.org/comment/1175256/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 18, 2024

KC, What protocol will the doctor limit to 2 years? The CAPTEM or the Lanreotide? Thanks.

https://connect.mayoclinic.org/comment/1110425/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 23, 2024

@mlassen1 I also had shortness of breath and low oxygen levels when checked. Turned out to...

https://connect.mayoclinic.org/comment/1551042/

Discussion: Blood Clots, DVT and Neuroendocrine Cancer - Be aware.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 15 9:27am

It sounds like the Octreotide therapy works for you. Was there any surgery done before the...

https://connect.mayoclinic.org/comment/901727/

Discussion: Should I want more treatment after pancreatic nets with lymph nodes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2023

@dbamos1945, I appreciate you sharing your experience and your thoughts on Lanreotide and its benefits!

https://connect.mayoclinic.org/comment/1251146/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2025

I was diagnosed in September of 2025, but the Mayo Clinic has said that I've had...

https://connect.mayoclinic.org/comment/1551077/

Discussion: Severe itching from liver metastasis (NETs)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 15 9:49am

@sarahfloranne, Sorry to hear you’ve had this side effect to the Lanreotide - which unfortunately is...

https://connect.mayoclinic.org/comment/876306/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2023

@spelleti00 Per Ipsen pharmaceutical the manufacturer, my reaction was due to the inaccurate administration of Lanreotide...

https://connect.mayoclinic.org/comment/1404698/

Discussion: Lanreotide shot given too fast, any side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2025

Does long-term Lanreotide 120g monthly injections due any harm to patient or does it continue to...

https://connect.mayoclinic.org/comment/1004493/

Discussion: PNET on tail of pancreas with numerous bilobar hepatic metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2024

Hi from Cheshire UK. I had same but opted to have surgery. This NET evil spreads...

https://connect.mayoclinic.org/comment/1444694/

Discussion: S4, G2 NETS in mesentery. Declined Exploratory Surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2025