Lanreotide Manufacturers: anyone have experience with either?

Posted by markmark007 @markmark007, Dec 22, 2022

Lanreotide Manufacturers
Approved products are manufactured by Ipsen and Cipla - does anyone have experiences when the the two products are used in ones' NET treatment?
e.g. an increase / or decrease in Chromogranin level ?
increased / or decreased fatigue?
injection site issues?
Many thanks,
Mark

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

sophiarose | @sophiarose | Mar 2, 2023

In reply to @kim1965 "Is this the long acting version? How often do you injections?" + (show)

Yes
Every 28 days

sophiarose | @sophiarose | Mar 2, 2023

In reply to @sophiarose "Good Morning Between Medicare and my secondary insurance Empire BCBS which isn’t very costly about $100..." + (show)

Sorry
Typo $200 a month

kim1965 | @kim1965 | Mar 2, 2023

In reply to @sophiarose "Yes Every 28 days" + (show)

Do you notice any difference between the long acting stuff vs. Lanreotide?

sophiarose | @sophiarose | Mar 2, 2023

In reply to @kim1965 "Do you notice any difference between the long acting stuff vs. Lanreotide?" + (show)

I have only had the every 28 day injections
I did lanreotide for 3 months (3 injections) and had to stop it made me very sick and it was causing large lumps under the skin it wasn’t disbursing
I then started octreotide and only had 1 bad reaction so far
It was an infection at the injection site and the injection wasn’t given properly

vinnie694 | @vinnie694 | Mar 3, 2023

In reply to @sophiarose "I am sorry I made a mistake it’s $200 a month However contact the manufacturer they..." + (show)

I’m new to this forum, after recently being diagnosed and getting over that shock, next was the shock of the $$$, for the treatment 26,770.. I go for my 2nd shot of Lanreotide March 16. I am on Medicare plan A, B ,and pay an additional $190 per month for plan G through United Healthcare.. I’m hoping it’s all covered!

sophiarose | @sophiarose | Mar 3, 2023

Good luck
More stress is truly what you don’t need

vinnie694 | @vinnie694 | Mar 6, 2023

In reply to @sophiarose "Good luck More stress is truly what you don’t need" + (show)

Thank you..

mimmy | @mimmy | Mar 6, 2023

I have been taking Lanreotide since since May of 2022. I too have bumps under the skin from the shot. The way I look at it is I’m lucky to have the treatment. It’s saving my life.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 6, 2023

In reply to @mimmy "I am new to this group and have been getting Lanreotide since May of 2022. I..." + (show)

Hello @mimmy and welcome to Mayo Connect! I'm glad that you found this forum. It sounds like NETs is a relatively new diagnosis for you.

I am a 20-year survivor with NETs. My first surgery was in 2003 and my third surgery was in 2016. My NETs were all in the upper digestive tract. I was asymptomatic. The NETs were found incidentally during a routine upper endoscopy. So far, surgeries have been the only treatments needed.

If you are comfortable doing so, would you share a bit about your journey with NETs? For example, how long ago were you diagnosed, what treatments (other than Lanreotide) have you had, were you having symptoms prior to the diagnosis?

pavlina60 | @pavlina60 | Mar 13, 2023

In reply to @cu2 "Hello I have been taken Lanreotide every 4wks since February 2021 soon to be 2 yrs...." + (show)

@cu2
I just started Lanreotide. My first injection this morning. Barely made the 20 min ride home , so nauseated. Tried to eat, not happening. Some tea with honey. My back hurts very much and so does my stomach. Is it going to get better, or I should have these effects until next injection... Lost of what to do, eat or drink...