1. < Neuroendocrine Tumors (NETs)

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.

fae | @fae | Mar 17, 2023

Nice to hear from a fellow Badger. Certianly hope all goes well for your wife's recovery from the surgery and going forward. At this time I do not have any mets in my pancreas, spleen or lungs but have extensive inoperable liver mets that were found at the time of my surgery and several positive lymph nodes in my abdomen. Several positive nodes were removed at the time of surgery but on my last PET scan I have some new positive nodes. We are now discussing PRRT. Look forward to hear from you again.
Have a good day. The sun is shining, the snow is melting and spring is finally going to arrive in WI.

REPLY
clh1969 | @clh1969 | Mar 18, 2023
In reply to @kellysg "I was diagnosed with Carcinoid in 2007. The mass had grown around several loops of my..." + (show)
@kellysg

I was diagnosed with Carcinoid in 2007. The mass had grown around several loops of my small intestine. After resection, I have appox. 5 feet left. I was started on Sandostatin, 20 mg, in 2009, and had been getting injections every 28 days. I started getting granulomas at the injection site, meaning the drug was pooling there and not getting absorbed as well as it should be. In March 2022, I started on Lanreotide. So far, so good, but it's cost is significantly higher.

I have also done 4 rounds of PRRT, starting in Feb. of 2020, with subsequent rounds in 2 mo intervals. So far, all of my lesions/tumors have stayed stable, and nothing new has shown up. I scan every 6 mo. This is the first time my Chromogranin A has been out of 'normal' range, at 103. My serotonin has not been in normal range for years, but is now creeping up, at 1370. It was higher before the PRRT treatments.

Jump to this post

Hi,
My dr has recommended the PRRT treatments. Did you have any side effects from the PRRT?
Thank you!

REPLY
1 reply
kellysg | @kellysg | Mar 18, 2023
In reply to @clh1969 "Hi, My dr has recommended the PRRT treatments. Did you have any side effects from the..." + (show)
@clh1969

Hi,
My dr has recommended the PRRT treatments. Did you have any side effects from the PRRT?
Thank you!

Jump to this post

I experienced slight fatigue after the first treatment. At my follow up, I told my nurse "if that's as bad as it gets, bring it on!" She said that's the best it will be. The fatigue got a little worse after each treatment, but honestly nothing a nap wouldn't fix.
I did have mild hair loss, but nothing I had to do anything about.

Hopefully it will not have too much of an effect on you if you decide to go that route!

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