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.

mimmy | @mimmy | Feb 28, 2023

I am new to this group and have been getting Lanreotide since May of 2022. I sometimes have loose bowels from the injection and bumps under the injection site. In addition, the needle hurts! All in all, I’ll happily take the treatment. I hope this helps.

REPLY
1 reply
kim1965 | @kim1965 | Mar 1, 2023
In reply to @kellysg "I called the facility and that doctor is still on staff. I spoke with a receptionist..." + (show)
@kellysg

I called the facility and that doctor is still on staff. I spoke with a receptionist and explained my concerns about why my doctor didn't consult with Dr. Sun. She suggested I talk to the nurse at my doctor's office about my concerns.

Is it proper/allowable to change from one doctor to another at the same facility? I plan to send a MyChart message to my team to suggest my doctor consults with the NET specialist on staff.

Jump to this post

Hell yes it is appropriate, your the patient. What is most important is you get the best care possible, if that’s involves changing doctors, then do it.

REPLY
1 reply
kim1965 | @kim1965 | Mar 1, 2023
In reply to @sophiarose "Good Morning Between Medicare and my secondary insurance Empire BCBS which isn’t very costly about $100..." + (show)
@sophiarose

Good Morning
Between Medicare and my secondary insurance Empire BCBS which isn’t very costly about $100 a month my monthly shots are completely covered
Medicare was really helpful at least with me they were

Jump to this post

Just seeing these replies, thank you so much for responding on the Lanreotide payment questions with Medicare and supplemental insurance. 🙏

REPLY
1 reply
kellysg | @kellysg | Mar 1, 2023
In reply to @kim1965 "Hell yes it is appropriate, your the patient. What is most important is you get the..." + (show)
@kim1965

Hell yes it is appropriate, your the patient. What is most important is you get the best care possible, if that’s involves changing doctors, then do it.

Jump to this post

Looking back on it, that was a stupid question...
I called and spoke with Dr. Sun's nurse and found it is NOT common that they consult with other doctors. Who would have thought?!!! I now have an appointment with Dr. Sun for a second opinion, and he sees a ton of patients with NETS. Both doctors have signed off on letting me switch, and that's probably what will happen after I meet with him.

REPLY
kim1965 | @kim1965 | Mar 1, 2023

No question is stupid, it means your a active patient advocating for your own personal health. Proud of you!

REPLY
sophiarose | @sophiarose | Mar 1, 2023
In reply to @kim1965 "Just seeing these replies, thank you so much for responding on the Lanreotide payment questions with..." + (show)
@kim1965

Just seeing these replies, thank you so much for responding on the Lanreotide payment questions with Medicare and supplemental insurance. 🙏

Jump to this post

Sorry I did repost that the BCBS is $200 a month I did make a mistake
Whatever insurance you do don’t ever get ride of your A&B coverage
Be real careful

REPLY
1 reply
kimconklin | @kimconklin | Mar 1, 2023
In reply to @sophiarose "Sorry I did repost that the BCBS is $200 a month I did make a mistake..." + (show)
@sophiarose

Sorry I did repost that the BCBS is $200 a month I did make a mistake
Whatever insurance you do don’t ever get ride of your A&B coverage
Be real careful

Jump to this post

I have 3 years to retirement yet, but I was concerned how Medicare A&B, plus whatever supplement insurance we get would cover a monthly Lanreotide injection that can run over $20,000 a month. If I can ask what do you pay for supplemental insurance a month? for just you? Or a couple?

REPLY
1 reply
sophiarose | @sophiarose | Mar 1, 2023
In reply to @kimconklin "I have 3 years to retirement yet, but I was concerned how Medicare A&B, plus whatever..." + (show)
@kimconklin

I have 3 years to retirement yet, but I was concerned how Medicare A&B, plus whatever supplement insurance we get would cover a monthly Lanreotide injection that can run over $20,000 a month. If I can ask what do you pay for supplemental insurance a month? for just you? Or a couple?

Jump to this post

Big increase this year I paid $2600.00 for this year for single coverage
Don’t settle do the leg work I am sure you can get financial help from the drug makers

REPLY
1 reply
sophiarose | @sophiarose | Mar 1, 2023
In reply to @sophiarose "Big increase this year I paid $2600.00 for this year for single coverage Don’t settle do..." + (show)
@sophiarose

Big increase this year I paid $2600.00 for this year for single coverage
Don’t settle do the leg work I am sure you can get financial help from the drug makers

Jump to this post

I did the Lanreotide injections for 3 months
Then switched To Octreotide which I am currently on
I have paid zero out of pocket so far

REPLY
1 reply
kim1965 | @kim1965 | Mar 2, 2023
In reply to @sophiarose "I did the Lanreotide injections for 3 months Then switched To Octreotide which I am currently..." + (show)
@sophiarose

I did the Lanreotide injections for 3 months
Then switched To Octreotide which I am currently on
I have paid zero out of pocket so far

Jump to this post

Is this the long acting version? How often do you injections?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.