Lanreotide Manufacturers: anyone have experience with either?

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

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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.

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Hello @kellysg and welcome to the NETs discussion group on Mayo Clinic Connect. I appreciate your comments about your journey with NETs and the treatments that you have tried. It sounds like you have been proactive in trying different treatments and keep seeking answers.

I'm sure you are glad that everything has stayed "stable" and nothing new has shown up.

I see that your Chromogranin A (CgA) is higher than usual. As you probably know there are many reasons for this phenomenon. Is your doctor concerned about the rise in CgA levels?

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My Chromogranin has never been out of normal range. It's not very high out of normal, but my serotonin keeps rising as well.

At my follow up appointment after my labs and scan, I asked my doctor if there were any carcinoid specialists on staff that he consults with, and there isn't. That's when he told me a second opinion might be good.

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@kellysg

If you are looking for a NET specialist, here is a link from the Carcinoid Cancer Foundation (CCF) that might be helpful,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

As you can see, Mayo has several doctors who specialize in NETs and I hope that you can be seen there. If an appointment is not available with Mayo, you can always use the list of doctors in the link I posted from the CCF.

If there is not a specialist within a reasonable distance from you, you can also consider a virtual appointment. Often, renowned cancer centers (sometimes connected with university medical centers) can be a good place to find a specialist as these centers are research-oriented and have good treatment outcomes.

I look forward to hearing from you again. Will you post again and let me know how you are feeling?

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I used the link you sent and it shows one doctor for Kansas. It says he's on staff at the facility I go to so am not sure why my doctor doesn't consult with him...

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My Chromogranin has never been out of normal range. It's not very high out of normal, but my serotonin keeps rising as well.

At my follow up appointment after my labs and scan, I asked my doctor if there were any carcinoid specialists on staff that he consults with, and there isn't. That's when he told me a second opinion might be good.

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@kellysg

That is interesting. I wonder if that doctor has left the practice and moved somewhere else. Next week, I would be inclined to call the office and inquire as to that doctor's whereabouts.

Will you let me know how your search goes?

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@kellysg

That is interesting. I wonder if that doctor has left the practice and moved somewhere else. Next week, I would be inclined to call the office and inquire as to that doctor's whereabouts.

Will you let me know how your search goes?

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