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.

I have been getting Lanreotide injections every 4 weeks since July 2019. I responded well, with no serious side effects (sometimes pain at injection site and "lumps" as it is slowly released). So far, the tumors have no grown or spread. I also receive deductible support through their Ispen Cares program.

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Hello I have been taken Lanreotide every 4wks since February 2021 soon to be 2 yrs. I have those same side effects but they have gotten a lot better than when I started. I have a hard time if I get full of food so I eat small size portions, that really helps a lot. Everybody always say you not eating enough but yes I am the same size since this started maybe a few extra pounds here and there but I feel so bad when I get full it's so miserable. Whatever I got to go through good or bad, I will because of the Goodness of GOD!!!!!!

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I am new to Lanreotide injections – same as Somatuline Depot monthly injections I get for NET Carcinoid tumors with Chromogranin A blood test at 586.
1st injection Nov 14,22
and the 11/21/22 Chromogranin A blood test came back at 269.
Today 01/04/23 I had another Chromogranin A blood test. Let me know if my results may be of help to you.
Side effects of shot:
Very hard stools for first week following injection (Laxative + 2 stool softeners + Metamucil at bedtime helps).
Fatigue worse first week following shot, but remains to lesser degree at week 3-4.
I eat very small meals with snacks of cracker + Monterrey Jack cheese, yoplait Light yogurt, smoothies, peeled apple, etc… however I am diabetic so take that under consideration. Eating a larger amount always makes me feel bad.
Mark, I am rather new to this treatment (dx 10/22) and am very interested in learning about other patients responses to Lanreotide treatment for NET Carcinoid tumors. Please let me know how you are doing.

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@dbamos1945

I am new to Lanreotide injections – same as Somatuline Depot monthly injections I get for NET Carcinoid tumors with Chromogranin A blood test at 586.
1st injection Nov 14,22
and the 11/21/22 Chromogranin A blood test came back at 269.
Today 01/04/23 I had another Chromogranin A blood test. Let me know if my results may be of help to you.
Side effects of shot:
Very hard stools for first week following injection (Laxative + 2 stool softeners + Metamucil at bedtime helps).
Fatigue worse first week following shot, but remains to lesser degree at week 3-4.
I eat very small meals with snacks of cracker + Monterrey Jack cheese, yoplait Light yogurt, smoothies, peeled apple, etc… however I am diabetic so take that under consideration. Eating a larger amount always makes me feel bad.
Mark, I am rather new to this treatment (dx 10/22) and am very interested in learning about other patients responses to Lanreotide treatment for NET Carcinoid tumors. Please let me know how you are doing.

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Many thanks for your concise response – I am posting on behalf of my wife Sharon:
1. Can you provide the place / company doing your Chromogranin testing? Sharon's blood sample is sent to / tested within the Mayo Clinic – I suspect in MN.
2. She recently had a spike in chromogranin levels [significantly higher than the 93 ng/ml upper limit] – we discovered that she had been given the generic product (Cipla) for several of her monthly injections. At this time we do not know if there is a correlation but will continue to question.
3. I understand that the lab / procedures used must be the same in order to do comparison of chromogranin levels from one patient to another.
Thanks again for your response !

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Mark/Sharon,
The Chromogranin A blood specimen were sent to:
ARUP Laboratories
500 Chipeta Way
Salt Lake City, UT
84108
http://www.aruplab.com
I am always grateful to learn from others and thank you for knowledge I need to be watchful that the test laboratories remain consistent in order to provide accurate results.
I wish you both the very best. Bette

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Bette:
Many thanks – your input is sincerely appreciated
Sharon will have another blood draw today including chromogranin testing. At least for her case, we believe the chromogranin levels must be monitored (although some medical professionals do not agree) and scanning results do correlate quite well with chromogranin levels for her. This may not be the "best" test but" it's way ahead of what's ever in second place" – to quote an old saying.

Mark

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Thanks to all who have responded to our post on this subject –

Sharon & Mark

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@markmark007

Thanks to all who have responded to our post on this subject –

Sharon & Mark

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A slightly different question on the Lanreotide injections for any with experience. My wife has been on the monthly one since April 2022, fortunately our insurance with my employer has covered the cost after deductible. My concern going forward is once I retire I’m wondering if Medicare will continue to pay for this extremely expensive injection, does anyone have experience with Lanreotide being paid by Medicare?

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While dealing with Medicare can be "challenging", I suggest you contact them directly to provide the specifics regarding your wife & your desire to ensure if future injections (post retirement) will be covered.
I believe it is important to cover all the bases so you completely understand what they (Medicare) will pay for or will not prior to your retirement & continuing treatment for your wife.
I your question is a critical one – again be sure you understand all the ramifications.

P. S. do you have "secondary" / "backup" insurance to kick in if Medicare does cover the injections?

Mark

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@markmark007

While dealing with Medicare can be "challenging", I suggest you contact them directly to provide the specifics regarding your wife & your desire to ensure if future injections (post retirement) will be covered.
I believe it is important to cover all the bases so you completely understand what they (Medicare) will pay for or will not prior to your retirement & continuing treatment for your wife.
I your question is a critical one – again be sure you understand all the ramifications.

P. S. do you have "secondary" / "backup" insurance to kick in if Medicare does cover the injections?

Mark

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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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