Should NET w/liver met patient stop rx that has Seratonin?

Thank you all for your comments. The anti-depressant I am taking does contain Serotonin; however doc concurs that the benefits outweigh the effect of this hormone. However I am adhering to the anti-Seratonin diet. Sure wish we NET patients had a “cure”!!! Best we can do is try to control spread and tumor growth and continue to wait and be aware of “symptoms”.

@dbamos1945: Somatuline Depot is the brand name for the generic lanreotide; it's like calling Tylenol acetominophen. Same chemical properties only one goes by the name of the manufacturer. Generics become available for more wide-spread use after the patent for the brand name expires. As there is no difference in chemical compound, side-effects should not vary at all.

@grammato3: My experience with Somatuline Depot 120mg injections for NET is definitively NOT the same as Lanreotide 120mg injections for NET tumors cancer. Somatuline Depot required DEEP hip injections that were painful and would form lumps in my hips that slowly resolved over the 28 days. Lanreotide hip injections are given in hip like a regular injection and are rarely painful.
I was given Somatuline Depot for 1 year at 28 day intervals, with no tumor progression whatsoever. Then Oncoligist switched to Lanreotide, within 3 months my scans revealed 40% tumor progression. I have continued Lanreotide injections and am grateful to have received (6/24-12/24) Lutathera PRRT infusion treatment that produced significant tumor size reduction, or complete resolution of my NET tumors.
I know the Oncology community have been given “same drug” info -
I have read all the supportive literature and am not the only Somatuline Depot NET patient to question the difference in Lanreotide drug. There are distinct differences in these two drugs. Many of my peers and I believe that Somotuline Depot was superior in controlling tumor progression! I probably will never discover why Somotuline Depot is no longer available for NET patients.

@dbamos1945 I’m sorry to hear about your tumor progression. In the pharmacological formulary, this is how the two drugs are listed so I cannot address the discrepancies you report.

Perhaps I didn’t fully understand your question and various ramifications correctly but it sounds like you have some compelling concerns regarding your provider’s having made this change. Have you had the opportunity to discuss these in detail with your doctor?

@susan: yes - they didn’t believe me either, others complained too but we got repeated what they were told by pharm rep. It’s hard to be your own advocate when this happens. My conclusion is that one drug is cheaper and that’s what they give us & spread the word that they are identical! 2+2=4

Are you referring to the generic version of lanreotide (Somatuline Depot) vs. the brand name drug Lanreotide (which is also Somatuline Depot)?

I agree it's hard being one's own advocate. I don't even know what I should be advocating for. I have stage 4 NET in my liver and get the monthly injections. Diagnosed this past fall. Under the care of a UW oncologist.

Somatuline Depot is still available. Maybe ask your oncologist to write the prescription specifically for that drug. Ie NOT Lanreotide. It worked in my case. Also the manufacturer has a copay assistance program that your oncology office should be able to advise you about.🙏

You should ask your doctor first to test your Serotonin levels when they do your 28 day Lanreotide shot and bloodwork. This is not a standard test. My oncologist just started adding a Serotonin test to my bloodwork because I have been dizzy or dizzier than usual. As it turned out, mine is low. Still somewhat within range at an 11. I did some research on this and it all makes sense. Serotonin is a hormone and Lanreotide is meant to block our hormone producing tumors. So apart from my other bloodwork and scans, the low serotonin levels points to the injections working. The dizziness, etc that come along with low serotonin are the trade off. Your oncologist may suggest that you take serotonin but it is not advised for me. It can also be found in tryptophan include turkey, salmon, eggs, and other foods. It is also recommended to sit outside or even by a sunny window for 10 to 15 minutes a day - it helps with you circadian rhythm that can stimulate serotonin production. This will not cause your NETs to grow, it will just hopefully help with the less attractive effects of low serotonin. Deep breathing, meditation, prayer, exercise are all other things they will suggest but you have to find what works best with your life style. Personally, I hate salmon and I do not cook fish in my house so I am doing the 'suck it up' version of dealing with my low serotonin. My diet has been changed so much by this that I just have to be thankful the cancer is being kept in control. I wish you the best. I might also suggest that before you go to the doctor, try Microsoft CoPilot - if you have microsoft it is already in your program. I tell it what I want to say to the doctor add a few things I need to stress than ask it to craft it into a format that is more direct so I will get answers. I then take it and paste it into a message for my doctor in my oncologist's patient portal so they have all of it before I meet with them. Often they reply before the visit. FYI - I had my first NET surgery on my pancreas in 2020, in 2 years they found NETs on my liver and have been on Lanreotide every since, plus creon for the enzyme replacments.

I get Lanreotide and have gotten the lumps at the injection site. It is a big shot but maybe that has to do with my dosage, which I do not know. I have seen Lanreotide on the invoices so I do think that is what I am getting but I will definitely be checking the shot next time before I turn away. It is scary to think we may not all be getting what we think we are getting. On a side note, I did have one injection where I commented on how fast it was done - within an hour the entire area was in pain and burning. Since then I remind them to take it very slow.