Lanreotide eventually becomes less effective, why?

No recent vomiting but some diarrhea that is sometimes hard to control. I had more abdominal pain in the past but they found kidney stones which are still present but aren't moving. Kidney stones only hurt when they move. I sometimes dehydrate myself when I don't drink enough water because I worry about diarrhea and/or profuse sweating.

My kidney stones are composed of uric acid. Now I have learned that
NETs might be linked to kidney stones. NETs can cause the body to change how it absorbs food. This can cause uric acid kidney stones.

I'm asked about flushing, night sweats and many other symptom. I deny those things because they used to be a lot worse. Too much Prednisone causes all kinds of symptoms. I had a low cortisol level when Prednisone was stopped which wasn't so good either. A carcinoid crisis sounds very similar to an adrenal crisis to me.

Even though I deny many of the symptoms, the NET specialist said that I have carcinoid syndrome. The NET specialist says Lanrotide will help but I might not notice the difference. He said my hormone levels won't always match how I feel. I think he meant I shouldn't feel as good as I do but I feel relatively good but that could change.
--------------------
No biopsy has been done because the surgeon would have done that had I agreed to surgery. I had annual CT scans from 2020 to monitor my kidney stones. The primary NET can be seen retroactively since 2020 but it wasn't mentioned on any CT scan report until 2025. My PCP first mentioned the "possible NET" to me in Jan 2026. My PCP said it should be "investigated" but there was some confusion about how to investigate it.

The investigation is done now and I have seen a NET specialist and every other doctor that is part of the team. The NET specialist seems to know what it is and how fast it is growing. The primary site has metastasized but not too far based on a Dotatate scan. The plan is to see what Lanreotide does and reevaluate in 6 months since I don't want to do surgery first.

@tomrennie

Addendum:
Okay ... 24 hours after my 2nd injection of Lanreotide, I'm having some if not all of the problems you mentioned. Maybe I should keep track of this and report it. As I recall -- the 1st injection of Lanreotide did the same but the symptoms improved after a few days. Maybe I don't like Lanreotide!!

If this is how Lanreotide is supposed to work ... I hope it gets less effective.

I did my biologic infusion for my autoimmune conditions before the Lanrotide injection. They monitor my vitals for the hour during the infusion. Yesterday my blood pressures and heart rate were different than my usual during the infusion. My blood pressures were higher in the 150's/90's range compared to my norm of 120's/70's. The nurse who gave me the Lanreotide injection had to recheck my blood pressure because the first one was 170/100. It reminded me of being on Prednisone again except then I had readings of more than 200/100. My heart rate was mysteriously lower in the 50s instead of the 60's.

I felt good until this morning. After my first injection of Lanrotide... I thought maybe I should not do the infusion and the Lanrotide injection on the same day.

@dadcue I suggest sharing your symptoms and how you are feeling with your care team. Cancer hurts sometimes. So does treating it. To stay alive, I just have to fight through them. I like being alive. It's worth fighting for. That is my main goal. Everything else is secondary. I try not to worry about too much. For me, self imposed stress and anxiety make how I feel worse. They show in my blood pressure and symptoms. Do you think they impact how you feel? I understand that we are all different.

@dadcue
" I thought maybe I should not do the infusion and the Lanrotide injection on the same day." That sounds like a sound observation and one that seems could be addressed and changed by your oncologist. I know I keep my Lanreotide shot days separate with my Doctor's understanding.. But I needed to remind the scheduling dept. Taking Lanreotide alone helped him know what side effects came from what.. He then determined I needed Creon as needed when taking the Lanreotide. Hopefully, you can get this worked out to a state that treatment is more doable with less side effects and more benefits. This is a complicated process but together we find the remedies which work for us.

@maeve115

Creon was mentioned before I started Lanreotide. I forgot about creon but I definitely think I could use some. I thought Lanreotide was a slower, extended release medication but it changes something overnight.

I'm used to the biologic infusion that I get every 4 weeks. It is a 2-3 hour process that only makes me tired. I'm never sick and tired. The biologic infusion and the injection of Lanreotide were scheduled together for my convenience to be done in one trip but 2 separate trips might be better.

They say there is no "interaction" but one medication suppresses my immune system and one medication suppresses my hormones. I don't think my body likes both to be suppressed on the same day.
----------------------
Do you know anything about the IL-6 inflammation pathway and neuroendocrine tumors (NETs)
Actemra (tocilizumab) inhibits the IL-6 cytokine which might also decrease inflammation caused by NETs. I get Actemra for my autoimmune disorders not NETs. I have read that NETs can cause an excessive amount of IL-6 driven inflammation too.

Some people stop Actemra when their autoimmune disorders go into remission but I can't seem to stop Actemra.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7664780/
------------------------------
Actemra suppresses my immune system but also stops inflammation so I don't know if that is bad or good overall. My rheumatologist knows about my neuroendocrine cancer but hasn't said anything yet. My rheumatologist is the next specialist I will see. Then I see my endocrinologist but he says he doesn't specialize in NETs. There is another endocrinologist who specializes in NETs.

Every specialist has a different area they focus on. I think too many specialists isn't always that good but doctors like to specialize.

@dadcue
I am glad to hear that they scheduled both for your convenience. I found it worth the extra hour traveling time to the center and the hour back to schedule the Lanreotide shot alone. Glad that they will be willing to schedule what works best for you.
I wish I had the answers to your other questions. Someone here might have more insight than I in regard to your questions. You might find additional responses by using this link from the Neuroendocrine Cancer Foundation Peer Program. https://www.ncf.net/netconnect

@tomrennie MRI every 6 months and Dotatate PET once a year, just had the PET yesterday 🙏🏼

@maeve115

I asked artificial intelligence the question and I received an interesting response. Maybe someone needs to research this. I couldn't figure out how to ask a question on the link you provided. Something tells me it will be a question that nobody can answer.
---------------------------
Artifical intelligence says:

You are absolutely correct. Interleukin-6 (IL-6) is a major pro-inflammatory cytokine that can be highly elevated in the tumor microenvironment of Neuroendocrine Tumors (NETs). Your medication, Actemra (tocilizumab), is a monoclonal antibody that inhibits the IL-6 receptor. While prescribed for autoimmune disorders, it does block the exact IL-6 pathway that fuels NET-related inflammation.To give you a clearer picture, here is how the IL-6 pathway interacts with your condition:

The NET-IL-6 Link:
Many NETs secrete excessive amounts of cytokines, notably IL-6. This continuous secretion promotes tumor growth, suppresses your natural anti-tumor immune response, and creates chronic systemic inflammation.

(Actemra) Tocilizumab's Mechanism:
By binding to the IL-6 receptor, Actemra stops IL-6 from locking into cells. This prevents the signal cascades (such as the STAT3 pathway) that drive tumor progression and inflammatory symptoms.

Cancer Research:
The IL-6 pathway is actively studied in many cancer types as a target for reducing tumor-promoting inflammation.However, even though Actemra inhibits this pathway theoretically, it is not currently an FDA-approved or standard treatment for NETs. Using it off-label for NETs could also alter your immune system's ability to fight off typical infections, which requires careful monitoring.

@rdiaz1998 Hi and welcome to Mayo Connect. Good luck with the scan results. The waiting, for me, can be difficult. I am guilty of having scanxiety. What are you diagnosed with?

I just noticed the original poster asked the following question almost 2 years ago.

Lanreotide eventually becomes less effective, why?
---------------------------------------
Artificial Intelligence had an interesting answer for this question too:

Lanreotide (e.g., Somatuline) often becomes less effective over time due to somatostatin receptor downregulation, where cancer cells or pituitary cells reduce the number of receptors the drug targets. Additionally, tumors can mutate to become faster-growing, or develop bypass pathways that allow them to grow without relying on those receptors.When this "escape" phenomenon happens, oncologists and endocrinologists typically manage it by altering the treatment approach:

Dose Escalation: Decreasing the time between injections (e.g., moving from a 28-day cycle to a 21-day cycle) to maintain higher therapeutic levels.

Switching Medications: Changing to a different somatostatin analog like octreotide or pasireotide.

Combination Therapy: Adding targeted therapies such as everolimus, which has been shown to significantly extend progression-free survival when used alongside lanreotide.
--------------------------
Most of the above sounds like a biologic because they also attach to receptors to inhibit inflammation pathways. The mechanism of action and why they lose their effectiveness over time sounds similar. Rheumatologists do basically the same thing when a biologic loses its effectiveness.

These medications are expensive ... it is a pity they lose there effectiveness over time.