Anyone have side effects after Lanreotide injection?

@bonnerpb: if I was in your situation I would immediately ask for 2nd opinion consultation from a-NET Medical Oncologist with Pancreatic Speciality (see Mayo or University Med Centers with Neuroendocrine Specialists)!!!!
TRUE most NET tumors are slow growing - but NOT all! FALSE the Lanreotide Shot is NOT painful - if injected with correct protocol there is no pain (some feel tired after shot). Also this Lanreotide shot should stop most symptoms (diarrhea, etc) and has known to control some tumor growth. NET tumors ARE cancerous and can metastasize at a microscopic rate in the blood stream = better to be proactive and very viligant with this disease! From a 4 1/2 yr NET survivor so far… That’s my opinion.
Also: Confer with specialists regarding NET tumors treatments including surgery from NET Specialists!
Best health to you, Bette

I have recently been diagnosed with a net in my ilium and one in my pancreas. This is all new to me as I have never had any bad health. I do have Crohns. When I ask if a net is cancerous the response is we don’t know unless a biopsy is done. Currently I am on a “watch” list. More testing in 6 months for ilium one year for pancreas. After being on many support sites, it seems that most nets are cancer and instead of removing them you get shots instead and the nets multiply and metastasized. People are in pain from the shot. The shot causes other diseases. I was diagnosed May, 2026. I have no complications with Crohns. Went on tremfya in May. Has anyone had their net(s) watched and found the nets never spread or metastasized?

Thank you. I am doing further investigation and I do have access to a NET team.

@sposieneedshelp

When I was diagnosed with a NET, I did not have any symptoms as well. That is true for many of us with NETs. I have had three surgeries with no symptoms beforehand. You mentioned that you hesitate to have the monthly injections because you do not currently have symptoms. As a result of the injections, many members have found a reduction in the tumors. As with any medical treatment, it is important to weigh the risks and possible benefits.

At this point, a second opinion regarding treatment might be worthwhile. It would be beneficial to you if this second opinion were with a NET specialist. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

I believe a NET specialist can help put your mind at ease about the best possible course of treatment. Would you consider a consultation with a NET specialist?

Hi Debbie
I just accepted the "rule" about not massaging after the shot, and had not considered the reason. Your question got me wondering "Why". This is what I found.. The second nurse could be correct that rubbing can decrease the potential lumps because the medicine is dispersed, however "You should not massage or rub the injection spot after a Lanreotide (Somatuline® Depot) injection because it can cause the medication to absorb too quickly. Lanreotide is formulated as a slow-release gel; rubbing the area breaks down the drug's timed-release mechanism, potentially causing adverse effects or reducing how long the treatment remains effective. " Information from Somatuline@Depot.
Wish it were not so.

Debbie
Your question had me questioning. I did not know why the instructions say not to rub.. So I searched for the answer.. Maybe this quoted explanation might explain why massaging the site could prevent lumps but decrease effectiveness.

"You must not massage or rub the injection site after a lanreotide (Somatuline Depot) injection because doing so disrupts the drug's specialized, extended-release formulation and can alter how your body absorbs the medication.Why Massage is ForbiddenDisrupts the Controlled-Release "Depot": Lanreotide is a highly viscous, semi-solid gel.

Once injected into the deep subcutaneous tissue of the buttock, it forms a condensed hub or "depot". This depot is designed to dissolve very slowly over several weeks to give you a steady, continuous dose. Massaging the area can break up this gel depot prematurely.

Alters Absorption Rates: Breaking apart the depot increases its surface area, which can cause the medication to absorb into your bloodstream far too quickly. This can lead to a sudden spike in drug levels followed by an early drop-off before your next scheduled dose. " AI using Ronny Allen as one resource https://ronnyallan.net/2024/06/11/lanreotide-its-calling-the-shots/

My first lanreotide shot was 8 months ago, and the next morning (about 20 hours after injection) I had horrible vomiting and diarrhea. It was bright yellow, the taste in my mouth was disgusting and it all smelled like chemicals. I couldn't imagine being able to suffer this monthly. I told my doctor and she prescribed ondansetron, which completed solved the problem. No further symptoms of that sort. I do, however, feel my energy and stamina are far less than my old normal (before extensive resection of ileocecal valve, large and small intestines, several lymph nodes, appendix and two liver segments) and take a nap almost every day. The tumours have not grown in the eight months since diagnosis of the recurrence in the liver.

@maeve115 Why is the advice NOT to massage after injection? My first nurse did not tell me to massage and after 8 months, I still have a lump. The next nurse told me to massage and I have no further lumps.

genovaldi
To answer your question. Yes, I too have experienced something similar. I have been taking Lanreotide for over two years. At first it was the wonder drug for me that curtailed Carcinoid Syndrome Symptoms. Amazing!
It began to wear off a bit and I needed to add short acting Ochtreatide shots which I learned to give to myself.
These Ochtreatide shots are sometimes called "Rescue shots" and they have helped. This process sometimes leads to progress in symptom management and sometimes lowering progression and sometimes both positive results.. It was a bit of a disappointment and a challenge when after 18 months the positive effect lessened but gratefully my Oncology team was ready to provide Ochtreatide rescue shots and if need be we can move to Lanreotide shots every 21 days.. I hope you have or can find such support. I find adding Palliative Care and a neutritionist to the team helped.

@sposieneedshelp
Your welcome. Someone helped me when I was starting out too.
Your questions are worthy of a NET specialist answers or even a second opinion with another NET Doctor and an aware social worker who can answer and advise you. I like Amy Allen MSW at Mayo Clinic in Rochester MN.

Off the top of my head..
The concern that you are symptom free at the moment and that you might get side effects from the Lanreotide is a real concern. I surmise, that how difficult or not the side effects would be is difficult to determine until one tries. Is slowing down progression worth the side effects?

Your second question: "I do not understand why I could not just go straight to radiation treatments which are believed to shrink the actual ileum tumor." also deserves a response, and again a NET specialist with a solid expertise and experience in the field is needed.

I respect you searching to find the right resources and hope you continue to work finding what you both deserve and need.. It is important to find the NET medical team we click with.