Anyone have side effects after Lanreotide injection?

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.

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/

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.

@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?

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

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?

@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

Did you have net(s) removed?

@bonnerpb Hi and welcome to Mayo Connect. I agree withh @dbamos1945 on seeing a NETs specialist. Were you diagnosed by a NETs specialist? Here is a link for information on NETs from Mayo's website.
https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132

Hello @bonnerpb

I would like to join @dbamos1945 and @tomrennie in welcoming you to Mayo Clinic Connect. I agree with both of them, as they have encouraged you to seek a consultation with a NET specialist. As you probably know, NETs are a rare form of cancer, and it would be beneficial to you to have at least one consultation with a NET specialist early on in your diagnosis.

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 have had three surgeries for NETs in the duodenal bulb. I have not required any further treatment, as there has been no evidence of metastasis.

Are you considering a second opinion?