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Anyone have side effects after Lanreotide injection?
Neuroendocrine Tumors (NETs) | Last Active: 6 days ago | Replies (99)Comment receiving replies
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?
Replies to "I have recently been diagnosed with a net in my ilium and one in my pancreas...."
@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?
@bonnerpb
My husband had a NET between the ilium and bowel removed in 1995. At that time there was no treatment so they just sent us home. He was watched for 10+ years and then stopped seeing the oncologist as nothing had matastized and were no issues. In 2023, we learned that his skull and body are full of tumors. He is Stage 4. In retrospect, it would have been better to continue seeing the oncologist so that he may have been put on Lanriotide sooner. He started Lanriotide in January 2023 and everything has remained stable until his PET scan May 4, 2026. Tumors are increasing and he started PRRT treatment on June 4. We get excellent care at Mayo Rochester. We feel it is very important to see a NET specialist to get the best treatment. I'm glad you have joined Mayo Connect. I find that it is one of the best sources of information about this rare cancer. Good luck to you!!
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@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