1. < Neuroendocrine Tumors (NETs)
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Anyone have side effects after Lanreotide injection?

Posted by genovaldi @genovaldi, Jul 3, 2024

I have been doing injection for a year now but as of a few months ago after the injection I am feeling very sluggish, and this would happen before the injection and now it's after. I did tell my doc and now I TAKE octreotide as needed. Anyone else have this?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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bonnerpb | @bonnerpb | Jul 17 6:06am
In reply to @tomrennie "@bonnerpb Here is a link to one of the simplest explanations of PRRT that I have..." + (show)
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@bonnerpb Here is a link to one of the simplest explanations of PRRT that I have found. Don't let the big words confuse you. Just try to understand how it works.
https://www.mayoclinic.org/vid-20491144

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@tomrennie thank you.

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reinmac | @reinmac | Jul 16 6:50pm

I am new to this support group, been diagnosed with 2 typical neuroendocrine tumors in bilateral bases of my lungs and many(too many to count per cat scan report) scattered throughout lungs. Gallium PET showed uptake in bigger bilateral basilar nodules which they biopsies a few weeks ago hence the diagnosis confirmed. Remains to be only in lungs right now. Seen Oncologist today going to start Lanreotide injections next week monthly have had this chronic cough told it was Asthma for 30 years but got increasingly worse cough in 02/2026 to point where I was passing out esp with work and talking on phone with my job for 7-8 hour/day. Appreciate all the reviews of side effects will keep you posted how has the medication helped with your coughs

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2 replies
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rkklinger | @rkklinger | Jul 16 5:17pm
In reply to @bonnerpb "@Hrkklinger did he have any complications from the surgery? Did he have any of his bowel..." + (show)
Profile picture for bonnerpb @bonnerpb

@Hrkklinger did he have any complications from the surgery? Did he have any of his bowel removed?
Thank you for your information. Pretty overwhelming condition. Hope he does well on the PRRT (which I have to look up to know what it is}.

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@bonnerpb Ron didn't have any complications from the original surgery. They removed 1/3 of his colon and took 11 lymph nodes - 7 of which were malignant. In 1995, there was no treatment known so he had CT scans every 3 months for the first year and then every 6 months and finally every year. There were no signs of tumors until 12/30/23. We're so thankful for the NETS specialists and treatments that are available now.

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Mentor
Turkey, Volunteer Mentor | @tomrennie | Jul 16 12:22pm
In reply to @bonnerpb "@Hrkklinger did he have any complications from the surgery? Did he have any of his bowel..." + (show)
Profile picture for bonnerpb @bonnerpb

@Hrkklinger did he have any complications from the surgery? Did he have any of his bowel removed?
Thank you for your information. Pretty overwhelming condition. Hope he does well on the PRRT (which I have to look up to know what it is}.

Jump to this post

@bonnerpb Here is a link to one of the simplest explanations of PRRT that I have found. Don't let the big words confuse you. Just try to understand how it works.
https://www.mayoclinic.org/vid-20491144

REPLY
1 reply
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bonnerpb | @bonnerpb | Jul 16 11:25am
In reply to @rkklinger "@bonnerpb My husband had a NET between the ilium and bowel removed in 1995. At that..." + (show)
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@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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@Hrkklinger did he have any complications from the surgery? Did he have any of his bowel removed?
Thank you for your information. Pretty overwhelming condition. Hope he does well on the PRRT (which I have to look up to know what it is}.

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2 replies
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 15 3:32pm
In reply to @rkklinger "@bonnerpb My husband had a NET between the ilium and bowel removed in 1995. At that..." + (show)
Profile picture for rkklinger @rkklinger

@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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@rkklinger

I am so glad that you added your husband's experience to this conversation. It is important to have regular follow-ups and to see a NET specialist. There were 11 years between my second and third surgeries, so there is no rule of thumb as to when a new NET may appear.

I hope you continue to post as your husband has PRRT. It is a treatment that has been most helpful to many of the members of our group.

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rkklinger | @rkklinger | Jul 15 2:47pm
In reply to @bonnerpb "I have recently been diagnosed with a net in my ilium and one in my pancreas...." + (show)
Profile picture for bonnerpb @bonnerpb

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?

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@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!!

REPLY
2 replies
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 15 12:46pm
In reply to @bonnerpb "I have recently been diagnosed with a net in my ilium and one in my pancreas...." + (show)
Profile picture for bonnerpb @bonnerpb

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?

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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?

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Mentor
Turkey, Volunteer Mentor | @tomrennie | Jul 14 8:17pm
In reply to @bonnerpb "I have recently been diagnosed with a net in my ilium and one in my pancreas...." + (show)
Profile picture for bonnerpb @bonnerpb

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?

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@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

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bonnerpb | @bonnerpb | Jul 14 5:58pm

Did you have net(s) removed?

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