1. < Neuroendocrine Tumors (NETs)

First Lanreotide Injection: Any tips about diet and side effects?

Posted by nana120 @nana120, Jul 18, 2023

Good morning, I am an 81 yr old female & was diagnosed with stage 4 NETS in my liver metastasized from my lung in Dec 2022. Like so many of us it was discovered by accident during a GI test. I received my first lanreotide injection July 6, 2023 with minimal instruction, only that I might have intestinal upset (I did) and that I would not be able to eat spicy food for the foreseeable future. I am to a have one injection every 28 days for the next 10 months. I stumbled on this site while trying to find some information about diet information and would appreciate any direction or experience the group can share.

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kellysg | @kellysg | Jul 20, 2023
In reply to @nana120 "Thank you for sharing your experiences. That is what I was hoping for when I signed..." + (show)
@nana120

Thank you for sharing your experiences. That is what I was hoping for when I signed up on this site. What has your experience been with chocolate, especially dark chocolate. It is one of the no-no’s I have read about and one of the favorite things I will miss most, but have been afraid to try out.

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Chocolate and I are really good friends, and I refuse to give up my simple pleasures! Life is too short!
Just pay attention to the recommendations, and if a particular thing doesn't work for you, you'll know, if that makes sense.
I've been living with NETs for over a decade, and plan to die WITH cancer, not OF cancer!

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alisonn | @alisonn | Jul 20, 2023
In reply to @kellysg "My primary was a tumor wrapped around my small intestine, discovered in 2007. I have been..." + (show)
@kellysg

My primary was a tumor wrapped around my small intestine, discovered in 2007. I have been Stage IV for a decade now, with metastasis to my liver, lymph nodes, and more recently very small nodules on my lung and scapula.
I was started on Octreotide, which I took for many years. My oncologist then switched me to Lanreotide. After being on that for a year, I started experiencing very painful joint pain and swelling throughout the month. I'm not sure if it was the Lanreotide or something else, but I convinced my doctor to let me go back to Octreotide. That was on February, and I do feel like the pain has gotten better.
Everyone has different symptoms and side effects so don't hesitate to let your doctor know what's going on.
As far as diet, I have always eaten whatever I want, and usually have no problems. The only thing I know I'll "pay for" is something with lots of sugar, like donuts, cinnamon rolls, etc.
Best wishes on your new journey, and always remember that NETs is NOT a death sentence! Educate and advocate!

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Did you initially have surgery, and if not, why not? Did doctors not recommend it or was it not possible? What grade are you? Thanks.

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alisonn | @alisonn | Jul 20, 2023

Was surgery ever brought up as option? What grade are you? Thanks.

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kellysg | @kellysg | Jul 20, 2023
In reply to @alisonn "Did you initially have surgery, and if not, why not? Did doctors not recommend it or..." + (show)
@alisonn

Did you initially have surgery, and if not, why not? Did doctors not recommend it or was it not possible? What grade are you? Thanks.

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I had surgery in 2007 when they found the tumor. They removed it, along with most of my small intestine. I had follow ups and scans every 3 months after that for the first year. I was under the impression that the surgery had removed all the cancer, only to find out later that it was other places.
I now scan every 6 months, and went thru PRRT treatments in 2021, when the cancer started getting really active. PRRT has stopped the tumor growth and I've had no new lesions or nodules since!!!
I honestly don't know anything about the grade...

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alisonn | @alisonn | Jul 20, 2023

That is great. Unfortunately, my brother has not been that lucky.

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1 reply
Turkey | @tomrennie | Jul 20, 2023
In reply to @alisonn "That is great. Unfortunately, my brother has not been that lucky." + (show)
@alisonn

That is great. Unfortunately, my brother has not been that lucky.

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How so Allison?

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ce1b | @ce1b | Jul 20, 2023

Hello
Diet information can be found at https://netrf.org/.

I have stage 3 lung NETs and have been on Lanreotide injections for 6 months.

I find it has helped my symptoms but is not without side effects. I’ve also experienced side effects on the withdrawal when preparing for my PET scans.

Good news is the lanreotide infections are working so it’s worth the minor inconveniences.

Be Blessed
CEB

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nana120 | @nana120 | Jul 20, 2023
In reply to @phyllisden "Nana120, welcome to the Mayo Connect online support group for Neuroendocrine tumor patients. I hope you’ll..." + (show)
@phyllisden

Nana120, welcome to the Mayo Connect online support group for Neuroendocrine tumor patients. I hope you’ll be able to glean some helpful information and support here.
I had my first surgery in March 2018 to remove 10” of my small intestine, and my second surgery in July 2019 to remove 11” of my colon/large intestine. After that my weight dropped from 117 to 104. Now at 20-30 I would have thought that was great, at 70 I just looked old! My oncologist said, “Eat protein!”. It was a challenge for awhile trying to determine what I could eat. I found a very helpful website: https://netrf.org. (Neuroendocrine Tumor Research Foundation) .Under “Search” you can just type in “Diet” and you’ll get several helpful articles. Over the years I’ve gotten to where I eat whatever I want, while learning what to avoid (in my case it’s spicy and creamy, heavy foods. But never had to give up dark chocolate!) I have found that taking Beano and Lactaid (if needed) before eating frequently helps. And not eating very large meals.
I’ve been on Octreotide injections since April 2018 (aside from 6 months on Lanriotide but had to stop due to side effects). I’ve found many (if not most) doctors are not all that familiar with possible side effects. A very helpful website is https://www.drugs.com. I try not to worry that I’m going to have those side effects, but educate myself to be able to identify any possible side effects as being related to a certain med.
One last thought: this is a chronic illness and one that we can manage. Please check in any time you need to.

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I am beyond appreciative for the internet resources and you are so right about not much from the oncologists in the way of information regarding side effects or diets. I feel so blessed to have stumbled on this group while scouring the internet for myself! Hugs!!
P.S. Have you had issues with avocados? One site I found says not to eat, it some say it is a healthy fat.

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2 replies
phyllisden | @phyllisden | Jul 20, 2023
In reply to @nana120 "I am beyond appreciative for the internet resources and you are so right about not much..." + (show)
@nana120

I am beyond appreciative for the internet resources and you are so right about not much from the oncologists in the way of information regarding side effects or diets. I feel so blessed to have stumbled on this group while scouring the internet for myself! Hugs!!
P.S. Have you had issues with avocados? One site I found says not to eat, it some say it is a healthy fat.

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Nana120, glad you found this info helpful.
Hate to say but I'm not an Avacado person so can't answer your question. I will tell you that it's just a real trial and error figuring out what you can/can't eat. I had the double whammy of losing so much of my intestines. I did attend an online conference through LACNETS recently (excellent) and the general consensus is basically you can eat whatever you want as long as it agrees with you and you try to eat healthy. I do take 2 prebiotics (one in the morning and one at night), and recently started a pro/prebiotic combo.
I'm sure you'll get some helpful information from others here, and good for you for reaching out.

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1 reply
phyllisden | @phyllisden | Jul 20, 2023
In reply to @phyllisden "Nana120, glad you found this info helpful. Hate to say but I'm not an Avacado person..." + (show)
@phyllisden

Nana120, glad you found this info helpful.
Hate to say but I'm not an Avacado person so can't answer your question. I will tell you that it's just a real trial and error figuring out what you can/can't eat. I had the double whammy of losing so much of my intestines. I did attend an online conference through LACNETS recently (excellent) and the general consensus is basically you can eat whatever you want as long as it agrees with you and you try to eat healthy. I do take 2 prebiotics (one in the morning and one at night), and recently started a pro/prebiotic combo.
I'm sure you'll get some helpful information from others here, and good for you for reaching out.

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Correction to my previous post: I take two probiotics. (not prebiotics) And one that's a pre/pro combo.

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