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

Morning!
My primary was on my ilieum which metastasized to my liver and pancreas. I was diagnosed in April of 2022. I also get Lanreotide every 28 days. The first several months I had severe cramping afterwards for a day. I found that a heating pad helped me a lot! Now, I get the shot and I have no side effects at all. I also eat a plant based diet, no processed foods or sugar. I juice a lot and take Essiac tea and other supplements. The measurable tumors I do have on my liver have reduced in size two times.
Good luck to you and I hope this helps a bit.

Thank you so much for the reply! Will you give me more details on the tea and supplements. I am losing weight & had already lost 20 lbs and need to gain some, so I’m not sure how this will happen on such a strict diet. I still can’t find a list of foods to avoid.

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!

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.

I to had my first Lanreotide injection on July 6th after having pancreatic cancer surgery in March of 2020. They removed most of my pancreas and my spleen as well as gallbladder as apparently future meds would of likely caused gallstones so they took it at the same time. After surgery they put me on Creon to help digest food and I must say it really does work. It has since spread to my liver hence Lanreotide. I started having gastric issues again before I even started Lanreotide so I can't tell if it makes it any worse. I upped my Creon to two pills with breakfast seems to help and still just one with other meals. If I do start to have pain I take a Gas-X and that seems to knock it out. It's really hard to identify what I can eat and what I can't since it does not seem to be consistant and I to cannot afford to lose anymore weight, fatty foods seem to be the most consistant food that give me problems.

I was not warned of side effects but I do still have a large lump about a quarter size and deep at the injection site two weeks after injection. I really hope it dissapates as I can't imagine getting these everytime I get the injection. Also, mine are prescribed for the foreseeable future.

I have not been offered any additional medication for any side effects, but I have not experienced any complications with the injections site either. I can hardly tell where it was placed, but it was only my first, so time will tell if that continues. Bless you heart!

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.

@ronjake, I’ve been on injections of Octreotide for 5+ years and only had a lump twice at the injection site. I’ve come to believe it’s due more to the shot giver than the med itself. I’ve read that usually indicates the medication was not totally absorbed. It is very thick and should be brought to room temperature about 30 minutes prior to injecting.
For 5 years they always gave it to me in my hip, right above the buttocks, but in May I moved to a different cancer center and there they give them on the side hip, right above the top of my leg. I haven’t decided if it’s better as I’ve only had two, and they felt very different.
Hope you do well on the medication and find it’s helpful in dealing with your symptoms, and your scans show they’ve been effective.

I started taking Lanreotide 2/15/23. I had similar side effects at first until full blockage and subsequent removal of SI- NET and 10in SI, GB and some lymphnodes. I was eating small portions and plant based diet. Now im eating chicken, pasta and bread too. Ive gained back 15lbs of the 30lbs i lost prior to surgery. No more bloating or abdomen pains so feeling great. What did you do to shrink the liver NETS? I still have liver and stomach NETS id like to shrink or remove. What is a good source for NET appropriate diet?

Thank you for the diet resource. Im 55 and only 6 months into this process so all this information is helpful.🙏💚