Anyone have side effects after Lanreotide injection?

Hello @genovaldi and welcome to the NETs support group on Mayo Connect. There is an article on this topic from Mayo Clinic. Here is a quote:

"This medicine may increase your risk for heart and blood vessel problems, including hypertension and a slow heartbeat. This may cause chest pain or discomfort, headaches, dizziness, or blurred vision. You might need to measure your blood pressure at home. If you think your blood pressure is too high or if your heartbeat is too slow, call your doctor right away."
Read more here https://www.mayoclinic.org/drugs-supplements/lanreotide-subcutaneous-route/precautions/drg-20071321#:~:text=This%20medicine%20may%20increase%20your%20risk%20for%20heart%20and%20blood,your%20blood%20pressure%20at%20home.

@gsm13161 @allan2022 @gneiss50 @californiazebra @ginnyos @amandafl may also have experiences to add.

As you are new to this discussion group, please share a bit about your history with NETs. For example, how long ago were you diagnosed. What treatments, other than the monthly injections, have you had?

I’ve been taking octreotide injections for over 3 years for lung NETs. Cause fatigue especially the day of the injection, low heart rate, low BP, hair thinning, blood sugar spikes, and maybe more. I’m also on 2 breast cancer meds that I started two months before octreotide and they cause lots of side effects too so it’s hard to know which med to blame sometimes but I noticed an increase in the above issues with octreotide. Octreotide has really helped my respiratory issues (huge plus) and hopefully slowed growth in my already slow growing 50+ lung tumors. I will say that some side effects can become less severe over time as your body adjusts. I will continue to take octreotide as long as it works as the good outweighs the bad for me. Hope it’s the same for you.

The lanreotide injections did not do what the oncologist had hoped for my sister. They are starting her on chemotherapy infusions Monday. She is having the Folfox aka the 5fu chemo drug. Has anyone heard of this or been given this chemo treatment for PNET?

Hello @meandmysis

Yes, we have had several members who have used Folfox. I will invite some of them to this conversation, @bnjncrew (her husband was given Folfox) and @tomhayes54 and there are others, I'm sure

How is your sister feeling now?

She starts her chemo Monday July 8th. Her tumors have increased in size causing her to have a lot of GI issues and pain in her side that radiates to her back.

I hope that all goes well for her on Monday, @meandmysis! Will you post again with any questions or concerns and let me know how she is doing?

Thank you and I will keep you updated.

My best to you. My husband did Folfox for 6 months. He had difficulty eating so several small meals/snacks daily is good. The nutritionist had him start drinking Fiji water as it has electrolytes and minerals more than others and that really helped but it is very expensive. This treatment did reduce the size of his tumors significantly but he stopped due to significant neuropathy. He had less side effects from CapTem but that stopped working for him. He has just finished the 4 cycle treatment of Lu 177 radiation treatments and is doing well.

Thank you @bnjncrew. I truly appreciate you taking the time to give me this information. I have watched a lot of videos of people who have taken this and most talk about extreme sensitivity to cold anything, neuropathy and nausea. My sister has a well differentiated pancreatic neuroendocrine tumor Grade 3. May I please ask what your husband’s grade was? We had a video with her oncologist and he said that he if my sister didn’t start this chemo she would qualify for comfort care/hospice if she didn’t want treatment because there has been significant growth. All of this is a lot to try and understand. He said that without treatment she would have a range of about 6 months, more like 3-5 months. It was a very hard appointment. 😭

I also take ocreotide injections monthly. I’m usually tired for 2 days after each shot. But I also get a severe respiratory reaction to the shot so I also take Benadryl before each shot, so I’m not too sure whets actually causing the tiredness..