Anyone have side effects after Lanreotide injection?

Hi, see above on 7/11 from me previously in re: to history. Stage 4 PNET, with liver mets, grade 2. Common side effects for me recently are bradycardia / fatigue / nutrition issues / terrible stomach gas & constipation / ocular migraines / headaches. I've now had 7 injections monthly of Somatuline Depot 120. Last month was particularly bad with the stomach side effects, they lasted a couple weeks, but I also had hernia surgery. So far hardly any side effects after last injection last week, knock on wood! Great news is the lanreotide is keeping my liver tumors at bay and my surgical and medical oncologists feel optimistic about how things are going. I go back for more scans in six months. I do try to keep my diet bland after the injection and feel there is alot of credibility to the low amine, low residue diets that NETS patients are recommended to eat. I sure wish you well, along with low side effects! My oncologists both say I am not the norm.

I had neuroendocrine tumors in my small intestines. I had surgery in 2017, the surgeon removed some of my intestines and lymph nodes. The surgery went well, I haven’t had any more tumors in small intestines but 5 years later the tumors showed up in my liver. I am still taking the lanreotide with a few side effects. The first 2 years I didn’t really have much side effects, but now my tumors are starting to grow a little bit. I have scans scheduled this week at the Mayo in Jacksonville. The oncologist wants to start me on a treatment called Lutathera. My prayers are with you and your family. I will pray that God will heal you from all cancer and sickness. God Bless

@steven1953: I am sorry that you are dealing with the uncertainty of tumor progression. My situation has some similarity to yours. Diagnosed 10/22- 2 years Somatuline Depot 120mg every 28 days, but 3/24 MRI showed small intestine primary had grown into stomach and liver metastases had also progressed. I went to City of Hope for 2nd opinion and treatment advice from renound NET Oncologist. I found that a large CANCER hospital offered best scanning results, more treatment options as well as cutting edge expertise.
I chose PRRT Lutathera Infusion therapy and will receive 2nd infusion 8/8/24. So far so good with minimal side effects and hopes for tumor control for several more years with quality of life. At 79 yrs I thought this was my best option, but it is really a crap shoot. Best to you!

I get octreotide injections along with exgeva monthly and yes, I’m pretty wiped out for about the first 24 hours. Pretty quick bounce back so it’s okay. The stuff has worked pretty good so far. Just minimal progression like the way a ‘72 ford pinto with a bad engine runs. The radiation oncologist says the cancer(metastatic paraganglioma) is kinda “sputtering along” and, God Bless, I’ll take that any day.

@tattyk, checking in. How is it going so far with lanreotide treatment? How are you doing?

I have been diagnosed with a VERY rare lung disease called DIPNECH. Saw the expert at Vanderbilt yesterday. My choices are to have an open lung biopsy to confirm the disease OR start Lanreotide monthly injections. My nodules on lungs are very slow and a pre cancerous condition. Trying to find out how bad the side effects are? Please advise and thanks!

Hi @marciamiller
I also have DIPNECH and lung NETS (cancer). I’m guessing you saw Dr. Ramirez. I’ve watched his presentations on YouTube and like his interest in DIPNECH.

When my 50+ lung nodules were discovered in 2008, lots of wrong guessing about what it was. I refused an open lung biopsy. I felt like it was too much to recover from. The largest tumor was finally large enough for a needle biopsy in 2020 so that is when I was diagnosed. My nodules are also very slow growing.

I’ve been taking monthly octreotide injections for 3.5 years now. Octreotide is similar to lanreotide. I would love to know why he’s choosing lanreotide over octreotide for you. Octreotide improved my 30 years of coughing, mucous and shortness of breath issues tremendously. I never plan to stop the injections. Everyone reacts differently to each med. It has given me blood sugar spikes, fatigue, some hair thinning, lower blood pressure and heart rate. Those are the key issues for me. I also started two breast cancer meds two months before the octreotide that also cause fatigue, hair thinning and other issues so it’s hard for me to say exactly how much the octreotide contributes but those issues got worse. Nothing I can’t live with. Worth the trade off to me. Octreotide also slows tumor growth.

Would love to know more about your case. Do you have respiratory symptoms? How many years? How many nodules? Feel free to private message me if you want.

Hi! I have probably had lung nodules for twenty or more years.
Three years ago my cough became chronic and intolerable.
I don’t know how many nodules I have and I don’t know why Dr. Ramirez recommended one drug over another. I feel I have three choices: do nothing as I most likely have had this for a long time and monitor with scans… do the lung biopsy so I really know what I’m dealing with… take the lanreotide which seems to have significant side effects. I’m leaning to do nothing or have the lung biopsy as my cough is strangely much better at this point. Feel free to stay in touch. I’d be happy to give you my email as well. Best, Marcia

Hello @marciamiller and welcome to Mayo Connect. I am glad that you found this forum. DIPNECH is a rare form of cancer and it helps to meet others who have journeyed through this diagnosis. I see that @californiazebra has already responded to your post.

If you would like to learn more about the experiences of others who have taken Lanreotide monthly injections, here is a listing of all of the posts in this discussion group who have posted about Lanreotide,
--Lanreotide
https://connect.mayoclinic.org/discussion/just-diagnosed-metastatic-nets-treatment/?pg=4#comment-855807
You will see that many of the members who have posted have had favorable results with this monthly injection and some have experienced side effects. It is important to remember that one person's experience, does not necessarily represent what your experience will be. We all react differently to medications.

As this is a new diagnosis for you, I am glad to see that you are being proactive and seeking out information. Will you continue to post as you make decisions on treatment?

One of the nice things about trying a new medication is that if it doesn't make you happy, you can discontinue it. I have stopped other medications due to side effects, but I'm doing well with the Lanreotide. My side effects are mild. (Nothing that stops me from doing my job)
Blessings!