Anyone have side effects after Lanreotide injection?

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.

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!

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

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.

@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 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

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 have neuroendrocrine tumors in my liver.six years ago it was near my bowels. Then the numbers were good after surgery. Five years later they are in my liver, undifferentiated and low. Start Lanreotidee this week. What should I expect in reactions.

Absolutely, also thank you for info about the virtual support group! Have a good one!

I am glad that you are aware of your options, @cmhgiddy24. You sound like a proactive person who is engaged in their medical treatment and that is very important. You might also consider attending Mayo Clinic's virtual support group that meets on the first Thursday of each month. It originates from Jacksonville and is facilitated by a Mayo Clinic social worker. There are often guest speakers from Mayo Clinic who speak on various topics related to NETs with a question/answer time and then time for the members to talk about their questions and problems with each other. I'm sure you would find helpful information and also support from that community.

I look forward to hearing from you again. Will you continue to post as you have questions or concerns?