Anyone have side effects after Lanreotide injection?

Am I the only one that Lanreotide makes feel horrid? I’m nauseated and constipated with a cramp in my right side that encourages my IBS to act up.
My GERD has gone berserk and scoffs at both famotidine 40 mg and Nexium.
Then there are the migraines - even Ubrelvy can’t conquer them as one headache ends and another begins within minutes. I have insomnia and am sluggish and achy all day.
I also am mightily depressed because I have an active life that I’m viewing from the sidelines.
My oncologist says I can stop these shots after this, my second one, but I need to know how long or if I will feel this way forever. I got the shots in the first place because of the severe flushing, even though no tumors appeared on the scans and my Chromogranin A level was 607. After the first shot my level was 326. My oncologist is “aware” of my situation, according to her nurse but she gave no suggestions to alleviate these reactions so I thought I’d ask y’all for assistance and information.
Blessings!

Yes, I have hair thinning. My curly gray hair measures a few inches below my shoulders. The curls help mask how thin it is. But, I've also been on synthroid/levothyroxine (which also causes hair thinning) for 21 years. My hair used to be too thick to even pull 1/2 of it into a barrette. Now all of it fits easily. so I've lost about half my hair to synthroid.
Since starting Lanreotide 6 months ago, I have seen an increase in hair loss. I warned my hubby that between the 2 meds, I'm going to go bald like him! I don't know where my stress levels would be without God's promises in Revelation 21:4.
But the Lanreotide hasn't caused any loss of energy, nausea, or body aches. I can wear a cute hat or a wig. It doesn't affect how my body feels! I admit though. it does affect how I feel about my body- but then again, so did the breast cancer lumpectomy that left me with a golfer's divot on my right breast! Lol.

Yes, I have hair thinning. My curly gray hair measures a few inches below my shoulders. The curls help mask how thin it is. But, I've also been on synthroid/levothyroxine (which also causes hair thinning) for 21 years. My hair used to be too thick to even pull 1/2 of it into a barrette. Now all of it fits easily. so I've lost about half my hair to synthroid.
Since starting Lanreotide 6 months ago, I have seen an increase in hair loss. I warned my hubby that between the 2 meds, I'm going to go bald like him! I don't know where my stress levels would be without God's promises in Revelation 21:4.
But the Lanreotide hasn't caused any loss of energy, nausea, or body aches. I can wear a cute hat or a wig. It doesn't affect how my body feels! I admit though. it does affect how I feel about my body- but then again, so did the breast cancer lumpectomy that left me with a golfer's divot on my right breast! Lol.

Has your hair thinned? Has that been an issue? Thanks!

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!

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

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.