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Anyone have side effects after Lanreotide injection?
Neuroendocrine Tumors (NETs) | Last Active: Nov 2 6:47am | Replies (35)Comment receiving replies
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!
Replies to "I have been diagnosed with a VERY rare lung disease called DIPNECH. Saw the expert at..."
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?
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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.