Facial and lip sores from lanreotide injections for NETs?

Posted by dbamos1945 @dbamos1945, May 27, 2023

NET monthly Samotuline Depot injections seem to cause increasing sores on face and around exterior lips. Help!

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I have sores and use Nivea lipcare and lipcare with calendula ( from Europe).
I also noticed hairloss, that I have not seen in the side effects..

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Pavina60: thank you for your response and helpful suggestions.
Yes, hair loss has been significant… all over body. I wear a wig daily and found wearing it boosts my self-esteem and attitude.
My current challenge with facial/lip/nose sores are painful & I m anxious to try your remedy’s. Thank you for caring about me.

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@dbamos1945

Pavina60: thank you for your response and helpful suggestions.
Yes, hair loss has been significant… all over body. I wear a wig daily and found wearing it boosts my self-esteem and attitude.
My current challenge with facial/lip/nose sores are painful & I m anxious to try your remedy’s. Thank you for caring about me.

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@dbamos1945 - how long after Lanreotide ( how many injections?) you noticed hairloss? I had my third on May 8 and hair is falling off like crazy... 🙁

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Pavina60: Hi I hope you are having a good day! I received my 6th shot in May. I use a large tooth comb and have a handful of hair morning and evening. I noticed an increase about 4 months ago. I no longer have hair on my legs and arms, and have sparse eyelashes, but my eyebrows remain about the same. I’m grateful I don’t mind wearing my wigs. I am 79 next week and don’t know if my age plays a part.

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@dbamos1945

Pavina60: Hi I hope you are having a good day! I received my 6th shot in May. I use a large tooth comb and have a handful of hair morning and evening. I noticed an increase about 4 months ago. I no longer have hair on my legs and arms, and have sparse eyelashes, but my eyebrows remain about the same. I’m grateful I don’t mind wearing my wigs. I am 79 next week and don’t know if my age plays a part.

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dbamos1945- I still have some hair... Before my surgery on Feb.1st I had a very short haircut to make it easier to take care of it. My hair used to be very coarse and lots of it, now not so much. I am 62 yo, have not gotten a wig yet, but that time is probably coming.. At least I am still alive - hair or no hair! ( my pNet was huge 20 cm, plus I had endometrial cancer. Had 9hr surgery for both) Hugs!🦓💜

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@pavlina60: wondering how your pancreatic cancer is behaving after surgery. My latest MRI showed significant tumor progression while on 2yrs of stable disease on Lanreotide 28day injections. I went to City of Hope, received 2nd opinion from renound NET Specialist and have received numerous choices of treatments. I choose PRRT over surgery and chemo and looking forward to 2nd infusion in August (hoping for quality over quantity of life). I am very interested in your health update if you feel like sharing. Best Health to YOU!

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@dbamos1945 - so far my disease is stable, no new growth after 16 months on Lanreotide. I have another CT scan in August. I will ask for MRI or PET-Dotatate when I meet with my oncologist in September. He tells me that until he sees ' negative development' to stay on Lanreotide (120 mg, 28days). In a previous conversation he mentioned PRRT as an option with fewer side effects than CAP/TEM..
But- debulking surgery is working for me thus far.
Wish you luck with PRRT! I am hoping to die with this cancer and NOT from it. Best health to you!

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@pavlina60

I have sores and use Nivea lipcare and lipcare with calendula ( from Europe).
I also noticed hairloss, that I have not seen in the side effects..

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Going for my 3rd injection of 120 mg Lanreotide next week. No facial or lip sores. Have you ever had a cold sore (hsv) in the past? (I never have.)
If so. I'm wondering if the Lanreotide is causing the cold sore virus to flare up (?). Or does this feel different than a cold sore?
As far as hair loss: the "consumer use & disclaimer" information sheet I was given for Lanreotide lists thyroid problems as a possible side effect. Low thyroid function is famous for causing hair loss. My thyroid hasn't worked for 20+ years, so I take synthroid. My hair is still thinning- but nothing alarming- even after 20 years, I have no bald spots. Maybe you could ask your Dr to add a thyroid function test to your next blood work. If the Lanreotide is messing with your thyroid hormones, that is something you should know.
May you be blessed with Peace, even through the chaos of cancer!
Pam (NET w/ small intestine origin- spread to liver, bones, & peritoneal lining. Diagnosed 1/24)

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My 4th Lanreotide injection was Monday. By Tuesday AM I had a painful pimple in crease of skin at the lower left side of my nose, and a "fever blister" type sore at the left corner of my lip. Very odd as I've never had a cold sore/ fever blister & even in puberty, pimples were rare for me.
By Wed AM, i had what felt like a stye on the lower edge of my left eye. On Wednesday PM, a tiny spot in center of my upper lip suddenly felt hot- like a bee sting- (but no bee!) Thursday AM, there was a blister on my center, upper lip a little larger than the head of a bulletin board push 📍 pin.
By Friday AM, there was 2 more lip blisters, 3 more very tender, deep "pimples" on the left side of my face and another "stye" on the lower eyelid of the same left eye. I can open & shut my eye, but its definitely"puffy" and swollen. . It's difficult to explain, but my skin in certain places just feels tender to touch. Also the lymph gland in my neck under my left ear is swollen & tender.
I finally had an "aha!" moment, recalled ypur post & realized this must all be a reaction to the Lanreotide shot.
I've been doing warm compresses which help for short amounts of time. Also taking acetaminophen.
I think it's interesting it all is on the left side of my face. It must somehow be related to the left facial nerve. (Not that knowing that makes any of this less painful! Oy!)

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