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Anyone have hair loss with lanreotide?

Neuroendocrine Tumors (NETs) | Last Active: Nov 4 10:44am | Replies (22)
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@californiazebra

Hi @nana120

I believe your hair loss will stabilize. My hair has really thinned due to 3 cancer meds that all cause hair thinning. Started 2 for breast cancer 3 years ago then 2 months later started octreotide (like lanreotide) for lung NETs. For the first year every time I even touched my hair I had 30 hairs in my hand. That eventually stopped but my once thick curly hair is still thin, lifeless flyaway hair but not bald. Scalp is covered. It just looks like I don’t have great hair but no one would suspect due to meds. I do wear hats a lot just because I no longer like my hair.

When I started octreotide I lost 5 pounds a month for 6 months then stable for 6 months then gained 5 pounds a month and now stable for 1.5 years. So weird because I was eating the same all along.

Prayers that the lanreotide does its job and your side effects stabilize.

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Replies to "Hi @nana120 I believe your hair loss will stabilize. My hair has really thinned due to..."
nana120 | @nana120 | Feb 3 3:26pm

Thanks so much for sharing. All the side effects they don’t acknowledge, but when mentioned my oncologist is always vague about others with similar experiences. It would seem that by now there would be enough data to establish some patterns.

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roseflame | @roseflame | Feb 4 8:20am

Hello Nana120, I have been on Lanreotide for 14 months and have lost at least 70-80% of my once-thick, curly hair. I have been so depressed by this happening. My doctor also denies it’s the drug but blames it on “your age.”

I have never had hair loss in my life, and I’ve been old for a while (I’m 78). My dermatologist suggested Rogaine, but the directions say that causes initial loss before beginning to improve, and Im scared to cause more loss, fearing becoming completely bald.

I keep telling myself that given that the drug is prolonging my life, losing my hair is a small price to pay, but it is still a very disturbing situation.

Best wishes to us all.

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