Anyone have hair loss with lanreotide?

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.

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.

I get frustrated with the lack of acknowledgement of side effects as well. I think they don’t warn you in advance for fear you’ll imagine them. You don’t imagine hair loss. I can report ten side effects to my oncologist and he’ll say, so you’re doing great. See you next time. Sometimes I’m shocked by the portal notes and feel very unheard. I could tell him my left leg just fell off and the notes would say patient denies left leg falling off. Or I could say it happened 20 min after taking the med and he’d say it’s unrelated. I look at my lab scores that were all normal before cancer meds and now there is red all over the report stating abnormal yet my oncologist sends me a note that my labs look great. Why can’t he just say abnormal scores are as expected but nothing that would require us to stop treatment. I also think they just get so used to hearing the same complaints from every patient that it starts to sound normal to them. Finally, I worry that providers are under pressure to report good outcomes for better quality scores and possibly financial incentives and that’s why my side effects are not well documented.

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.

Good morning! I too have similar experience with hairloss. I have been on Lanreotide for 11 months. Around 9 mo my hair started falling in handsfull. So I had a very short haircut. After 11 mo it had slowdown, but I still see hairs on my pillow and lots in the shower. And I had VERY thick hair before cancer. Also my nails are so brittle and have ridges. Still, I think this is a small price to pay for being alive.
I found a solid shampoo ( Kitch, from rice protein), which if it did not help my hair grow more, seems to make it look a bit fuller. I miss my hair a lot. But, I too have not received a compassion from my doctors...

I totally agree with what you are saying!
My liver enzymes (ALT, AST) are almost double ( 70, 79 to normal 35, 36) and yet, no one is mentioning that anywhere - in the After visit summary notes or during my conversations. Frustrated! But I hope at least the drug prolongs my life. I am 63 yo.

I keep saying I’m going to check out wigs. I just haven’t done it yet. Not sure how much of a hassle it would be. I have a friend who had extreme hair loss without cancer and a wig looked natural on her and what a difference it made. She said she tried lots of different wigs and the $200 synthetic one was the easiest to care for and the most comfy. Better than the expensive ones. Looked great on her. Everyone in Hollywood wears lots of different wigs just for fun so it’s a good time to try one. Make an appointment at a wig shop where a professional can assist you. No obligation. I have other healthy friends who want to try wigs just because they don’t like their thin straight hair. If anyone tries them pleases report back with details.

Wow, I’m beginning to think I just opened Pandora’s Box. I don’t know whether to feel comforted by other’s shared experiences or not, but the consensus seems to be that we would love to feel heard. Thank you everyone for sharing!!❤️

Hi Nana120, Oncologists are vague because everyone's reactions are different depending on their DNA, other interferences i.e. drugs, treatments.
Hats, wigs, creative hairstyles, and mostly lower stress! Good luck and it may get better.

Hi Roseflame
As a side note, my Oncologist stated that no chemicals (i.e. Rogaine) be applied. Your dermatologist should be in touch with the team. I think we all go into shock when changes such as hair loss occur (woman's vanity) as opposed to male pattern baldness (opportunity to look like the Rock). Being alive with the hope of more advanced treatment is exciting.