1. < Neuroendocrine Tumors (NETs)
Profile picture for nana120

Anyone have hair loss with lanreotide?

Posted by nana120 @nana120, Feb 3, 2024

After 8 months on lanreotide I am getting the diet down and no longer losing weight, but my hair loss is beginning to be noticeable. Will it stabilize like my weight? If not, I may eventually be bald. My second CT on my liver NETS is March 8, 2024 & hoping for continued slowing of the growth.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Profile picture for joy5877
joy5877 | @joy5877 | Nov 4, 2024
In reply to @splendrous "I have had very good success with minoxidil 2.5mg once a day. It takes time. 6..." + (show)
Profile picture for splendrous @splendrous

I have had very good success with minoxidil 2.5mg once a day. It takes time. 6 months to a year. So not an overnight treatment. Same drug that is in rogaine foam treatment but much easier as a pill. Highly recommend for thinning hair.

Jump to this post

Is the minoxidil a prescription? Who prescribed it for you?

I am having hair loss as well. I am not sure if it is from the shot, anesthesia, or loss of vitamins from the diarrhea.

REPLY
Profile picture for splendrous
splendrous | @splendrous | Nov 4, 2024

It is a generic drug. Not expensive. I had my oncologist prescribe, but a primary or dermatologist could also.

REPLY
Profile picture for rachel333
rachel333 | @rachel333 | 1 day ago
In reply to @roseflame "Hello Nana120, I have been on Lanreotide for 14 months and have lost at least 70-80%..." + (show)
Profile picture for roseflame @roseflame

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.

Jump to this post

@roseflame There is a shampoo from Humby organics that is blueberry and it helps. You can skip the whole kit and just get the bar for cheaper. I am going to start doing smashed blueberry and coconut oil masks on mine. It's my 2nd month and I am seeing loss. Blueberries grow hair! Good luck!

REPLY
2 replies
Profile picture for maeve115
maeve115 | @maeve115 | 1 day ago
In reply to @rachel333 "@roseflame There is a shampoo from Humby organics that is blueberry and it helps. You can..." + (show)
Profile picture for rachel333 @rachel333

@roseflame There is a shampoo from Humby organics that is blueberry and it helps. You can skip the whole kit and just get the bar for cheaper. I am going to start doing smashed blueberry and coconut oil masks on mine. It's my 2nd month and I am seeing loss. Blueberries grow hair! Good luck!

Jump to this post

@rachel333
Interesting thread. I had hair loss but it stabilized with time. My Doctor said it is not a side effect that is listed, but I suspect otherwise.. How I feel about it: Definitely, Yes a bit of vanity and Yes to a bit of gratitude that the Lanreotide is working on progression and symptoms..

REPLY
1 reply
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 1 day ago
In reply to @rachel333 "@roseflame There is a shampoo from Humby organics that is blueberry and it helps. You can..." + (show)
Profile picture for rachel333 @rachel333

@roseflame There is a shampoo from Humby organics that is blueberry and it helps. You can skip the whole kit and just get the bar for cheaper. I am going to start doing smashed blueberry and coconut oil masks on mine. It's my 2nd month and I am seeing loss. Blueberries grow hair! Good luck!

Jump to this post

Hello @rachel333 and welcome to the NETs support group on Mayo Clinic Connect. As this is your first post, please share, as you are comfortable, a little about your journey with PD.

Is this a new diagnosis for you?

REPLY
Profile picture for nvent5
nvent5 | @nvent5 | 18 hours ago
In reply to @maeve115 "@rachel333 Interesting thread. I had hair loss but it stabilized with time. My Doctor said it..." + (show)
Profile picture for maeve115 @maeve115

@rachel333
Interesting thread. I had hair loss but it stabilized with time. My Doctor said it is not a side effect that is listed, but I suspect otherwise.. How I feel about it: Definitely, Yes a bit of vanity and Yes to a bit of gratitude that the Lanreotide is working on progression and symptoms..

Jump to this post

@maeve115 I had shot number 6 and my hair has been falling out since the 3rd. My doctor said the same thing— not a common side effect. He said I could try minoxidil but only the topical and not the pill form. I was told I could try biotin but not to take it the week before my shot because it could mess with labs. I just had a physical and my PCP just ordered thyroid tests so I will wait for that.

REPLY
1 reply
Profile picture for maeve115
maeve115 | @maeve115 | 17 hours ago
In reply to @nvent5 "@maeve115 I had shot number 6 and my hair has been falling out since the 3rd...." + (show)
Profile picture for nvent5 @nvent5

@maeve115 I had shot number 6 and my hair has been falling out since the 3rd. My doctor said the same thing— not a common side effect. He said I could try minoxidil but only the topical and not the pill form. I was told I could try biotin but not to take it the week before my shot because it could mess with labs. I just had a physical and my PCP just ordered thyroid tests so I will wait for that.

Jump to this post

@nvent5
Omigosh.. "Not a common side effect" does not mean not a side effect. Glad you have a competent PCP who is checking out thyroid.. My hair stopped shedding and now is just thinned out.. too much I think but am grateful at least it did not continue. It will be interesting to see the thyroid test results. Hoping things work out ..

REPLY
Please sign in or register to post a reply.