Hair falling out with Piqray? - SHARE Metastatic ...

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Hair falling out with Piqray?

Lolli2020 profile image
13 Replies

Hi everyone, first of all I am praying for and wishing everyone the best as I enter our site. I know that so many are dealing with very difficult diagnosis and the daily fight for us all is so weighty - so know I am thinking about you!

I was just wondering if anyone else is experiencing more hair loss since starting on Piqray. My oncology nurse said it more likely the faslodex/fulvestrant - but I've been on that for over 3 years and the hair loss seems to have started more around the time I started taking Piqray .... and hair loss IS one of the symptoms! I've had to cut my hair short to help make it look fuller.

So if anyone has any thoughts or has had something really help with this, regardless of which meds your on, I'd love to hear from you. I do have some hair, skin and nails supplements with biotin, but haven't been good to take them. I'm sure there's also a better shampoo than what I'm using. I've been bald before and in the grand scheme of things, it's not the worst thing that can happen. But I'd rather not - haha!

Thanks for your support ;)

~Anita

PS: I'm going to be a grandma again. Our baby boy will be joining us in February!!

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Lolli2020
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13 Replies

Hi Lolli2020,

I'm queued up for Piqray with next change, so am hoping you're wrong about *further* hair loss!

My hair is really awful and when I look back on photos from when I was doing Let+Ibrance, it was better than it is since Faslo. So maybe faslo is the culprit? Or maybe it's cumulative, i.e. each treatment makes it worse...I think this was true for me, i.e. IV chemo with orig dx made my hair grow back a different color and curly/fungus like, Ibrance +Let made it thin, Faslo made it thin even more and get wire-y (sp?).

I mostly just avoid mirrors and cameras and occasionally feel sorry for the people who have to look at me... :)

I don't have experience with any remedies, but my onc told me early on that rogaine can help. I read mixed things - here - re: the biotin. I know barbteeth did extensions which looked great, so maybe that's an option?

Best of luck with it! Let us know if you figure something out!

Lynn

Lolli2020 profile image
Lolli2020 in reply to

Hi Lynn - thank you for your reply! I'm guessing you're right - that it's just the accumulation of it all the longer we are on any of the meds. I sort of mourn the loss of my thick hair and feel the same way you do about looking at it. It still covers my head but I keep wondering how long that will last - haha! My hair grew back in curly after first chemo in 2012 so that's been different. But up until more recently I could style it nicely. I've wondered about Rogaine and may look into that some more. Have been trying a product by Monat but haven't seen any results. Never thought of extensions and might look into that ;)

I'll be thinking about you and praying that we both find a way to counteract this! I'm sorry it's been difficult for you as well!

Blessings ~ Anita

in reply toLolli2020

Thanks, Anita -

I suffered less of a loss since my hair was never "thick"...Used to be pencil straight, very fine, and a good cut, a "bob", kept it low maintenance since I was a kid. So I never learned how to operate blow dryers, let alone flat irons, etc. I'm still "wash and go", and suffer the consequences... :)

Goldenhair profile image
Goldenhair in reply to

I believe I am taking faslodex/fulvestrant. My should length hair melted, people are surprised when I say this. First, my hair fell out obsessively. Then it was fused together and I couldn’t brush/comb through it. I had a hairdresser cut it about a 4 inch in length. I wore wigs. Today, it is almost 2 inches in length and I no longer wear wigs. I instead wear a braided synthetic hair band that makes me look like I’m Dutch or Scandinavian with blond hair. Chuckle, chuckle! My hairdresser recommended, and she too is using Viviscal pills, as a strength hair growth supplement. I also bought the Viviscal shampoo and conditioner. I am just 9 days of the 2 pills a day along. So I can’t say if it is working yet. The box says it takes 4 stages in a 3 to 6 month period. This is what I am doing for me. I wish the best for you. -GH

Lolli2020 profile image
Lolli2020 in reply to

Thank you! I just got a cut and color and it has helped. I started using my Rogain again this morning, and I'm going to stick with it long enough to see if it can really help! I understand completely about avoiding mirrors and photos. My family and friends are so supportive and kind. Still - I know how bad it looks - haha! I guess in the grand scheme of things, the most important thing is that I'm still here ;)

ChrisVict profile image
ChrisVict

Biotin 5,000 units helps.

blms profile image
blms

I wish I could tell you that being bald again bothers me, it does not. Although i looked really good bald when I was 48, not so much at 71! But, do I care?? No. I did buy a few wigs which i wear only when I feel I have to but most of the time right now, I am just wearing baseball hats which I bought in every color imaginable and when I feel like makeup (the miracle art), then I put big clip on earrings which I love and a baseball hat. Plus its summer so I really don't care. Where do you live??

Lolli2020 profile image
Lolli2020 in reply toblms

I’m pretty much with you on the being bald again thing. I’m not there yet by any means but it seems to be headed that direction! I told my husband to let me know when he feels like I should start wearing a cap or something since I can’t see what my entire head looks like — ha ha! The short cut has made it looks so much better so far. I feel like I rocked the bald head when I was 52, but not so sure that will be the case at 61! If it comes to that, I’m sure I will roll with it. I love that you call make up the miracle art. It’s a fun way to put it! Thank you for your reply. It’s always good to get another perspective. I live in Texas. How about you?

blms profile image
blms in reply toLolli2020

Well, i am still looking for someone on this site from the Washington, DC area but so far no luck! I love Texas! My dad was from Texas and we traveled there all the time growing up. I have such amazing and fond memories of my family and our experiences there. My dad always said I drove like a cowgirl! Where in Texas are you?

Lolli2020 profile image
Lolli2020 in reply toblms

I live N of Fort Worth

blms profile image
blms in reply toLolli2020

My dad was raised in Wellington

blms profile image
blms

IF I ever figure out how to get a photo on here, I will send you pics of my fun wigs!

Klamato profile image
Klamato

I too, have been losing and thinning my hair after 6 months on Piqray. I’m wondering what shampoo or treatment to use right now. In addition, my face and eyes, nose itch constantly. I am 80 years old with 4 stage breast cancer and I had great hair up until the last couple of months. What to do? I have heard that Rogaine shouldn’t be used at my age! Just wondering if there is a better suggestion for treatment. It’s very frustrating at this point. Help,

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