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Hair loss

Annadm profile image
62 Replies

Hello Sisters 💞

Have any of you lost a lot of hair and had hair thinning on Ibrance and Letrozole? When does it stop falling out?

Peace to you all ✌️

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Annadm profile image
Annadm
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62 Replies

I take 100mg Ibrance and have experienced hair loss. I had ready thick hair and I have probably 1/3 left. I've been taking biotin and a multi vitamin (check with your doctor) and using Aphogee protein shampoo/conditioner once a week and Redken All Soft shampoo/conditioner twice a week and their deep conditioner once a week. Then on days I don't wash my hair (it still gets wet when I shower) I spray in Biolage leave in conditioner or Redken Anti-snap. Wow, that's a lot. I've kept the length shorter with layers and that makes it not look so bad. I had it cut and colored yesterday and she said it's definitely growing back. She also told me to run my fingers thru my scalp to stimulate it so it releases natural oils. I dont blow-dry it or use clips unless I'm going anywhere. I found small combs to pull my hair back and those have been the best. I also bought a satin like pillowcase to sleep on. My hair stylist says the key is keeping moisture in your hair and scalp. I don't know if this helps or not but thought I'd share.

Annadm profile image
Annadm in reply to

Thank you. It’s growing back and yet you’re still on Ibrance?

in reply toAnnadm

I am. I've been on it for 4 cycles now. I don't know how much will grow back or if it will be as thick as it was but I'll take whatever I get. The strangest part of it all is that it's growing back with some curl and the color is more of a darker grey than the white grey I had. Thank goodness for hair color.

Annadm profile image
Annadm in reply to

Thanks for the advice 🥰

Iwasborntodothis profile image
Iwasborntodothis

I have always had a ton of hair and it is thinning I am on cycle 10 but my hairstylist says my hair is now just like "normal" people I also take Biotin and I bought some hair thinning shampoo/conditioner that help with the texture. It has become dry and wire like. I am also keeping it short and layered and no one but me (and the strainer in the tub) has noticed. There are days when my head hurts as if I have had my hair up in a ponytail all day.

Annadm profile image
Annadm in reply toIwasborntodothis

Yes!!!! I have that pain too. And my hair never looks oily anymore.

loopydo15 profile image
loopydo15

I'm on the higher dose of Ibrance and am in cycle 6. I had very thick hair to start with...also had lost all hair once with chemo a few years ago. My hair comes out in handfulls!!! But it seems to be a little less lately. Perhaps wishful thinking! I just feel blessed that I don't have to go to work and try to cover up the balding spots in the back of my head!!! My solution to those balding spots......just quit looking in the mirror at them!!!! Seems to be working!

Annadm profile image
Annadm in reply toloopydo15

Funny my niece told me the same thing.... stop looking in the mirror lol

Barbteeth profile image
Barbteeth

Mine thinned on Ibrance 100 mg so I had extensions put in and dyed it...I like my long hair!

Not on Ibrance any more now

I notice ladies are taking Biotin ...just beware it can affect tumour markers...I made that mistake and my oncologist investigated and sure enough Biotin can raise your markers

Barb xx

Iwasborntodothis profile image
Iwasborntodothis in reply toBarbteeth

Really? They told me to take it and then act confused when my markers rise. I will mention this at my next appointment - thanks!

Halfpint2 profile image
Halfpint2 in reply toBarbteeth

Why are no longer on Ibrance if you don’t mind me asking.

Barbteeth profile image
Barbteeth in reply toHalfpint2

Hi there

Unfortunately it stopped working after approximately 16 months...I tried Afinitor and exemastane which also failed....now I’m having faslodex injections only

I don’t mind you asking at all...we need to share our experiences good or bad

All the best to you

Barb xx

Halfpint2 profile image
Halfpint2 in reply toBarbteeth

Thank you. I’m the only one in my little Mets group that hasn’t had to change like you have. I hope this formula works a long long time for you. Did changing drugs stop your hair loss?

Barbteeth profile image
Barbteeth in reply toHalfpint2

Well I didn’t have much hair loss but because it’s so fine it looked worse hence the extensions

Faslodex doesn’t cause hair loss so i needn’t worry about that thank goodness...life is bad enough with this disease....I refused chemo after my second line of therapy failed...I’m absolutely scared of it and will try anything else before I subject myself to that

Barb xx

Annadm profile image
Annadm in reply toBarbteeth

I’m having extensions put in tomorrow Barb. Can’t wait 😊

Annadm profile image
Annadm in reply toBarbteeth

Thanks Barb. I won’t be taking any Biotin. 🥰

Onie54 profile image
Onie54

Peace to you as well 😊

I’ve been on Ibrance 100mg and Letrozole for 2 years now. Hair has definitely thinned out! Probably by more than half but that’s it. It hasn’t gotten any worse. I don’t colour it anymore but just use a purple shampoo since it’s quite grey/white. The colour has nothing to do with the Ibrance or letrozole, I started going grey when I was 25! I do find it is dryer than it used to be but then I can wash it every other day which is good too!

Keep strong and healthy everyone!

It's weird on my color. It's been "white" too since I was in my early 20's. I'm now 54 and the new growth is coming in as more of a brownish grey. Strange but I'm not complaining.

Nmartinez15 profile image
Nmartinez15 in reply to

My hair is getting more gray!

Annadm profile image
Annadm in reply toNmartinez15

Really? Wow 😳

I had considerable hair thinning after about 8 months on Ibrance and then it started to grow back . But I would have to say my hair texture has changed and is a frizzy and dry . I had it cut short hoping to get it healthy again . So far it has not worked . But a straightening iron occasionally and not washing as often helps it .

Annadm profile image
Annadm in reply to

Thank you 😊

MyMiracle13 profile image
MyMiracle13

I believe it’s more the Letrozole than Ibrance that’s the culprit (at least in my case.) I’ve been on Ibrance/Fulvestrant since July 2018 and although I experienced hair loss in the beginning, the hair loss stopped after about 3 months or so. Due to this COVID crisis, I couldn’t get to my hospital for my Fulvestrant shots so my oncologist put me on Letrozole instead. Immediately, I started to lose more hair. I’ve been on Letrozole since April 14, 2020 and still the hair loss continues😢

Beryl71 profile image
Beryl71

I'm on second month and haven't noticed anything yet. Keeping my fingers crossed. 26 years ago when I had 6 months of chemo infusions I didn't lose any hair. I understood it was better to avoid hair colour and harsh chemicals so am continuing to condition well and eat healthily.

Annadm profile image
Annadm in reply toBeryl71

Wow! Lucky you

AnnaP668 profile image
AnnaP668

Yes, I have hair thinning with Ibrance but I got Nixoral shampoo and conditioner and it seems to help. It is expensive though. But you're worth it!

Annadm profile image
Annadm in reply toAnnaP668

Yes, I ordered it today in amazon

Nmartinez15 profile image
Nmartinez15

Me, you need to take vitamin supplements! Also when my vitamin D is low due to xgeva I start lost alot hair. So the doctor increase to 50k a week and the hair lost stop.

Rotagirl profile image
Rotagirl

Hi, I have been on Ibrance and letrozole for 22 months. After around 3 months I found my hair was getting much thinner.there are 2 or 3 areas where I am almost bald! I did not have very thick hair anyway so now I look 103, I am in fact 79, so I wear a wig most of the time. I HATE having to do so but I suppose I am vain! It is a very good wig, it looks v natural. I got it from Preloved wigs. This is a charity in the UK where wigs are donated, cleaned and sold around the country. Mine was £20. Hope that is some help, Fay

Chico64 profile image
Chico64

I lost most of my hair from my chemo treatment ..and it hasn't changed..so I'm not sure..just know I have no hair growth..

Annadm profile image
Annadm in reply toChico64

Sorry to hear this 😞

Sunny2020 profile image
Sunny2020

I've been on it about a year. When I first started taking the pills, a lot of my hair.had previously fell out from CHeMO. BUT while on Ibrance and Letrozole it GREW back in nicely, darker and curly at first. Now after a year, it seems to be losing the curl, and more like my normal texture was. I have noticed very slight shedding -but I think that is more of just my normal texture returning.

Annadm profile image
Annadm in reply toSunny2020

I guess it’s normal then. It just freaks me out because I had so much hair

hdhonda profile image
hdhonda

Smurf,

I've been on Ibrance over three years and have hair thinning off and on. It is thinning now. I haven't had a haircut since Feb. because of covid-19 and don't know when it will be safe to get one - probably not until a vaccine is available. It is a mess. I need to go get a moisturizing treatment. I am afraid of beauty shops because of the close contact. Blessings, Hannah

Wildcat1 profile image
Wildcat1

I use Nioxin #3 shampoo and condition along with a nioxin leave spray. This has help my hair tremendously. My hair was pretty much like feathers and now it has thickened up. I was buying it at my hair salon which is over $45 but I can get the same 3 through Walmart online for $27.

Annadm profile image
Annadm in reply toWildcat1

Try Amazon... even cheaper. Thank you sister 🙏

morty87 profile image
morty87

Mine thinned at first, but it has subsided. I make a point to keep my fingers out of my hair and I use higher end shampoo. My stylist can hardly notice the thinning at this point.

Annadm profile image
Annadm in reply tomorty87

Really? That’s fantastic. I ordered the Nioxin and I’ll see how that goes

mariootsi profile image
mariootsi

I am having terrible hair thinning on Ibrance and faslodex. It doesn't seem to be stopping. Don't know if it will stop on your meds, but it hasn't stopped on mine!

Looks terrible!

Yes, I have more hair loss in the last 3 months. I am on my 15th round of IBrance & Faslodex. I use Biotin shampoo & conditioner but lately that does not seem to be working. I guess I’ll have to cut it shorter or get extensions. I don’t have the patience to sit at a salon to get extensions. I don’t really want to go back to my wigs. I’m open for suggestions too.

❤️🙏❤️

Barbteeth profile image
Barbteeth in reply tohopenowandtomorrow

It only takes an hour to get hair extensions done...easy peasy

I have the ones called ‘great lengths’ last about four months then start occasionally coming out

The ones I’ve had in now have been in six months due to Covid but still look good

Go for it

Barb xx

Annadm profile image
Annadm in reply toBarbteeth

I agree Barb xxx

Annadm profile image
Annadm in reply tohopenowandtomorrow

I’d get the extensions in. I’m doing it tomorrow. A wig is out if the question.... never again! I’d rather walk around bald

hopenowandtomorrow profile image
hopenowandtomorrow in reply toAnnadm

Hi Smurf1211: Please send us a before & after picture of your extensions 😎

SeattleMom profile image
SeattleMom

Yes! I srarted on Ibrance/Letrozole in November 2017. My hair has definitely thinned but its loss seemed to decrease over time.

Supplements of biotin will supposedly help, but I haven’t taken those in a long time now.

Good luck and God bless you!

Linda 💗💗

Annadm profile image
Annadm in reply toSeattleMom

Thank you Linda 🙏

viennagirl profile image
viennagirl

Hi Smurf.

I just talked to my Oncologist Dr. B. about my scan results. The good news is that I am staying much the same and in some areas improving a wee bit. However, my calcium level in my blood has gone up a bit and she said that can be serious if it continues to climb. She wants me to take those medications that strengthen bones but have possible side effects - of necrosis of the jaw. It is where the bone rots away in the jaw. So far I refuse those drugs. The odds of that necrosis happening are one in one hundred. That terrifies me but she said I would have to do it if I didn't want to die from a calcium overdose. But I won't panic yet because the calcium level is not seriously high yet.

You asked me about hair loss. And you question has come at a good time because today I asked her about hair loss because I seem to be losing quite a bit of hair lately. She said that yes there is hair loss on the Ibrance Letrozole combination. So that is obviously why I am losing hair. I didn't ask her if it ever stops but my other Oncologist told me that I wouldn't lose all my hair. I have been treated by three oncologist. So it gets a bit confusing because they don't all tell me the same things. My main Oncologist Dr. B. always comes up with scary scenarios and she is the one who said "yes, there is hair loss on the Letrozole Ibrance combo". And she is the one that said my calcium was slightly elevated. I wonder if anyone else has experienced the rise in calcium levels.

Take Care and I wish you well in journey of healing. Hugs Marlene

Remyan profile image
Remyan in reply toviennagirl

After my oncologist saw from pet scan results that I had a lytic lesion in my spine she wanted me to go on Xgeva. My first calcium test was in January at 10.2

In April it went to 10.9 but then went down and last one this month was 10.3

She has started to do the corrected serum calcium test was was 9.3 within normal range.

Like you, I have also refused to take Xgeva because of the ONJ and other fracture side effects. We have to decide what is best for our own bodies.

My hair has gotten a lot thinner on the Ibrance and Letrozole. It does fall out but that is the the least of my worries. It just looks fluffy.

As the saying goes " Don't sweat the small stuff."

God bless you and stay strong.

viennagirl profile image
viennagirl in reply toRemyan

Hi Remyan.

Thank you so much for the response to my calcium concerns and my hair loss. I guess I should not worry about my hair. I sure appreciate it when you tell me that you also refuse that bone strengthening drug. That makes me feel so much better about refusing. Now I don't feel so alone in my decision. My hair will be cut short next week so I think that will help me feel better about it thinning. I will get in touch with my Oncologist's nurse and ask for the information about my calcium level. I didn't write down the number but I think the nurse should be able to give me that information. I want to compare it to your levels. thank you again. Hugs Marlene

Remyan profile image
Remyan in reply toviennagirl

Dear Marlene,

You should always have access to all of your test results as soon as they are available and can discuss any concerns with your oncologist.

The lab results show what are normal ranges so that you can see where you stand and compare any changes or trends over time. Think positively and find something beautiful every day. You are not alone and you will not be overcome.

God bless you always.

Halfpint2 profile image
Halfpint2

I’ve been on both since 2016. I have 1/3 of the hair that I used to have. I just keep my hair very short to avoid the frustration of what I used to have. I’m living well so I try not to put much focus on my hair but it’s hard not to.

Annadm profile image
Annadm in reply toHalfpint2

Yes it ya very hard

Mimigram profile image
Mimigram

I was on Letrozole and Ibrance for a year and my hair definitely thinned and did not appear to stop no matter what I did. I only washed it once a week with a good quality shampoo and hydration conditioner. I used a wide tooth comb and no hair dryer. Rolled my hair if I wanted it curly. I found wigs to be a great option.

My doctor said I could stop Ibrance as I was NED with good markers. I continued letrozole and my hair grew right back. Ibrance is a good if it works for you but it does have side effects.

Mimi

Annadm profile image
Annadm in reply toMimigram

You were NED after just one year? That’s amazing! God bless! You had Mets where if I may ask.

Mimigram profile image
Mimigram in reply toAnnadm

I was stage III BC in 2003 and had a mastectomy on left side with chemo, radiation & Arimidex for 5 years. Then it came back 13 years later 2018 in my ovary & fallopian tube. Both were removed surgically. I started Ibrance & Letrozole. I read How to Starve Cancer by Jane McLelland and followed her advice. She has a large following on Facebook. I take a lot of supplements plus other added RX drugs. My Dr said I could stop Ibrance if I wanted and if markers or PET scan showed progression I could start up again. I opted to stop. So far I am good. I also had a Biocept test done which showed at the time no circulating cancer cells in my body. My Lobular BC is slow growing so have to keep a constant eye on things.

Hang in there.

Mimi

Barbteeth profile image
Barbteeth in reply toMimigram

My oncologist told me I couldn’t ever restart Ibrance although it didn’t fail you as you chose to stop it

Also I’m wondering like Sandra if you’re considered stage 4 as your mets have been removed?

All the best

Barb xx

Mimigram profile image
Mimigram in reply toBarbteeth

True it did not fail me so I still have the option to restart in the future. I pray not though. I am considered Stage IV as my original BC metastasized to my ovary even though they removed it. My MBC is Invasive Lobular Carcinoma.

Mimi

Annadm profile image
Annadm

Yes it’s definitely dryer. I never feel my hair oily like before

Annadm profile image
Annadm

Thank you Sandra xxx

Teddielottie profile image
Teddielottie

Just catching up on here and I hope your hair extensions look fab tomorrow ! I know Barb loves hers !

I have been on ibrance / Letrozole for 32 cycles and I did experience hair thinning in months 2-8 , but it appears to have settled now . I haven’t taken any supplements for it , but I am vegetarian .

I have always had fine hair , just below the shoulder , but had it cut much shorter ( now a jaw length layered bob ) when it began to thin . It does make it look fuller , along with my blonde foil highlights , which give it depth . I wash my hair every other day for body / shaping . I was treated to a Dyson supersonic hairdryer for my birthday and I love it ... an expensive purchase , but it no longer overdries my hair ( a microprocessor keeps the temperature under control and prevents extreme heat damage ) and I can style it in 5 mins ! I also use a smoothing balm to protect my hair ( Joico K-Pak style smoothing balm , which I buy on Amazon ) as the texture is dry and flyaway otherwise , and I find a tiny amount

seems to do the trick !

I hope you find what works for you , lots of ideas from the ladies on here ... hairstyles , extensions , wigs and products . x

Mimigram profile image
Mimigram

Yes I am stage lV

Gorden profile image
Gorden

Never.

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