Anyone *not* lose hair while on Ibrance? - SHARE Metastatic ...

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Anyone *not* lose hair while on Ibrance?

Verbena1 profile image
35 Replies

Hi, after waiting a year for my hair to grow back, it finally has started to. I’ve got about 3 inches of new growth, and it’s much thicker (and wilder) than before half of it fell out, but I’ll take it!

I had low WBC when I began the last round of new treatments, so my doctor took me off 125 Ibrance (I was only on it for a short time).

Months later, he wants me back on the lower 100 mg dose of Ibrance. I really don’t have enough experience with it to know if my hair will fall out on this drug. Anyone on 100mg and your hair didn’t fall out or get thinner?

Ugh to think I was so close, and may lose it again! This time if it comes out I’m shaving it off and getting a nice wig.

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Verbena1 profile image
Verbena1
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35 Replies
Merma profile image
Merma

Hi Verbena1,On the 125 dose, I had a little bit of hair fall out, but not at all on the 100 mg. I ended up growing my hair to shoulder length and getting a straightening perm because my hair wouldn’t stay put.

Verbena1 profile image
Verbena1 in reply toMerma

Very heartening to hear, thank you - hope this happens with me!

stardust1965 profile image
stardust1965

I was diagnosed de novo and first line of treatment was Ibrance and Letrozole. I was also diagnosed with thyroid cancer at the same time so not sure what meds were the culprit. My hair thinned by about a third and went crazy-lady on me. So I stopped having it coloured and had it cut to just above my shoulders.It is now back as thick as it ever was and manageable with good hair products. I was on Ibrance for about 30 months until July.

Don’t be tempted to shave prematurely. Good luck.

Vicki

Verbena1 profile image
Verbena1 in reply tostardust1965

Thanks for letting me know, I will hold off on shaving it in that case!

Thriver49 profile image
Thriver49 in reply tostardust1965

What hair products are you using now??

stardust1965 profile image
stardust1965 in reply toThriver49

I use Kérastase, Bain Satin 2 Exceptional Nutrition shampoo for dry hair (copying from the label) and the same conditioner. I also use Kéraste Discipline, Keratine thermique smoothing taming milk, blow dry for unruly hair (again copying from the label).

I stopped having my hair coloured but the grey is fine with my skin tone. I think that helped the condition of my hair.

I am happy my hair is in good condition but it seems to be the luck of the draw, so to speak. Looks like radiotherapy will be likely after my surgery so I’m enjoying the “great hair days” while I can. I hope you start to see an improvement. It can initially be the one really obvious thing between looking like a cancer patient and not!!

debbiedo2063 profile image
debbiedo2063

HiI’ve been on Ibrance 125 since Dec 2020. Haven’t noticed much hair loss at all , had my hair cut layered in a Bob at the start of treatment and colour my hair every 8 weeks on my week off Ibrance plus wash it every day in the shower. I think the style helps a lot if it did come out, I never use heated appliances but never did before breast cancer, I just leave it to dry.My hairdresser says it feels the same as before ibrance. Fingers Xd I’m lucky but not going to be too complacent.

Debra xxx

Verbena1 profile image
Verbena1 in reply todebbiedo2063

That’s good to know…it sounds like the dosage even at 125 didn’t affect your hair. I wasn’t on that dosage long enough to see if it made it thinner but I’m happy yours didn’t!

morty87 profile image
morty87

Your hair may thin but likely you will not lose it. I noticed the hair thinning when no one else did. I've been on Ibrance and Letrozole since January 2018 and I have had fantastic results. I am on 100 mg. Good luck and God bless.

Verbena1 profile image
Verbena1 in reply tomorty87

I hope you’re right, thanks for your input~

Adele_Julia profile image
Adele_Julia

Greetings! I’ve been on Ibrance since Nov 2020 and have had no hair thinning on fall out which I am thrilled about considering I lost my hair while on chemo in 2019. I think it’s individual as I too was terrified of losing my hair a second time. Blessings!

Verbena1 profile image
Verbena1 in reply toAdele_Julia

Excellent news, glad to hear you kept it!

I have been on 75 MG Ibrance since June 2018 and gave not lost my hair. Maybe a little thinner.

Verbena1 profile image
Verbena1 in reply to

That’s great to hear!

marianne88 profile image
marianne88 in reply to

Wow 2018!!! I have been on it since fall of 2017 and I’m starting to get nervous it might stop working.

Gwennie123 profile image
Gwennie123

My hair thinned a bit on Ibrance but didn’t all fall out . That happened with carbo taxol.It was coming out in handfuls so I had it all shaved off. I’m on xeloda now and it’s growing back.

Verbena1 profile image
Verbena1 in reply toGwennie123

Happy to hear, it sounds like Ibrance doesn’t always make our hair fall out - glad yours is growing back too!

Aquadog profile image
Aquadog

Good morning! I've been on Ibrance since February 2017 (on 100mg after being on 125mg for five months) and did have thinning hair, but it has grown back the same as it ever was. For several months I wore a topper to cover the thin spots, but I haven't worn it in over two years. Some of us have no loss at all - maybe you'll be one of those!

Verbena1 profile image
Verbena1 in reply toAquadog

I love it! Glad for you and hoping I follow on that same track~

Elle713 profile image
Elle713 in reply toAquadog

Just curious Awuadog. What made them lower your Ibrance dosage. I used to beg my inc to lower it - but she wouldn’t if my counts were ok.

Aquadog profile image
Aquadog in reply toElle713

It was my neutrophils - they were always low and they still are. My doc changed my dosage to 75mg a year ago and sometimes I still have to wait two weeks to restart Ibrance. He did hint at changing drugs, but I'd hate to since I've had such great luck with Ibrance.

My hair went from straight to wild and curly after a year on Ibrance. 8 have had to have it cut very short just to control it, so hopefully yo7 won’t have any worries about losing it.Clare

Verbena1 profile image
Verbena1 in reply to

That’s funny, mine went wild and beyond curly also…but I’ll take that over hair loss any day

SMPG profile image
SMPG

Hi! It is good that your hair is growing thicker now. My hair has not changed much on Ibrance. But I take the lowest dose, 75 mg. That is because it was my idea to start slowly. And now my oncologist says I should stay on 75 mg because it is working. For now. Keep your fingers crossed!

Verbena1 profile image
Verbena1 in reply toSMPG

Happy to hear it’s working! I asked for 75mg but was told it wasn’t therapeutic enough, now I’m wondering about that~

marianne88 profile image
marianne88 in reply toSMPG

How long have you been on it

SMPG profile image
SMPG in reply tomarianne88

Since March 2020

I lost very little hair. Just a very small patch. It doesn’t show at all. Hope this helps.

Verbena1 profile image
Verbena1 in reply to

definitely helps, I had no idea - I thought everyone was losing hair on it!

in reply toVerbena1

No, ladies at my hospital have their hair. Just wash it gently in maybe baby shampoo and use a conditioner. My hair has gone slightly curly. I don’t mind that but I keep it short anyway. X

Teddielottie profile image
Teddielottie

My fine straight hair has thinned , and my hairline at the front and sides is higher , (particularly in the first eight months). I have been on 125mg Ibrance for nearly 4 years , in December, but I still have hair .The texture has changed to a much drier /course texture , and is wavy (particularly at the back). I have it cut into a very short bob. My hairdresser said that the wavy texture gives added body to my short bob and I have blonde (foil) highlights every few months . I only do a quick 5 minute blast with my Dyson supersonic hairdryer and use a smoothing balm to control any flyaway hair . I hope this helps! x

Verbena1 profile image
Verbena1 in reply toTeddielottie

very helpful! I might consider a bob at some point too…the dry course and for me frizzy hair is another issue that I don’t have a lot of experience with yet.

KimberlyB40 profile image
KimberlyB40

Hi! I've just started my 13th cycle of Ibramce and have luckily not experienced hair loss or any other symptoms than fatigue and low wbc

SMPG profile image
SMPG

I have always been on Ibrance 75 (the lowest). It seems to work fine as it is. My hair did not fall. It got a bit thinner but not noticeably so. Good luck!

Thriver49 profile image
Thriver49

I have thinned out alot on sides and top on Ibrance 125 mg. Stop using any heat on hair (flat iron) and wearing it curly again. I always did Keratin as I loved my hair straight but as of now I cant do anymore. Doctor has spoken on putting me on 100 mg have to see. I want my hair to grow back but I know it is important to be on these meds.

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