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HELP WITH TERRIBLE HAIR LOSS

25047 profile image
48 Replies

HAVE ANY OF YOU HAD SUCCESS WITH STOPPING OR SLOWING DOWN HAIR LOSS. I HAVE LOST ABOUT 2/3 OF MY HAIR,

I AM ON LETROZOLE 2.5MG AND I-BRANCE 100MG 3WKS ON 1WK OFF, FOR THE PAST 8 MONTHS, MY ONCOLOGIST SUGGESTED CHANGING DRUGS, AND I SAID NO, DONT WANT TO ROCK THE BOAT

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48 Replies
2Hopeful profile image
2Hopeful

I am on the exact same dose as you are and I had a lot of hair loss after being on the drugs for about 7 months. I lost a good bit of hair for about 4 months and then it suddenly stopped and started new growth. I never lost so much that anyone but me would notice it but I got very concerned for a while. Hopefully your hair loss will stop on its own soon!

25047 profile image
25047 in reply to 2Hopeful

Thank you

Southside25 profile image
Southside25

Hate to be a killjoy, but I was on the same meds as you for four years and lost most of my thick, curly hair (which I hated all my life). Karma's a bitch! It stopped, but it was too late. I suggest you start looking for wigs. I have a couple synthetic, pre-styled wigs that cost less than $100 and are a piece of cake to maintain. Search online - Paula Young is a good source, but there are many online sources of reasonably-priced, attractive wigs. Fortunately I still have eyelashes and most of my eyebrows. With a good-looking wig and my regular makeup, I look like myself. If hair loss is your worst side effect, from what I've read, it could be worse (rashes, mouth sores...yikes!). Good luck.

Onedayatatime60 profile image
Onedayatatime60 in reply to Southside25

Hello Southside. I had never heard of Paula Young. Her site does look good and prices way cheaper. I paid $750 for mine in Canada and only $250 covered by my work benefit. Are they still decent quality , weave and hairline etc. I do not need one now - lots of hair since chemo finished 1 1/2 years ago. Just future tripping if I need to move onto something besides current regime. I follow a few people on Twitter who feature various wigs (they have alopecia for other reasons) but companies like Jon Reneau and Raquel Welch

Southside25 profile image
Southside25 in reply to Onedayatatime60

They are quite attractive and real looking. I get many compliments. Couldn't find anything that looks like my own hair, but got close in style and color so it wasn't like I'M WEARING A WIG!!!! Again, the pre-styled, synthetic wigs are great and soooooo easy to care for. You can style them a little with spray, fluff them up or smooth them down, whatever. On most, you cannot use heat implements, but they do have some synthetics you can style with a curling iron.

Other sites:

bestwigoutlet.com

wigs.com

You can go on Youtube and find videos of women trying on different brands of wigs. It's interesting. You can search online and see what you find. Or search by brand jon reneau or gabor or raquel welch. Amazon carries wigs, also. It took me a while and you're almost assured of having to send some back. I think I've paid between $50-100 each for the 3 wigs I have. It can be a process, but if you don't need one immediately, you have time to search. Good luck.

Onedayatatime60 profile image
Onedayatatime60 in reply to Southside25

Thanks for all the great info. Hope I don't for a long time. My first one was a synthetic and as you say easy to care for- but was a little frizzed at ends when I was done needing it

Southside25 profile image
Southside25 in reply to Onedayatatime60

Just remembered, you can look on shopping channels too, HSN, QVC and Shophq. They carry some wigs. Toni Brattin is another brand to look for.

Onedayatatime60 profile image
Onedayatatime60 in reply to Southside25

Sorry - a further question - do you know of other sites besides Paula Young with reasonably priced wigs?

Mumberly profile image
Mumberly in reply to Onedayatatime60

In Canada, the Canadian Cancer Society has a free wig program. Visit their website for details.

There may be a similar program in the cancer society’s in other countries.

Kim

Onedayatatime60 profile image
Onedayatatime60 in reply to Mumberly

Thanks - I knew there was various programs for those that cannot afford a wig,. I have the funds to buy one - would just like the option of a few if needed - like Moira Rose (if anyone watches Canadian show Schitts Creek) and would not spend $750 x 3 on them

daniellebrooks13 profile image
daniellebrooks13 in reply to Southside25

Southside25 do you still hate curly hair? Did you get curly hair wig? Lol

Southside25 profile image
Southside25 in reply to daniellebrooks13

What is that song lyric: you don't miss what you got till it's gone? I always got compliments on how pretty my hair was (sigh.....), but that's life!

Onedayatatime60 profile image
Onedayatatime60 in reply to Southside25

Yes, I always got compliments on how thick and nice my hair was. Losing it was not that traumatic for me - likely would have been worse if I was younger. I also was not going out much even after chemo due to COVID. When it first started coming in, it was white - like an Annie Lennox look. I didn't mind it but was not me so would not have left it like that

Onedayatatime60 profile image
Onedayatatime60 in reply to daniellebrooks13

My hair was always long and curly and when I was young I would wear it curly. As I got older I preferred it still long, but straighter and spent so much time blow drying. Post chemo I had crazy chemo curls. Those are growing out and hair ( I think ) seems to be coming in a bit straighter - still really thick. I have only had one cut since chemo in a salon specializing in curly hair and am going again in May. ( Have had colour done quite a few times) I do not want him to cut much now that I finally getting hair long enough to feel like it looks like it use to.

Onedayatatime60 profile image
Onedayatatime60 in reply to daniellebrooks13

My wig was similar to how I wore my hair - kind of flipped at ends, shoulder length. Looked similar to Jen Aniston "the Rachel" LOL. I also bought a halo wig ( I think that i what they are called ) that you wore with a hat. It was a short bob. Only $75.00 I wore it all the time - so much cooler., wore it in the winter with page boy style hats I bought at wig salon, in summer with a panama hat. I would even wear it to treatment or to the mall.

Discocat profile image
Discocat

I’m on same meds but Ibrance is 125mg dose. I have a lot of hair loss too. I’m not sure which med is to blame as the hormone therapy has put me into an induced menopause and hair thinning is a definite symptom there too.My skin texture has also changed and previous sun damage is now visible as “age spots”.

7 months in, I think hairs falling less and there’s more growth at the roots now. I cut it shorter from mid back length it’s now on my shoulders, this has helped it look fuller.

Good luck, it may all balance out.

Zoe x

Timtam56 profile image
Timtam56 in reply to Discocat

This gave me the giggles cause my hair was curly too. Now it's just frizzy, thin and straight. I also hated my hair most of my life.

Southside25 profile image
Southside25 in reply to Timtam56

That's interesting. What hair I have left is also frizzy and straight. Weird!

mariootsi profile image
mariootsi in reply to Discocat

Zoe, I have age spots too! Ugh!

Nocillo profile image
Nocillo

I started Ibrance last April and lost a ton of hair. About the last month or so the loss has practically stopped. Not nearly what it was. Maybe you’ll see a difference soon.

Melpub profile image
Melpub

I'm on Ibrance too, but they started me at 125 mg, and I was exhausted. I'm ok on 75 mg but my hair remains a frizzball--it was falling out more before I started taking capsules of a hair-and-nail vitamen combo called Trichosense. Contains various B-vitamins, Biotin, Zink, Niacin and a few other things--my oncologist recommends it. I think it has helped--have been on it over six months, at least. I'm also on Faslodex. Before I started taking this stuff my hair fell out much more. I don't know if this supplement is doing the trick or my body is finally settling down and used to the Ibrance, but I figure this stuff doesn't hurt.

Teddielottie profile image
Teddielottie

I have been on Ibrance 125 mg/ Letrozole for over four years and I did notice significant hair loss for the first 8 months . Now, tho ‘it has thinned , it is not as noticeable, however the texture has changed and I have to keep it short ( in a very short jaw length bob ) as the texture is very dry /prone to frizziness. I have always had fine hair . It does grow so I have the frizzy ends trimmed every two months . I also apply a smoothing balm to stop the flyaway hair ( or a light Moroccan oil ) . I limit hair drying to a minimum and use a Dyson supersonic hairdryer to give it a quick blast , without overdrying .

I still have some eyelashes so wear mascara when out and my eyebrows are very sparse and pale , so I use a good quality brush on eyebrow tint (Clinique Just Browsing brush -on styling mousse, light brown ), or I have had a temporary brow tint professionally at a salon for special occasions , which lasts around 3 weeks . I have lost all of my underarm and leg hair … but these are probably the only benefits?!

I am 58 and haven’t yet needed to buy a wig but would do so whenever needed . I have a good selection of caps! I haven’t taken any supplements...but do be careful if taking biotin as it affects the tumour marker results … can increase them ! (if you do take them stop them a few days before your monthly bloods draw ) .

The main positive here is I am over four years and two months on this combination and I have tolerated the numerous side effects , knowing that these 2 drugs only have kept me ‘stable’ and my QOL has been good so worth doing ! I wish you well too on this combination! x

morty87 profile image
morty87 in reply to Teddielottie

My hair thinned at first on this same combination of medications. I've always had a head full of hair. I noticed the thinning and perhaps my hair dresser noticed by no one else. I asked and received the Dyson hairdryer for Christmas in 2020 and it is wonderful. I was introduced to this dryer while on vacation in Hawaii. My hair has been a little coarse but managable. I wear a short pixie and I style my hair once a day without running my fingers through it. I think that makes a big difference. I also buy quality hair products.

Timtam56 profile image
Timtam56

Same. I think it may be best to just give in to it. There was nothing I tried that helped me and I was a hairdresser, and born to a hairdressing family. I know quite a bit about hair. And nothing seemed to work.

My scalp gets sore, and itchy and, my hair has hone ridiculously frizzy.I've given up.

Good luck though

mariootsi profile image
mariootsi in reply to Timtam56

Mine is frizzy too. Texture has changed, nothing helps.

PJBinMI profile image
PJBinMI

I'm a l o n g timer with E+ MBC and have been on estrogen controlling meds the whole 18 years since I was diagnosed. I've always had fine wavy hair with a big cow lick that I dislike alot. I don't remember exactly when my hair started to thin but it may have been a few years in. I bought wigs but have never worn them because my hairhasn't thinnined that much. Don't know if this is reassuring to anyone besides me, but around 8 years ago, I noticed that more and more women were out and about with major hair loss not covered up. To me that has meant that our culture has become much more "cancer friendly" with more openness. I really admire the women who do go out without head hair and with very little and I think that's what I will do if I have greater hair loss. The American Cancer Society, local cancer groups, and some cancer centers have donated wigs that they give to patients. I'm going to give mine to a local group that my hair stylist recommended to me.

Mumberly profile image
Mumberly in reply to PJBinMI

18 years!! Wow. That alone is a message of hope ♥️

I’m inspired

Kim

PJBinMI profile image
PJBinMI in reply to Mumberly

When I was first diagnosed, with bone mets from the get go, I never would have guessed I'd do so well for so long. About six months in, I attended a weekend BC retreat and met others with MBC for the first time and was so relieved to hear their stories. Since then, I've attended several BC and MBC conferences and met alot of women with over 10 years living with MBC. At the first one, there was a 30 year survivor! It would sure be helpful for newbies to hear about others doing well for years!

Brooks225 profile image
Brooks225 in reply to PJBinMI

Your story is so reassuring! My started really thinning 125 Ibrance & letrozole 1 year now. I just buzzed it and got a cute wig- no hair don’t care!

25047 profile image
25047 in reply to Brooks225

Honey, you ROCK!!❤️

Beryl71 profile image
Beryl71

I've been on ibrance 125mg and letrozole for 21 months. I thought I was losing hair to start with, seemed to be a lot on my hairbrush but fortunately noone else noticed. I started being very choosy about my hair care products and moved to bar products with natural ingredients. My hair is ok and better condition with these products. It had got brittle and dry. I haven't had the extremes you are experiencing. I wish you luck. I was all prepared to find a wig with my hairdressers' help. X

Kdiet profile image
Kdiet

I am on Letrozole 2.5mg and Ibrance 100mg. I just finished 27 months. I use minoxidil every day, the 5% solution. It has really helped. I also use a laser cap for five minutes a day. My hair is now thicker. I blow dry very little and use lots of creamy hair products including leave in conditioner. I like the Furterer hair product line but it is not cheap. I am 64 and I think some hair loss is related to age. My hair dresser says all of her clients complain about hair loss. She thinks it is a combination of getting older and Covid stress. My hair is no longer great but it is ok and I am just happy to be here!

Laskia profile image
Laskia in reply to Kdiet

I've just been to Amazon and ordered the Minoxidil. I ordered the liquid, although there was a foam available too. The women's version was only 2% so I went for the men's stuff.

I've not heard of a laser cap. Do you think that has helped too?

Mimiholl profile image
Mimiholl

My diagnosis 6 years ago was stage IV MBC I just passed a milestone of 5 years on Ibrance 125 and letrozole. After losing all my hair by the 2nd week of red devil chemo ( had26 weeks) a lumpectomy and 6 weeks of radiation , my usual very thick straight blonde hair came back as thin white slightly wavy hair. Unfortunately I have to wear it really short because it doesn’t really grow ( no offense but it looks like little old lady hair) I wore wigs when I was bald but for me uncomfortable. I use WOW products which help tame frizz . I have all the usual side effects and recently reduced to 100 Ibrance. But you know-what, these medications are doing their job and at least this little old lady is still here!I’m 71 a m other of 2 sons, 5 grandsons, 1 granddaughter and very lucky to be here. Thanks to Drs. And scientists for all their help.

Grateful,

Mimi

NPmary profile image
NPmary in reply to Mimiholl

Esophagus? Mimi, l am 71 too, and am grateful to be here (I have 2 children and 5 grand children). I tried a WOW hair product out suggested and really like it, thanks. Wishing the best to you and everyone on this site. Mary

PJBinMI profile image
PJBinMI in reply to Mimiholl

Getting five years from Letrozole is very promising and you may keep on doing really well for a long time. I got not quite five years fromit and then over 9 years from Letrozole,am at 18 years now, will be 76 next month and on Exeestane for over 4 years.

mariootsi profile image
mariootsi

Like you, my hair is thinning terribly on Ibrance but I get Faslodex shots too. My hairline is receeding. I wear head coverings.

Laskia profile image
Laskia

I'm on the same drugs as you and much to my dismay, my hair has thinned a similar amount too. It seems to have accelerated in the last month, although I've been on the medication for 8 months.

I noticed in particular, that it was thinning at the front - a receding hairline and temples. My oncologist explained that, due to oestrogen being blocked, the body is susceptible to the circulating androgens, such as testosterone. so, in effect, we are suffering from male pattern baldness.

I'm becoming increasingly depressed and paranoid about it. It is getting to the point where the shedding hair is clogging up the vacuum cleaner too.

I may try Minoxidil as Kdiet suggested in an earlier reply - I'll ask my oncologist about it.

in the meantime, I am trying a supplement called astaxanthin, which is supposed to block the effect of testosterone on the hair follicles. I've only taken two tablets so far, so its too early to say if it's working.

Totheriver profile image
Totheriver

I am also on the same drugs only my Ibrance is 75mg. I also lost a lot of hair. It was so depressing I buzzed it and now wear a really good wig and get lots of compliments on my hair lol. It was my way of dealing with it because my hair was noticeably thin.Theresa

Jhshl512 profile image
Jhshl512

I was on Ibrance for 6 months. I was very upset about losing my thick hair. My oncologist suggested that I go on biotin. I now take 5000mcg a day. I also per my hairdresser, use sulfate free shampoo and conditioner. Huge improvement. I only wash my hair every other day now. I’m in the US and there are many shampoos sold that are sulfate free. My favorite is called Biotin by Hask. It’s a thickening shampoo. I am now on capecitabine, which is an oral chemo and my hair still looks great. It has stopped falling out and is also growing back. Best of luck to you. Keep up the fight!!

Rubyjude profile image
Rubyjude

It seems that there is enormous variation in how each of us is affected with hair loss while on Ibrance and letrozole. I had no hair loss while on Letrozole for 8 years, but had really severe hair loss when I started Ibrance. I had to use wigs, and have my eyebrows tattooed after they too disappeared. One of the first signs that Ibrance had stopped working was that my hair started to grow back. I am now on Faslodex and my hair has started to regrow, albeit coming back as grey and stringy butI can deal with that through colouring, hair products and careful styling. To me, it was such a visible sign that my cancer had returned while I tried to keep that knowledge confined to just a few close friends. Good luck with all the suggestions that others on here have made.

cancersucks2 profile image
cancersucks2

Hi. Are you getting enough protein greens and fruit? Mine has slowed down since having protein smoothies with the same as above in them. They are delicious and satisfying .

Gingerann1 profile image
Gingerann1

Hey there…I’m in the same boat as you. I have been on Ibrance and Fulvestrant for 13 mos now, both cause hair loss. Half of mine is now gone. I have some new growth right at the front but short pieces and long pieces, it looks like I gave a 3 yr old a pair of scissors! I have just enough to pull back into a thin little braid in the back to make it ok enough to go out in public but I may look for a wig if things get much worse. If anyone else has any ideas or tricks, etc. please let us know. My Onc has only suggested Rogaine.

Laskia profile image
Laskia in reply to Gingerann1

I've lost so much of my hair. It's really noticeable now. I've looked into a few things that may help. Apparently, much of it is due to the effect of DHT (a form of testosterone) so anything that blocks its action, may hep. So far, I've found Saw Palmetto, astaxanthin and stinging nettles extract. I've ordered these supplements so fingers crossed!

I'm also going to try Rogaine as I really don't want to be wearing a wig in the summer months here.

I copied these notes which may help from a website:

1. Diet: Vegetables such as spinach, white mushroom, and kale are rich in zinc and contain phytosterol that is an effective DHT blocker. Similarly, tomatoes, watermelons, carrots, and mangoes are rich in lycopene, another effective DHT blocker.

2. Lifestyle changes: Lifestyle changes, such as exercising, helps reduce stress. Other lifestyle changes like quitting smoking and doing scalp exercises also help reduce DHT levels and reduce hair loss.

3. Herbal DHT blockers: Herbal DHT blockers are the safest way to block excessive DHT and reduce hair loss. Herbs such as stinging nettle, green tea, and rosemary have DHT blocking properties. Regularly applying oils made using DHT blocker herbs on the scalp can significantly benefit in reducing hair loss.

Discocat profile image
Discocat

I’ve just had a new salon conditioning treatment at my Toni & Guy hairdressers. Its called a “bonding restoring treatment”. It’s supposed to work on a molecular level to repair thin damaged hair by reinforcing the week areas. I had it applied while getting my roots done so the two worked at the same time.I have found it’s improved the fizziness and made the hair strands a little thicker. My hairdresser recommended doing this once a month when I get my colour done. It’s about 30€ extra. I’ve washed my hair today and I noticed it dried much flatter and less fly away than usual.

Gramat profile image
Gramat

Yes I did. I have been taking Ibrance for 2 years now and my very thick long hair is no more. Still have hair but not the same. Texture horrible and dry. I have not needed a wig. All the best to you. Probably what I hate most of this treatment.

mou466 profile image
mou466

Hi,

So sorry to hear that you are experiencing terrible hair loss! I’m on the same medication for a year now and hair loss is affecting me too. It’s so scary! I’m a teacher and can’t imagine not having hair. I take Biotin and recently started to put a few drops of peppermint essential oil in my conditioner. I think it is starting to slow down my hair loss. Well at least it can’t do any harm. My recent scans are clear so upwards and onwards with the treatment. All the best to you! Keep going, you’ve got this!!

Kdiet profile image
Kdiet

The minoxidil really works. At first you may lose a few hairs as it accelerates the natural hair shed and grow cycle. But hang in there. Do it everyday except the day before and day of hair coloring. It is a chore but after three months, I think you will be pleased. And, I like things that are not ingestible. The laser cap is new to me so not sure if it will help. Good luck.

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