Hair thinning or Hair loss - SHARE Metastatic ...

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Hair thinning or Hair loss

Itisfinished profile image
41 Replies

Hello Everyone,

I am new to the group and I am so thankful I found it! I was diagnosed on May 13 2019 with stage 4 bc with bone mets. For 8 months after my diagnosis my treatment was a high alkaline diet and Hoxsey. It worked in shrinking tumors in my breast which they did not want to remove however it did not stop the bone mets. So July 31st 2020 I was rushed to Chapel Hill hospital basically bent over in horrible pain unable to walk. Well scans revealed a tumor pressing on 2 vertebrates which was causing pain and possible paralysis. So I had surgery to remove tumor and repaired the vertebrae s. My bones were to weak for rods so I have to wear a brace at all times except when laying down. The oncologist started the Letrozole and Ibrance. I do have side effects. They had to lower my mg to 75 due to low WBC and neutrophils. I was wondering if anyone had lost all their hair from meds? I am having alot of hair thinning. I am about to start my 3 cycle.

41 Replies
Betbop profile image
Betbop

I've been on 125 mg of Ibrance and Faslodex injections for over 3yrs and my hair continues to get thinner every day luckily it was very thick in the beginning. Best wishes to you.

Hi Thedex259 -

Welcome to the group, I think you'll find it a great source of info and support... :)

I'm sorry what you've gone through with the pain, surgery, and ongoing issues....

To your question, my hair has thinned alot - I'd estimate that I have about half of the number of hairs (not that I count them!) that I used to, but the thinning is consistent throughout so I just have thin (and kind of weird..) hair. If I get a good cut, pixie-ish, it looks fine...

My hair doesn't bother me too much, but I know some women on the board have been very happy with hair extensions or wigs.

*I'm intrigued by the Hoxsey protocol, I'd not heard of that before, just searched it. I'm wondering how you landed on that, e.g. do you know someone who had success with it? If you look around the board, you'll see that alot of us are doing things with diet, exercise, etc., etc, to try to help fight this disease. I'm not advocating for this, but you might be interested the read about the COC protocol, in which several drugs are given "off label" (e.g. an anti-biotic, statin, anti-parasitical...) that several members are on, in addition to their conventional treatment. I myself am considering this but, again, not advocating for or against. You could enter COC into the search bar, upper right, to learn more, if you're interested.

I'm hoping you have many good years on the Letrozole+Ibrance. I remained on that treatment for almost four years, had very few issues (modest fatigue and some joint pain), then after very modest progression (a couple of new bone mets) changed to Faslodex+Ibrance over two years ago. For most of us these treatments are pretty easy (considering how hard they work..) and we are able to carry on almost as normal...but, admittedly, with "bad hair" :) .

Again, welcome, and I'm wishing you the very best,

Lynn

Itisfinished profile image
Itisfinished in reply to

LynnFish I have ordered all the COC protocol meds however have not started it due to what happened with surgery. The Hoxsey is really a great protocol however you have travel to Mexico but I would say it's worth it. I had a close friend who had several bottles that he gave me. A high alkaline diet is very beneficial for fighting this disease. I had gotten off of it while I was in the hospital and have been pretty weak since released from the hospital but I have all intentions of starting back as I get my strength back and I am able to grocery shop and prep my foods. I am so glad I found this site. I know God led me here 😁🙏

Teddielottie profile image
Teddielottie in reply to

Hi Lynn ! I too had never heard of Hoxsey therapy before , so googled the Memorial Sloan Kettering site. It states:-

“The American Cancer Society strongly urges cancer patients not to use the Hoxsey treatment .”

Here’s the link for the Memorial Sloan site for anyone wanting to know more about it . Just put Hoxsey into the search bar (or anything you wish to search on this reputable site):-

mskcc.org Hoxsey Herbal Therapy

Take care x

TammyCross profile image
TammyCross in reply to Teddielottie

Thank you.

USIrishcolleen profile image
USIrishcolleen

Thedex259,

Hello and welcome. I am sorry about your current health situation.

I had 10 cycles of 125 mg Ibrance and anastrozole. Just recently I have noticed the my hair is coming out in the comb, when it is wet and I comb it. Also, the hairs themselves are VERY fine. I am off of the meds now to get my wbc up for surgery on 12/4.

I hope this helps.

Best,

Colleen

SusieIM profile image
SusieIM

Oh I feel for you, had a similar experience. They did a similar thing with me but did put the rods in my back. I was diagnosed in about 2018, been on several treatments. I definitely have thinning hair. I wish I could give advise on what to do with thinning hair, I use good quality shampoo. I hope others can give advise on this. Keep us posted on how you are doing 🤗

Beryl71 profile image
Beryl71

I am on Ibrance 125 and letrozole. I think my hair is thinner but others say they can't see. I am now using environmentally safe shampoos, and no longer have my hair coloured.

I was in agony with bone pain before I started this regime but am pain free other than morning stiffness now.

Good luck with your treatment. X

queeneee profile image
queeneee

Hello, my hair thinned on faslodex for the the first 4 months, then slowed. I also put a drop of argon oil on my hands and rub it into the ends (leave in) it makes the shine come back. This was a tip I got from another place on this site. It works. I have grown my hair, tie it back and wash it less too.. helps keep the pressure off.

Hi,

Welcome to this site, although I know the other ladies will echo my thoughts that this is a club we wish we did not belong to. But it has helped bring together a group of women who are going through the same thing. You can come here at any time and there will always be someone on board to listen or answer your question, as we are from all over the world. I'm from the UK.

I hope you will soon recover from the surgery and that your bones will gradually heal. Have you been advised to take any supplements to help strengthen your bones? My oncologist put me on Adcal D3 (calcium carbonate and vitamin D3) after I was diagnosed and I also take a vitamin D+K2 spray twice a day. Then every 12 weeks I have zometa infusions. I hope you have something as part of your protocol to help with your bone strength as you do not want to be dealing with any more fractures. With regards to alternative therapies, I am on the COC protocol, but I also take other off-label drugs and supplements. So I have taken an integrative approach, to include conventional treatment (letrozole, zoladex and zometa) and alternative therapies and treatments.

I wish you well and please feel free to reach out to me if you want to talk.

Take care,

Sophie

Gatsby1 profile image
Gatsby1

Hi, Sorry to hear about everything you’re going through. It’s pretty rubbish isn’t it? I’ve been on Letrozole and Ibrance since January and still have my hair. It’s certainly thinned and not as full but it’s still there. Don’t have bald patches or anything yet so it’s really only me and my hairdresser who’s noticing. I think the side effects vary month to month. At the moment I’m really tired and struggle to get out of bed but on the whole I’m doing well as I’m still working. Hope this helps.

Totheriver profile image
Totheriver

I was diagnosed the same time as you with Mets in my spine. Started highest does of ibrance and letrozole. I also have a zometa infusion every 3 months for bone strengthening. By Nov. went on lowest dose iPod ibrance which I am barely tolerating. Had considerable hair thinning and am now wearing a wig for my own self image. Hope things go well for you. Feel free to message me anytime.

Theresa

Julie2233 profile image
Julie2233

Whilst on faslodex and ibrance (125) my hair thinned and receded around the temples but it was easy to hide with my hair style and when I came off that combination the hair came back immediately. I was on faslodex and ibrance for 18 months. And I used a caffein shampoo.

SeattleMom profile image
SeattleMom

Hello,

I am stunned that you weren’t immediately prescribed the Ibrance and Letrozole! This combo is highly effective for bone mets and is typically the FIRST LINE of treatment.

That being said, the hair does thin but is not totally lost. It slows down after several months. Are there any plans for radiation therapy? I am so sorry for how this terrible disease has affected your life and pray that your new meds will erase the tumors. Be sure to take plenty of VITAMIN D!! You are in my heart and prayers.

Linda

💗💗🙏🏻🙏🏻

in reply to SeattleMom

Hi Linda,

The ibrance/letrozole combination was not offered to me. I was put on letrozole, zoladex and zometa as my first line treatment in May 2018, which I am still on. So it isn't an option for everyone.

Sophie

SeattleMom profile image
SeattleMom in reply to

Very true. I forget to keep in mind how unique each patient is and how individuals respond differently. 💗💗

in reply to SeattleMom

Hi Linda,

I suppose I’m fortunate that I have responded so well without the addition of ibrance. But for a long time I felt like I had missed the boat and would fare badly without it.

Sophie

SeattleMom profile image
SeattleMom in reply to

You’re blessed! 🙏🏻🙏🏻💗💗

in reply to SeattleMom

Thank you, Linda.

ChrisVict profile image
ChrisVict

Hi, I’m really sorry for you having to have spine surgery. I go to MSK and they offer integrative Medicine but only in addition to the meds.

When I was first diagnosed I had surgery to right breast only had 2 rounds of chemo infusion refused the other 2. I stayed on anastrazole and then found bone Mets the following year. Now I am on

Fourth line treatment.

If you live near Chapel Hill you also have access to Duke, I’m sure they have an excellent cancer department with great oncologists. Have you tried them are you happy with your present onc? We need the latest and the best to fight this disease. I am on Affinitor and exestamane right now stable but thats 2 months in treatment.

mariootsi profile image
mariootsi

My hair has thinned terribly on Ibrance especially noticeable in front and on top. My hair line is receeding. But, I used to have very thick hair and my whole head has thinned.

hdhonda profile image
hdhonda

Welcome to the board. My mets are to my lungs. I have been on Ibrance/Letrozole since I was diagnosed in 2017. My hair has thinned and it has started thinning big time recently. I bought several hats. I also have some wigs but none fit right. My measurements are not standard and tighting or loosing does not work. They just don't fit me as they should. It could be operator error. The American Cancer Society has a sale on some hats right now. It's called TLC wigs and hats. The ACS has new free hats and wigs at their office. I got a wig earlier. I wish you the best. My hair is bothering me. It is unlikely you will lose all of your hair. Blessings Hannah

hdhonda profile image
hdhonda

Please be sure that your oncologist knows that you are taking an alternative treatment. It appears the U.S. doesn't approve this treatment. It is listed as a hoax and I wouldn't want you to take something that might hinder your treatment. Best of luck. Blessings Hannah

Nrsnana profile image
Nrsnana

I have been on 100mg ibrance and letrozole. My hair has thinned a lot. I have a very receding hairline but cover with top hair. My hair also developed different textures. Parts are straight and parts are curly. I keep it short.

MaryCos profile image
MaryCos

My situation may be a little different than most of the ladies who were diagnosed de novo. My first oncologist went ahead with AC chemo infusions even before we knew for sure I had bone metastasis. (Unexpected PET scan results, that I received on 7/7/20 suggested I do, and we went ahead with my first, prescheduled infusion on 7/10 anyway. Didn't have a bone biopsy until the following week, which confirmed that I do have bone metastasis in my sacrum and iliac bone.) Anyway, I lost all my hair from the chemo... although I did help it along with buzz cutters when I got tired of my pillow being covered in hair and hairs all around my neck/shoulders... and all over my hands. So, what I am saying is, my starting point was different than those who went/go straight to Ibrance and Letrozole as a first line of treatment.

I did switch oncologists after losing confidence in my first one, and I started Ibrance/Letrozole 2 months ago. Well, with a lag of a week in between due to low blood and platelet counts, I am finishing up my second week of my second month today. While my hair looked like it was starting to come back after chemo (with light colored fuzz only that I couldn't tell if it was blonde or gray) right before starting the hormonal treatment, I was still losing my eyebrows, eyelashes, etc. Then my newly grown hair was starting to disappear. I am pretty sure this was the Ibrance.

Hair started coming back again when I had two weeks off of Ibrance (the 4th week break plus the pause due to blood/platelet counts), and I see it is playing peek-a-boo with me again. Eyebrows seem to be thinning a little bit, but they are still here so far. Eyelashes look good/better/back, so that may have been residual chemo effects. No doubt for me that Ibrance is causing hair loss for me, and it seems some days my hair looks/looked gray. Today, in looking in the mirror, it is my regular brown color and seems (these tiny hairs so far) might be fighting their way through. I still have no hair, really. But a bit of a 5 o'clock shadow.

For me personally, I am doing so well on Ibrance/Letrozole... with only some occasional joint/muscle pain (which is aggravating chronic pain I had before cancer), that I am taking the hair thing in stride. If lack of hair turns out to be a long-term thing, I'll need to look at whether I want a wig or not. So far, even with video job interviews, I am embracing my beautiful, bold baldness. Cause I am badass.

Sejj profile image
Sejj

Dear Thedex259, I am so sorry you are having such a complicated time. I have lost a lot of hair on Laetrazole and Ibrance to the point where I did buy a wig. My head is also cold in this weather even indoors so I wear a baseball cap. TLC. Com is a good website for wigs in all styles and price ranges with good customer service. I hope you start to feel better soon.

Hello and welcome. Sorry to hear you have been through so much pain. I was diagnosed around about the same time as you and have been on Ibrance and Letrozole ever since. My hair has thinned as well as has gone from straight to completely curly - most odd. I still have enough hair to cover my scalp though so it’s not too obvious.

I hope the tablets help with your pain.

Clare

BluHydrangea profile image
BluHydrangea

Welcome Thedex! I’m on Ibrance and Aromasin— suffering thinning hair— growing it out a little longer so I can disguise the thinning with a “comb-over”.

This is a great group and it is a fantastic place to ask questions.

I wish you the very best and hopefully an easing of your pain.

Cindi

pattila profile image
pattila

I’ve been on Ibrance for 1/1:2 years and Faslodex. My hair has thinned out quite a bit, enough loss to require a topper wig. Belle Tress makes some very nice wigs. I started taking Biotin 10,000 mg daily and it has helped with some regrowth, enough to fill in bald areas.

Itisfinished profile image
Itisfinished

Wow I am overwhelmed with joy from all the responses I have gotten back. I wouldnt wish this evil disease on anyone however its comforting to talk to others who are going through the same situation. Sometimes I feel so alone. I definitely have a strong support system so I am blessed but most of all I have a loving Father who is leading me every step of the way. We are all MIRACLES! We all have our own story to tell to help someone else in this fight! I am actually in NC at Chapel Hill for a bone shot tomorrow and bloodwork. I dont live in NC I live in SC so it's about a 4 hour drive. We have the privilege of staying at the family house of Chapel Hill and its a lovely place and the people are very nice. Thanks again for all the advice and thinning hair really isn't a major ordeal but we are women so it can be for us. I take plenty of supplements along with the treatment and lots of prayers! I am excited to be apart of a group of amazing Warriors!! 🙏❤

Eliactida1955 profile image
Eliactida1955

Hello. I was wondering why the treatment of the diet and Hoxsey? Was this your deceision ? I’m sure you had the pet scan and maybe decided to wait on any meds. I was diagnosed in sept of 2018 and dr was angry that I waited till November 1 to start letrozole and Ibrance followed two weeks later. I did not want any surgery or chemo or radiation. I’m sorry that you went through that . My cancer is to bone but lesions and no tumors. I have had zyometa infusions about three but stopped due to dental work. I take 125 of Ibrance and it brings the wbc and bec down as well. My hair is thin a lot more from beginning of letrozole-that’s what everyone says causes it. I never had much anyway but now I just keep it shorter . There are days I hurt so much -my bones but I try not to take anything except Tylenol sometime Celebrex but not daily. This is side affect of meds the weakness and also those hot flashes can be awful. I hope you feel better but at least we are alive. Stay strong this is a great forum to learn and share. We are here -staying strong as we can-God willing!🙏❤️🌹

Itisfinished profile image
Itisfinished in reply to Eliactida1955

My husband and I prayed about it and it was my choice not to do the treatment. I didnt have a good experience with the oncologist I went to and they never told me how severe it was after scans. I actually found out from my physician. It's a long story. But I have found an oncologist in NC who basically saved my life so I am sticking with him and the treatment he recommends.

Eliactida1955 profile image
Eliactida1955 in reply to Itisfinished

I chose to initially not do the chemo and radiation they were recommending as I felt like I would put it in God’s hands as I felt like I have lived a good life. I am 65 but I couldn’t ignore what I felt and saw very agressive change in breast with inflammation that showed in just a month after the biopsy. I got a second and agree on this treatment that the first dr in my home town said he could do as well. Letrozole and Ibrance . We will see what happens next and I pray it will be good . Wish you the best!✝️

morty87 profile image
morty87

My battle is very similar to yours. Diagnosed 2006, NED for 11 years. Tumor found on spine (removal of vertebrae, plate put in place), spot on hip (radiation) and spot on brain (Gamma Knife) in 2017. Been on 100 mg Ibrance and letrozole ever since. I've done extremely well ( I still work as a teacher currently remote). My hair did thin with Letrozole and Ibrance but it has not fallen out. I wear my hair short and I keep my hands out of it. I style my hair with my hands instead of a harsh brush. I am hopeful that you will also have positive results with this combo. God bless.

ndastrogal profile image
ndastrogal

Hi. Like many, I too have experienced quite a bit if hair thinning. I am one year into 100 mg Ibrance and Fulvestrant. My onc said the hair thinning would ease after awhile but I lost a lot. I started taking biotin upon recommendation of an oncology nurse. Last haircut my stylist said my hair was growing in thicker. I have taken it now daily for 5 months. This gave me hope. My stylist specializes in cancer patients (does a lot of wig styling) and she has seen many women with hair loss do better by taking biotin. I did get a wig but am hesitant to use it. I got a nice short cut and I've noticed not nearly as much us falling out. Best of luck to you!

Gramat profile image
Gramat

Hi. I have a single mets in remission in my T9. I am ending cycle 10 of Ibrance, I also take Letrozole. My hair has definitely suffered. I am 51 years old and had beautiful, very thick long black hair. Hair just shed. I first cut my hair shoulder length and only 8 weeks ago a little shorter than shoulder length as I could not bear seeing my hair shedding excessively in shower. I am having regrow this, very slow but there is. My hair is lifeless but I am just been patient. My hairdresser is not concerned about losing hair. He just says I will have another type of hair. I have also had weight gain with Letrozole

TammyCross profile image
TammyCross

Replying only to the least important part of your journey. I have been on Fulvestrant and Ibrance for 1.6 years and hair thinning just got worse recently. (I find side effects come and go.) I looked up Biotin based on others' responses below, and there is zero evidence that it works. Sort of a fad. Could be other things that make it seem it helped. Most of us have enough biotin from our regular diets; don't want to get too much in our systems with everything else that is going into our bodies. Two things that have been shown to work, supported by research, are a commercial product, Nutrafol, and an ancient Indian herb, ashwagandha, which works by reducing cortisol. I wouldn't take anything, though, without checking with my doc or nurse practitioner, someone who knows the biochemistry of my cancer meds and these supplements.

TeddyChowChow profile image
TeddyChowChow

Hi. Welcome to the group. I am so sorry to hear about the inability to do the surgery and thus the wearing of the brace.

I also am in Ibrance (cycle 26) and my hair is thinning in the front. I notice it but I'm not sure if others do yet. I plan to cut some bangs/fringe and get a shorter overall haircut when we are out of lockdown and beauticians are working again. I've also just switched to a sulfate free shampoo. Not sure if it will help but trying anyway. My hair was stick straight and is now wavy on Ibrance so it looks like it has a little volume even though thinning. You may find texture change as well.

When I was diagnosed MBC they identified a particularly weak vertebrae in my neck and I was also put in a brace. I called it stormsy because I looked a bit storm trooper-esque.

In my case, I was given the option of wearing the brace for 3-6 months while on Denosumab and taking Adcal D3 supplements to see if my bones would strengthen significantly enough without surgery or surgery to replace my vertebrae with a cage. I did the latter. But very much debated the former. I get Denosumab shots 1x per month and take Adcal 2x per day. Apparently they can be pretty effective.

🙏 With you.

XX

viennagirl profile image
viennagirl

Hello Thedex 259

I also have thinning hair and I am on Letrozole and Ibrance to slow down my mbc. I have increased my vitamins - especially the B complex. It seems to have helped but only time will tell. I am also just starting seeing a naturopath so I can get some advice on diet and alternative treatments that won't conflict with my current treatments. Best wishes for your journey. Marlene

Gramat profile image
Gramat

Hi. I know exactly how you feel. I have been on Ibrance 125mg and Letrozole since February 2020 - the last month at 100mg. Last summer my hair loss was out of control. I have always had very thick long hair which I worked hard in keeping most of by wearing cold cap during chemo in 2015. No cold cap for this treatment though. It was not until cycle 8 that shedding started diminishing, maybe end of summer also contributed to this.

July last year I commenced Viviscal vitamins - twice a day. I also use Viviscal shampoo, conditioner and Viviscal hair serum - it works. By September last year I had been on Viviscal for 2.5 months and I started noticing new hair growth. My hair is no where near as thick and long as it used to be but it is growing. I have noticed hair shedding again, exactly same time as last year - summer. I keep taking Viviscal and no longer worry about having to buy a wig though I miss ky thick long dark hair.

It is hard but it gets better I promise.

Itisfinished profile image
Itisfinished in reply to Gramat

Before Ibrance and Letrozole. It is very thin and frizzy. The texture has changed. However I am alive and grateful!

Before Ibrance and Letrozole

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