sick of medicine attacking me

[TeenaUSA]

so ok who on here has nails issues with letrozole and ibrance also XGeva. My nails are peeled all the way to the soft part and around them they are peeling on skin too , my feet did it at first they stopped. My hair well it is thin and feels like horse hair I am getting it all cut off short to be able to just mousse and go lol. I mean it is enough for me to deal with all the bone aches but then this ugh sorry y’all I am venting is all. Everyone have a great day and many hugs to ya.

[2Hopeful]

You’re not alone. I’m also on Ibrance and Letrozole and cannot grow any fingernails. Toenails - no problem! LOL! My fingernails just split and peel so they look terrible but at least I’m stable so guess it’s an ok trade off

[TeenaUSA in reply to 2Hopeful]

So I was hoping it straightens up for both of us

[Shar313 in reply to TeenaUSA]

i take Biotin pills daily and my nails and hair are better. Per the advice of my onc I no longer use a hair dryer which has stopped my hair thinning. Hope these suggestions help.

Sharon

[Claireperth]

yes I had all those problems but these drugs are no longer working for me so I am starting a new clinical trial next month. Hang in there because if these drugs become obsolete, your nails don’t seem so important 🌸

[Red1246 in reply to Claireperth]

I’m so sorry Claire the meds stopped working and hope the clinical trial will be beneficial. Wishing you all the best. Hugs. KS

[TeenaUSA in reply to Claireperth]

You are so right, prayers for you

[Split in reply to Claireperth]

Hi Claire, which trial is it please? Are they testing something for people who failed cdk 4/6 inhibitors? I live in Sydney.

[Claireperth in reply to Split]

I tried to send you a photo of info form! Send me your email address and I will try again 🐱

[Split in reply to Claireperth]

i have just sent it. Thank you!

[TammyCross in reply to Split]

Can you give the rest of us a hint of the type of medication?

[Split in reply to TammyCross]

ir.olema.com/news-releases/...

[TammyCross in reply to Split]

tx

[Red1246]

Yep, I have the same problem with my finger nails. My toe nails grow like weeds! Also have issues with my hair being frizzy and unruly so I had it cut super short and splurged on a great wig. Hate having to wear one as before cancer I had great, thick hair, but it looks really good I’m told. And natural. I’m stable so as 2hopeful says, it’s a trade-off.

[TeenaUSA in reply to Red1246]

Well yep, I am thankful also just get down is all. I am glad I found yall on here.

[MadameKa]

I have been on this medication for five years. Before I started I looked ten years younger than my real age I now look ten years older. It's a lot to do with hair, thin, frizzy, growing in whisps. But my skin and everything else has aged too. I mourned the loss of my looks, still do sometimes. It's a cruel disease and the younger you are wnen it gets you the crueller it is. I am luckier than the folks who get MBC in their thirties, but I wish it had stayed away from me until I was seventy. Or eighty.

[TeenaUSA in reply to MadameKa]

Yes, I look old myself since this is my fourth cancer to fight, it seems to get at us.

[MadameKa in reply to TeenaUSA]

💗 oh. I am always at a loss as to what to say. I don't like to get other people down by being grumpy, but too much positivity makes me irritable, like a conspiracy of silence. But I am your sister in arms, such as I am. I wish you all the best.

[TeenaUSA in reply to MadameKa]

you are just like me. I try to say positive things on my social page if I am down I do not say nothing I have ended up deleting it now. I am in a lot of hurt and so that means I am not positive lol. Yes you are a sweet one. Thank you sisters we are forever. ♥️🥰

[Timtam56 in reply to MadameKa]

Beautiful. Love it. I feel the same.

[Apes63 in reply to MadameKa]

me too x Best Wishes

[Jenhood]

hi there

I also are taking letrozole and ibrance

Yes my nails are dreadful , soft and splitting constantly . I applied nail strengthening varnish but I’m not convinced it helps( sally Hanson) I’m in the uk so it sure if this is available overseas?

My hair has just stopped thinning , but is dry . I kept it shoulder length but have had it layered to give the appearance of volume .

Hoping that this all settles soon, like you say it’s enough to deal with the aches in our joints and deal with the constant battle of MBC .

Guess it’s a price we have to pay ,

We are all beautiful souls keep smiling we can get through this xx 💋

[TeenaUSA in reply to Jenhood]

I agree we can do this 🤗

[Timtam56]

Nails. Fingers. Hands. Hair. Everything. Yes. I get tired of it too.

[Beryl71]

I'm sorry you've had these issues. My nails get a bit dry so I use a good hand cream and no varnish. I had fungus on my big toe but thanks to a remedy from this site it's improving. My hair was dry to begin with but I started using pure hand made bar soaps and it's much improved. I guess you have considered diet? I hope you find some solutions. X

[TeenaUSA]

yes I have tried so much already but now my nails have the bumps so maybe they are fixing to get better. Thank you

[OneLump22]

Vent girl! Vent! It's allowed here. Some of us may even come up with ideas that might be helpful. My mom's a cancer survivor too (benign not S4 like me), but she also has my dad to deal with (2 mini strokes, he's stubborn about his meds & won't listen to her (he's also stubborn about wearing his hearing aids), et. So I called her to see how they were doing & that's what we both did, vent for an hour. Nothing got resolved, but we got a lot off the chest & out of our systems & both of us feel better. So I'm all 👂& 👁️.

A little cheer up. youtu.be/Iaey4lktLoE(Not working as expected?)

[Sharon0122]

I feel your pain. I always had very thick hair, now it’s thin and balding at the crown. My nails look horrible and recently I’ve had five steroid injections to relieve the pain in my hips and nothing works. Went to Colorado last week pain was and is bad I can’t stand or walk more than five minutes. Was going to see family in Chicago and Michigan next week, I’ve canceled the trip. Hugs!

[Shafight]

I have the same problems with hair and nails from Ibrance and falvestant. Now I’ve changed to Affinitor and Aromasin and they feel stronger so these issues will probably get worse

[Kcap430]

Vent away sister! Scream curse break something if you need to. I too am on those meds and some days just plain suck. We can feel thankful for these meds and get overwhelmed with what they do to us physically and mentally. Hoping you start to feel relief soon. You are not alone ❤️

[Mimigram]

Is anyone taking biotin. I am taking 100 mg a day and that seems to be helping with my hair. I am anemic so nails break easily so keeping short. We can always put fake nails on. I am going to start Ibrance and fulvestrant soon as my markers keep going up. We have not been able to locate the cancer yet. Still searching.

Mimi

[OneLump22 in reply to Mimigram]

My drs. took me off biotin as far as ingesting it because they said it would interfere with the medications. However, it was recommended to use shampoo & especially conditioners that have biotin & VE in them. Salon Selects also has a repair creme in the ethnic section of Dollar Tree Store's Health & Beauty isle. Pink jar with Argan oil in it. I've been using that to combat my straw hair. It last right up til next shower. Just a 🤔 thought. 🤷

[Sparky95]

I had the same problem when I was on those drugs. I started taking the Nature’s Bounty Hair, Skin and Nails products with Biotin. I also have a wonderful nail salon that used silk to keep my nails together. They were cracking and splitting so bad.

Each drug seems to have different effects and it is quite a challenge. We all need to vent in this safe place so we don’t just take it out on those we love.

Hang in there and praying it all works!

[OneLump22 in reply to Sparky95]

Amen

[sevoia]

I am having a different problem with my nails. I am on the same meds for the last year and about 3 months ago, my nails are splitting way above the quick and it is quite painful to cut them.

[TeenaUSA in reply to sevoia]

mine are doing that also and yes it hurts so bad. I have noticed bumps in my nails that are growing like a brand new one looks way better than the splitting ones.

[Smokeyd]

Venting is good, especially here in this safe place as others have said. I too am on Ibrance & Letrozole plus Zometa monthly infusions. The worst side effect for me is the joint pain! Mostly in hands & elbows. Wake up feeling like the Tin man!! I take a daily low dose opioid (Tylenol did nothing!) that helps to take the edge off! The hair thinning has stopped, but what's left is so thin & wirery looks horrible and makes me feel 100 yo! Thinking time to cut it short but like to be able to put in pony tail to attempt to hide it lol! Unlike almost everyone, my nails are unusually long, not sure why, think maybe the daily calcium pills must be the miracle drug for them lol!

Glad to be able to vent here too!! Guess we have to take the good (keeping cancer from growing) with the bad (multitude of side effects)!

Wishing you all the best in this crazy journey ! ❤️

[TeenaUSA in reply to Smokeyd]

I agree we just have to keep punching through. I am getting my hair cut this week short short like spikey so it is simple for me.

[Smokeyd in reply to TeenaUSA]

A hair cut always makes us feel better! Cut mine yesterday, fairly short for me. Your lucky you can wear spikey, that will be so much easier to take care of!

[Katie9898]

My nails aren’t great on Ibrance and Letrozole, but my worst problem is trigger thumb in both hands. Currently wearing thumb stabilizers . And I’m with all the ladies with the frizzy hair, dry hair issues. I have every anti frizz product known to man and nothing seems to help, especially in Florida humidity.

But I keep telling myself, it’s keeping you stable. My mantra these days with all the side effects.

[TeenaUSA in reply to Katie9898]

yes my hair is so crazy now too. And it sucks but have to do we what we can just hard though.

[Sejj]

Dear Teen USA, I know how difficult the nail situation is. Have you tried taking otc Biotin? It’s a vitamin B good for hair and nails. Please ask your oncologist or dermatologist about taking this. I take 5000 mcg every day.

Also keep nails short and use hand lotion every time you wash hands.

[TeenaUSA in reply to Sejj]

they told me to use gloves not to get hands wet much and to moisturize daily.

[stardust1965]

I had the whole thinning frizzy hair thing and dry splitting nails on the same meds. I moved on to Exemestane and Everolimus and my nails were really nasty, spitting vertically half way down the nail. It was painful and they caught on everything. Fast forward to my fourth change of meds and my nails and hair are back to normal. People now complement me on my think healthy hair! If only they knew!

So things do change and are directly related to the medication you are on.

[TeenaUSA in reply to stardust1965]

yep I tell my family if y’all only knew what we all endure through our journeys y’all would freak out.

[Lynn-in-California]

Me, too. I have been stable on 125 mg. Ibrance plus 2.5 mg. Letrozole for 7.5 years and I have very thin hair and paper-thin nails. And about three years ago, they discovered that I had a fungal infection in my lungs, coccidiodomycosis, or "valley fever." They put me on daily fluconozole for a year— and most of the hair on the crown of my head fell out! I was really almost bald right on top. (Like others, I also have a lot of arthralgia, or joint pain.) I am now 62 years old and my hair looks pretty pathetic—but I mostly accept it and try to stay in touch with gratitude that I have lasted so long. Others in my situation have popped off years ago. In high school, I won the senior award of "Prettiest Hair" (along with a guy with nice hair) out of a graduating class of almost 1000 seniors. I had striking very long, shiny, thick blondish brown hair down to my rear end. Now I'm an overweight arthritic older lady with terminal breast cancer and crappy hair. I have worn my hair fairly long my whole life, but now it's about a foot long, which is short for me. There not much. I prefer a blunt cut so the ends can try to cling together; I have very against layering because I need to keep every bit of hair I have. Now that I have been off fluconozole for almost two years, I have some regrowth, but it's still thin and disorganized; it doesn't want to behave and I can't be bother to spend much time with it. For about a year, I wore headbands which did a great job of hiding the baldness. I bought a whole bunch on Amazon, but favored this woven headband thatI show in the last photo. Oh, well. I'm alive! Here's my slogan: 'Tis better to have been hot at one time than never to have been hot at all." And the corollary is, "'Tis better to have had pretty hair at one time than never to have had pretty hair at all." The photos show my hair in college (with hair curled as I was attending a wedding), when I was in my early 30s as a teacher, about ten years ago, and when my hair on top almost all fell out 2.5 years ago. The final photo shows the headband I wore the most during that time when my top baldness was really awfu. I have enough regrowth now that I usually do not wear headbands, but it's still thin. Hang in there, ladies. I try to be a good friend to myself and love myself how I am now—despite cultural standards of beauty and despite knowing that I looked different/younger/prettier in years past. I figure that when ladies are in their 60s, they aren't meant to stay looking how they used to look when they were 20, right? I say, be yourself. Love yourself. Carry on as long as you can. (To see all five photos in the montage, I think you need to click on the photo below to expand it.)

Evolution of My Hair

[TeenaUSA in reply to Lynn-in-California]

you are so right.

[queeneee]

It may be a bit late, but have you tried this for your nails? cancerpal.co.uk/product-pag...

This is a UK site I think, but probs available in USA. My cancer centre in scotland did a trial and found it was more effective than wearing dark nail varnish or chilling finger nails during chemo. I am on oral chemo, and decided to try it. I have not had nail side effects actually, but have found my hand and foot nails are looking marvellous! Worth a try

[Kruza]

Girl veeennnntttt away, this is the place to do it. I am on letrozole and kisqali, my nails break so easily, so I keep them short. My hair is soft and curly but thin. My feet, knees, hips and shoulders hurt and on this sight a few weeks ago someone mentioned Aleve as an alternative to my taking hydrocodone as it takes away the pain but gives me nausea, which means I have to take an anti nausea med before, it is just too much. I got Aleve and used it Saturday afternoon, it seemed to do the trick as I was able to function better. We all need a listening ear and so whoever created this space gave us many ears OR is it eyes since we read, I don't know, you all know what I mean. 🤣🤣

[Shafight]

me too