New symptom?: I hate when I get an out... - SHARE Metastatic ...

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New symptom?

CatLady2022 profile image
44 Replies

I hate when I get an out of the ordinary feeling since it could be nothing or it could be earth shattering. I’m on verzenio and letrizole. Recently my scalp is super sensitive. As far as I know, I am not losing my hair, although hard to tell since I was blessed or cursed (could be both depending on how you look at it) with extremely thick curly hair. I don’t remember having scalp sensitivity when I lost my hair during my first round of chemo in 2014 after my initial stage II BC diagnosis. Has anyone had a similar experience? I just had an oncology appt 4 days ago and although I was experiencing scalp sensitivity then, I forgot to mention it since the appointment was to get scan results and my brain was not functioning properly for fear of what I was about to hear and then when it was good news, I was just so happy, I lost all train of thought except happiness. Is this a common side effect of either verzenio or letrizole? Thoughts?

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CatLady2022
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44 Replies
Silver126 profile image
Silver126

I was on Ribociclib and letrozole and my scalp was sensitive especially on top of my head, I noticed that hair grew slower than usual, too. After about one year on treatment my hair was thinner than usual, but with lotions and natural hair products they got thick again. It takes patience and time to devote to our stressed bodies 😀

CatLady2022 profile image
CatLady2022 in reply to Silver126

I have enough wigs to fake it so I’m not too concerned about hair loss as long as it grows back but man those poor women whose hair never grew back after chemo, that would destroy me. Hair is such a big part of our feminity or at least it is for me because I’m recognized all over town because I’ve always had long, luxurious, thick hair. I refused to let it grow back the way I once had it for fear cancer would come back because it was such a traumatic experience for me when I lost my hair the first time. I wear it in a pixie now. People just thought I cut my hair after chemo cause if I left the house, I’d wear a wig or a halo with a cap. My father in law died before my hair grew back in 2014 and so I wore a very nice wig to the funeral. Relatives who didn’t know I had cancer, remarked how beautiful my hair was since I cut it short. 😂 Some women look gorgeous with a bald head. I DO NOT! I have wrinkles and scars in my head from having heavy hair and also skin tags removed. The sensitivity is toward the top/back part of my head so it’s probably in the same location as your sensitivity.

Silver126 profile image
Silver126 in reply to CatLady2022

Yes it was in the same zone! When I switched to Xeloda it disappeared, so I wouldn’t be concerned. I never wore a whig and nobody noticed anything about my hair 😀

Shafight profile image
Shafight in reply to Silver126

Where do you get your wigs

CatLady2022 profile image
CatLady2022 in reply to Shafight

tlcdirect.org

CatLady2022 profile image
CatLady2022 in reply to CatLady2022

There are wigs, halos, scarves etc on this page. I have quite a few wigs from this site. When you click on the link, just click the link again when healthunlocked asks if you meant to go there.

Shafight profile image
Shafight in reply to CatLady2022

Thanks

Silver126 profile image
Silver126 in reply to Shafight

I never wore a wig but I bought one in a dedicated shop In my town in case I needed it.

Pbsoup profile image
Pbsoup

I had that on Ibrance. I think it's a fairly common side effect. Especially if you have just had a good scan I wouldn't worry too much. But of course mention it to your doctor.

CatLady2022 profile image
CatLady2022 in reply to Pbsoup

I will for sure mention it to my oncologist but my scans did not include an MRI of brain so I am definitely concerned. Thanks for the reply.

Shafight profile image
Shafight in reply to Pbsoup

Why didn’t anyone tell me about a sensitive scalp. Thank God for the women on this site! Why would I think it was related to Ibrance?

luckysmom13 profile image
luckysmom13

Where is the scalp tenderness?

CatLady2022 profile image
CatLady2022 in reply to luckysmom13

Toward the top/back of my head.

Barb5 profile image
Barb5

I’m on Verzinio and Faslodex a while back by scalp was hurting thought it was the meds but as it turns out I was using a hairdryer with brush attachment when I stopped using that it went away🤷‍♀️

CatLady2022 profile image
CatLady2022 in reply to Barb5

My hair is super short so I just wash and air dry but my scalp is so sensitive, I dread even washing my hair. I hope it gets better with time.

Buffwright profile image
Buffwright

I’ve definitely had scalp sensitivity on everything! It doesn’t seem to mean much most of the time.

Jenhood profile image
Jenhood

Hello Yes I have experienced this a few months ago , but I also found my hair was thinning at the same time .

The meds I’m taking are ibrance and letroazole

It felt very sore and tender for a few days then it passed , I have recurrence perhaps once or twice since and it settled down . I still find my hair is thinning but not to the point you can tell

Hope this helps

CatLady2022 profile image
CatLady2022 in reply to Jenhood

It definitely eases my anxiety about it for sure. Thanks for the reply.

JKMS profile image
JKMS

When I was first diagnosed in 2020 I definitely had scalp sensitivity and I remain on Letrozole and Palbo. My scans always cover my head and no issues to date so, as others are saying, I think it’s a common side effect. I still find it hard to differentiate side effects, potential progression and other health issues!

valentinecalico profile image
valentinecalico

Hi....I had a sensitive scalp in the area you describe while on Ibrance and Letrozole. My hair thinned quite a bit too. It eventually went away. Good luck! 🙂

8576 profile image
8576

My hair is beginning to slowly thin out. I have been on it for7 months. Hope it stops before I go bald.

Cheers, June S.

CatLady2022 profile image
CatLady2022 in reply to 8576

Hubs says better bald than dead but he’s been bald since his 20s and I think it’s different for men and women. They expect to be bald eventually. However, we do not so when it happens it’s very traumatic. Here’s hoping your hair stops thinning!

clanago profile image
clanago

Hi I've been on Ibrance and letrozole for 3 years and my scalp gets super sensitive still. 🥺 it comes a goes. I try only washing my hair a few times a week. I hope you feel better.

CatLady2022 profile image
CatLady2022 in reply to clanago

I’m lucky I guess because my hair is super dry so I only have to wash it once a week. It would be too painful if I had to wash more often. I hope your sensitivity goes more often than it comes. I’m still experiencing the sensitivity probably on week 2 or 3. Hopefully it goes away at some point.

Sheila100856 profile image
Sheila100856

Good morning, I was on Letrozole for four years. I had the sensitivity many times. It always felt like i had been in the sun to long and sometimes it would be extremely sensitive..

Hope this helps…

😀

Dragonfly2 profile image
Dragonfly2

Hello catLady! Scalp tenderness comes and goes with me….usually when I was near the end of my 21 days on IBrance. I know my hair has thinned out but I wear it short and use color to give it body…most people would say my hair looks good. I had lost my hair completely 19 years ago during chemo and I remember my scalp being so sensitive that I was glad I had buzzed it before my first treatment…I can’t imagine losing long hair….but under IBrance the sensitivity is just temporary…a gentle shampoo and light brushing helps… wishing you the best!🥰

CatLady2022 profile image
CatLady2022 in reply to Dragonfly2

You were braver than I was. I chopped my hair into a Bob at first because I knew I was going from waist length to bald. However the Bob didn’t last long because before my second chemo treatment, it was coming out completely in spots. I made hubby shave it all off after that and wore wigs but in this hot Louisiana sun I was thankful I didn’t have to wear wigs in the heat of summer because my hair was beginning to grow back by then. Hubs liked what looked like the buzz cut but I couldn’t wait until I had my bangs back. That seemed to take the longest to grow back. All the best to you as well!

Dragonfly2 profile image
Dragonfly2 in reply to CatLady2022

That was certainky an experience…right? Best to you !🥰

Aquadog profile image
Aquadog

I've been on Ibrance and letrozole for 5 1/2 years and this problem comes and goes. It's on the top of my head and when I push my hair back or brush it, it's painful. It's not every day and it's not my entire scalp. I know letrozole causes thinning, so maybe it causes this, too? Ugh, side effects!

CatLady2022 profile image
CatLady2022 in reply to Aquadog

Based on the responses I’m getting, I’m pretty sure the sensitivity comes from letrizole and not verzenio. At least now I know.

WhippetX2 profile image
WhippetX2

I’m on Ibrance and letrozole. Occasionally I’ll have patches of tenderness on my scalp. It will last a few days and then just disappear.

Figletf profile image
Figletf

Hello CatLadyI have been on Verzenio and Tamoxifen for a few months and my head was very sensitive,itchy in the beginning.Now my hair is really coming out in handfuls

I had been on Anastrozole for two years after my dual mastectomy2016 with no hair loss but then my cancer metastisized to liver and bones and I lost my hair in 2018 during chemo infusions but since then I have taken Ibrance and Zeloda with no hair loss .Now I don't know if is the Verzenio or the Tamoxifen .

Sorry you too are experiencing this stupid side effect and I hope my hair stops dropping out before I am bald again.I HATED wearing that cute but hot wig here in Florida's heat😩

CatLady2022 profile image
CatLady2022 in reply to Figletf

Hmm and here I was thinking it was letrizole but maybe it’s all AIs that cause scalp sensitivity or maybe anything that makes our hair thin which again could be the chemo drugs. At least I know now it’s probably one of my meds and probably not a brain tumor. I hear ya about that oppressive heat. I’m down in south Louisiana where the heat is killing us right now.

bracelets1 profile image
bracelets1 in reply to CatLady2022

That's what I was thinking about too- since my hair is thinning maybe that is causing my scalp to itch..... I too am in south Louisiana and I haven't had to purchase a wig yet, but I think it's coming. I am 6 months into Ibrance/Letrozole and I was hoping it would've stopped by now. But no, unfortunately I am actually losing more now than ever. With this heat and humidity the thought of a wig plus hot flashes is insane

😝

Figletf profile image
Figletf in reply to bracelets1

So sorry you too are being bothered by this❤️

bracelets1 profile image
bracelets1 in reply to Figletf

It's a small bother - things could be worse :) - but I hope your hair stops falling too!!!!

Figletf profile image
Figletf in reply to bracelets1

Thanks 👍

CatLady2022 profile image
CatLady2022 in reply to bracelets1

Which parish are you from? I am down here in vermilion parish.

bracelets1 profile image
bracelets1 in reply to CatLady2022

Well we are practically neighbors - I am in Lafayette parish - So we both can commiserate about the heat and humidity

😝

CatLady2022 profile image
CatLady2022 in reply to bracelets1

Are you receiving treatment at Cancer Center of Acadiana?

bracelets1 profile image
bracelets1 in reply to CatLady2022

I sent you a private message!

Figletf profile image
Figletf in reply to CatLady2022

Thanks for your reply!It is so nice to know we all care about each other❤️

Shafight profile image
Shafight

Hi. I’m on Ibrance and fulvesant and my hair started thinning and changing texture after about 6 mo. Now I have a lot of scalpSensitivity especially after I have it colored. You all made me aware that this is from the meds

Figletf profile image
Figletf in reply to Shafight

Yep❤️

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