Scalp pain

[marianne88]

Hi. Just wondering if anyone has pain on scalp with ibrance or faslodex. Thanks ladies. Marianne

[KMBL_]

I notice when I wear a hat, once I take it off, my scalp hurts for a while. I do notice also that sometimes it just hurts. It’s weird. It doesn’t hurt all the time.

[Barb5 in reply to KMBL_]

Me too I feel like I have a headband on and I’ll say my hair hurts🤦‍♀️

[Moon-and-Stars]

YES!! It feels like the hair is being pulled in the wrong direction and the roots are really sore to touch (well my scalp does anyway). I never associated it with the medication. Is it a common thing??

[Barb5 in reply to Moon-and-Stars]

Yes that’s how it feels don’t know why just kind of thankful there’s still hair!

[Rbeth]

Yes. I am on Ibrance and Letrozole and sometimes it feels like someone is pulling my hair. My scalp gets sore and then it goes away. I do not dye my hair. It is grey. I just read an article in Bottom Line February 15 on page 15 that “hair dyes and straighteners linked to cancer.

White women 8% increased risk

African-American 60% increased risk

Hair Straighteners 30% more likely to develop breast cancer.

By

Dale Sadler PhD chief epidemiologist branch US National Institute of Environmental health sciences.

Study published on line: International Journal of Cancer.

Reenie

[Hidden in reply to Rbeth]

Every day I read about something else that causes cancer. I have a fb friend (who does not have cancer) but posts everything different every day that is suspected of causing cancer. But if you want, there are organic hair dyes.

[Hidden]

I have severe burning an itching from

Ibrance. My doctors thought it was another med but I figured out the it was the Ibrance. It’s so bad it keeps me awake. I found a cooling gel that I put on at night that helps for awhile and a member on here told me of another product to try and I’ve ordered it I have Mets to my skull which caused me a lot of pain before I started taking pain meds.

[Hidden]

Yes the top of my scalp is very tender. Also have hair thinning which isn’t that drastic thank goodness. Hope this helps.

Best wishes

[Malyssa]

Hi, I also have pain in the scalp but not all the time. When it is really bother me, I get into the shower and wash/ condition my hair with my head pointed down. I massage the shampoo and conditioner in softly with my fingertips to get the blood flowing and with my head pointed down helps even more. My scalp pain didn’t start until I started Fasldodex a couple months ago. (As well as hair thinning- NOT very happy about that either- but I just got a cut haircut which helped with the body and texture. Love to all of you wonderful, strong, beautiful woman!! )

[Barb5 in reply to Malyssa]

I noticed most of us are on or were On Faslodex with the scalp pain. I just got off of it 3 weeks or so ago

[Captainmarvel]

Me too! My head has 3 different types of pains over the month.

1)Scalp pain like my hair has been pulled

2) head psi like you’ve hit your head on the corner cupboard

3) pressure, tinnitus & constant pain/ache

I’m on ibrance & faslodex

[Barb5 in reply to Captainmarvel]

Gotta be the Faslodex we are all saying the same

[Barb5 in reply to Barb5]

My hair also got curly on Faslodex and I had poker straight hair I liked it tho

[SeattleMom]

Hi, Marianne,

My scalp gets very sensitive. Can’t remember if it’s last week on Ibrance or first week. But it gets extremely sensitive to touch, particularly top of my head.

Linda

[Hidden]

I have exactly the same as Linda.

I’ve only noticed it the last 2 months.

Clare

[Rustysrah]

Dear all, Scalp pain is because of the hair thinning. If you’ve ever had chemo it’s the same type of thing, you get this pain just before the hair falls out, exactly as you have all described it, like it’s been pulled or twisted back on itself. Only with ibrance it isn’t so bad because it doesn’t all fall out. Be gentle with your hair and scalp, don’t rub, use baby shampoos, pat dry etc. Xx

[urthmothr in reply to Rustysrah]

I was expecting to lose hair, but not the painful scalp! I've been wearing a ridiculous-looking surgical cap around the house. When I go out, I use a silky scarf to gently wrap my hair. Nighttime is a problem, because I wear a CPAP mask with headgear. Last night, I had an idea to use a knit swim cap and put the headgear over that, so it rubs my scalp less. I'm going to try oatmeal colloid today, and I got some coconut oil rinse for my hair. Any other ideas?

[Geulah]

had it also when on Ibrance...funny feeling, a bit painful to the touch. I told myself....as I try to do with all kinds of weird sensations in the body...it's the healing.

[Lordmandy]

The crown of my head is sensitive, although I’m not sure I would call it pain. I do feel an uncomfortable feeling when I brush the crown of my head, or rub with my fingers, or scrub when shampooing my hair

[marianne88 in reply to Lordmandy]

That’s exactly what I feel.

[Bishtown]

Yes! Odd, because it comes and goes. Can’t comb or brush the top of my head, and then the next day it is fine. My hair keeps thinning at times, but still have a decent head of hair, and I have been on arimidex and Ibrance almost two years.

[Lordmandy in reply to Bishtown]

I am 4.5 yrs.

[Annadm]

Yes! I’m on Ibrance and Letrozole and sometimes, not always, I feel that pain on my scalp like I felt during chemo the first time. All I can think of when it hurts is...OMG my hair is falling off again. But really it isn’t. It’s thinned out though.

[gerisplace]

Yes. I have scalp tenderness off and on. I’ve been on Letrozole and Ibrance for 35 months now. I have bone Mets in my scalp, spine, pelvic area etc. I thought the tenderness was due to the tumors in the scalp! My hair is also thinning a lot. Glad to hear the tenderness could be a result of that. Luckily I’ve always had really thick hair. Just another one of the annoying side effects of MBC treatment!

[marianne88]

Thank you everyone for your wonderful responses. It’s a new side effect. Sometimes it hurts in my forehead and then sometimes above my ears in my head. I’m not sure if I have a sinus infection. Who knows. But thank u for responding and keeping me posted. Hope everyone is well ❤️❤️❤️

[JimmyStewartHarvey]

My first cycle of IB and Faslodex. 3rd week. I have slight pain on right side crown of head. There is a small spot there that was hurting g earlier. It is slightly painful to touch...but not much.

[Ps103-BTLOMS]

I remember once having a stabbing pain in my parietal area of my skull while on Ibrance/letrozole. I would have intermittent itching in that area and scalp soreness. Last spring a bone can showed bone mets to my parietal skull. So far no mets to the brain or other organs... just bone.

[viennagirl]

Hi Marianne,

Thank you for mentioning this. Others might be experiencing similar experiences.

I occasionally get a funny feeling in my scalp - a sort of tight feeling . It is almost like I have a head band on that is too tight. When I first started taking Ibrance and Letrozole I got that feeling quite often. It is not actually pain but it is definitely irritating. I don't get that sensation very often now. I am not sure why it went away. But the other night I took one CBD tablet before bed and that strange sensation returned. I don't call it painful but it is not pleasant. So I stopped taking the CBD. If you are getting pain you should check it out with your Oncologist. It could be diet related.

Hope you get this resolved. Take care. Hugs Marlene

[NeverOutOfTheFight]

I have been on Femara and Ibrance for just over 2 yrs. Just reduced Ibrance dose from 125mg to 100mg because my neutrophils weren't rebounding. The scalp.pain just started over the last few months. Comes and goes. Found that washing with Paul Mitchell Tea Tree shampoo seems to over relief.

[Teddielottie in reply to NeverOutOfTheFight]

Hello and welcome on here!

Its good to see you have done well on Ibrance /Letrozole and I hope it continues for some time . I am on the same protocol (3 years next month ) and I too am considering reducing the Ibrance dose from 125mg to 100mg, now that research has shown it can be as effective as the higher dose . (My neutrophyls are lower than they used to be , but are still passable.) Have you noticed any difference on the lower dose ?

I have experienced ‘tightness’ on the crown previously , and I do ocassionally get an itchy scalp, especially behind the ears ... organic aloe vera gel rubbed into my scalp and hair seem to help ...as well as making my hair less flyaway / more shiny . x

[NeverOutOfTheFight in reply to Teddielottie]

Glad to hear you are doing well too. I didn't have the scalp issue until a few months ago, and it was right around when I changed doses. So, not sure if would be worse or not. Three yrs is great. Has Ibrance reduced your tumors, or are you just not progressing? I have trouble with diarrhea and mild mouth sores on days 3-5 of each cycle, but I put a little tea tree oil on them with a qtip and the are gone by morning. Other than that, not having trouble with side effects. All tolerable. Thankful to have a relatively normal life.

[Teddielottie in reply to NeverOutOfTheFight]

“Has Ibrance reduced your tumours , or are you just not progressing?”

To date , my (post treatment) ct scans , of which I have had 5 , have all shown that I was ‘stable’ , my mets were bone mets and these were said to have ‘sealed over’ , and I have no pain. After about a year on Ibrance /Letrozole, my onc , she said to me , ‘There is no such thing as remission in BC , but if there was , you are as close to it as could be ‘, and she later reported back to my GP ,that I was doing ‘remarkably well’. I know I am ‘fortunate’ to have remained on this protocol (my first) for three years , next month . P.s . Ibrance only became available on the NHS in the U.K. in Dec 2017 , which is when I started on it .

But I do realise that there will come a point when this protocol will stop working for me , and I will have to switch treatment . I have a ct scan later next month , so I am hoping I can stay on this treatment , especially since I have tolerated it well .But I would consider a lower doseage of Ibrance to 100mg , if my onc agrees ?! What level did your neutrophyls drop to when you were switched to the 100mg dose ? Thanks !

Wishing you well as you continue on this protocol ! .x

[NeverOutOfTheFight in reply to Teddielottie]

Hope you are still doing well. My neutrophils were in the 600 - 800s 3 months in a row after bouncing around on the low side for about 6 months. I will be at the 3 yr mark in Sept.