Taking Ibrance 125 mg and Letrozole 2.5 mg. Feels like small area of my scalp is achy. Has anyone felt this??
sore scalp: Taking Ibrance 125 mg and... - SHARE Metastatic ...
sore scalp
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Thriver49
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I’ve had that happen off and on. It almost feels like I wore a pony tail too tight all day (except I don’t wear my hair in pony tails). It started when I started Ibrance and Letrozole and have wondered if it was the meds. It’s interesting to see someone else have this sensation.
I have it too. Noticed it since I started Ibrance in 2018. It comes and goes. Doctor says some folks experience it
The roots of my hair hurt. Yes, like having a tight ponytail in too long. But haven’t had ponytails for 50 years!
Yes! Comes and goes, so choosing not to worry x
I'm on letrozole and ribociclib. My scalp is very itchy. I've wondered whether this is related to my hair thinning, but I also have a scalp met. It is better on the days I wash my hair, but always returns.
Yes same here. I find myself messaging it but it stays the same!??
I’m on Faslodex and Verzinio my whole head of hair feels like it’s being pulled hopefully there is no mets to scalp having total bone scan today if there is mets to scalp I believe it should show on bone scan
In the beginning of treatment I felt like my hair hurt! I did have thinning hair as well.
When I began using a dry shampoo containing color to make my hair thicker, I developed a sore, inflamed area on my scalp. My dermatologist prescribed a cream with steroid that healed it in several weeks.
I also in the beginning of treatment, I developed open sores on my legs that took weeks to heal. I began making my own moisturizer from a utube video using all natural ingredients. I haven’t developed any skin sores since.
I hope you find relief for your scalp. These meds create challenges for us on this journey.
Be well,
Maura❤️
Yes I also have this….right now in fact. I get it in a specific area and the hair roots and scalp feel sore there. Sometimes I clip my hair up with a butterfly clasp and I thought that might be the cause, but it comes and goes and doesn’t always correspond . I do have skull mets but I don’t necessarily think there’s a connection. I find gentle massage does help but the area is super sensitive so it hurts a bit…..I’m actually rubbing my head now and it’s feeling better. Aches less and will probably fade overnight .My hair is also thinning…I’m taking Ibrance and letrozole.
Yes. I periodically have this, too. I started on chemo (when I never should have as I was diagnosed de novo), so I have chalked this up, in part, to my hair loss, etc. with that. Now my hair is returning to my regular, fine texture (boo... I lost my post-chemo curls!), which is another reason why I haven't COMPLETELY chalked this up to Ibrance/Letrozole. However, when I moved to hormonal treatment, the new hair that was coming in after chemo all went away. I also have eyebrow thinning off and on.
I reported scalp sensitivity to my nurse practitioner in January 2022. (I was diagnosed and started treatment in July 2020.) As I said, for me... this comes and goes. There is definitely something with these meds contributing to my personal experience with the scalp pain/sensitivity, but I understand that my previous chemo might also factor in for me.
Thanx but we will never really know but hope it goes away. My nose is a mess too. Always had allergies but now worse. My nose is so sore.
I have some of that too. Was worse in the beginning. Once I started taking some vitamin supplements, it improved (less congestion, runny nose... and no more blood in my tissue when I blew my nose). The nose stuff returned (except the bloody stuff) this winter, but that is typical winter stuff for me anyway. Still, I haven't gotten my standard, bad winter cold (it will be three years in a row on that if it doesn't happen this year)... I will continue to think of myself as lucky. My immune system seems to be in good shape, regardless of what my white/red cell and platelet counts say.
Is your white count low mine was but starting to climb a bit and was told to be careful so I am. I am eating healthy too!
My neutrophils and platelets were both too low when I started on hormonal treatment (in late Sept 2020) to continue on with the Ibrance without a few extended week breaks. (For the first 4 months or so.) Once my body got used to it... hasn't been a problem. And I am on 125mg Ibrance. I am still low on red/white and platelet counts (meaning they are below NORMAL range), but higher than I need to be in order to continue on after my off-week on Ibrance. I also credit my vitamin supplements with this. Plus, I feel really great. I pay a lot of attention to my diet as well, even though I only eat one meal a day. That will never get better (my habit with that and the fact I am rarely hungry), but I know what lab values tend to run low for me and what foods to be sure I eat regularly. Primarily, my areas of extra attention are related to potassium, sodium, and protein. Upping my Vitamin D also seems to have helped me a lot, in my Dr. Google opinion.
Hi Mary… read your response about the nose issues… in the dry winter indoor heat it can be annoying and troublesome… I didn’t want to give up the Claritin and now just take it daily
I have over the counter meds for allergies and colds, and do take them on occasion. I realized that the dry heat thing is not associated with my meds or lab values because of how much (more) water I seem to be drinking in the middle of the night... along with a sore throat on occasion and disgusting dryness/pastiness around my mouth when I wake up! This thread reminded me to actually set up my humidifier. Dumb not to use it when it would likely help with this.
Hi Mary! Can I ask what you take for your runny nose? Mine runs 24/7 since I started my meds. It is so annoying, particularly because I wear my mask everywhere I go and I’m always having to pull it down to blow. Thanks! Lin
Hey there. Well, especially as winter approached and I wanted to make sure I had every possible over-the-counter med I might need, i.e., cough medicine, sore throat stuff, and tabs that help with runny nose and/OR congestion... I match up what I deal with what I think is going on for me. I tend to use allergy meds more than cold tablets (because I tend to chalk this up to allergies and a weaker immune system rather than a true cold). But, for me, runny nose stuff has responded best to Flonase spray. Does the trick for me most days, especially if I have to go out somewhere. If you are talking about vitamin supplements, I'll list those out for you too.
Oh I have Flonase for stuffy nose I will have to try it for the never ending runny nose thanks for the info
For me, Flonase works better for runny nose than congestion, but I have used it for both. Definitely my Go-To for the runny nose, though.
Hi Cos. Does it safe to spray Flonase with MBC,isn’t it hormone base medication?
First, you are not supposed to take Flonase every day. So, I forgot to say that when I mentioned I used this. If someone is looking for an over-the-counter med for daily use, seems they should use a different product. That said, I've been using Flonase since my diagnosis July 2020. Since you asked... here is what an online drug interaction tool says (for my MBC meds and Flonase). Obviously, you should always check with your doctor before using something that any of us on this forum suggest.
Interaction checker
Yes, if there are vitamin supplements that work I’d like to know what they are, thanks!
So, I will tell you what *I* take. I ran all of these by my oncologist (who didn't seem to have much knowledge on the subject) and also checked things on occasion with my former oncologist pharmacist, such as adding in B-6. Everything I started taking was based on my own research (especially related to Vitamin D levels and how most of us are deficient, including studies that show a correlation between Vit D deficiency and MBC), and trying to figure out what I could do to boost lab values that were low, including red blood cell counts. My labs are all really good, except what I just have to accept as a side effect of my meds. That said, I have seen an improvement across the board (in how I feel and in my labs) once I started doing this regime.
Vitamin D – 5,000 units per day
Calcium – 600mg twice a day (1,000 total)
B-12 – 1,000 per day
Folate 400 – 400mcg per day
B-6 – 100mg per day
Vitamin C – 1,000mg per day
DHA/Omega-3 – 500mg twice a day (1,000 total)
B-9/Biotin – 2500mcg per day for hair/eyebrow loss (except 1 week prior to labs)
Potassium Gluconate – 595mg per day
Gingerann... the things I added in were in response to my typical lab values. So, I tend to run low on potassium. That is the only reason that is on the list. My diet can get me to normal range, but I am generally still a hair too low on occasion.
Same with Folate. My labs would suggest I am anemic. I asked that they check this. Found out my iron is fine but my folates are low. Just wanted you to realize that not all of us need the same stuff. Depends on what your labs say. I also tend to run low on protein and sodium. I don't do anything for that outside of trying to meet my nutritional needs through diet.
I also asked if I could take Turmeric. I still have some in the house, but I didn't find it to help me. Incidentally, I am NOT a pill person. Even taking what I take is a lot for me. But I bought an AM/PM pill organizer (that spans 7 days)... and that keeps me on track in terms of doing this every day. I got tired of looking at all these pill bottles on my desk and needed a clutter-free solution. For me, it came down to energy flow stuff!
Thanks Mary! This is very helpful. I will talk to my Onc when I go for my monthly labs on Tuesday and see what he recommends based on my results.
I didn't find my (former) oncologist to be very knowledgeable about supplements. But she did tell me that all the ones I asked her about were fine to take. Even something like B-12.... I asked her to check it, and it came back as deficient. However, she then did another test to see if it was a "true deficiency"... which would have warranted B-12 shots. Turns out, it is not a true deficiency, meaning... it is another value that is low that is connected to it. Still, I take B-12 over-the-counter each day at industry recommended levels. It's the Vitamin D that I was most concerned about. We should be registering between 60-80 on that (at an optimal level). I was at an 11 at diagnosis, went up to a 36 when on prescription Vit D... then they let that lapse and I went down to only 15. Point is, I did my own research on this, which included finding out that Vitamin D is important in ways I did not realize. (There is even corollary evidence that those with levels over 50 were overwhelmingly less likely to be hospitalized with COVID.) I asked my oncologist what "our" goal was on this... we agreed to 50. Then I found out it should be even higher. (NOT info from my oncologist.) So, I now take 5000 units a day, and my Vit D level... last time it was checked... was at 66. Of all the things I take, this and the calcium are more important. Especially with bone mets.
Mine does too so annoying
Mine too. Uncomfortable. Though I have allergies too. The heat on in the house makes it worse as it is so dry. Probably need a humidifier.
I just bought one myself! Especially since the people who live upstairs (other tenants) control the heat and it is way too hot down here in my basement apartment. Night time is the worst, even with a fan going. I bought a humidifier with aromatherapy and Vicks insert features, just in case I need some extra help with congestion. Haven't tried it out yet.
How’s the job search going?
It continues. No active interview processes at this time. What a drag!
Ugh!
On the flip side, I did just land a new consulting client that makes me really happy. They have very little money at the moment, but I believe (with them) this will be temporary. The CEO is a fellow Social Worker, and she is quite remarkable. Incidentally, I already know she wants me to join them in-house and full-time. And because of her, I would consider that... if/when they can afford to pay the kind of salary I need. This says a lot, that I would even consider it, since it would mean not assuming a CEO or Executive Director role. Either way, the work I started doing for them IS life-affirming and energy-producing. So, that is a positive. Plus, as of yesterday, I can pay my rent in March!
Paying rent is good! I hope it works out. You’ve got enough to worry about!
No kidding! Most of the people who come to me (these days) for consulting services are lacking both money and ambition/competence. This new client is really refreshing in that way. Well, okay, they only had $1000 to start with (and I ended up giving them 7 hours of extra time to get a proposal out the door), but I believe in the leader of this organization. They will be going somewhere. It also allows me to NOT apply to jobs out of desperation. Meaning, I can for the moment just focus on opportunities that excite me.
Yup! I noticed it off and on.
Wow I’ve had the same exact feeling! I had panicked thinking that my hair would be falling out because of that sensation. It does come and go… a good hot water shampoo helps to dispel the feeling. No worries !
Yes! Most of the drs thought I was nuts. I have tried various topicals, but Tylenol works best. Basically, it’s peripheral neuropathy on the scalp. Everything improved when the Ibrance prescription was changed to 100 mg. Now I get it only occasionally.
Thanks for asking!
Thanx I will try tylenol but so scarey now!
Hi, yes I have had that same feeling of a pony tail being too tight, It is similar to how I felt when I was on chemo in 2016 for my primary breast cancer treatment; prior to my hair coming out. This time I have a similar sensation, and my scalp can be very tender. This is followed by some hair loss especially noticeable when I wash my hair, although lately the amount of hair loss seems to be slowing down, which is a relief as my hair has become very thin and doesn’t fell like it used to at all. I have been on this treatment for 13 cycles, so am hoping I am adjusting to this particular side effect.
Hi. This is very interesting to me. I have had scalp issues exactly like everyone is describing—itchy, like being in a pony tail too long etc. BUT I have been told it’s from the radiation to my brain. 14 months ago I had 19 spots zapped. Both doctors (radiation oncologist and my onc) both said it can last a long time. Months and sometimes years. Any of you been told that?
Well mine did too , I’m on Verzenio and faslodex and Xgeva 4 years , scans are clear . My scalp used to hurt and was sore in places horrible until my oncologist nurse said to jump in shower every day and wash it . Everyday . Air dry or blow dry gently. It went away.
Thanx but cant wash hair every day! Hopefully will go away I hope!! Just had 2nd shot of Xgeva. Did you have any problems with your mouth, jaw and teeth just wondering?
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