Hi to all I haven’t been on here in quite some time and happy to be back this site is the best so helpful and learn a lot from each other now I have to remember how to navigate around site🤦♀️
I just saw a few people have mets to scull I always had poker straight hair but in the pass year or so my hair for some reason I believe something to do with meds has gotten very curly and hurts my scalp wondering if you have mets to scalp does your scalp hurt like hair pulling and does it show up on PET scan? Hope all is as well as can be for everyone ❤️
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Barb5
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Hey there! I have skull mets too. I attributed my changing hair to the various meds I have been on..it thinned on Ibrance and came back curly and wiry on Xeloda. I never considered it to be related to those mets. 😀
Reading thru older post at one point I thought it was from Faslodex the curly sore head and a few others were also on that then there was something else I thought it was from so who knows 🤷♀️
Hi so good to be back thankyou for the info I wash my hair everyday for the most part because when I get up in the morning it’s totally out of control sticking up and out everywhere. I haven’t seen many familiar names from months ago I believe yours is the first good to hear from you.
Hi Barb. I too have scalp issues. (I have brain Mets and a couple under scalp.)I assumed my discomfort was side effects from radiation on brain Mets ( about 18) but your post is interesting. My scalp is very uncomfortable off and on. My hair feels exactly how ladies are describing taking out a pony tail. Hair follicles are tender. Keeping my hair short seems to help and if I don’t wash for more than two days it gets worse…sometimes I get up in middle of night to wash hair. I talked to radiologist and she just said side effects from radiation can be up to a year later which it is. Now I’m wondering if it might be due to something else. Lori
I meant to ask my doctor about it last visit but never got to it I usually get better answers here anyway 🤷♀️
Hi, I have extensive bone mets including a decent sized met at the base of my skull. It was picked up as an area of interest on a PET scan but not confirmed until I had a bone scan. The brain takes up the PET scan contrast agent so skull Mets can’t be easily seen with a PET scan. I have been on Ibrance/Arimidex for 10 months and have had issues with hair thinning and my naturally curly hair has gone straight! I haven’t had an issue with my scalp hurting.
My oncologist attributes my itchy scalp, tingling in my nose and lips and ringing in my ears to this skull met. Who knows if that’s the cause! It’s was less avid on my most recent scan so I’m hoping that it stays that way
I have had tinnitus on and off for years, to me it seems unlikely to be caused by the bone met.. it is more likely down to gradual age-related hearing loss, or stress. See an expert if you want help, this is not an oncologists area of expertise. My tinnitus is always there, but I only 'hear' it when I am stressed - experts really helped. tinnitus.org.uk/faqs/what-c...
Hi!I am on Ibrance and I got peripheral neuropathy on one part of my scalp - specifically, my hair follicles. It feels like I had a pony tail and let my hair down. None of the drs had ever heard of such a thing, but an ice pack and some liquid lidocaine helps. Once my dosage was lowered, I’ve hardly had it again.
I am so grateful for this group. I think the drs thought I was nuts and I started believing them!
I have the same hurting scalp (like it was up in a ponytail and let down). It comes and goes and can be quite painful. I have no idea what causes it but it’s a “real thing”! Vicki
I'm not aware I have skull Mets, it's never been mentioned. But my hair has gone quite curly at the sides, which I attributed to the medication. I'm on ibrance and letrozole. I don't get any soreness, but my hair condition has been better since I started using natural bar shampoo and conditioners. Sometimes I just wet it in the shower. On another point I had my first zoledronic acid treatment yesterday and so far so good.
Hi Barb: Good to see you back. I remember you from previous posts. I can't help with yourhair problems. I am on Verzenio with Tamoxifen and having no problems to speak of. I don't have brain or skull mets. I am sure you will find some answers here.
Just want to add that I think the hair problems are meds related. And what I have discovered is that a lower dose of most meds works well and cuts out a lot of side effects. One of the newest studies has found that Tamoxifen works at the lowest dose just as well as the highest. I think that is true of a lot of meds and far fewer side effects. I had my Verzenio lowered to the lowest dose and the side effects are much less.
I misspoke in the previous post. I can't say how most meds work. I don't have enough experience. However, I have been told by doctors that Ibrance and Tamoxifen work just as well at the lower dose. I think there are others.
Report on Scans; There are increases in the lung nodules albeit small. So maybe Verzenio is helping or not working at all. No increase in the endometrium. Hurray. Due I am sure to reducing Tamoxifen from 20 mgs. twice a day to 10mgs. once a day. Studies show 5 mgs. work just as well. But they don't make 5mg tablets. I am fortunate that my cancer is so slow growing.
Hello, I have skull Mets but I’m pretty sure my hair loss and scalp soreness are from my Ibrance. I haven’t read the other replies about the PET scan but what I was told is that the scan goes from “eyes to thighs.” My PET scan does not pick up my skull met but my brain MRI does.
I believe mets in the brain need an mri to be seen and measured. That's my experience. I have brain mets. I had Gamma knife surgery and an mri after Xmas should show they're gone or shrinking.
Ive had a very dry scalp from the radiotherapy. I would phone your consultant and at least get it noted on your file,
Brain mets have better outcomes if they're identified when they're small . Ie eligible for Gamma which is more targeted.
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Faslodex + Ibrance - new mets
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