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Excessive hair loss the past few months, not just thinning

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I have been on ibrance for 34 cycles and letrozole. Hair thinning at first which i expected. Was also on xgeva for 24 months. New xgeva protocol is to stop after 2 years. so for the past 5 months just ibrance for 21 days then a week off with letrozoleevery day. The past few months i have had significant hair loss. not just thinning.

not sure what changed. has anyone experienced something similar?

thanks

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23 Replies
SeattleMom profile image
SeattleMom

Good morning from Seattle! I've been on the same regimen but for just 7 months. My hair continues to thin, but I've started washing it much less often and using a great brush I bought on Amazon: amazon.com/gp/product/B01BE...

Also, taking biotin supplement twice daily.

You have been on this regimen for nearly three years (hooray) so I'm wondering if, at some point, this side effect becomes more pronounced. It's such a debilitating thing to deal with because our hair is such an important part of who we are, and no one should be above complaining. I'm wondering if treatments for alopecia would work? Something to discuss with oncologist. In the meantime, here is a great read about individuals who have lost all of their hair to alopecia and how they moved forward during the process:

amazon.com/Stories-Alopecia...

I have only been on this combo for three months but my hair has gotten quite thin and brittle. Not sure what to do with it.

blms profile image
blms in reply to

I too, as all of us, have had hair thinning. I have only been on the drug since January but I do believe that after a while, it will thin more. I guess it has to do with how long we keep our bone marrow suppressed. Not sure we have much of a choice but maybe things will change for us. I am seriously considering checking out the electrical caps. Right now, I am using Biotin daily, 10,000mgs. and lots of other really good B vitamins to help this.

Clair19 profile image
Clair19 in reply to blms

My hair started to fall out from 3 weeks on Ibrance. I had to come off and it’s growing and thicker. I’m hoping Verzenio will be better but getting halo. I also got Botox to forehead, crows feet and neck for me. I don’t know why I get so hooked on my looks. But I do it for me and that’s the good thing.

blms profile image
blms in reply to Clair19

How long were you uff Ibrance before you could get Botox? I think fillers are okay but Botox you need to be off Ibrance

Snowcone16 profile image
Snowcone16 in reply to Clair19

Ut oh. I haven’t heard of a conflict a Botox and Ibrance. Just got 5 units today. The nurse reviewed my meds. True she may have not known but she had worked at the Mayo Clinic 4 years before coming an esthician.

Also did my juvederm today. It’s been 26 months since the last time. Actually, the last time I got it was 3 days before the stage 2 dx...

Clair19 profile image
Clair19 in reply to Snowcone16

Yeah you and I where getting it about same time. You probably don’t need for neck but I think I mentioned I had it for the first time. It looks really good. I got to much it was 10 a unit so I got 55 units, my husband would have a fit.😁. But I got my neck done so it was 550. I think I need Jevaderm next time. But wanting to gamble on vacation so keeping my money. You look very young, like you don’t need anything for your face. The Dr told me the new thing is hands down. I’m like no one really looks at hands.

Clair19 profile image
Clair19 in reply to blms

It’s a combination of getting rid of hormones too. I mean that is what makes us have beautiful skin and hair. That’s what I found on Internet but makes since. As we age our estrogen lowers and hormone therapy increases it. Not fair what we as women must go through. But the good outweighed the bad. We can always find new ways to make hair look thicker and skin nice and healthy. Good luck!

Snowcone16 profile image
Snowcone16 in reply to Clair19

Hoping the juicing helps reduce any

Hair thinning. At this point, it’s definitely growing longer. I can see in pictures. Average hair growth is 1/2 an inch per month. I’ve been juicing since February 1 and it’s literally like 4 inches longer. It was above the areola before February 1 and is now past my breast...

Clair19 profile image
Clair19 in reply to Snowcone16

Yeah my hair is growing just thinning so I just keep it right on shoulders. When I got my Botox Thursday she told me they have products to help thicker hair. For the first time I got Botox to my neck, what a difference. Since my Chemo my skin is like a prune, so I’m very self conscious. I really wish I was not like this. I can’t accept my age like my Mom.😁. I’m trying, should not worry about something I can’t change... Oh well that’s me. Have a great Sunday. Are you ready for your move? Your moving in July right?

Snowcone16 profile image
Snowcone16 in reply to Clair19

Movers pack me up on Monday. I’m

Officially a PA resident on July 1!

Clair19 profile image
Clair19 in reply to Snowcone16

👍

Snowcone16 profile image
Snowcone16

I’m 3 months in w Ibrance. My cocktail includes letrozole, zolodex and xgeva. Plus I take some liver meds. My hair has been taking a flatter texture lately. It could be the forced menopause. But, I’ve been looking into The Fall by halo couture and a topper from Jon Renau. My hair stylist actually uses these to extend time inbetween touching up her roots.

I even discussed w kids and they encouraged me if I do it to look at one w highlights; have fun. I also don’t feel the need to fake that it’s my real hair. I think my coworkers are encouraging and I would be pretty open to say it’s not my real hair.

It’s very encouraging that you’ve had success w the meds for a long time. ❤️

Clair19 profile image
Clair19 in reply to Snowcone16

Oh yeah I would get one with high lites. I get my top foiled and leave the under part my natural brown. I always tell when I get extensions or what ever. I ask people where they get there weave or extensions, they tell me social media or word of mouth. I got a good lead on my halo, so will try and call her when I get back from vacation. So you went right into menopause? Wow I was 37 when I had a partial hysterectomy that must have been hard for you. I mean your young. I’m glad your hair is getting longer. I wish mine would just go back to normal, but now what’s normal anymore.

Snowcone16 profile image
Snowcone16 in reply to Clair19

I’m not sure if I’m in menopause yet. Until January 30, I was still getting periods although they started to be 30-60 days apart, now since the zolodex injections, nothing. I just turned 47 in April so I think it was still a couple years away. Considering oophorectomy but dr said he would stop Ibrance for the surgery. I’m not sure I want to stop the med if it works...so I may just continue w monthly zolodex.

Clair19 profile image
Clair19 in reply to Snowcone16

How old when you when diagnosed? Do they worry that your overies are so functional? If you have the surgery no more medication? Sorry so many questions.

Snowcone16 profile image
Snowcone16 in reply to Clair19

44 years old. Well, I’m sure my eggs weren’t good quality but I was getting my period regularly. So...I started to take birth control pills. The gyn said I was in that weird age where it doesn’t happen but could...2 friends of mine got pregnant naturally at 44 and 46 😲

I don’t think the birth control pills caused BC but they definitely accelerated it. I had a bump that August that I thought was my implant. Started birth control September. The bump felt different by February—bigger. Made my appointments and diagnosed the day before I was flying to Vegas for my wedding (April).

I went the tamoxifen route originally. 20 months later...MBC diagnosis. Although I’m pretty sure it happened at the 16 month mark because that’s when I started getting irregular vaginal spotting after bowel movements.

Ask away...it’s therapeutic for me to share it. ❤️

Snowcone16 profile image
Snowcone16 in reply to Snowcone16

If I have the surgery then I won’t need monthly zolodex

Clair19 profile image
Clair19 in reply to Snowcone16

Thanks, so young to deal with this. My Mom was 32, and she lived till 55. However that was before any of the new drugs. I went 17 years but now I’m thinking it must have been in my spine for a while. Finally to rt lung but I wonder if I was not having sob and lung was not affected how much longer till I felt it was in spine. I say that because I had been told it was RA in spine, so expected some pain. Wow so you got married with mbc, I’m sorry this happened so early. When is your b/d mine is April 24th. Your so unbelievably upbeat for having to raise kids, new marriage and cancer! I’m impressed.... Sounds like you have great support. Thanks for sharing all your info. Clair PS Kids at 44 and 46 Oh my!😮

Snowcone16 profile image
Snowcone16 in reply to Clair19

I got married when I got the stage 2 diagnosis. The stage 4 wasn’t confirmed until January of this year. My birthday is April 27!

Yes, I had actually stopped thinking of kids but when I got engaged... I was a little excited about “what if I did get pg?!” Oh, well...guess I’ll just keep spoiling my fur babies

Clair19 profile image
Clair19 in reply to Snowcone16

How old are your children? I have a son and was hoping for grandkids. I had him very young and thank God I had him. My family was always small and they are all gone now.I lost my parents and stepdad and mom within 5 years. I took care of my baby brother who had cerebral palsy for 12 years, he died at 39 and I lost it. He was like a son and depended on me. I’m glad I had that time with him, everyone loved him. I would take him to work on weekends and he would help the residents. He would push them in there wheel chairs to eat and outside. Sorry I’m rambling. Anyway thanks for responding, I now remember you where diagnosed in January. I was stage 2 also. Another question, what kind of surgery did you have? I just had a lumpectomy and radiation. My tumor was inside a cyst. 2.5cm, but some was cyst. That was in 2001, before 911. I’m telling my age 😏.

Snowcone16 profile image
Snowcone16 in reply to Clair19

You’re a very strong woman! I’ll message you.

Clair19 profile image
Clair19 in reply to Snowcone16

I try but thanks..❤️ You are too. I’m leaving Wednesday for Ohio for 10 days so trying to write. I have 4 sister in laws the family I love. I’m really close to 2. We stay with one, she fixed her basement like a 5 star hotel for me. I never want to come back home.😄. Anyway I will leave you alone enjoy the rest of your Weekend. Go to my Facebook Leslie Kieltyka or Brankel, I have a few accounts but the one I use for friends is where I have a gray top on and hair short. If you want befriend me.

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