Were you ever on Halaven/eribulin? What happened with your hair?

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ShetlandPony
ShetlandPony Member Posts: 4,924
edited October 2020 in Stage IV/Metastatic Breast Cancer ONLY

I'm having a hard time getting a good idea of what kind of hair loss is typical on Halaven/eribulin, and what I should have on hand if I do not wish to show a patchy or bald head. (I know some people are cool with going out as is, and I support them! But my preference would be to cover.) I hoped my onc and nurse would tell me what the majority of their patients experience, but they just sort of smiled at me, and I could't tell if they just didn't want to give me bad news, or if they thought hair loss would be minimal, or if they just don't know because it is so variable. So what is your experience? Just thinning, or enough that covering would make sense? I could get a pixie and fluff it up a bit if only get some thinning. Or if I lose enough to make a baldish patch at the crown, I could wear a topper. Or if I lose enough to look patchy or mostly bald, I could use wigs and caps.

Current status: Long hair. Infusion #1. Then twelve days pass. Infusion #2. I'm starting to think there is a bit too much hair in my hair brush. On day four, small clumps of long hair come out in the shower. Light shedding continues.

Is it going to keep coming out or not? Do I make an appointment for the pixie cut? Do I keep the wig I ordered or return it? Where is my crystal ball when I need it? At least with Taxol I knew what to expect, and I could make a plan.

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  • Kayla250
    Kayla250 Member Posts: 201
    edited September 2019

    thank you for asking this question. I have been searching this myself. I start next week. I have been on 3 cycles of Navelbine and it failed; my hair drastically thinned; if Halaven continues the hair loss I’ll have to make some important decisions.

    Look forward to read from those who know

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2019

    Hi, Kayla. There is a nice little group on the thread called “Halaven Day1” but I created this thread in hopes of hearing from more women, who may not be on Halaven any more but could tell us how their hair fared. Do come and check in on the Halaven thread, too.

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  • Kayla250
    Kayla250 Member Posts: 201
    edited September 2019

    what a good idea, I hope those who have been on Halaven will have answers.

    My last chemo’s, Navelbine, thread was very silent, I guess not a popular regime. I’m hoping Halaven does better, mo says he’s seen a good response from his patients...it’s too bad you have to fail on 2 previous chemos to qualify for coverage on this one up here

    Wishing the best, for both of us.

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  • JFL
    JFL Member Posts: 1,947
    edited September 2019

    Shetland, I did a two interim cycles (4 infusions) of Halaven and didn't really have any hair loss with cold caps, compared to losing significant amounts of hair on Abraxane with cold caps. On Abraxane, about half of my hair came out on day 21, although I was able to make it 6 months before resorting to a wig. I read a statement from an oncologist when I was on Halaven that said most of her patients did lose some hair but none of them needed a wig. Thinning for sure but not taxane-type hair loss. I do recall one person who lost her hair or most of it pretty quickly and then cut or shaved it off at that point but I believe she was on a higher dose than everyone else. I think it was Pam and she may still be on Halaven.

    If you haven't discovered Toppik yet, I highly recommend it. It covers all the thinning spots and permitted me to hide my Abraxane hair loss until I was down to about 20% of my hair left. I did start out with thick hair though and would wear my hair pulled back in a bun every day when I was experiencing the hair loss. The bun also served to hide a lot of the hair loss when wearing my hair down would have looked strange.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2019

    Thank you very much for that tip, JFL. I think I will start with Toppik on the too-wide part that shows too much scalp at the back of my head. That will help me avoid the pixie cut right now, and wait to see just how thin my hair gets. I had thought of a topper, but I’ll have to see if I can get a good enough color match. There’s an awful lot of hair in my hair brush these days. I imagine I will have a better idea of what is happening by the end of next week, a few days after my third infusion.

    I considered cold-capping but the cost, time, and discomfort involved sounded too much. I am using frozen gel socks and gloves to try and prevent neuropathy. Can’t cover neuropathy with a wig or scarf.

    Any others out there with a Halaven hair story?

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  • funthing42
    funthing42 Member Posts: 418
    edited September 2019

    Hi

    Guys just finished 2 cycles. My hair fell out much less than I expected. I had to stop my markers are up up up and away. Ugh.

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  • pajim
    pajim Member Posts: 2,785
    edited September 2019

    I was told my my MO and NP that it would "thin out gradually". That sounds like what's typical.

    And I just saw Susan02138 who has hair! A full head of need to go to the hairdresser hair. I didn't recognize her because last time I saw her she was on Taxol and had hair like mine (wispy). She's been on Halaven for more than a year.

    I'm a special case. [the number of times over the years my MO has said 'what the heck' or 'that's not nornal' can be counted on the fingers of more than one hand]

    Guessing it's person-dependent and who the heck knows.

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  • Boo123
    Boo123 Member Posts: 182
    edited September 2019

    Hi I have been on Halaven since January, so 12 cycles I think, my hospital uses the Paxman machine cold cap (I sm in the UK) every dose which has been pretty tough two weeks in a row of head freeze, but so far my hair loss has been minimal. Weirdly, I still have eyebrows, eyelashes, facial hair, leg hair etc. So I don't know how much Halaven is affecting my hair follicles. But I am too scared to try a cycle without the cold cap just in case my hair does fall out. My onc says that without the cold cap it would have gone by now. But I wonder why the rest of my body hair is still in situ? Anyone got any thoughts on that? Why would the chemo affect the scalp hair follicles more than other hair follicles?

    Boo


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  • Jaylea
    Jaylea Member Posts: 478
    edited September 2019

    Boo, good on you for 12 cycles of Halaven. I just finished cycle 5.

    It is certainly weird how hair follicles on different parts of the body react differently. I came off dose-dense Taxol when I started Halaven and was bald, no body hair, but did have eyelashes. Now, I have fuzz on my head, very little body hair, and no eyelashes.

    Good luck, Shetland. It sounds like you're prepared no matter which way the hair goes.

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  • SchnauzerMom
    SchnauzerMom Member Posts: 374
    edited September 2019

    My experience with hair and Halaven was rather strange. I'd read that there could be partial hair loss. I anticipated that my hair would thin uniformly. What happened was different! I lost my hair on top of my head,but retained the around my ears and nape of neck. Looked like Ebenezer Scrooge! Ended up back with my wig. Lost body hair, too. Don't think that's typical.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2019

    Or like Filch from the Harry Potter movies? My shower and hair brush have so much hair in them I don’t know how there is any left on my head. I bought the Toppik that JFL suggested. I knew when I decided to let my hair grow out two years ago that I would eventually have to give it up. Getting through the awkward mullet stage was not fun. After that I got to enjoy it for a while. Sigh. Thanks for your replies, everyone. I see now that I should not be hasty, but wait and see before I get it cut short. Anyone else want to share?

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2019

    susan_02143 chiming in. [Thank you Pam for upgrading me to 02138. Such a nice zip code that is!] As Pam mentions, at this point, cycle 22 of Eribulin, I have pretty close to a full head of hair. There have been times along the way where a small circle thins out, but that never lasts. I keep cutting it since I am not all that interested in the mullet-stage, and it just keeps growing!

    Back when I started all this, I had more hairs per inch than most. Does this matter? I have no idea. But, I would caution that cutting/shaving your head before starting this drug might be a bad idea. See what happens. Pam and I are pretty much opposite ends of the spectrum, so either one is possible.

    Best of luck!

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited October 2019

    Thanks for describing your experience, Susan. It helped me confirm my plan to get my hair cut to shoulder-length right now. Shoulder-length it ought to look a little fuller than it does now, and I can avoid the mullet stage if it eventually fills in again. I had only three Halaven infusions and am now on a chemo break because of a liver abscess, but still my hair continues to thin. Hair all over the pillow, sink, etc.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2019

    Hi ShetlandPony.... how is your hair-watch? Still thinning or have you stabilized? *susan*

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  • arolsson
    arolsson Member Posts: 118
    edited October 2019

    Hi everyone, dealing with the shock of an unexpectedly bad scan. Was on Kadcyla (TDM1) which was supposed to be such a wonder drug and with all the other regimes (paxclitaxol, NAB-pax, navelbine, xeloda..)have worked for at least 3 months. they all come with their unique brands of horrible-ness

    taxols: puffed upp on steroids, incredible fatigue, hair loss

    navelbine: fatigue, increased neuropathy

    xeloda (capecetabine): hand foot syndrome grade II, diareahha so bad I was basically housebound

    TDMI: bad muscle cramps, fatigue, neuropathy but otherwise the best I've had so far. Sad it didn't work.

    My next options are a study where Halaven is the control group and the "lottery winners" get a phase II study drug called syd985. I am very unmotivated to lose my hair for a third time (now sporting the mullet after the taxols thinned my hair out 50% despite cold caps.

    If each of these chemo regimens is only gonna work a few months, do I really want to lose my hair again for a year? It has made such a difference in my ability to work, managing depression and anxiety, and the way my children cope with my illness. not sure that the oncs really get that.

    Thankful for your input!

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  • Kayla250
    Kayla250 Member Posts: 201
    edited October 2019

    arolsson - sorry to hear about your latest scan. We have similar treatment failures, less TDMI. Nothing has gone passed 3 cycles.

    My hair only started becoming thin on Navelbine....I had major progression at which time they changed me to Eribulin, and immediately I had a major hair dump but I can't truly blame Eribulin for all of it because of the quick chemo change.

    My hair had always been the first thing people commented on when meeting me and has been my identity for a very long time, so I researched this one. Bottom line, really most do not lose their hair. Those who do, it tends to be an abrupt thinning which put me in panic mode but it.seems to slow and with the right hairstyle, at the right time, manageable. But with that said I read one woman lost all her hair but kept eyelashes and eyebrows and yet another thinned hair but lost eyebrows? I cut my hair short for now and will let it grow for a new style.

    I am very hopeful that this is the chemo to finally work for me. Come join us on the Halaven thread.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited October 2019

    My three doses of Halaven have taken about 2/3 of my hair. I’m off chemo right now and my hair is still coming out but not as much. It is too thin in places on my scalp to get by with Toppik, so I broke out the box of scarves, caps, and beanies. And since I do have some shoulder-length hair still, I can wear bandanas and have some hair showing while covering the balding places. And it’s thin enough to tuck under my wig if I feel like wearing it. When I am allowed back on Halaven, after my antibiotics are done, I suppose even more will fall out.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited October 2020

    I'll be starting Halaven soon and am dreading hair loss. It will be my fourth time to be in this club so I know what it's like. I'm not sure when I will start my first-round but I'll be back here for support. What's a Toppick?

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