If you ONLY received 12 week taxol did you lose your hair?
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I’d love dark and curly! That’s my natural hair. I’ve gone way to grey by 39 so my fingers are crossed!
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Just wanted to say a HUGE thanks, 1982 and others, for this thread. There wasn't anything like this before. As you said, the weekly Taxol people have mostly already done AC, which changes the game for hair. My MO claimed, with a straight face, that losing hair is a "rare side effect." IDK, maybe he meant "losing every last hair permanently" or something. The first thing the hospital pharmacist told me was "You're going to lose a lot or all of your hair." I know who I'm listening to…
This thread has alleviated so much anxiety for me. Just came back from my first dose, but I'll update as needed.
THANK YOU again!
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My infusion 10 is tomorrow and I think I’m ready to buzz it soon. I’ve lost 50% pretty evenly but it’s getting to the point I want to wear my wigs!
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Roo73,
So glad to help! I really searched too and just wasn’t sure what to expect.
SmoothOperator- no regrets here. I’m 100% happy it’s shaved. Unfortunately, I just can’t get use to my wig. I don’t think I’ll wear it. My scalp is so sensitive.
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my hair held out for ten weeks. But it’s finally to the point that I don’t quite have enough hair to comb over the bald patches. I absolutely have to honor that stubborn hair, but it’s shedding like falling leaves now.
A few words of advice to future Weekly Taxol only recipients who want to baby their hair as long as I did before buzzing/shaving out of pure stubbornness or thinking yours might not fall out.
Wash your hair as infrequently as possible. Do not blow dry. Use wide tooth comb infrequently to gently comb hair but often enough so it doesn’t mat. Sleep on a smooth fiber pillow case - nothing rough that will pull out hairs. Beware head coverings as they may pull out hairs - wear them in windy conditions. The side you sleep on will thin first. Don’t wear headsets for phone/videoconferencing because they will cause bald spots around the ears and across your crown
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I shaved my head after the 2nd treatment because I was getting much more stressed by waiting for hair to fall out and wondering when it would start, then by just making it my choice. I think it's starting to come out for real now though. I keep it shaved because otherwise I get some dry skin that looks gross and this lets me put lotion on easily. But I'm noticing increasing numbers of little bald spots where nothing is growing. Like bald freckles or something. Armpits and "down there" are going as well. Whatever, less maintenance.
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i was prepared to lose mine, gamzu. When it started thinning about halfway through, it was pretty even and didn’t show bald spots. But as it really thinned weeks 8-10, I kind of had what was left as a badge that my hair was as stubborn as I was and that I would honor it by letting it stay until it was time. And it was time when I changed my part to comb over. It was time. And I buzzed it a few days before week 11.
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SmoothOperator, "I absolutely have to honour that stubborn hair” had me chuckling for days.
I've been losing a bit more hair than usual since I started the Taxol, but now between weeks 3 and 4 some pretty serious shedding is setting in. Especially today. Time to go pick up some hats.
It's weird, but my whole life I've thought "There's no way I could possibly stand to lose my hair.” But now, I think it's been such a long haul with diagnosis and treatment that by this point I'm just like… whatever. Let's get it over with.
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An update for anyone who comes across this thread later: hair is gone. Third weekly Taxol was the magic number. It started coming out in bunches and was hopelessly patchy. I buzzed off the rest and it is continuing to fall out on its own, just with less mess.
I warned my co-workers, most of whom I hadn't told yet about the cancer. I also told my class today (I teach in higher ed). You know what, no one even blinked. They all have their own problems and in fact do not spend their time thinking about my hair and what I look like. So it was not the big stressful day I had imagined.
I feel a lot better having it done with.
I also showed my lovely, but young, MO, he of the “Hair loss is a rare side effect if you are just on Taxol + Herceptin.” He said, “Oh. Hmm. Er, right.”
Good luck to everyone on the weekly Taxol train.
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Three weeks post Taxol. I like to pretend I’ve got peach fuzz growth on my head among the remaining stubble that didn’t fall out.
Eyelashes still here. Eyebrows still here (looks a tiny bit rougher). Arm hair still here.
Even more pubic thinning. Half of my lower leg is bare while the outer half is smooth hahahahaha.
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I'm officially done 12 weeks taxol (as of 2 days ago). I've got eyebrows and eyelashes, and a bit of head stubble. Eyelashes and eyebrows have thinned, I did get myeyebrows micro bladed before chemo, so it's not bad.
I would have been see through thin with a bald patch on the top of my head had I not shaved it.
I'm definitely looking forward to some hair growth. I shaved maybe two weeks ago to clean up anything on my legs or armpits that were left and none grew back yet. I do have a tiny bit of pubic hair left but I don't need to shave bikini area either. I think I still have arm hair- but it was sparse to start so I can't see what I've lost.
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Noticed a weird gap in my eyelashes on one side this week, after Taxol #8. Maybe it's starting? I'm not sure. I also had bacterial conjunctivitis in both eyes this week so that's a confounding variable. The medicine for it does burn a little so who knows what it's doing to the surrounding skin.
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Gamzu, I noticed a weird gap in my eyelashes on one side and I’m 4 weeks post Taxol! Let’s hope it stops there for both of us
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update: I am 5.5 weeks post Taxol and my eyebrows and eyelashes have been thin and shedding for a week.
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Thanks Smooth!
I am 2 weeks and I don't have body hair growth but I def have hair coming in on my head. It's either blonde or white. I'm hoping blonde. I was dark brown before with a moderate amount of wisdom highlights. I'm not totally ready to be totally white, so hopefully either colour comes back or it's just blonde, light brown!
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six weeks out from Taxol and my eyebrows (which fell out three weeks post-Taxol) and scalp hair are growing back like gangbusters now. I can count the number of eyelashes I have on two hands.
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Im 6 weeks post taxol and my experience is very similar to SmoothOperator’s. Hair on my head is coming back- every day more and more. Eyelashes are pretty much all gone. I had my eyebrows micro-bladed so they look good but I can tell there are patches that are gone.
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9 1/2 weeks post Taxol. Hair is regrowing everywhere. Once all my eyelashes fell out, new lashes started growing in right away so I have completely regrown eyebrows (about 3 weeks to grow back in) and full eyelashes (short and still growing daily. Head of Hair is about a quarter inch although still a little thin at the crown.
My Achilles’ tendon and calves are tight. I’m not sure if that’s an expression of neuropathy as muscle weakness or Herceptin-related muscle soreness.
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thanks for the blow by blow! I'm starting taxol next week. decided against paying for the cold caps since never once has anyone complimented my hair. I will be a liitle sad cuz it's the longest it's ever been thanks to the covid shutdown- I've not had a hair cut since october 2019 & it's not that long so I imagine it will take forever to grow out again. oh well.
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I'm almost 5 weeks post-Taxol and my eyebrows and eyelashes have really bit the dust over the past week. A few still hanging on but mostly gone. Oh well. I was expecting it thanks to this board.
It will sound weird but I'm waiting a few weeks to start regrowing my hair and still buzzing it so it's even. I am really, really bothered by the idea of a patchy, uneven "Gollum" look, much more bothered than by being just bald, and would rather have no hair by choice for a bit longer than look like that. I guess I'm hoping if I wait some, it will recover more on its own and then regrow more fully. I can already tell that the stubble seems to be getting stronger and more widespread so I'm hopeful about this experiment; I'll report back on it in time!
Armpit hair and pubes have yet to reappear. Pubes maybe a little bit. I didn't realize how much overall growth was being stunted until the last couple weeks when I'm like, "Why am I suddenly having to cut my nails so often???" and then realizing that this was normal before and they were just growing super slow during chemo.
SmoothOperator, I'm also having a lot of tight muscles. Calves, yes, but also just everywhere. I think it's the Herceptin, because I never had any real neuropathy.
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gamzu, I suspect it’s a little due to Herceptin too.
Here’s the deal, I was 10 weeks out from Taxol and only doing Herceptin and the leg muscles from the hip to ankle were so tight and weak that I was having trouble going up stairs. Felt terrible and uncomfortable. Worse, I felt like I breezed through twelve weeks of chemo and NOW I was struggling. Irritating. I was stretching and trying yoga and walking and it really wasn’t helping
So, I asked my Oncologists NP if I could get physical therapy because I could barely walk and I had an appointment two days later.
Put two and two together when I was asked if I was on steroids while taking chemo. Of course I was! That was why I felt pretty good for three months. And now I wasn’t on them anymore and that’s why I was feeling crappy. All of the 22 weeks’s damage was catching up to me. i didn’t feel so bad about suddenly struggling.
The physical therapy two days a weekis really helping release those tense muscles and build me back up.
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12 Week hair update: I’ve got a good covering of hair- except a small bald spot like a baby on the back of my head. I didn’t know it was there but my teenager told me a couple weeks ago. Lol. Looks like it’s from rubbing? I’m not sure…. Hopeful it fills all in. My hair is coming back very dark or grey. It’s a real mix. I think I look a lot more grey then when it started. Also noted my body hair is thicker then it was prior. My legs and bikini are thicker, maybe darker, then I remember.
Otherwise I think in a month or two I’ll look like I have a real haircut! It’s a bit uneven, a few long hairs. I kinda wish I shaved it all again a week or two after chemo so it was all one length.
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Thanks 1982m for creating this thread and for all of you who posted your experiences here! This is so incredibly helpful!!
I'm doing the 12-week weekly Herceptin/Taxol infusions. I just had my third session today. So far no real side effects and my hair is not falling out in patches yet. It does seem drier and a bit thinner. But before all of this. I would shed a lot, like a lot a lot. I have long hair too.
I did notice last week after treatment 2 my scalp was tingly and a bit itchy. I thought maybe it was going then, but it's hanging in. Oncologist told me today she expects I will lose it. Like many of you, I kind of wish it would just go ahead. I don't want to be getting ready for work or somewhere I need to be and a noticeable chunk falls out. Plus, I hope the sooner it falls out, the sooner it will start coming back. I have a wig and caps ready to go. No body hair loss yet either.
On the topic of those tight leg muscles. I'm already having those. My calves get really really tight somedays when I'm out for my walk. My MO told me today it's likely I need electrolytes and magnesium when that happens and drink a sports drink to replace it. I will try that for sure. I'm also concerned what happens after the steroids. I think they're a big reason I have been feeling so great with tons of energy. I have rheumatoid arthritis so I understand daily fatigue and pain and deal with it a lot. I've been off my RA meds since this started and feel great because my rheumatologist said the steroid they give me is actually a med used for RA. I'm going to ask if it's okay for long-term use and if I can stay on it after the Taxol is finished and I'm just doing my year of Herceptin.
Anyway, thanks again for all the updates! If anyone else has experience with this, maybe we can get this thread going again by posting our updates as they happen.
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I’m glad it’s helpful Alleycat!
I’m 5 months out now and my hair is coming in a ton now- no bald spots. It’s coming in VERY curly. It’s also coming in much more grey…. I do notice that some hair that initially was coming in grey is now coming in with more colour, so now I have some curly grey tips. lol. I have enough hair now that people wouldn’t guess I had cancer. My hair however is significantly more curly then before (I had curly/wavy hair before).
Good luck on your treatments! It’s crazy how intense but also how quickly it flies by.
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my hair is also back. 2-3 inches long and very curly too. About 40% of my lower leg hair never came back and probably won’t either.
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Yes. I was told it was likely. My treatment started August 14, 2021.
I stopped by the place that cuts hair at COH. I made an appt as suggested too after one week of Taxol/Carboplatin. Cut mid back to above shoulders, first time in 40 years. After 2nd infusion went wig shopping. Bought curly and should cut. My older sister went with me. At home I asked her too cut my hair shorter. Headcovers.com.
I had 2 beanies to start, since bought more. The rosette is my favorite. As to hair loss, I began loosing more in the shower after the 3 infusion. Got a jar and put it in there. Morbid? No. It is my hair until I grow back my home. Within a few weeks, most was gone. I was amazed how easy it just fell out my signature red hair gone. I live alone, so only my older sister say me and those at COH.
My hair is about 1 inch today, 5 months after chemo. I always thought one day I would cut my hair. I was 60! So, the universe gave me that day. My final wisps left in November. For a while. I was the fellow with a comeover. My one wig and beanies help me walk through it. I finally can look at myself and see not the Kathy with red hair, but the Kathy with little hair. It is OK!
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I also had 12 weekly doses of taxol plus Herceptin (kanjinti) every three weeks. I did not lose all of my hair. It thinned significantly, but I kept my eyebrows, eyelashes, arm hair. Even shaved my legs a couple of times - but not nearly as often as before chemo.
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Farmersville,
Thank you for the reply. Funny about side effects. I have posted before that once I hit 60, I wondered if I would cut my long red hair. Many women I knew went short at that age.
BAM! Breast cancer and chemo. Mine dropped 2.5 weeks in. Eyelashes and eyebrows thinned. I had red hair, so. All was light. Legs, under arms and privates gone.
I still had my arm hair and my face hair is more noticeable.
It is good to hear it is not the same for all.
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I had Taxol/Herceptin (Kanjinti) #4 on Monday. No major hair loss yet. Nurse Practitioner said it was possible that I don't lose it and that she's had patients who have not lost all their hair on the weekly Taxol.
Then, I met with my breast surgeon today. He's a very straight-forward kind of person (I've known him for years - since before my diagnosis and outside of being his patient). When I mentioned no hair loss yet and who knew what would happen he said he expects I will lose it and don't get my hopes up too much. He explained (hopefully I've got this right or at least close to it) that the cells in our hair follicles actually only sort of activate every 4-9 weeks or so as they run through a cycle. So depending on where you are in that cycle of hair growth, the chemo wouldn't necessarily affect/kill those cells until the cells are active. He is bald, so he said he'd done a lot of research on trying to grow hair over the years
I guess for me that means the hair waiting game continues...But on the good side.. I'm now 1/3 of the way through chemo YAY!
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I agree alleycat5.
My combo was taxol and carboplatin. That combo may have taken over my follicles and took my hair. I love that your doctor listens. Mine do too.
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