Hair Loss After Weekly Taxol: My Experience

Currently waiting on my Oncotype test to come back and learn if I have to do chemo. Thanks for sharing this. I’m devastated at the possibility of loosing my hair and it’s nice to know you’re here and understand.

Amanda - Now that I’m on this side I’ll share that for me what caused the most anxiety was the anticipation of it all falling out. I read over & over that with weekly taxol was a toss up on losing hair (vs every 3 weeks of something like Taxotere - pretty much everyone loses their hair at 10-14 days post first treatment). I sat in the chair while my hair stylist, who’s also one of my best friends, shaved my head. I was terrified, tense, curled up in a ball in the chair, eyes squeezed shut wishing this wasn’t my reality. But within two hours of shaving my head the weight & anxiety was gone. I prayed for that burden to be gone & it was such a beautiful space of “okay this is where we are & we walk - face forward, chin up”. I’m thinking of you & here if you need me!

Did you cold cap? I’m probably going to be doing chemo (4 rounds of docetaxol and cytoxan). Did you get neuropathy with taxol?

Rebecca - I didn’t cold cap. I know a handful of people who have done that and their success rate is kind of all over the place. One of the best results I saw, she still lost over 70% of her hair. For me when I evaluated the cost, the level of effort required to get the cap on and off, as well as knowing I would still lose most of my hair anyway, I decided against it. I used ice mittens + gloves to negate the chance of neuropathy. I’m so glad I did even though that part was really hard! I’ve always been a person who would rather be hot than cold! I’ve been talking to quite a few people who suffered temporary & permanent nerve damage from the chemo. If you can, grab the ice mittens + socks on Amazon plus an extra set of ice pack inserts for both. I put them on 15 minutes before my chemo treatment started & would wear them for as long as I could. Then I’d slip them off for a few minutes & put them back on again. On this side of things now, I’m glad I did it! But I won’t be visiting Alaska any time soon. xx

The place I’m going to do chemo has a dignicap with basically makes it so you don’t have to constantly change the cap. I’m going to try it. Blessed my insurance covers it. My nurse navigator told me the gloves and sockets on ice are a must so she’s already sent that info to me as well. Thanks for your story the neuropathy scares me as my dad has that and it’s awful

My hair was worn shoulder length for most of my adulthood. I have dozens of scarves, 6 new baseball caps and 5 wigs! All gifts from my friends and family since my diagnosis. It is summertime in CT and bald is so much more comfortable than wearing any of that headgear! I do wear earrings though to help my feminine vibe. It's just a matter of getting used to! Amazon has amazing ready-tied scarves. Search under chemo scarves. Really cute patterns when you need a fast head cover.

My chemo was Taxotere and Cytoxan. I used a cold cap and found that i lost between 50&60% of my hair but that was enough for me to feel more like myself. If people didn't know me, they wouldn't hanve known my hair was thinner. My insurance didn't cover it but the place my sister had her chemo had a grant sp patients didn't need to pay so be sure to ask! I'm a fan of cold capping but it's not for everyone. You do you!

Anyone share experience on Arimidex?

Lisa K Post your question about arimidex as a separate post rather than under a question about chemo.

@lisa k I’m on this one and it’s been ok so far!

Cold capping was a game changer for me!!! Only about 40% hair loss and no one would know but me. It’s def a process, but like anything else, you make it a routine and then it’s easy. It was paid for by my infusion center , Paxman was the company. Any questions, please reach out, glad to help!

I've been doing the taxol with carboplatin weekly and finished #6 of 12 last Wed. 2 weeks to the day after I started this regimen, my hair was falling out in handfuls. 2 days later I shaved my head myself, then my husband helped me clean up what I missed. I probably could have waited a bit longer to shave it but for me, it was one small thing I could take control of. I have always had great hair but I am embracing the bald right now. I wear hats and scarves, especially at work (I'm a nurse), but mostly I go without since its summer and HOT!

I guess I’m sort of a party pooper bc bald will never be beautiful to me! It just reminds me of what I lost. I had waist length hair it took me ten years to grow and I’m 71 now. I had a dream my son wanted to buzz me like he does himself for rebar. I woke up in a panic attack and realized being shaved was scaring me more than being bald. I made an appointment at my Mammas beauty salon. I washed and braided my hair for the last time. I had Lilly cut off the braid, put it in a plastic bag and then in a manilla envelope. I

never saw it again and donated it . Lilly made me a pixie with the rest. I played with that until second week of chemo where I lost the rest. I went through a lot of itching and irritation but my daughter bought me a bamboo sleep cap which was really soft. I bought a bunch of wigs and headscarves. I had a lot of ski caps so i wore them until now when it got hot. My hair has grown back but no chemo curls and it’s platinum silver. It’s also very see through in the back but I don’t want a topper bc they’re hot and expensive. I miss my hair every day. I don’t know if I’ll get to grow it back but I guarantee you I will never let it be an idol to me again. I’m cancer free and that’s worth more than ANY kind of hair! Godbls

They have a cooling cap now that helps with hair loss

Go Courtney, that's great!

Hey Amanda, just wanted to tell you that my hair started growing back 2 weeks after I finished chemo. I have a nice thick head of fuzz, 5 weeks post chemo! Chin-up and focus on getting better! You'll get there.

I just found out yesterday that I will need chemo after surgery (I'm HER2 positive), and I didn't even ask if my hair would fall out. I think I'm more concerned that I will "survive" the other side effects. LOL

Hi Courtney, I have completed 8 out of 12 weekly Taxol treatments. After the 3rd treatment my hair started falling out. I ended up shaving it off rather than waiting for it to keep falling out. I am wondering if anyone had issues with bleeding in the nasal passages? I don’t get nose bleeds like it is dripping but every time I blow my nose it is just blood. I did look it up and it is a side effect of the Taxol.

I have had issues with nosebleeds too (on taxoll, carboplatin & Keytruda.) Check with your provkder but I have used afrin (clamps the vessels down) to help stop the bleeding and then bacitracin or Ayrin my nose to soften and moisten the nasal passages. My nose seems to be doing a lot better with this. No hair in you nasal passages makes them drier.

My insurance wouldn’t cover a cold cap and my onco dr said it wasn’t worth it. I didn’t get a nurse navigator either. So much for Medicare. But they did cover some of my treatments with a minimum copay. So I’m not complaining. I’ve seen the nightmares out there and I have a great team!💕

I wish I'd found this app sooner. I am getting my first dose of chemo today and haven't had the guidance I needed from my MO. Im gonna have to scramble and hope I can find ice mitts and socks before then.

Beatrice you can use freezer ziplocks with ice in them. That's what the hospital offered me for my fingers and toes during treatment. I wasn't consistent and still got neuropathy on my fingers and toes but it started lessening 2 weeks after I finished chemo, thank goodness. It's been 3 months since I finished chemo and now only my toes feel like there's grit in my shoes when there is none; it's lessened every day though and soon it'll be gone. Carry some hard candy or gummy sours in your bag, it will lessen the nausea if you get it.

Stephanie W, how are you doing? I just finished 9 out of 12 carbo/taxol.

I'm done 2/12 of my Keynote 522 treatment (Taxol, Keytruda and carboplatin in varying weekly doses). I'm going back and forth with cutting my shoulder length hair since I'm not sure if I'll lose it. I don't think I'm ready for such a dramatic physical change yet. I'm not against cutting/shaving it, I just feel like I should wait to see what happens.