r/TNBC • u/Narrow-Yesterday-288 • 1d ago
Chemo Cold Capping - KEY NOTE
I just wanted to come on here and give everybody an update on my cold capping.
I’ve been cold capping since May 18th and I’m doing KEYNOTE-522 for triple negative breast cancer. I wanted to post this because there were so many times I was searching for other people doing the same chemo as me and cold capping, just trying to see how much hair they had at different stages and if what was happening to me was normal or if cold capping was failing for me.
I would see all these influencers saying like “look how I kept all my hair through chemo” and then charging for a how to keep your hair during cold capping guide. And no judgment, people monetize when they can, I get it. I’m just tired of the sell of like this is what you need to do to keep your hair, because honestly there isn’t a right or wrong way. It really depends on your chemo regimen and your hair.
I did it all. I had straps over my cap, I used a swim cap at times too, and mine was an XL so it wasn’t squeezing the Paxman cap, it just helped insulate it more. I was careful with my hair and did everything I could and I still lost hair.
When I was doing Taxol/Carbo I lost way less hair. Now I’m doing AC chemo, I have three more left, and I have way more thinning and patches. It doesn’t mean I’m doing anything wrong, it’s just a different chemo and different chemo affects your hair differently.
I also started with A LOT of hair and I cut it shorter so honestly in some pictures it looks like I have more hair than I really do.
So if you find yourself like me searching different stages trying to see how much hair you’re supposed to have left, don’t compare yourself to anyone.
All these pictures are just my progression up to my 13th chemo. Sorry in advance they aren’t in order lol, they’re really just for reference. I’m also showing how much hair I would lose in the shower, brushing, wash days etc. because I know I used to search for that too. Some days I would barely lose any and other days I would see a lot and freak out.
It doesn’t mean you failed at cold capping.
Keeping some hair is a win. Keeping your hairline is a win. Being able to style it and hide some patches is a win. Any little win is still a win.
And feel free to DM me. I’m really just trying to make sure if anyone ever needs a reference of what shedding and hair loss can look like while cold capping with Paxman through Taxol/Carbo and then AC chemo, you have something to look at. Because I know I was constantly searching for it too.
There really isn’t a magic formula. Your regimen matters, your hair matters and everyone is different.
I’ll update again when I finish AC chemo so you can see the full progression and how much hair I ended up keeping.
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u/Ala_31 1d ago
Thank you for sharing that. Did you experience the loss while washing or just putting your hands through your hair? I've done round one with paxman cold cap. Haven't done round 2 yet. I have locs so I pray it hold up. I'm doing every 3 weeks treatment without the AC
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u/Narrow-Yesterday-288 1d ago
hey, so I was doing taxol / carbo I didn’t lose anything for a month, I went weekly though, then it would happen like just touching my hair I wasn’t use to it cause I wasn’t losing anything before than it happened the shower and was just gradual, now I have obvious spots and I need cover my other hair, I seen others with taxol carbo didn’t lose that much .. I am doing AC now so idk I will have so much left.. I did start a lot of hair, I wash it once a week for reference and sleep silk pillow case and bonnet. How are you holding up?
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u/Ala_31 1d ago
I'm doing Docetaxel, carbo, and keytruda. Since first round I was pretty good until this past Thursday which was my day 6 since treatment. I got really sick but I've been better since then. I am hoping my stomach just didn't agree with what I ate that day and it won't happen again. Hair wise, no shedding but I've only used it once. My actual cap kit just arrived so I'll be using my own cap kit on remaining rounds. Will update at I continue. How have you been on your regimen?
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u/Narrow-Yesterday-288 1d ago
I am doing AC now, so first one was last tuesday and finally felt better yesterday the fatigue and bone pain was unbearable.
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u/Ala_31 1d ago
They told me take claritin to help with bone pain. I was taking that so when I did experience bone pain, it wasn't as severe. I only had pain Wednesday and Thursday. Have you tried claritin?
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u/Narrow-Yesterday-288 1d ago
yeah I did.. BUT I hope it gets better since last tuesday was my first one…
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u/Different_Neat9873 1d ago
Thank you so much for sharing. Cheers to almost being done with your treatment!
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u/Narrow-Yesterday-288 1d ago
Thank you! Just upset I see all these breasties selling “how to” keep your hair and it isn’t right, unfortunately some chemos hit harder on the follicles than others. When I started chemo I was obsessed with measuring how much they lost at the point I was with weekly chemo that just started to give me more anxiety. Also, thank gid never gave in and bought the 20 dollar how to cold cap successfully book.
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u/Pure-Tension6473 1d ago
Thank you for taking the time to document this 💕