Cold Caps Users Past and Present, to Save Hair
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Guys I'm 1 day PFC after 4 rounds of tc! Last cold cap done!! I'll keep in touch with ya all and let u know how post shedding goes! I'd love if anyone is still active to let me know when your shedding slowed/stopped!
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JLove1821 - Congratulations on being done!!! Such a relief to send those caps back! I wish I could remember exactly when my hair stopped shedding or when it really slowed down, but it happened gradually. But I will say that it took probably 2-3 months for it to be noticeably less shedding. I continued with the very gentle treatment - minimal combing, 1x per week washing, no coloring for 8 months, though I did get a haircut at 6 months. Then after that for a long time I hardly shed at all - maybe not even a single hair. Now, 12 months PFC, my shedding is more like it was before chemo.
So while you may continue to shed for quite a few weeks, keep in mind that your body will start recovering and you will start feeling better way before your hair does.
I am 1 year PFC - today!
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I’m happy reading all the successes!
I have been mia here for a while. I got very sick after chemo round 1 on April 4th. I am 16 days post chemo and scalp cooling with the Paxman system. I started to shed today already! More than usual but still nothing crazy. Fingers crossed! Keep up the capping!!0 -
thanks go kale for the advice! Any alums go in pools after.. since we are coming up on summer .. i plan in taking my kids swimming and just gonna try not to get splashed much. Any advice?
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Jlove - Congratulations for being done!! Great news!!
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Jlove - congrats! That’s a great milestone!!!
Maybe a loose bandana or something while in the pool to protect the scalp from the sun too? I am 19 days post my first TC chemo and shedding nests of hair. I keep finding large dread type knots in the bottom ofmy hair and clumps come out when I detangle them. Ah!
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Jlove - WOOHOO on being done! What a great milestone to pass, and also the capping accomplishment!
Toughcookie101 - I don't know what your hair length or type is, but guessing longer, thick & curly.... Mine is fine and only wavy, so I don't have any direct experience with bad tangles, but maybe one of the other ladies here do...
Couple thoughts from reading this thread for so long:
- Minimize how much your hair can move - when you shower, just let the water run down from the top of your head while you stand. DO NOT bend down and flip your hair over (lots of ladies try this to keep their body out of the tepid water, but it really tangles the hair). Likewise when wrapping your hair in a light soft towel to pat it dry - just do it while standing with your hair hanging down naturally
- use a spray, leave-in conditioner/detangler after your shower and also if you need to work on tangles (I like Kenra's professional daily provision spray conditioner)
- keep your hair in loose French braids or something similar to try to prevent tangles. Does your hair tangle all the time, or are there things that seem to make it happen (after shampoo, sleeping, being outside/wind, working out, etc?)
- If you get bad snarls, consider cutting the tangled ends rather than losing a bunch of hair from the root by trying to untangle it. I know it's hard to cut into the length you are trying to preserve, but for me, it'd be better to have the hair stay on my scalp... it may be shorter than usual, but it will be longer than if it has to grow from scratch!
Ladies - any other suggestions???Toughcookie - I know it's hard to deal with the shedding - especially the first one - but you can do this!Hugs to you!
Willow
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thank you everyone! Now I just need patience!
Toughcookie- the same thing happened to me during my big shed. I was trying to leave it alone and not brush it but I actually think for me that caused more tangles. I had really thick med. length hair. I did have to cut it like Willow mentioned bc I could not get some of the knots out. It was really sad to cut , but now I'm glad I still have that half so I'm not starting from scratch. I think the big shed is the hardest part for all of us, hang in there ! Xo
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I’ve completed 2 of 4 TC treatments with the Paxman cap. I started losing a lot of hair around day 19 also, but then it slowed down several days later. So hang in there. I bought a silk pillowcase which surprisingly minimizes tangles while I sleep. And I brush my hair before I shower to minimize tangles.
My nurse told me that even if I end up with bald spots, they will fill in quickly. Without the cap, new hair regrowth takes several months to begin. Just remember, you should be bald by now
Good luck.
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Thank you everyone!
Willow, thank you for the tips list. My hair seems to tangle all of the time right now, however more at night. I think I am just losing more hairs while I sleep and they are getting caught in the ends. I have been gently detangling those knots and removing the nests with my hands. I am using a silk pillowcase. I also bought a site night cap to sleep but I haven't used it much. I fear scrunching my hair in there (although it is loose) might not be the best of ideas. I had quite long hair and cut it post-op to around my shoulders. It is fairly fine and wavy. I might have to cut it more. I will also become more diligent with the leave-in conditioner.
Jlove, I am trying to brush gently once a day. Thankfully I have been able to get the snarls out so far. We'll see! I will consider cutting my hair shorter if I have to, but for now I'm going to wait and see. I'm so glad you are done and had success!!!!
I'm hoping this is the biggest shed, however I know I might have to expect one after chemo #2 as well. I got really sick after chemo #1 and ended up in the hospital for five days, so chemo #2 had to be delayed by a week. Curly-head, love the name! Thanks for the hope!
I am hoping my shed will slow down soon too. It seems it already had a bit, I only judge that by the fact that my nest of a knot this morning was smaller than yesterday, haha. It's true, I should be mainly bald by now, and all things considered I still have a fair amount of hair, I think. There were no Paxman machines in the City where I live, and not many people seem to cold cap. I had the machine bought in just for me to rent from five hours away, so not many people are familiar with it here. Which also means I'm on my own using it next time (I do have a helper however, and the company has been great!). It is nice to hear that the nurses say the bald spots (if any) will grow back faster. Did you have a shed after round 2 as well? 0 -
thanks for that curly-head, I needed some reassurance. I ended up with a bald spot on top at the big shed on day 21. But I continue to cold cap. I still shed daily but not as much...my hair has gotten really thin...but it’s still there
Jlove1821 - congrats on being done!!
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Hi All, this is such a helpful discussion group. My MO office has a biomedical freezer and mentioned that cold-capping is a possibility, but that is the extent of any help from his staff.
With the BC diagnosis last November, the BMX in January, and a partial nephrectomy in March, it seems as if this journey has been constant surprises. Just the other day, MO called to say I was scheduled to start TCx4 tomorrow. I'll be doing the Penguin Cold Caps, which thankfully arrived yesterday. I'm anxiously hoping that my gel mittens and booties arrive today or I'll be taking along crushed ice bags.
Question: I've watched multiple videos about cold caps, but they seem to focus on putting on the caps, without talking much about protecting the hairline, ears, and nape of the neck. Do the pantyliners actually stay stuck on and how do you cover the ears?
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Hi Maggie2-I am also using penguin cold caps and have already completed 4 of 6 infusions. I use the panty liners they included for my forehead and to protect my ears. They work great. They stay on and really help with the cold. My husband puts them right up to my hairline on my face. He cuts them and puts them over my ears. It does make it even harder to hear but my my skin and ears have not gotten frostbite yet.
Make sure your helper practices putting the caps on you before treatment. It takes a few run throughs to get the caps on right. You may also want to consider taking a pain reliever before you cap. It really helps with the discomfort. Good luc
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Rockcity, thanks for your suggestions. My husband and I practiced a bit last night and will do so again tonight. I'm skipping using the freezer at the MO office and doing the dry ice/cooler. Penguin sent just 4 caps, saying that with dry ice the caps get much colder and more quickly than with the freezers. They told me the caps will only take 50 minutes from room temp to reach the desired temp. Have you found this timing to be about accurate? I'm nervous that the caps won't be cold enough in such a short time.
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maggie2-50 minutes will be fine to cool the caps with dry ice. We find that they actually get a bit too cold and my husband has to leave extra time to let them warm before putting them on me. We purchase fifty pounds of dry ice for our cooler. I also have four caps. With my treatment I wear the caps for 7 1/2 hours
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Rockcity, thanks for your quick reply. I have more confidence now in the schedule that Penguin sent.
I don't know how I would have made it through this much of the cancer journey without all of you wonderful women sharing your tips, experiences, and positive vibes.
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I tried posting earlier but for some reason it didn't work. Maybe I posted it on another thread in error? Chemo brain?
I am day 22 post my first of four cycles of TC chemo using the Paxman machine and am still shedding hamster sized clumps a few times a day. I thought the shedding had slowed down yesterday but back to heavy shedding again today. I don't have any real bald spots yet, besides in front of my left ear. I swear the left side of my head is shedding way more than the right. However, I still have hair!
I am afraid to wash my hair during the big shed. I am still going to go with the thought that it's working. Did anyone wear a sleep cap while cold capping?
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Good morning ladies!
Woken early by a hot flash and decided to check in here since it has been a few weeks. I am currently 12 weeks PFC now and believe it or not, still shedding! I don't know where all the hair is coming from! And it almost seems like it slows down, but then around every 3rd week the shed gets heavier as it did during chemo....any other PFC gals notice this? I also wonder how much my anti-hormonal meds (Anastrazole) plays into it. Hoping the shedding is about done, but I know others that kept at it for 6 months. 🤞🏼🤞🏼
I go for my first hair cut in 8 months today! I'm nervous and excited at the same time. I will have them do a dry cut to be safe. Hoping they can give me a style that flatters my thinner locks, and I purchased a halo extension to add some volume that I am asking them to cut and blend with my hair as well. I will be sure to post a pic!
I'm so thrilled with how well everyone else has been doing through their treatments and capping....and continuing to support one another in such a positive and uplifting way!
Toughcookie-- I hate to hear about your tangles, and def recommend the leave in condish to help soften your hair and prevent matting. I used a silk pillow case but wore a hairnet rather than a cap to sleep in my efforts to keep my thick curly hair from matting. I also combed it out twice a day even though I hated seeing strands of my hair in the sink each time. I also wore a French braid quite often during the day. I used Penguin and did feel like I lost more on my left side than my right, and I did get a bald spot above my left ear and around the nape of my neck but I could hide those with hair whether down or in braid. The first shed is the worst just like everyone says, so hang in there because we've all been there! I've easily lost 50% of my hair, if not more at this point, but I would do it all again hands down!
Maggie-- Wow! Quick chemo start! Sure glad you had the caps on hand and were ready to go! Your journey sounds similar to mine where it seemed to take forever from diagnosis to when I began chemo. Today is the big day and you've got this! 💪🏼😊I am glad you are using dry ice with PCC as it will certainly cool the caps faster. Because of my thick hair, we aimed for -35 on my caps and we found it did take longer to get the first cap to temp, so the first time the nurses kindly went along with our learning curve, but I kept notes and added in an extra 20 mins on the ice prior to start for future infusions. Pads worked great for my forehead.... my own hair kept my ears from getting cold.... I wore a hairnet under cap so curly hair did not get caught in Velcro.... and be sure to take a couple ibuprofen and, if you have, an Ativan in the morning of each chemo. I too had TC (6 total), and had not problem with neuropathy, but did place hands in cups of ice and toes in bags of ice-- oh, and chewed ice too-- that was one chilly hour! Lastly, I kept my caps on an hour longer than was required just to give an extra umph with my thick hair. Wishing you the best of luck today! We all look forward to hearing how it all goes for you! 👍🏼🙏🏻😃
Going to try to get a few more zzzzzs.... I'm a couple of weeks into rads and need to try and get my body ample rest. Cheers to everyone and be back with haircut pics in a couple of days. Wahoooo! 😁🦋💗
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MamaFelice, good luck with the hair cut today. I'm so ready for a refreshed styling (won't even go there with regard to coloring), but I know I have to wait at least another month+ as tomorrow will be *just* 4 weeks PFC for me. Like clockwork, the next big shed from my last chemo treatment started a week ago, and it really hasn't let up yet. On top of everything, my radiation has been postponed sort of indefinitely but at least for a few weeks as my earlier strep infection (just below the incision line from my lumpectomy and re-excision) reared its ugly head again and in draining, created an open wound that first has to heal from the inside. So, per the suggestion of my breast surgeon and radiation oncologist, I contacted my MO regarding the timing to start hormonal therapy and now I have my first prescription for Anastrazole waiting to be picked up at the pharmacy. More than the medication itself, I'm hoping it doesn't exacerbate the hair shedding just as I'm waiting for the new hair to start coming in. Yikes!
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hey all! Never knew what cold caps were until I was diagnosed. My infusion center had a freezer which was wonderful! They are kinda heavy so it hurt my neck abit but didn’t really matter cuz I had chemobrain anyway and my whole body hurt. I lost at least 1/2 of my hair but it just looked really thin - I couldn’t wear it down though (it was too thin at the en) and only one or two tiny bald spots which were easily coverable. I can’t complain though I never had to wear a wig and I should have been bald after my first treatment. Make sure you cover your ears though!!!
Would I do them again??? Yes yes yes
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Schlomit!!!! So great to hear from you!! Wow-- are you really 4 weeks PFC already?!! It is all downhill from here....once those 3 weeks post infusion are past you will only start to feel better and stronger with each day! Stinks about the infection on your incision acting up again. You def need to get that well-healed before venturing into rads. I hated that my rads got delayed so much while we waited on insurance to clear the proton therapy (I'm currently in Houston at MDAnderson receiving proton rads treatment)-- but I loved having the extra time to feel better and get my energy and strength back.
I am soooo thrilled with my haircut!!!! The stylist took almost 3 hours (no washing, just cutting!), being so gentle with my hair. He did an amazing job blending my hair in with the halo extension. With halo I feel like I have my old hair back! I'll report back in a couple of weeks on how shedding is going. I heard how the Anastrazole can contribute. I hope you have no issues with it. I had some weird muscle aches the first couple of weeks but it has all since tapered off. Keep posted on how things go with your infection.
Maggie-- hope today went well and the treatment and capping was easier than you had anticipated. One down!! YAY! 😃👍🏼
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Ooops! I forgot to attach the pics....
Here is the back where you can see how well he blended my hair with halo extension....and can see what an amazing job Lorichelle on Etsy did making my halo and matching my hair color!
Front/side angle-- pretty awesome!
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MamaFelice - i would never guess you had been sick, much less gone through 6 rounds of chemo! You look AMAZING!!!!
Hugs!
Willow
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MamaFelice, you look great!!!! If I come out of this looking half as good as you I'll be dancing for joy. And thank you so much for the info. I went and bought a lace hair net today. My hair is also curly, so I'm hoping this helps with some of the tangles while sleeping. I wake up to almost no hair on my silk pillowcase, but a matted knot pooled in the bottom of my hair. Thankfully I have been able to untangle them with my fingers, but I'm only 1 chemo infusion in (at day 23). Chemo #2 was delayed by a week (to May 2nd) since I got very sick after chemo #1. Your messages always put a smile on my face. All of these messages and women are truly a blessing in this unfortunate situation we are all in.
I read a blog of a woman last night who also used the Paxman system, like I am using, and she was in between sizes like me. They gave me a medium silicone cap with a small external cap to try and accommodate. Anyhow, the woman in the blog got the larger size silicone cap, and put a swim cap over the silicone inner cap to snug it up a bit more. I wish I had read this before! I went out today and bought a swim cap for round 2! I will keep posted as to how it works after infusion #2 next week. Next week will be chemo half way point, woot woot!
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wow mamafelice, looks awesome! Can u post a before pic?? Is the halo comfortable to wear? I have some bald spot at the top that I cover with toppik but it's mostly the back thinning areas that bother me.. I wonder if a halo would work ? Do you mind me asking how much it was?
Schlomit- yay for being 4 weeks out but boo to still shedding and having an infection! I'm just 1 week out but hoping it doesn't last 2 much longer than the 6 weeks.. I'm sick of pulling off hairs from laundry and sink!I hope the infection clears up quick for u so u can move on!
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MamaFelice, your hair styling is awesome!
Thanks, all, for your encouraging thoughts. Yeah, the infection really sucks, especially since my surgeon (who is treating the infection) has banished me from the germy gym and, effectively, my personal trainer. Given the chemo's impact on my joints, walking isn't a great substitute for building back my cardio endurance, and the stationary bikes are in the gym. I'm hoping I'm permitted back next week.
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MamaFelice, beautiful! You are an inspiration for us to keep up with the capping!
ToughCookie, Yesterday was my first TC treatment. We also found that the caps needed more than the recommended 50 minutes to initially get cold. Like you, my chemo nurse was very patient and willing to hold off on the infusions until my scalp was chilled enough. After that initial cap cooling, we found that the caps got too cold in the time frame. Luckily, my husband has strong hands and was able to keep kneading the caps to get them to temp. Traffic was bad coming home, so we had to stop twice for switching out caps. I'd like to see if we can't move our next appt up a bit so we aren't in evening rush hour.
Thanks again to all of you for the support and tips. It was nerve-wracking going in for the first infusion, but it went better than I anticipated! Now it is waiting for the first shed. When does this usually occur?
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Maggie, one infusion down!
woo hoo!! The first shed seems to start somewhere around day 18. I started having large clumps fall out around days 19-22. I am day 24 now (chemo #2 is next week), and my shedding has slowed down a bit but I am still shedding clumps, but smaller clumps! I'm hoping the shedding will keep slowing down.Everyone is somewhat different in the shedding time but around day 18 seems like a rough indication of when the shedding may start. Sending you good hair vibes! 0 -
Mama Felice~your styling looks amazing!! You truly are a cold cap success! I am almost 15 weeks PFC and I bet the shedding didn't stop until 2 weeks ago, so hang in there!
Cold Cap Girls, I did Dignicap and had shedding quite around the second chemo and by the last day of chemo in January, I had a bald spot on top that I got quite good at covering up. But, at 6 weeks, I had some serious hair growth coming in on top and now, after almost 15 weeks-I've got 3" on top, I kid you not! I have been taking a bunch of supplements-anything to help hair and help my health.
Girls, I'm so glad that I cold-cap, even though I knew I lost hair, nobody else seemed to notice.
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Hi,
My wife is considering the cold cap. She will have her first infusion this coming Thursday.
How well does this work for women who may have thin hair from previous chemotherapy (We're dealing with a recurrence from 16 years ago and it never came back fully)? Also, Are any of you over 60 years old? My wife and I are 62.
Thanks,
-Larry
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