Cold Caps Users Past and Present, to Save Hair
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Your new hair looks cute, I’m just starting my chemo and I’m looking to use cold caps. What are the ones you used
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HI
Good luck with your treatments. I am using Penguin Cold Caps. I didn't have access to the ones offered through hospitals ( (Digicap and Paxman) so I needed to go with a company that could provide them to me.
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I am also thinking of using Penguin, were they difficult to use
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Hi NewfromNY,
I'm using Penguin Cold Caps right now. They're not difficult to use, but there are a few extra steps involved. You have to get dry ice beforehand, you have to change caps every 25 minutes, and you do need someone to help you change the caps. That helper also needs to be able to check the cap temperatures about 5 min beforehand and make any adjustments as necessary. Since you need to cap for 3-4 hours after too, it can make for a long day.
Edit: I just noticed your diagnosis. So you'll probably be doing the 6x TCHP every 3 weeks like me? If so, yes, the infusion days are pretty long, but I have the nurses do the T and C first, so I can use the H and P as part of my 4-hour post/chemo cooling time. It usually means that by the end of infusion, I might have to do one or two more cap changes, but then I'm done.
That said, once you and your helper get into a good groove, it's fairly seamless.
It depends on where you are, but in my geographic area, there are independent Penguin contractors who you can hire to cap for you for $500/session, and they'll bring all the stuff you need (including the dry ice), so you don't need to rent the caps. Depending on your infusion schedule and how long your treatment is, that may be a cost-effective alternative to doing it yourself.
Hope that helps!
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NewfromNY, I also used Penguin Cold Caps, as the hospitals here don't offer the Paxman or Dignacap. I will echo everything that MtKushmore said about Penguin and the process. It can seem overwhelming at first, but after changing out just a couple of caps, it becomes a routine. There are no Penguin contractors in my area so I didn't have the option of hiring one. My husband was my capping helper. As you have more questions, please ask! I found the information and helpful tips from this site invaluable.
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TMI, but I bought an organic, no-sulfate/paraben/etc anti-dandruff anti-inflammatory sage shampoo off Amazon. Hoping it helps. I have black hair so the dandruff is making me self-conscious!! Hoping it'll help with the shedding too.
I went back and read all the posts about scalp dermatitis (thanks Maggie2!) and saw that things got a little bit better when they got their scalp issues under control so I’m willing to try anything
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Thank you so much for the information, I’m in Westchester, NY, how do you go about searching for a Penguin contractor? If not my husband will be my helper
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If you reach out to your local PCC sales rep (I think you'll be assigned one when you email them), they'll have a list.
What we did was hire a contractor for the first infusion, so she could give my husband some hands-on training. Now he's my capper.
I will say that the mild chaos of capping on infusion days is a good way of taking your mind off things. (You'll also be slightly high from all the Benadryl and steroids.) Each fresh cap is a blast of cold, but it goes away very quickly. It's not painful, just "Wow! That's cold!"
Oh, and bring a neck pillow, cuz the caps get heavy after a while.
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I also found the neck pillow to be very helpful. MtKushmore, hope the new shampoo works for you.
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MtKushmore, thsnk ypu!!
Mine wbc and rbc were lower too by 3 points, it was normal I think, I m eating food to boost it back !
With dandroof- they might recommend Nitrozal shampoo . I would ask the nurse and doc!
Bheg- congrats 🎉🎊❤️!!!! You are done!!!
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Thanks Bostoniangal, Maggie2! I guess I'll give the “natural" stuff a shot first before going the medicated route. It'll be ironic if this stuff makes me go bald. 😂
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Hi everyone,
I wanted to stop by and offer some perspective two months after cold capping. It worked for me. In the end, I shed about 20% of my hair, and I'm the only one who noticed. I started on Taxol, was switched to Abraxane after four treatments. I used Penguin Cold Caps, and my brother was my "capper".
A few thoughts:
1) It's not cheap ($1500 for me), and I am working with a nurse navigator at my insurance company to try to get them to pay at least part of the cost. They pay for wigs..why not capping?
2) It takes some effort, and having a good capper is key. My brother loves a project, and that's how he approached this. It's a great distraction during your treatment, as you are so focused on the capping process. And no, you definitely can't do it yourself.
3) My scalp was gross for the first couple of weeks. After that, my hair and skin were pretty dry, and the nasty dandruff went away by week 3.
4) For the first 8 weeks, it was truly no big deal. Cold, but not painful. Once the chemo exhaustion set in, it became more uncomfortable. By the end, I was really, really ready to be done. By the time it became unpleasant, I had so much time invested, and was seeing great results, so I never really thought of quitting.
5) I would do it again in a heartbeat. My hair just started to grow again,11 weeks after finishing chemo (I have my first haircut scheduled for next week!). For the most part, I feel great, with just a few lingering side effects. I think not having hair in the weeks after chemo would have slowed my emotional recovery. I respect and admire all of the women who are experiencing that, but I'm grateful I didn't have to.
6) Not coldcapping related -- but I did lose my eyelashes and eyebrows in a three-day span, six weeks after I finished chemo. It was a little startling -- but the amazing part was how fast they came back! Within a week, I no longer had to draw on eyebrows, and I had lashes long enough to put mascara on!So HANG IN THERE, COLD CAPPERS! You've got this!
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Thanks mobscence207! So far I’ve kept about 75% of my hair - I have a really thin area right on top but hopefully it will fill in quickly - I prob will have to cut my hair shorter at some point as I feel the ends look quite thin and see through but I am so thankful to have most of my hair - I just have one more round to get through Monday and I can’t wait to be done with chemo
I’ve lost all my eyelashes and most of my brows already so hopefully they start coming in quickly as well!
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Congrats on almost being done, Bheg 79! I hope those brows and lashes come back soon!
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I am popping in to tell you all that it does all end and fade away in your memory to the point where you can get a headache and not immediately think mets and even skip a mammogram! (Didn't mean to -- just lost track).
I am 8 years post diagnosis with IDC, some ER-PR-HER2+ and some the flip of that so in theory I never do get to relax as recurrence time frames spread over 10+ years. I used the cold caps to save my hair and it was SO WORTH IT. For me it meant the world to retain my privacy. The thought of people looking at me and thinking "cancer" was more than I could bear.
This place saved my sanity.
Just please remember -- THIS TOO WILL PASS! It's terrifying and time moves too fast and too slow at the same time, but it does end.
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Thanks TheLadyGrey! That’s exactly what I needed to hear right now. This process feels like it’ll never end sometimes. And I’m glad you mentioned headaches... this past round has gifted me a ton of headaches (thanks Herceptin?) and it’s hard not to let the mind wander. But it’s always sooooooooo good to hear from people on the other side of the door! Congrats on 8 years!!!
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Does anyone know if hair will grow while using cold caps? I just lost my hair from brain radiation. I didn’t lose it all. Probably 90%. I would continue with the cold caps in ten weeks when I go back on chemo if hair would actually grow
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Dianarose, I don’t know about other chemos, but my hair grew like crazy on weekly Taxol. I could tell by the long gray roots. Good luck
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My hair grew on chemo- I also could tell by long grey roots! So, it's been about 3 weeks since I posted in this thread (2 months since my last chemo) and I thought that I would share with you all that my thinned hair has been growing in fast and furious- much more so than my Chemo buddies that didn't cold cap. Eyebrows and eyelashes have also grown in completely since last post.
So,if you're reading this and feeling discouraged about your cold cap results, try to stick with it, even if to bounce back quicker after chemo.
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Thank you for your encouragement I’m starting chemo on Friday and intend on using Penguin. Did you use dry ice and if so where do you buy it.
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We buy ours in slab form at Smart and Final, but I think a lot of grocery stores carry it. We always buy it the previous night; it’s still fine in the morning.
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Thanks for the feedback. We get the dry ice down at the fish dock. He gives us a discount too
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Dianarose,
I'm guessing we are neighbors in southern Maine! Do you go to Vessel Services in Portland? They are amazing, aren't they?
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Yes we were going to Vessel. He gave me a decent discount and really cared. Where do you live. I’m in Acton. South on the border
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I bought the whole penguin system. Only got to use it twice because of brain radiation and that took my hair. I’ll never have hair again so looking to sell it. If interested pm m
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Hi I also used Penguin last summer for 4 cycles TC-My daughter was my capping partner--yes it take a few changes to get in the routine but then is not hard-just very tiring over total 7 hours each time --BUT-so worth it- I saved 80 percent of my hair and lost maybe another 5 % over the ensuing 5 months from ongoing shedding--I could tell but no one else could--tip-you can rent previously used caps for 300 month-you have to asked-the company wont tell you that upfront-nothing wrong with them-have been cleaned and sanitized-just used previously--so can save over a thousand dollars going with that.
Saving my hair made ALL the difference for me emotionally on this journey I never wanted to be on--hope you go for it-,Kaylie
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Buying caps would be for someone who is going to always be on chemo or long term or always.
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I'm three weeks PFC. I made it past the two week mark and my remaining hair seemed to be hanging on and I thought maybe I wouldn't lose any more...nope. The last few long strands started dropping this week. At the moment it looks like something out of a bad mugshot and I guess I look fairly sickly hair aside because people I see around the neighborhood keep asking me if I’m ok. Anyway I’ll post photos of what hair I have left when this last shed seems to be done.
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Hey all you cappers!
I've been using the Penguin caps and they worked GREAT through my 12 weekly taxols. I am now 22 days s/p first of 4 every other week AC. I had thought that the major shedding was supposed to start at about 14-16 days. Those days seemed OK but yesterday I brushed my hair and a LOT more came out than usual. Wondering if anyone else out there has done cold capping with a T-AC regimen and can share their experience? Wondering how much shedding to expect, how long it will last and when regrowth might start.As far as other hair for people starting on this journey, I last shaved my legs and pits about one week after my first taxol. The pubes on my labia majora all went about 10-14 days after my first chemo, the stuff on the mons thinned dramatically, but it didn't all go away. Brows are fading fast now that I've started AC. I have about 11 hairs left on the left, more on the right. I have eyebrow stubbble as I believe the hairs were starting to grow at the end of taxol and now are stopping again. Unfortunately, the stubble holds eyebrow makeup and makes them look all speckly. I've ordered two sets of temporary tattoo brows (not sure on which shade will be best) and one set of eyebrow wigs. Lashes: I have about 1/3 my lower lashes, upper lashes thinning but present, maybe 1/2 gone?
A few tips I've come up with along the way:
I think the whole wide tooth comb/brush thing really depends on your hair. My hair is long, very straight very fine blond hair. If I used a wide tooth comb, it would end up putting a lot of pressure on a very few focused follicles as it went through my hair. I use a brush so that the tension of the bristles "tugging" as it straightens out the hair is spread over a much wider area so over all less pressure on individual follicles. I know this wouldn't work for thick curly hair, but if I only used a wide toothed comb, my hair would never actually get fully combed! I do work from the bottom up, work in sections, and try and hold the hair above the brush to protect the follicles.
BRAIDS! given my long (past collar bones and I have a long neck), fine but lots of hairs, leaving it down and loose or in a low scrunchy pony tail ends up making more snarls. I've been wearing it in a simple low braid for weeks now and it keeps it from getting tangled, therefore less brushing, hides the greasy hair better when I was still getting greasy hair from not being able to wash it as often, and keeps my hair out of the way when my cat decides to walk across my pillow, so she doesn't step all over it and pull on it (she might have ended up thrown across the room otherwise)
For anyone with dandruff, most dandruff is actually seborrheic dermatitis. There is some evidence that this is linked to a fungus such as yeast feasting on the scalp oils. Nizoral shampoo has an antifungal medication in it and works great! so it isn't that there are harsh chemicals in it, just medication that treats the cause.
scalp chunkies. if you get areas on your scalp that are thickened, kind of like when you get a sun burn on your part and the skin ends up getting thick and peels, it is because the cold from the caps is TOO cold in that area. The cold cap lady in my neck of the woods recommends checking your part every cap change and putting a little cotton on areas that are getting red. Changing the location of your part with the cap changes can help too. because I have baby fine hair, my hair didn't insulate my scalp enough and I had scattered areas of the crusty scalp chunks. I started putting a flour sac dish cloth over my head under the cap. This seems to be just enough to protect me but not enough to insulate my scalp from the caps. One of the nurses said I looked like Jafar from Disney's Aladdin! A big plus to this is that non of my hair sticks to the cap and makes the process of removing the cap much easier! I'd consider doing saran wrap if I didn't need the tiny bit of insulation.
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Congrats on making it through the first part of your treatment, @Cria! I'm on a different regiment, so I can't say from personal experience, but I have read other ladies on the board saying their hair actually grew during the Taxol portion, so maybe it'll give your hair some extra motivation to hang on during AC.
I'm currently on Day 9 of #3/6. My ponytail looks and feels sad, and I'm shedding every day, but no one can seem to tell yet..... So here's hoping it can hold out for another two months.... plus PFC shedding... although it's currently hard to fathom how that's even possible. I think I'm getting in all my daily exercise just walking back and forth from the trash can to chuck out more hair.
I've been using this "natural" rosemary shampoo to curb dandruff, and while it's sort of keeping it under check, it's still not getting rid of it. A bunch of people including Cria have mentioned using Nizoral shampoo-- has anyone used it during capping with success? I already dread wash days, although who doesn't??
It's been pretty much exactly 3 weeks since the last time I wailed on here about losing all my hair, but I still look mostly the same, haha. I haven't had to use my topper yet...
@WC3 - CONGRATS ON BEING DONE!!!
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