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Cold Caps Users Past and Present, to Save Hair

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Comments

  • camama2
    camama2 Member Posts: 22
    edited December 2021

    TeeHa2 - I'm sorry you're going through this. I used the Penguin Cold Cap system last year when I had Taxotere & Carboplatin. My hair is VERY thin because 15 years ago I had my 1st round with TNBC and had TAC. I lost all of my hair and it did come back however VERY thin. Prior to 15 years ago I had very thick hair (10 on a 1-10 scale) and after it grew back and still now I have very thin hair (2 on a 1-10 scale). Because I now know that Taxotere can cause permanent hair loss and I had partial permanent hair loss I chose to do the cold cap for all of my chemos. I didn't lose as much hair as you but I think you should do it for all of your treatments. I told people I didn't care as much if I was bald for several months but I didn't want the possibility of being bald permanently. Good luck to you!

    Laurie

  • janiehs
    janiehs Member Posts: 36
    edited December 2021

    TeeHa2 - I had pretty much your exact same experience when I did TC. I used Dignicap and I lost about 70% of my hair - virtually all of it on top. (I never felt that the nurse who was doing my capping was very in to it and kind of just yanked the caps on as fast as she could). By the end I couldn’t even do a comb over. But like others have mentioned, I knew that taxotare can cause permanent hair loss and wasn’t willing to risk it. My fourth infusion did not feel good but it was doable. My hair has come back even thicker than it was originally, so I am glad I powered through. I would try to hang in there if you can.

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited December 2021

    hi I used penguin caps for 4 rounds of TC and kept 80 percent of my hair- lost another 5 percent due to ongoing shedding for a few months -- do keep capping as is protecting your follicles and will help your hair start to regrow sooner--I wouldnt put anything between the cap and scalp to interfer with the cooling -with the Penguin I also pressed down on my crown much of the time to keep cold on scalp where is apt to thin the most--it is a hard journey for sure- but am so glad I stuck with it--best to you,Kaylie

  • teeha2
    teeha2 Member Posts: 3
    edited January 2022

    Hi Hippmark, Laurie, JanieHS, and Kaylie -

    Thank you so much for all the feedback! I did end up using the cold cap on my 3rd chemo session. I'm glad I did it.

    My hair continues to thin evenly (though it's not falling out as much as before). However, several weeks ago I thought I noticed little hairs growing in, but I wasn't quite sure. Now I can confirm that indeed my hair has started growing back (especially at the crown/part where I lost the most hair). As Kaylie pointed out, it's important to press down on the cap, especially on the crown as the cap tends to not fit well there. I'm planning to use the cold cap again on my last chemo in a few weeks. I just wanted to thank everyone for taking the time to respond to my post - this forum has been truly helpful!

  • morrigan2575
    morrigan2575 Member Posts: 798
    edited January 2022

    I remember being shocked that my hair was growing while still falling out. It's a very weird dynamic.

    Good luck with the rest of your treatment!

  • GoKale4320
    GoKale4320 Member Posts: 580
    edited January 2022

    Hello! I cold-capped in 2017 when I did 4 rounds of Taxotere and Cytoxan. I might be doing chemo again with weekly Taxol, but rather than cold capping, I am considering doing ice socks and mittens for feet and hands to avoid neuropathy. Has anyone done this? What brand of ice socks and mittens do you recommend? I have looked online, but I see ones that only stay cold for 20-60 minutes which doesn't sound long enough.

    Thanks!


  • hippmark
    hippmark Member Posts: 92
    edited January 2022

    Hi GoKale,

    I start chemo on Tuesday and I have purchased Natra Cold Therapy socks on Amazon. I also purchased additional 4 packs of those that I can freeze too and take with me to switch out after 45 min. I also purchased from Amazon Healthy Hands Cold Therapy Gloves. They come with an extra set of packs that you can switch out. I hope that helps!

  • morrigan2575
    morrigan2575 Member Posts: 798
    edited January 2022

    i bought mine on Amazon as well. NatraCure Cold Therapy Socks (came with extra cold packs) and icing Power Hoy/Cold Gloves. These didn't have packs they froze really well and stayed cold long but, you couldn't do anything with them on. Not sure I'd recommend the gloves. The socks were great though

  • ninaca
    ninaca Member Posts: 228
    edited January 2022

    Last week the nurses brought me ICY FEET from their freezer (donated by a past client), and it was so great - I went on Amazon and bought a pair. You put them on like sandals, they last a long time. The only issue is your toes are not covered so so they put a pad on top and kept it down with their own ice pack.

  • inmymindseye
    inmymindseye Member Posts: 6
    edited December 2022

    Hi Everyone -

    I just finished going through the past 4 years of posts on this thread and see it has been quiet since January! I do my first round of chemo (TC - 4 rounds) this Thursday 12/15 and am going to be cold capping with Arctic Cold Caps. Anyone else currently cold capping while getting chemo?

    Holly

  • nkb
    nkb Member Posts: 1,561
    edited December 2022

    I am cold capping with Paxman cold caps while on enhertu. so far I have shed about 40%?, but, no bare spots- the weird thing is I am also growing new hair at the same time. I had colored my hair in the past and the new hair is gray so- very light.

    Enhertu is a strange chemo in that some people don't lose any hair, some lose it all after first dose, some lose it later, some regrow while on it- so hard to figure out if the cold capping is doing much compared to AC-T where almost everyone loses all of their hair.

    If you have never lost your hair before- I did 11 years ago with AC-T and it is very traumatic and took a long time to re-grow. Even though mine is thin, if I wear a hat I like to see the hair peak out of the bottom of the hat. it is winter- so hats are appropriate- The cold capping protects your follicles and make regrowth faster and thicker also.

    I don't know anything about Arctic cold caps

  • alliegator
    alliegator Member Posts: 8
    edited December 2022

    Just wanted to share my recent success with Dignicap (Jul-Sep 2022). I used Dignicap for 12 rounds of Taxol + Herceptin and kept 80% of my hair. I was pretty meticulous about ensuring the cap was well seated on my head with no bumps -- required the help of a medical assistant and my husband to properly fit it. I couldn't be happier with the results. The 10 min brain freeze + 3 hrs of total time in the cap for each session was totally worth it. If you are preparing to start a Taxane based chemotherapy regimen and are concerned about hair loss, give the cold cap a shot!

  • claire1973
    claire1973 Member Posts: 84
    edited December 2022

    Hi all,

    I will second what alliegator posted. I had the same treatment, dignicap and same results. I came through with healthy hair follicles which is, I think, the way I thought about the cold cap....it is about keeping as much hair as possible but it is also about the hair follicles staying as healthy as possible. For me the worst part was my ears. They are sensitive and the cold cap sits right on the tops and is so uncomfortable. I bought little fleece covers that went over my ears. It helped some. I also used my son's giant Beats headphones ever the whole thing to be able to listen to podcasts during treatment. Trying to use the ones that go into your ear was uncomfortable. Sending prayers to everyone!

    Claire

  • peoy
    peoy Member Posts: 48
    edited December 2022

    I'm using Paxman. Done 8 out of 18 taxol infusions, lost 25% hair, no bald patches. Hope to keep 50-60%. To be fair, hair follicles weak before treatment.

    Back in 2017, I lost 98% hair after 4th taxol infusion. Cold caps was only available on 9th infusion. So I use cold cap though I'm bald, hopefully to jumpstart hair regrowth. After taxol, adjourned to AC. During AC, I saw hair grow. When I finished AC, 0.5cm dense hair.

  • lef
    lef Member Posts: 32
    edited December 2022

    Hi, inmymindseye. I am one week PFC and used the cold cap throughout. I shedded a fair amount of hair (and am still shedding) but I don't have any bald spots. I am grateful for that. The major downsides of cold capping are discomfort and the additional time spent in the cancer center. (I started with TC but ended up with 12 weekly doses of abraxane, so the cold cap made many of my sessions 3x as long as they would have been.). To me, it was still worth it. As others on this topic have said, a proper fit is absolutely critical. Good luck!

  • lily0420
    lily0420 Member Posts: 4
    edited February 2023

    I started TC (every 3 weeks x4) on 1/5/23 for IDC. I decided to use Penguin caps rather than Dignicap because I was highly anxious about everything at that time and wanted to have more control over the cold cap process. (They only had dignicap at my less preferred location, only had 2 machines, etc.) I was having trouble getting my first chemo scheduled in a timely way and didn’t want the cold capping to be another obstacle. Plus Dignicap would require staying a few more hours at the infusion center. Penguin requires 5 hours of capping post-infusion, but I can go home and continue in the comfort of my bed.

    It wasn’t until I received the Penguin caps and detailed instructions that I realized how labor intensive the whole process is. Picking up 50 lbs of dry ice each time, wheeling the packed cooler in, changing out the cold cap every 25 minutes and rotating them in the cooler before during and after the chemo infusion (about 7 hours total each time) takes pretty much all of my husband’s time and attention without a break for 7 hours.. After the first round I questioned whether we should abandon the Penguin and try the Dignicap just to make things easier. But my husband said it was okay he didn’t mind cold capping me. The second round on 1/21 was much easier—-we had our routine worked out better, had found a dry ice supplier, plus we were both less anxious about everything. So we decided to continue with Penguin.

    As of today, I don’t think I’ve had any more than my normal amount of hair shedding, maybe less because I’m really babying my hair/scalp per Penguin instructions. (Washing only once a week, no scrubbing, using cool water gently poured over rather than hot showerhead, special shampoo, gentle wide tooth comb, no heat on my hair, no products, keeping out of chlorinated pool) I also got a satin pillow case to reduce the pull on my hair.

    I’ll update later as to whether this was worth it!


  • claire1973
    claire1973 Member Posts: 84
    edited February 2023

    So happy to read this is working for you! I had success with Cold capping. The part I will stress and also say is one of the tough parts (it's all tough!!) is, once you are finished with chemo, it's advised that you continue to baby the hair follicles for at least 3 months. I've heard that if you go back to normal treatment of your hair you can shed a bit after the chemo ends. Your husband sounds awesome. They really feel helpless in this tough situation and want to have a "job" and feel like they are making a difference. Good man!

    Smile

  • camama2
    camama2 Member Posts: 22
    edited February 2023

    lily0420 - So happy you're sticking with it! I did the Penguin cold capping too in 2020. My husband also did all the work and was also exhausted at the end of each round but he said it was worth it. My first go at TNBC was in 2005 and I did not do cold capping (it was very new and considered experimental). Before chemo in 2005 the thickness of my hair was 10 out of 10. After it grew back it was a 2 our of 10. My hair dresser with 40 years experience and dozens of chemo people had never seen anyone like me. I suffered from partial permanent hair loss, which is why I did the Penguin cold capping. It is now 2 1/2 years later and my hair looks about as thick as it did before I started chemo in 2020. Hang in there, it's totally worth it!

    Laurie

  • mandy23
    mandy23 Member Posts: 92
    edited February 2023

    Thanks to all who have been keeping this thread active! It gives hope to us chemo newbies.

    I will be starting scalp cooling with Paxman on February the 15th. My chemo will be Taxotere and Cytoxan (TC). If I can save some of my hair, that would be awesome! If not, I hope to at least keep the hair follicles healthy.

  • nkb
    nkb Member Posts: 1,561
    edited February 2023

    Good luck Mandy- I am using Paxman and although a lot of hair shed in the first two months (on enhertu) it started growing back on cycle 4- having some hair helps with privacy, warmth and self esteem- does lengthen the time in the chair- but, it is worth it to me.

  • moderators
    moderators Posts: 7,656
    edited February 2023

    Mandy, welcome to Breastcancer.org! We're sorry for what you're here, but glad you found our discussion forums and this amazing group. As you prepare for your first chemo session, here is a great thread you may find helpful: More Tips (and a Shopping List) for Getting Through Chemo

    Good luck with treatment and please, keep us posted on how you're doing.

    The Mods


  • makingmyownchoices
    makingmyownchoices Member Posts: 11
    edited February 2023

    I did Paxman cold capping with a taxol-based regimen. It was very cold....

    I did loose most of the hair on the sides of my head and a lot around the front (I think the cap's fit there could have been better, as some others have stated), but I was able to keep enough that, with a clever hairdresser, I didn't have to wear a cap or a wig but did have to move from long hair to short styles. I am almost a year out, and my hair is growing back fairly quickly and about as thick as before - although slightly darker and more wavy.

  • sheilzinla
    sheilzinla Member Posts: 30
    edited March 2023

    @Mandy23 How are you doing? Are you finding that cold capping is working for you? I am on Day 6 past my 1st infusion and worrying/wondering about the inevitable hair shed ahead, despite cold capping with Penguin. Really just hoping that my follicles are spared from permanent damage, even if I lose a lot of hair temporarily.


  • mandy23
    mandy23 Member Posts: 92
    edited March 2023

    Hi sheilzinia -

    I took notes on what was happening when....and it looks like I just was lightly losing some hair until about Day 19 of my 1st Infusion. It became handfuls of hair for a few days and continued with quite a bit of hair for about a week. It does seem to have slowed down some after that week, though on hair wash days (once a week), it still seems like more. On Day 7 of my 2nd Infusion, I decided it was time to start wearing a head covering. I still have quite a bit of hair on the back and sides. For me, it is really the top of my head. Even there, I have enough wispy hair that I should be able to continue cold capping without needing to cover with something to avoid hurting my scalp. Everyone is different and will vary in their experiences. For me, (pre chemo) my hair was very thin and the top of my head already had issues with constantly needing to move my part to avoid too much of my head showing, so it didn't take much shedding to make it pretty bare. This is my 2nd time with BC -1st dx was 19 years ago--and that 1st time I was on Femara for 8 years. I think that caused a lot of hair thinnning.

    Anyway, still happy with the hair I do have and will continue Paxman cooling. Even though I am wearing a covering, I like that I have some hair peaking out from the bottom, so it would be nice if I could keep the back and sides at least! And right....main objective is to keep healthy hair follicles.

    I noticed on the March 2023 chemo thread you indicated you got some light frostbite on your hairline. Are you putting something on your forehead to protect it? I am using adhesive moleskin that I cut in the shape of my forehead and put just slightly below my hairline. This is because the cap comes down onto my forehead beyond my hairline. That works pretty well except it does hurt a bit (like ripping off a band-aid) when I take it off. I noticed earlier in this thread some people indicated that they use a panty liner. That would be probably easier to remove, though might look a little stranger. :-) The things we go through......

    Hang in there! We'll get through this!

  • sarahmaude
    sarahmaude Member Posts: 325
    edited March 2023

    I used a pantry liner, liked it better than moleskin. I trimmed it to match my hairline. I was able to reuse it for a couple of treatments, and liked it better after it was a little less sticky.

    For those cold capping now, my thoughts are with you! I’m 8 months past my final TC treatment and still regrowing what I lost. For me, it was totally worth my Penguin cold capping “investment.” My hair is a hodgepodge of lengths, but it’s nice and thick. The first color treatment I did faded really quickly, but the second is doing great. My hairdresser has been very helpful in helping me grow back gracefully. I went to a chin length bob and the new is gradually catching up to the old. A lot of days I can forget I ever had chemo, and that’s a great thing

  • thebearthepickleandthebean
    thebearthepickleandthebean Member Posts: 1
    edited March 2023

    Hi. I have been heavily researching all of the hair saving options as my chemo is going to start in 2 weeks. Has anyone with very thick hair had success? We are looking at penguin since the caps seem to be more easily customizable and easier to get tight with all of the Velcro straps. My hubby wants to do it but is nervous he won’t get the caps on right. Paxman is only an option if we can get my chemo treatments transferred to another location an hour away And it seems like more people have got issues with this one. I will be on TC x6. I think it will help my children and my mental health if I can keep enough of it to not need to head cover!

  • sheilzinla
    sheilzinla Member Posts: 30
    edited March 2023

    @mandy23 Thanks for your insight. Yes, each of us has our own reaction to cold capping so its hard to generalize. I am glad you still have a lot of your hair, even though you might need headcovers temporarily. Hopefully you will start seeing regrowth soon!!

    I had a professional Penguin cold capper with me, and she used pantiliners on my forehead. I didn't realize until the next day that she left a small strip of skin bare, hence the frostbite. I will have to tell her next time to double check. Those pro-cappers are expensive ($600/session including dry ice), but I am justifying it as an investment in my mental health. I don't have anyone to rely on to cap me, and I'd rather have someone with experience. Besides, I won't be going on any trips or vacations, or even out to eat much this year so this is how I am gonna spend as an "indulgence".


    @sarahmaude I have been enjoying your posts and am pleased to hear that Penguin worked well for you! Crossing fingers for me, too!

    @thebearthepickleandthebean Welcome! I think Penguin has been good so far,but it is pretty hardcore and labor intensive. Its too early to see how its working for me, but I remain hopeful. I am on 4 rounds of TC and chose Penguin because it sounded more effective for that protocol.

  • devoinaz
    devoinaz Member Posts: 40
    edited March 2023

    I'm going to have my 3rd TC infusion out of 4 in a couple of days, and am using the Paxman cold cap. Prior to chemo, my hair was medium thickness, curly, and long (used to be quite thick, but I just went through menopause, and it thinned out quite a bit over the past couple of years). I'd say my experience with Paxman has been that it's very easy and not too uncomfortable, but I've lost a lot of hair. I am wearing wide headbands at the moment and that's enough to cover the major problem spots. A pony tail would also work, but I'm afraid that would put too much stress on my hair and cause more loss. The thing is, I've got two more treatments to go! I think I'll end up losing enough hair that it will be a pixie cut for me at the end of this, but I'm fine with that. Maybe it'll even look good - I haven't had my hair that short in a really long time!



  • mandy23
    mandy23 Member Posts: 92
    edited April 2023

    Bumping for IntheClub

  • jwhite80
    jwhite80 Member Posts: 1

    Can anyone comment on the Dignicap or the Penguin for TC? I have access to both and need to decide which to use.