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Cold Caps Users Past and Present, to Save Hair

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Comments

  • kd2016
    kd2016 Member Posts: 105
    edited October 2016

    Willa- I'm going back next Monday, the 10th after 8 months leave and 13 weeks PFC. I'm very nervous. Wonder how ppl will react to my looks and very short haircut. Except for my manager and his manager no one knows about my illness. I thought about quitting and taking a year off to recover fully both physically and mentally, but I think work will take my mind off cancer and negative thoughts. Daily shedding has stopped since I cut my hair 2 weeks ago and I'm sooo grateful. It sheds when I style it which is pretty quick now, wish it would stop soon also. My hair is very thin though, and everyday I look for new growth but don't see any. Overall I'm thankful I don't have to wear the wig.

    You're not vain at all. I still cry from time to time, I don't recognize myself in the mirror, and it's hard to accept. I don't even want to think about losing brows and lashes again.

    Wishing everyone peace of mind, health and a whole lot of new and beautiful hair!

  • Connie1230
    Connie1230 Member Posts: 45
    edited October 2016

    I am going to be using the Arctic Cold Caps although now I regret not checking out the Penguin. Arctic was the info that my oncologist gave me. I'd like to know what you all consider the best shampoo and conditioner. They gave me the following suggestions for shampoo: Avalon organic, Onestra, Renpur, Hair La Vie, and Pur A Dor. All they said about conditioner was for it to be organic.

    I wear my hair short normally. I understand not coloring it (although I will have inches of gray before this is over if it grows and I don't simply lose it anyway) but they say not to cut it either. Can anyone tell me why I can't at least have it trimmed as it will look truly horrible if I don't. Maybe it really doesn't grow during this?

    I can't say that I'm overly optimistic about these cold caps but I do want to be prepared in case I'm pleasantly surprised.


  • Hchurch902
    Hchurch902 Member Posts: 5
    edited October 2016

    Hi, Im looking for some advise on starting Cold capping. Im going to use the elasto gel ones and do dry ice!! Suggestions and tips please!!!

  • kechla
    kechla Member Posts: 181
    edited October 2016

    I use Pur A Dor. It is ok. I think with most of these you will not get much lather. The scent is pretty good. It seems to clean my hair just fine. I bought mine on Amazon. I have a friend who only ever uses Onesta and really likes it. I couldn't find it when I was looking... For conditioner, I've mostly been using Infusium 23. I don't think it is organic, but I do not apply it to the roots. It is a leave in conditioner/detangler and does wonders for combing through after washing. Also be sure you have a very wide tooth comb.

    I had a trim (about 2 inches) about 2 weeks before my first treatment. Penguin said not to get an extreme cut right before as it can loosen your hair follicles, but said ok to get a trim 2 weeks prior.

    I'm halfway through TC and on day 14 lost quite a bit at my sideburns and some behind my ears. Also a little bit at the nape of my neck. I guess the caps did not fit snug enough there. After my 2nd infusion (24 days), I had a big shed, but I'd still say I've only lost about 10-20% of my hair and not in any patches. I'm going for #3 this Thursday.

    Good luck!

  • PatinMN
    PatinMN Member Posts: 784
    edited October 2016

    Imprezagirl, look here for tips: https://community.breastcancer.org/forum/6/topics/...

    Good luck!

  • SusanBP
    SusanBP Member Posts: 73
    edited October 2016

    So, after keeping almost all of my hair through taxol, and 80% through a/c, I am now 5 weeks out from my last infusion and my hair is coming out in handfuls. It is getting so thin. The heavy shedding started about a week ago.

    For those of you who experienced this, how long did it last and did you keep some hair? I am grateful to have had my hair for the 5 months of chemo but this is a bit frustrating. Getting it cut shorter (pixie cut) on Thursday but getting a little scared as to how much more is going to fall out.

    Also, when did you all start experiencing regrowth?

    Thanks!

  • Positivepower11
    Positivepower11 Member Posts: 81
    edited October 2016

    Susan I had the same issue I kept about 90 pcnt hair thru Thp and 60 thru Ac . Lost a large amt Pfc , although I did have a high fever due to a viral and surgery .

    Finally had to cut it very short was looking ridiculous: use toppix which I never did during chemo. And I got a wig for work / going out . Wig looks good and I finally gave in. Figure will only need to wear for a few more months.

    The positive is growth comes in fairly quickly 6 weeks pfc more notable 8 weeks Pfc .

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited October 2016

    Ladies - what is the eyebrow kit I've seen many of you rave about?

  • meg2016
    meg2016 Member Posts: 188
    edited October 2016

    SusanBP I have had the same experience. My hair was thin but ok when I finished AC. I am now 7 weeks PFC and my long hair is still going fast. I did also have surgery, which likely contributed to the recent major shedding. I do have short hair on my head that seems to be hanging on (maybe an inch long?) Even though I worry about losing the short hair, too I may go ahead and cut the long hair to the same length. I haven't decided if I want to do a wig or not, but right now I am in hats, headbands, etc. I was glad to keep the hair during chemo and I don't think I will be completely bald, the short hair seems to be hanging in there, but sad that I with what I have left I am going to have to start over I think. Also concerned because now I am on hormone suppression, which I expect will keep my hair from growing in as quickly or thick as it was. Here's hoping your shedding slows down!

  • SusanBP
    SusanBP Member Posts: 73
    edited October 2016

    PositivePower11 and Meg2016: Thank you so much for responding. It is really a shocker when you do so well through chemo! I am glad to hear both of you started regrowth. I don't know why but I fear it won't happen even though I know it will.

    I don't mind cutting short. It will be fun for a while. And at this point, I just want to look a little normal. Did you find that the hats, etc., caused more shedding? I know they tell us not to do that but geesh, we have to look decent!

  • meg2016
    meg2016 Member Posts: 188
    edited October 2016

    SusanBP I feel like my shedding still seems to be heavier on certain days, then slows for a bit, then gets worse again and doesn't seem to have any relation to whether I wear a hat or headband or if my head gets warm or not. I feel like the cycle is roughly weekly shedding for two days, then it slows. Every week when it slows I hope its done, no such luck so far. I agree- I don't mind cutting it to a shorter length at this point as long as I have hair, I am good. Hoping the short stuff hangs on! Washing my hair also still causes heavy shedding, so I am not doing it. My hair doesn't get greasy, though, so I can get away with that.

  • Positivepower11
    Positivepower11 Member Posts: 81
    edited October 2016

    I have not noticed any additional shedding from even the wig. Frankly I feel hair that is going to fall out from a bit of heat and pressure now is going to do so anyway.

    Susan the growth is there and I you see those who don't cold cap they start getting back hair 8 th week PFC or so and I feel we will do better as our follicles were saved due to cold cap.  

  • SusanBP
    SusanBP Member Posts: 73
    edited October 2016

    Meg and Positive: I hear you. I honestly am so tired of treating my hair with kid gloves. I was the penguin cold cap poster child. Did everything right! Even took an umbrella when we hiked! And I am so grateful that I have had hair for the last 5 months. Honestly, I was at a party last week and it still looked good. Then all of a sudden, wth?

    Meg: I know what you mean with the washing. I only wash once a week and it is extremely stressful because I know I will lose more hair. But at this point...I think Pos is right. If it is going to fall out, it will fall out.

    I have a great stylist so hopefully he can do something with what is left. I don't have any bald spots yet but in the back it is getting so thin you can see through it. Still have "full" coverage but goodness, it looks like crap after this last week.

    Hopefully, it starts coming back in soon. I have surgery on Tuesday and I hear that is hard on it, too. Not sure why...

    Thanks so much for your thoughts!

  • meg2016
    meg2016 Member Posts: 188
    edited October 2016

    SusanBP - Surgery was super rough on my hair. I am not sure how long yours is, you might consider putting it into a braid, short ponytail or if its shorter putting in a decent amount of leave-in conditioner before surgery. I literally woke up from surgery with a giant tangled nest on the back of my head. It took me 30 minutes of spraying and brushing with leave-in conditioner to untangle it and of course I lost a BUNCH of hair. If you are staying in the hospital overnight, take some spray conditioner with you for that first brushing in case you have tangles.

  • Runner70
    Runner70 Member Posts: 177
    edited October 2016

    to the ladies using elastogel caps and/or arctic cold caps: they use the same type of cap (elastogel) . I used those caps through chemo cold caps and had a fantastic result EXCEPT on the top of my head toward the back. After thinking back, my last 2 chemos I put the cap on when it was a little too cold and less pliable. because of this, I don't think I got the best fit on top and therefore lost a larger amount of hair up there. So my suggestion is if the hats are colder than -35. Do not use them. Let them warm up a bit. Other than that, my hair loss was very even. And I could easily hide the bald spot by parting my hair on the opposite side. And I'll be honest, by the last chemo I didn't care what I looked like!

  • Hchurch902
    Hchurch902 Member Posts: 5
    edited October 2016

    Has anyone ever Cold capped for CMF chemo, My Dr says I don't need to as I wont lose all my hair. But I have been down this road and I don't want to loose any lol!! Im going to use elasto gels!!

  • London-Virginia
    London-Virginia Member Posts: 109
    edited October 2016

    Hi there!


    When I was ill, my chemo regime was FEC, which definitely will make your hair fall out. I had mid length hair and was reluctant to even cut it to say a "Bob". I did do cold cap and it certainly helped me keep most of my hair. But it would have been better to have it trimmed first as of course,hair catches and pulls on things so that doesn't help. I would say do the cold cap or whatever and I hope all goes really well for you. With love xx

  • kechla
    kechla Member Posts: 181
    edited October 2016

    Chemo 3 of 4 is tomorrow. Had my labs today and am good to go. Noticing a little more thinning at my front hairline today. I moved my part and that seemed to look better, so maybe will try that if it continues to worsen. I do change my part with every cap change and always avoid my normal part. I'm sure it has to do with the way my hair lays... I have my part where I have a colic so perhaps because it tends to raise the hair there, I am noticing it more... Going to try to make sure caps are well down on my forehead tomorrow. I'd rather lose a little at the nape than at the front...

  • Jane75
    Jane75 Member Posts: 19
    edited October 2016

    Susan BP its so frustrating to get through chemo and then see hair shedding afterwards. I am 11 weeks PFC and hair still shedding heavily and very thin. Penguin rep said its best to wait to have it cut until 12 weeks PFC in case the change in wait of the hair makes it fall out. Re growth started for me at 6 weeks and I have a lot of short hair now which makes it look better! Hang in there as re growth I'll be starting for you any day now!

  • Hchurch902
    Hchurch902 Member Posts: 5
    edited October 2016

    Thank you, London-Virginia I'm starting tomorrow!! I had TC 6 years ago and lost every single piece of hair on my body and I wont have that again!!

  • Aimless
    Aimless Member Posts: 46
    edited October 2016
    DanceTrance.....the brow kit is Anastasia. I got it as a gift, but it's available online...just google it. Still hoping the brows don't fall out again. Anything is possible!


    I hit the 3 month pfc mark yesterday - and went for my first color (ammonia free) and cut today. I am shocked how much more like myself I feel than I anticipated . The gray hair was really bringing me down - I am back to my old color and a cut that - although very different from before - to me - is really "passing." The troll hair was trimmed up, blow dried - and tamed. No shedding today - I was scared - but it was FINE. I feel like I can be seen (at work, in the community) by people who don't know what I went through and who wouldn't suspect. Two days ago, that was NOT THE CASE. Let me be clear - I was not what I would consider a cold cap success story, having lost so much hair, but had I not cold-capped - I would not be feeling this "normal" 12 weeks pfc. So I'm a believer. But man, did I have a lot of stress related to this whole ordeal. (Now my next obsession is monitoring the side effect from the Arimidex. Any success stories out there?)
  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited October 2016

    Aimless, thank you so much! Wishing you all the best!

  • kd2016
    kd2016 Member Posts: 105
    edited October 2016

    Aimless - so very happy for you. It's a great feeling to go out and feel comfortable and don't think ppl are looking at you. I passed 13 weeks PFC mark on Tues. I'm pleased with my very very short hair style, however, by no means consider myself a sucess story either, having lost 70% of my hair. Not the look I imagined for myself. My hair is very thin and can hardly wait for some regrowth. I don't have daily shedding anymore but it sheds a lotwhen I style it. I still wash in the kitchen sink, and cold water, but have to blow dry and style it on cold setting. Can't believe my hair still sheds after 13 weeks.

    Please let us know if your hair sheds when you blow dry and style it yourself.

    This whole process was/is extremely stressful, but the alternative would have been unthinkable for me so I'm thankful for that.

    Have a lovely night everyone.

  • kd2016
    kd2016 Member Posts: 105
    edited October 2016

    Aimless - I started taking Arimidex Aug 1st. So far no SE. Will have a bone density test on Nov 1st as a base line,and my onco suggested Zomeda injection. I have to make sure I don't need any dental work before the injection though.

  • Aimless
    Aimless Member Posts: 46
    edited October 2016

    Thanks KD, for the words of support and the weigh-in on the Arimidex. I just started Arimidex on September 6. Mostly fine - trying to workout hard so that the only muscle or bone aches I feel will be because of exercise! Odd taste in my mouth - but that happened with chemo - and then again with radiation - so maybe it's just one of the ways my body reacts, I don't know!

    I will continue to only wash my hair once a week (my stylist completely recommended it.) No idea how it will turn out when I do it myself. But I'm up for the challenge. The hair loss is really minimal now. Who knows, maybe Ill become one of those ladies who goes to the hairdresser for a wash and blow out once a week, rather than do it myself! I'll keep you posted about the shedding.

    (I finished chemo on July 5 - I think you finished around then too, right?)

  • kd2016
    kd2016 Member Posts: 105
    edited October 2016

    I can't wait to get back into working out. I had reconstruction surgery a month ago so too soon to work out. I used to do weight training 3 times a week for an hour each. So sad that I've lost all my muscles and have lost 10 pound I still get tired in the afternoons, and can't do too much yet. It'll be interesting returning to work on Monday after 8 months being away.

    My last chemo was on July 5th also!

    Hugs. K

  • Aimless
    Aimless Member Posts: 46
    edited October 2016

    KD, I could not have imagined working out hard again a month ago (I was just doing stretching and yoga), but my energy came back - and yours will too, in due time. I unfortunately for me did NOT lose any weight - nor did I gain - been maintaining the same weight since this began - although I need to drop 30 lbs, I've been giving myself a break - now that I'm one month past all my treatments - it's time to start that "work" (body weight + estrogen positive cancer - not a good combination).

    Anyway, I'm really thinking of you - returning to work after all this time will be hard - but I'm guessing only until you get there. I hope you find it MUCH easier than you are anticipating (our own heads in these situations are the worst - i've been there, done that). Feel free to reach out for support. You've got this!

  • kd2016
    kd2016 Member Posts: 105
    edited October 2016

    Aimless - thank you so much for your encouragements. Appreciate it. I'm sure returning to work is good for me. It's just the initial reaction of ppl to my looks is making me self conscious. They've always complemented my hair, and now I hardly have any hair! and it'll be surprising I'm sure. Very few ppl know about my illness. I have to let go of these thoughts.

    I didn't want to lose any weight but I could hardly eat throughout chemo, hence the loss. I'm 95 pounds now (was 105 when I was healthy). You should not worry about your weight now. This is the time to eat well and healthy and help our bodies recover from the horrific chemo SEs. It'sgood for our hair and skin also☺️

    Have a wonderful weekend and thanks again for your kind words.

  • DistrictGirl
    DistrictGirl Member Posts: 12
    edited October 2016

    Hi everyone - I've been cold capping through my first 5 cycles of Taxotere, Carboplatin, Herceptin and Perjeta. Does anyone have experience with having ONLY Perjeta and not chemo? Did you still cold cap and if so, how long after the Perjeta did you keep the caps on?

    I've had a hard time with chemo - was hospitalized twice in the first two rounds, have had several infections. Have had a 20% reduced dose the past few rounds and have fared better than the hell that was the beginning, but am experiencing a lot of pain and exhaustion this 5th round. I just had my MRI this week and it was totally clear - YAY! We talked to my oncologist who said that because my MRI couldn't have looked better, she's comfortable with skipping my last chemo since I'm having such a rough time. I will still get the Herceptin and Perjeta though.

    I called my Penguin Cold Caps representative but it was the end of the day on a Friday, and I go in to the infusion center first thing on Monday - not sure I'll hear back from her before then. Would love any advice you have!



  • meg2016
    meg2016 Member Posts: 188
    edited October 2016

    I was told buy Penguin to treat Perjeta as chemo and cold cap.

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