Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

Cold Caps Users Past and Present, to Save Hair

1…679680682684685…717

Comments

  • moderators
    moderators Posts: 8,741
    edited June 2018

    sandyf, we welcome you here, and truly appreciate you sharing your experience! Please do keep us posted!

  • lulabella
    lulabella Member Posts: 48
    edited June 2018

    Hello everyone. I'm new to the site and have been reading through all of your experiences every night. They bring me a lot of comfort and help me prepare for battle, so thank you :) I will be starting chemo (TCHP) on Friday and am planning to use the Penguin Cold Caps. I did a test run of my new gentle shampoo and washing technique tonight to make sure that there are no surprises once the chemo starts. Tomorrow I have the surgery for the port, Tuesday an MRI and then chemo #1 on Friday. Any last minute tips for the cold caps and the icing of the hands and feet would be greatly appreciated. Best wishes to all of you on this journey!

  • Gracemama
    Gracemama Member Posts: 2
    edited June 2018

    Hi All! This is my first post on this site and I am SO glad to have found you all as a resource- yay!

    I am from San Francisco but live in New Mexico where cold caps don’t seem to be used much. My oncologist recommended against them due to scalp cancer concerns but it does appear that these seem to be used widely elsewhere!

    I have stage 3 HER2 pos and the chemo plan is TCHP. She said that the Docetaxyl makes it pretty impossible to keep hair.

    Has anyone else here been on Docetaxyl and kept hair with cold caps?

    It looks like some caps may work better with some types of chemo- are there any recommendations for this type?

    Also- I’m a single Mom with no family in the area so I don’t have someone to come and help me change caps with regularity. First chemo session they estimate at 7 hours and then someonewhat less time every three weeks thereafter. Is this something I can do myself? Not sure if nurses may be able to help.

    Many many thanks in advance and good luck to all of you!!



  • mobscene207
    mobscene207 Member Posts: 33
    edited June 2018

    Hi Gracemama!

    I'm on Taxol, which has a pretty good success rate of hair retention with coldcapping. For what it's worth, I'm using Penguin Caps and so far (Day 20), I've had no noticeable shedding. There is no way I could put the caps on myself - the angles just wouldn't work. Plus, I'd worry about dislodging the IV! The nurses at my treatment center are cheering me on, but they aren't allowed to help with the caps.

    Whatever you decide, good luck to you!


  • Gracemama
    Gracemama Member Posts: 2
    edited June 2018

    Thank you SO much! I read somewhere that you replace them every half hour? So you bring a helper to switch them out for you consistently every half hour or so throughout treatment? My first treatment is supposed to be 7 hours or so so that is a lot of cap switching :)

  • JCA1984
    JCA1984 Member Posts: 3
    edited June 2018

    My wife just completed her 1st of 12 Taxol sessions and before that she did 4 AC treatments.

    She used the DigniCap coldcap and *so far* she has all of her hair.

    Note that our cancer center has a full time DigniCap technician available who puts on the cap and monitors it through out your entire treatment which she openly told us she believes is the main reason for its success because some places have the nurses do it. Also during chemo we have met other patients who used the DigniCap and all of them lost little to no hair during chemo. Our DigniCap tech is AMAZING is all i can say and fingers crossed moving forward.





  • mobscene207
    mobscene207 Member Posts: 33
    edited June 2018

    Yup, we have to change the cap every 25 minutes, to keep my scalp cold enough. My first day was also 7 hours at the treatment center - by the end of it, we had changed those caps so many times, we were really good at it!

    If you go with Penguin, they will send you instructions based on the kind of chemo you are getting, and what your hair is like. Mine is fine and thin (for once, a good thing!) and I have to keep the caps on for three hours after the infusion ends. So my routine goes like this:

    Pick up 50 pounds of dry ice on the way to treatment, and start cooling the caps.
    First cap goes on 50-60 minutes before Taxol infusion (I have premeds and Herceptin first, so it times out perfectly). Change every 25 minutes through infusion, continuing for three hours after. So my head is frozen for a total of about 5-6 hours on treatment day. By the way, I only find it uncomfortable for the first 4 or 5 minutes.

    When we practiced the night before my first treatment, it seemed overwhelming. But after the first day, it feels pretty routine now. Although the nurses at my center can't help, they are very supportive and can't wait to see the results.

  • meow13
    meow13 Member Posts: 1,363
    edited June 2018

    bump

  • DJ2017CA
    DJ2017CA Member Posts: 4
    edited June 2018

    Gracemama,

    I'm sorry to hear of your diagnosis. I had the TCHP treatment as I am also Her2+ and I used Penguin Cold Caps. I finished chemo about a year ago, last treatment was July 5, 2017. I saved about 60-70% of my hair. I had all of my hair at the end of chemo with no shedding. However in late August when my hair started to grow again, the dead hair started to shed out. I thought I had done a miracle and kept all of it, but 30-40% felt out in the following 3 months. I thought it might all fall out, but it stopped in late November.

    People at work or around me didn't really notice much but it was very apparent to me. My husband said that instead of a thick "blanket" it's like I had a thinner blanket but still had mostly full coverage. The gaps were at the edge of the caps where it never stayed as cold as the top, although my husband wrapped the caps super tight, where it was painful. Since the hair loss was mostly around my ears, somehow mostly on the right side, and also behind my head it wasn't so obvious as the top of my hair looked the same but thinner. I kept my long blond hair although it was quite a process to maintain. Starting a few weeks before my1st treatment, I slept on a satin pillow case, I washed my hair only with cold/cool water using a large cup for hand pouring water and avoid pressure, avoided the sun always seeking shade and wearing a lightweight white baseball cap (you don't want your head to get hot), brushed it only with a wide tooth comb, only air dried it, took silica and biotin daily, plus no highlights for 9 months. This was very complicated and felt like it was forever.

    To me it was worth it because I have 2 now 9-yr old little boys and I didn't want them to worry about mom being sick. It may not be worth it for others.

    In late march this year, after completing my 1 year of Herceptin, I treated myself to hair extensions. I felt 100% normal again. It filled out all the thin spots and also gave life and luster to my tired hair:) I will likely continue the extensions for another year plus until my new hair reached shoulder length.

    You will absolutely need a strong helper to do the caps for you. It is 7-8 hour long and needs to be changed every 20 min. It's a lot of work and not pleasant but it does work for your type of treatment.

    Best of luck:) Hugs!

  • Rwns
    Rwns Member Posts: 103
    edited June 2018

    Hi Gracemama, you can also ask your penguin Representative if there are any technicians in your area that will go with you and do the cold capping. Of course, this comes at a cost, but for me it has been worth it. She brought all the supplies and stayedwith me throughout.

  • Hsimon002
    Hsimon002 Member Posts: 2
    edited June 2018

    Has anyone had success with the brand Polar Cold Caps?

  • Hsimon002
    Hsimon002 Member Posts: 2
    edited June 2018

    Hi - I just read your post. I am starting chemo next week and have the exact diagnosis and chemo regimen as you.... taxol every week for 12 weeks and perception every 3rd week after that. Did you do cold capping? Any other major side effects? Thank you:)

  • magari
    magari Member Posts: 335
    edited June 2018

    Hsimon - if you do a search, you should find some good feedback re Polar. I used Arctic, and thought they provided good service and pricing.

    I kept about 50% of my hair with 6 rounds of TCHP, despite developing scalp dermatitis at about Round 2.

  • moderators
    moderators Posts: 8,741
    edited June 2018

    Hsimon, Magari is correct. Use our Search box to the left and type in "Polar Caps" to find the posts that discuss them.

    Best of luck. And great news Marari for keeping so much hair!


  • Luuc
    Luuc Member Posts: 2
    edited June 2018

    Thanks I finally found it. This doesn't look like it will be an option for me. Money. I'm getting more & more freaked out every day. I saw a surgeon yesterday and we did in fact have the chemo talk. Since I'm a triple negative I have few options, well actually no options. I'm meeting a 2nd one tomorrow for the 2nd opinion. Then I meet with an oncologist on Friday. I do think I'm going to go with a double mx as I don't ever want to have to think about doing this again. I also think I'm going to go flat. I was just reading about "after surgery" and the start of chemo and the side affects of that. I can't believe this is the next chapter of my life.

  • sandyf
    sandyf Member Posts: 3
    edited June 2018

    I'm on TC. My oncologist's office claims a 90% success rate for TC patients following their Dignicap protocol, and I have no way to challenge that claim. Considering how hard I fought against chemo in the first place, and the fact I only accepted it after meeting with onco #3, now that I finally trust that i have a doctor who has my best interest at heart, if he tells me to sit with my head on ice for three extra hours, I wiill gladly sit with my head on ice for three extra hours.

  • itsstillme
    itsstillme Member Posts: 48
    edited June 2018

    Luc,

    Check out http://www.hairtostay.org/apply-for-a-subsidy/ for financial aide. Also Rapunzel Project is an excellent resource. Good luck!

  • GoKale4320
    GoKale4320 Member Posts: 580
    edited June 2018

    I used Wish Caps and found their information on the Rapunzel site. I chose it because it was the cheapest one that I found. I lost more than half of my hair and part of the reason was I used corn starch to help keep it from looking dirty all the time. However, the corn starch created a build up on my scalp so when trying to scrape it off, a lot of hair came with it. So whatever you do - Do NOT put corn starch in your hair. Embrace your dirty hair!

    So my whole point is that Wish Caps was cheaper, but they are terrible with customer service. So if you can survive with poor customer service, you'll save some money. Also, I read here that Penguin offers used caps for less money, but you have to ask them. They don't advertise that.

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited June 2018

    Hi to all you cold cappers; today is my 1 year anniversary of being dx'd with early stage bc- it has been quite a year-surgery-lumpectomy complicated by seroma and breast cellulitis, 4 rounds TC, and whole breast/ nodes radiation - am on 5th month of letrozole with minimal side effects-I am finally feeling back to my normal self-and moving ahead. There is lots to do--!

    I used Penguin cold caps and saved about 80 percent of hair and lost another 5-10 percent thru 5 months of post chemo shedding-no bald spots and no one could tell. Now that I have 4 inches regrowth- I can tell I did lose mostly all around my hairline front to back. Keeping my hair made all the difference for me emotionally on this unwelcomed journey we are all on. yes it is expensive- 500/month but if you ask for them - you can rent used caps from Penguin for 300- they are fine- just been used before-

    I urge all of you to do cold capping if saving your hair is paramount to you-the seven hours of changing every 25 minutes was grueling towards the end of each session but so worth hanging in there!!

  • mobscene207
    mobscene207 Member Posts: 33
    edited June 2018

    kaylie 57410,

    Thanks for the encouragement. I've done 4 treatments out of 12 and so far have had no hair loss to speak of. The capping process is proving to be a good distraction for me -- I'm more focused on that, than on the fact that I have cancer! Strange, but true!

  • DTR808
    DTR808 Member Posts: 21
    edited June 2018

    hi all,

    Just thought I’d put this out there for what it’s worth...

    I had been struggling the past couple of weeks over which type of cold cap I should use (turns out that I may be able to forego chemo, but that’s another story!). I, luckily, had access to both the Dignicap and Paxman and obviously could have chosen to do the Penguin as well.

    I obviously preferred to do either the Dignicap or Paxman as it’s a less laborious process to not have to swap out caps every 30 mins, however keeping my eye on the prize - that being, to retain as much of my hair as possible, I called the infusion center which houses the proposed/potential scalp cooling machines in the hopes that I’d receive some info that could sway me one way or another. Well, I spoke to the nurse that would be in charge of running the cooling machines and help with fitting the cap on the patient. She was very helpful in telling me, that while many ppl use the scalp cooling machines and she has seen many success stories with them, in her opinion, the Penguin CC have a better success rate. She mentioned the reason for this being is that there is a longer post-infusion cooling time for the Penguin CC (4hrs post-infusion) compared to the max 2 hrs post-infusion cooling time with the cooling machines and that is what the mitigating difference is.

    Should I have to go through chemo, I have made the decision to go with the Penguin CC

    Anyhow, hope this helps someone! Good luck and good vibes to all who are already on this road or are about to start. :)

  • nrioffe
    nrioffe Member Posts: 3
    edited June 2018

    Hi kaylie,

    Can you tell me more about your cellulitus? How it was treated and finally resolved please

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited June 2018

    Hi to you, I had a stubborn post lumpectomy seroma that was aspirated 3 times and my doc warned me that infection was a concern with aspiration especially since I had gone thru 33 rads treatment and that leaves the breast tissue very fragile and more prone to possibly become inflamed and prone to cellulitis even without the aspirations- sometime it just happens- My breast swelled up literally overnite and I went on 2 courses of antibiotics- bactrim and required an incision and drainage with a drain to finally allow the seroma to close in and heal . this was in Feb 2018-all fine now- have a small indentation scar from the drainage- but can live with that--hope this helps--life does get back to "normal" though a new normal moving ahead--best to you,C

  • magari
    magari Member Posts: 335
    edited June 2018

    DTR808 - Thanks very much for sharing the info you obtained re scalp cooling machines versus the dry ice type of cold caps. The longer post chemo cooling time resulting in better hair retention makes perfect sense to me.

    I'm now nearly 14 weeks PFC and hair growth has noticeably increased over the last 3 weeks. I had very few brows or lashes as recently as 2 weeks ago; but they are now coming in quickly, dark and fairly thick. The downside is that I'm also having to shave my legs about every other day, and the hair on my upper lip has also returned....

    The parts of my head hair that I'd lost are now about an inch long. Which looks a bit crazy sticking straight up on top, but I will take whatever I can get. I have an appointment with my stylist this week to cut the hair I retained through cold capping (which is currently at my shoulders but very thin) to some approximation of a short, layered bob. She doesn't think I should color it yet and with the crazy fluff going on, I will be sticking with my wig in public for a while yet. But all of this is a process and I am getting there.

  • domzie30218
    domzie30218 Member Posts: 47
    edited June 2018

    Hi Ladies,

    Hoping you guys can share some tips. I did my PCC for my first infusion on June 8th and I have a very oily scalp. I'm trying to follow the instructions religiously and not washing my hair more than twice a week. However, I am now getting a flaky scalp and my hair just looks gross. Do you guys know if dry shampoo-ing is ok? If so, any specific brands you'd recommend. The one I have on hand has aluminum and alcohol and I presume these are no bueno. Also, I know we are not supposed to pull on the hair but I wonder if putting my hair half up loosely in a claw clip (to mostly hid the greasy mess) is a no-no too? Thanks in advance ladies!

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited June 2018

    hi- I also went thru 4 rounds of TC-stayed clear of the adriamycin-red devil -protocol because of the potential heart damage down the road and I am in my 60's with 15 year hx of high blood pressure-am at peace with my choice _ I also knew that I would have more of a chance of retaining the most hair possible with the TC. I put the caps on too cold the first time and had some mild frostbite top of my head that turned flaky and I gently flaked it off. I did wash my hair with lukewarm water and being very gentle right along every 5 days using very mild baby shampoo followed with spritzing on Johnsons baby detangler- I bought a wooden wide tooth comb and combed my shoulder length hair in sections. Slept on a silk pillow case to decrease pulling and let air dry with just a little cool air fluffing on the undersides. I did use a clip loosely sometimes. most of the hair that I lost was seen during the post shampoo combing- lost about 20 %., but continued to shed for 5 months which was scary after all my hard work--I never tried a dry shampoo-think too many chemicals for my well being. the Shedding seems to start about day 21 after first chemo-prepare your self mentally for that-- I never needed a wig- no even knew what I was going thru other than few family and close friends.

    You will get thru this a treatment at a time and it is so worth it- I am a testament to that! Stick with this blog- lots of support and advice from those of us farther along on the journey--sending hugs,C

  • mobscene207
    mobscene207 Member Posts: 33
    edited June 2018

    Hi Domzie,

    I had the same scalp issues at first (it was pretty gross). Also gave myself a bit of frostbite, and had the peeling issue. For what it's worth, my hair and scalp are much drier than normal now (i'm heading into my 5th of 12 Taxol treatments this week), so washing only twice a week and the general greasy feel is less of an issue. The scalp peeling continues -- I have to keep a close eye on it or the dandruff gets pretty crazy.

    I'm using Penguin cold caps, am on day 26 and have had NO significant shedding yet. I'm pretty amazed, to be honest. No hair loss anywhere else either, so I don't know if it's the caps or my body chemistry -- but either way, I'll take it!

    Good luck!

  • domzie30218
    domzie30218 Member Posts: 47
    edited June 2018

    Thanks for the tips Kaylie57410 and mobscene207. I am using Penguin Cold Caps too and think a few of the caps were a bit too cold. My boyfriend was doing all he can to time everything correctly and get the caps to the right temp, but there were moments when I had to put on a fresh cap and the new one was still too cold--perhaps I did get a bit of frostbite as well. Gearing up for the first big shed, and as gross as my hair feels right now, I'm also not looking forward to shampoo-ing since it seems that most hair sheds occur during and after shampoo-ing.

    I'll update as I go through this process, here's hoping I can hold onto as much hair as possible!

  • mobscene207
    mobscene207 Member Posts: 33
    edited June 2018

    Day 29 and I still have all my hair! I am so happy with the cold capping results. The only thinning I can see is likely a result of me picking at the dry spots on my part (I know...stupid. But half the time I don't even realize I'm doing it!).

    I am using Penguin caps. I was switched from Taxol to Abrabraxane this week, due to a reaction to Taxol. The infusion time for that is only 30 minutes, and there are fewer premeds. So I was only in the chair for a little over an hour (including 30 minutes of Herceptin), reducing my capping time to about 5 hours. The three hours at home are so easy -- yesterday I washed the dishes and got some work done on my computer during that time.

    My side effects have been fairly mild - migraines being the worst of them. Since I don't feel sick, I am so grateful not to look sick either. I truly think it is helping me maintain a positive attitude about this whole cancer thing.

    To anyone considering cold capping, I urge you to give it a try. I know the added expense can be a burden - for me, it's worth every penny!

  • sherryowang
    sherryowang Member Posts: 29
    edited June 2018

    Hi ladies! I wanted to give some inspiration! I was active on this board last summer. I was diagnosed with ovarian cancer, at the age of 23, but was on a protocol common to BC. I did 17 rounds of carbo/taxol, and finished on July 20, 2017. I felt like I lost a LOT of hair during chemo, and it looked like a TON, but no one else could tell. I could barely tell myself. So keep going, and remember that even if it looks like you're losing a lot of hair, it really is a negligible amount. It sucks, but its SO WORTH IT.

    image

    My most recent hair app, 11 months post final chemo. I brought out the bleach and chopped off dead ends. I was so emotionally attached to my length, but finally was able to part with over 5 inches! It felt symbolic for me - I'm more confident in my health, and realize that my hair isn't going to shed anymore.

    image

    6 months post chemo


    image

    During. Washing my hair was so traumatizing for me, so I kept my hair in braids for nearly 20 months, and washed it as little as possible.


    image

    My hair one week before I started chemo



Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.