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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Missyjean
    Missyjean Member Posts: 9
    edited June 2014

    I am sure it is a big no no and I've only done it a couple of times. I had a big interview this past week and I just couldn't make my own hair look decent without a flat iron so I wore the wig. When I do use the wig I am quick to take it off when I'm done.  This is probably why my scalp has been sore and itchy though. I was so nervous and sweating and then a wig to top it off, literally! Does anyone use clip in extensions or anything to help on those bad hair days? 

  • Hortense
    Hortense Member Posts: 718
    edited June 2014

    warrior woman - Your hair will get thick again. Don't worry.

    At almost two years after chemo ended, my hair is thick, shiny and very healthy looking. I get compliments all the time. I'd wondered toward the end of chemo and during the next two months, if it would ever be thick again. I was thrilled beyond words when I discovered a dense regrowth of new hair at about the two month PFC date. To my surprise, it came back in a variety of colors from pale, almost white areas, to grey areas, to one section of what looked to be black - a color I have never had. Fortunately, a good colorist made it all back to a glowing honey blonde :) where it remains today, with her help.

    The first 6 inches or so of new hair had a definite soft wave to it caused by chemo - my hair has always been straight, but as it has grown longer and been trimmed, it is disappearing on all but a few ends. It seems that my hair is returning to its natural straight growth pattern.

    As some others have also reported, I have been interested to find that I have much less hair on my legs, underarms and "down south" as someone amusingly called it, than before chemo. That tells me that if I had not used cold caps, the same thing might have happened on my head, which would not have been good. I do not have to shave my legs very much as I usually don't see much growth, which I do not mind at all. That's a nice side effect of chemo.

  • wyomama
    wyomama Member Posts: 79
    edited June 2014

    I will be so psyched if I have to shave and wax less! There has to be some good se's of this crapola, right??! ;)

  • OneTexasDay
    OneTexasDay Member Posts: 84
    edited June 2014

    missy, I don't see why wearing a  wig makes a bit of difference except when you are actually wearing the cold caps before during and after infusion. I mean....We wear caps .... What is the difference?  

  • FL_sunshine
    FL_sunshine Member Posts: 42
    edited June 2014

    The caps are freezing cold as opposed to a hot wig.  They do not recommend wigs, but it is very difficult to follow all of that to a "T".  I'm trying though! 

  • FL_sunshine
    FL_sunshine Member Posts: 42
    edited June 2014


    Did anyone else experience something like "cradle cap" on your scalp?  My first treatment was 16 days ago and I started to notice these white flakes in my hair.  I looked closer and large portions of my scalp are covered in this scaly/scabby looking stuff that flakes off.  I don't know if it's chemo related or cap related.  I'm also starting to shed.  Nothing severe, but finding 10 hairs on my shirt instead of 1 or 2.  Keeping my fingers crossed!!

  • mdg
    mdg Member Posts: 1,468
    edited June 2014


    Others did have cradle cap like stuff!  I did not personally.  I am sure others will respond with advice.  I know they used apple cider vinegar (I believe) when washing to help with that.  Can anyone help her out??

     

  • wyomama
    wyomama Member Posts: 79
    edited June 2014

    I got bad cradle cap during the first tx. Had flakes that were dime and nickel sized. Yuck!! I added a tsp of Apple cider vinegar to my shampoo like one of the other ladies suggested and it worked like a charm. No more cradle cap :)

  • m1970
    m1970 Member Posts: 261
    edited June 2014

    there is an article about cold capping on this site.

    http://www.breastcancer.org/tips/hair_skin_nails/cold-caps

    Please check it out and provide feedback if you think it's not accurate.  There is one area that led one person to believe the caps work better on Adriamycin than TCH which I understand to be the opposite.  I don't know anyone who does just Adria, just taxanes.  It's always ACT, TCH, or CT.  Has anyone heard of not doing some taxane?  I'm sure anything is possible but that's not typical. 

    "It’s also important to know that cold caps don’t work for everyone. In two small European studies, cold caps were considered effective in about 50% of the women that used them. Women who got only anthracycline chemotherapy had better results with cold caps than women who got only taxane chemotherapy.

    Adriamycin (chemical name: doxorubicin), Ellence (chemical name: epirubicin), and daunorubicin are anthracyclines,"

    Taxol (chemical name: paclitaxel), Taxotere (chemical name: docetaxel), and Abraxane (chemical name: albumin-bound or nab-paclitaxel) are taxanes.

    Women who got both an anthracycline and a taxane in their chemotherapy regimen (combination chemotherapy) seem to have the worst results with cold caps, though some of them still kept some of their hair.

    "

  • Daye
    Daye Member Posts: 63
    edited June 2014

    m1970- I had previously read that article and was a little annoyed with it. My belief is that if the caps are used correctly with TC or TCH, then the hair loss will be minimal enough to not need a wig. The oncologist that I saw at Emory told me without hesitation that the caps would definitely work with TC. I haven't ready every post on this thread, but I have read a majority and I don't think there is anyone that didn't have success with the caps with the TC regimen. From what I have read on this thread, the caps seem to work about half the time for women receiving ACT. I know a couple ladies on here received 12 weekly taxol and had great success with the caps, but I haven't heard of anyone who only received adriamycin. I do believe this article should be worded differently, especially the part about the two studies showing that the caps only work 50% of the time.  Maybe they could at least mention some other studies that have shown over 90% success on certain chemo regimens.

  • jc254
    jc254 Member Posts: 332
    edited June 2014

    They also make it sound like the Dignicap is currently available to the general public rather than only to those who enroll in a clinical trial.   Daye, I agree, for those on TC or TCH the success rate seems to be upwards of 90% if the caps are used properly and about 50% for ACT.  I have contacted the moderators on more than one occasion to point this out.  Not sure where they're getting the information...   

  • jc254
    jc254 Member Posts: 332
    edited June 2014

    Below is a copy of the message I sent to the moderators last September...


    cold cap information from jc254 Sep 27, 2013 06:08PM

    Moderators- I have great respect for the work you do and really appreciate this website.  But I feel compelled to point out that BreastCancer. org's site contains some inaccuracies about cold caps. 

    The caps work much better with taxanes than with anthracycline (your information is backwards).  Also, some treatment centers have special freezers to chill the caps (but not many). Most women who use cold caps transport them to the treatment center in coolers filled with dry ice. The caps are kept in your home freezer between treatments. Finally, the Dignicap is not yet available to the public in the United States. Plans to begin a clinical trial of the Dignicap were just recently announced.

  • mdg
    mdg Member Posts: 1,468
    edited June 2014

    I will be curious to see what the mods respond with

  • jc254
    jc254 Member Posts: 332
    edited June 2014

    I sent that message back in September, and here's the response:

     

    RE: cold cap information from Moderators Sep 27, 2013 06:35PM

    Hello jc254, thank you for your information. We'll send your comments on the main site's text to the BCO Editorial team for their review.

    Judith and the Mods


  • CoastalXPat
    CoastalXPat Member Posts: 33
    edited June 2014

    JC and M1970, you inspired me, I just sent the moderators a PM now with similar information. Maybe if enough folks pipe up...

  • makingway
    makingway Member Posts: 465
    edited June 2014

    The reason they are citing the caps are only 50% effective is because they are using data from the Dignicap trials. Dignicaps do not reach a low enough temperature as compared to Elastogel and Penguin cap users.

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited June 2014

    Wow, I appreciate the efforts to correct the misinformation.  When I was making a decision to use the caps I was told by almost everyone that they don't work.  If not for the women here posting their success stories and helping me along, I'd never have tried them.  

  • eloqui
    eloqui Member Posts: 37
    edited June 2014

    I tried the Penguin caps with my first round of TC yesterday and am worried they may not have worked due to some snags we went through. 

    We averaged a cap change every 40-45 minutes instead of every 30 due to time spent selecting and putting on the new cap and headband. also some of the caps were too warm than the recommended - 34 C, esp the second round where we refroze them, one as high as - 25 C. Most of them were around - 30C in the coldest part, but they did have warmer spots around the edges. The headbands I ordered never got below - 20C. I'm now a little worried that the caps may not have work..

    Anyone run into similar issues and still keep their hair? Any tips for round two of Chemo?

    We ordered 100 lb of dry ice slabs and chilled the caps 3-4hr prior to chemo. Thanks!

  • schoolmom
    schoolmom Member Posts: 327
    edited June 2014

    i had the same issues. We took the next CSP out a few min early and if it was not cold enough put dry ice directly on and under it. I had the ice doubled bagged in zip locS with opposite ends head to toe. Don't forget to leave a 1 inch unzipped opening on each bag or they will explode. The caps get cold fast this way out of the boxes. Same thing happened to me during last few hours after done with chemo drip. Good luck. FYI get the xl baggies.

  • jc254
    jc254 Member Posts: 332
    edited June 2014

    You should be checking the temperature of the next cap 10 minutes before the scheduled cap change.  Like schoolmom, sometimes we had to take a cap out of its box and place it directly on the dry ice (assuming it's bagged) to get it cold enough.  It's hard to get a consistent temperature all over the cap. We just picked a spot in the middle of the cap to check the temperature each time and went with that reading. I don't think my headbands ever got cold enough either, don't worry about that.  

  • eloqui
    eloqui Member Posts: 37
    edited June 2014

    Thanks schoolmom and jc! I'll try those things next time. Did you use dry ice pellets in your bags?

    Hoping I'll still get to keep my hair after these first time snags.

  • jc254
    jc254 Member Posts: 332
    edited June 2014

    I used dry ice slabs.  A lot of us had snags and things worked out fine.  Crossing my fingers for you...

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited June 2014

    I agree with JC & Schoolmom and wish to add that many on here made mistakes during capping and managed to survive.  Here's hoping you'll be fine too.  You should know how well the caps worked before your next infusion.  

  • schoolmom
    schoolmom Member Posts: 327
    edited June 2014

    i had about 8 blocks and the rest in pellets...about 4 bags of pellets. They dissolve faster than the blocks. I used 2 rolling ice chests. We were a spectacle coming in with a suitcase full of supplies and 2 icechests!

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited June 2014

    And in addition my friends always brought food and other entertainment which meant even more bags.  As much as we tried to keep a low profile, they always saw us coming.  But ya know what?  I kept my hair and had the last laugh.

  • CoastalXPat
    CoastalXPat Member Posts: 33
    edited July 2014

    It true, between the coolers, electric blanket, laptops,
    tablets, books and snacks everyone knows you're coming! But maybe it's also a
    way to help get the word out re. cold caps? I'm still amazed at how many folks haven't heard of them, especially
    among the health care pros.

    So now after 3 months of chemo (and done!) I'm noticing my
    hair mostly thinned on the sides, over my ears. I'm wondering if that's because
    the Penguin caps aren't that uniform in their temperatures. But I was also wearing a bandana under the caps to keep my hair from
    getting caught in the velcro and it might have been more bunched up along the
    sides, insulating my head a little.

    This makes me wonder a lot about the Dignicap trials, it
    sounds like they're only cooling to 0 deg C?

    As for dry ice, we had the opposite problem, as
    the day went on the caps got too cold, down below -50C. We used slab dry ice
    from a distributor, and the caps started cold from my home freezer. My Dear Sweetheart ended up kneading the caps on his lap to warm them up to -32C. But by the second round my hospital got a
    freezer through the Rapunzel project - this really helped with regulating the
    temperature!

  • CoastalXPat
    CoastalXPat Member Posts: 33
    edited July 2014

    One more bit about the article at http://www.breastcancer.org/tips/hair_skin_nails/cold-caps , I wrote the mods & they promptly replied:

    Dear CoastalXPat

    Please feel free to post these details on the Forum. We will forward your feedback to our Editorial Team to assess
    how the BCO Article may need updating with your feedback as well as jc254's.

    The Mods

    ---

    Glad they remembered JC's feedback!  I hope the Editorial Team responds.  And since we're on a new page here is what I wrote them:

    Dear Moderators,

    First, great website! The articles and user
    comments have been very helpful for me personally in dealing with this
    rough disease.

    I noticed that some items on your site about cold
    caps aren't quite right
    (http://www.breastcancer.org/tips/hair_skin_nails/cold-caps ). I say this
    as someone who used Penguin Cold Caps through 3 months of chemo and is
    happy with the results.

    1. Your article states: "Penguin caps are chilled in a special freezer (the freezer in your
    house can’t get the cap as cold as it needs to be) and then delivered to
    your chemotherapy treatment center, each in its own storage box."

    This
    isn't quite right. During the rental, users keep Penguin cold caps in their
    home freezer. Before chemo the caps need to be chilled to much colder
    temperatures than what a home freezer can do so most patients use dry
    ice. Users will need coolers, dry ice, and an infrared thermometer. The
    temperature of the caps is regulated by moving them in and out of the
    cooler. A few hospitals have acquired special freezers that can keep the
    caps at the required temperature (e.g. see the Rapunzel project, esp. http://www.rapunzelproject.org/ColdCaps.aspx),
    which makes the process much easier since you don't have to purchase
    and handle dry ice and it's easier to get the caps to the right
    temperature (caps that are too cold can cause frostbite, caps that are
    too warm won't work).

    2. Also, my understanding is that the caps
    actually work better with taxanes than anthracyclines. I had docetaxol
    and they did work.

    3. There is another type of cap that is also available through Chemo Cold Caps. I haven't used these so can't say much. See http://www.chemocoldcaps.com/

    4.
    The DigniCap system is currently only available through clinical trials
    in a couple of cities in New York, California, and North Carolina. (see
    http://www.dignicap.com/patients/information-for-us-citizens/ and http://clinicaltrials.gov/show/NCT01831024)

  • RainDew
    RainDew Member Posts: 228
    edited July 2014

    hi cold cap experts!!

    First, apologies in advance if this has been asked before (this thread has 372 pages on my phone!! I am working on it....)

    I am looking for some advice. Start chemo next week (TCx4) and have decided to go for it with cold caps. I received my schedule today - all makes sense except one thing - schedule indicates that I need to keep capping for 4 hours after treatment is done. For some reason I had thought it was 2.

    Anyone else done TC? Did you leave for 4 hours? (It seems an awfully long and uncomfortable time...I will do it if that's what is required, but I was curious about others' experience).

    Fwiw, I have baby fine hair, but tons of it...wasn't sure if this is 'medium' or 'thick' on the form. It sits relatively flat to my head, there's just a lot of it and it tangles easily.

    Any input greatly appreciated!! I am pretty scared of chemo, but really hoping this works for me...

    Thanks in advance!! And again,  apols if this was asked before.

    Rain

  • Daye
    Daye Member Posts: 63
    edited July 2014

    Hi Rain!

    I did TC and unfortunately did wear the caps for 4 hours after treatment, but the last few hours of the caps really wasn't too bad.  I would be home by then and just lay on the couch and drift in and out of sleep, so it went by pretty fast.  For me, the first cap was uncomfortable and would give me a headache, but after that, it really isn't bad!  I took a couple Advils before each treatment.

    I also have a lot of fine hair.  I can't remember what thickness level we ended up using, but the temperature I was told to have the caps at was -32 C.

    Good luck with everything!

  • lbrewer
    lbrewer Member Posts: 96
    edited July 2014

    wearing it after treatment is very important. The chemo is still pulsing through your system at that time.  You also need to change caps in accordance with the schedule. We pulled off the expressway and changed on the way home as it is over the time limit. 

    Wearing them during the week is also a very good idea,  the chemo in your system is weakened by that time but still there,  weekly caps stay in your freezer so they are not as cold.  Some people have trouble with hair getting stuck in the Velcro but anything between the head and scalp might reduce effectiveness. I did end up using a mesh wig liner which I thought was much less insulation than a scarf or bandana.  Don't pile your hair up under the caps.  

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