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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Lmflynn
    Lmflynn Member Posts: 273
    edited November 2010

    Ang 7 ~ Thanks.  Can't wait to get to that comfort level that I won't lose my hair and then can wash it :-)   Think I need to wait a few more days....

    Also am using Tom's stick and definitley need to try the roll-on b/c the stick doesn't work that well..

  • sebm9
    sebm9 Member Posts: 488
    edited November 2010

    Hi everybody,

    I had my first warm hairwash last night! woo hoooo! First time warm water has touched my head since April 18. I feel like my entire brain and psyche were washed also. My hair shedding has officially stopped now; in fact, it's so busy growing back in, it seems fuller every day. 

    Lmflynn: congratulations! I had a huge sense of relief after my first chemo and PCC session, it was no longer an unknown. Keep detoxing with water and tea, and try to stay as active as you can. This will help detox you and you'll be feeling pretty close to 100% very very soon. I felt so normal going through chemo, I wondered if they'd missed my veins. Anecdotally, I've heard several other Penguinistas were told by their doctors that they were the poster-women for chemo because of so few side effects and such great spirits. (The latter is contagious so pass it on :-)) 

    Cheers,

    Susan 

  • Lucky60
    Lucky60 Member Posts: 59
    edited November 2010

    I am reposting the info below about a non-aluminum deodorant for  Sashasz3 since I spelled it wrong in the http address the other dayEmbarassed. It's a good product. Due for another hair wash tomorrow, in COLD water this time, wish me luck...

    ***

    So Ladies, I lost a lot of hair upon washing at Day 24 after first chemo and am stressing about it, although it seems to have slowed down a little now. Very thin around the ears and back of my neck, and still shedding. I'm so scared to wash, comb or even rinse it again. What I'm wondering is, do you think that cold water is that much better than luke-warm? I thought "tepid" in the instructions meant "luke-warm", but am seeing now in some of the old posts that some of you are using actual COLD water. Think that really makes a difference? Thanks.

    Also, some of you recommended Crystal deodorant, but that does have aluminum, just in a different form. I found a good non-aluminum one that works better (for me) than the ones from the health food stores--it's Bubble and Bee Herbal Spray--see bubbleandbee.com/deodorantchoice.html . You can customize the scent also, which is nice. Just thought I'd pass that on. Lucky.

  • KathyG62
    KathyG62 Member Posts: 2
    edited November 2010

    Hi, I've just started using the penguin cold caps and after the first time had some scabbing on the top of my scalp. Has anyone else experienced this and what have you done to prevent or deal with it? Thanks - Kathy

  • cmksocal
    cmksocal Member Posts: 163
    edited November 2010

    Kathy - I know that scrabbing was discussed before (I didn't have the problem).  If an informed person doesn't answer your post soon, try using the Search Function to find the old discussions.

    Colleen

  • KathyG62
    KathyG62 Member Posts: 2
    edited November 2010

    Thanks for the tip!

  • jpmercy
    jpmercy Member Posts: 94
    edited November 2010

    Hi Kathy

    i had/have this problem too. i am using the caps weekly with taxol so i unfortunately have to freeze my head once a week and i was getting scaps...i was told and found that it does help to make sure the white part of the caps are wiped down really well and they arent wet at all before putting on your head. that seemed to help and it was only noticiable the first itme the other weeks have bene pretty good. also i was using baby shampoo i switched to the Pure shampoo and that seemed to get rid of most of hte flakyness.

    hope this helps!~

    jen

  • melissal
    melissal Member Posts: 3
    edited November 2010

    Hi Everyone - I'm new, and have been accepted into a trial at UCSF for the dignitana cold cap (http://dignitana.com).  I have been reading all of your extremely helpful tips re: cold caps and really thank all of you for sharing this information.

    I am still trying to locate a source for Pure Results Regis Designline shampoo and conditioner.  If anyone has some suggestions, I would appreciate it.

    I am also trying to determine whether I should try using Latisse on eyelashes and eyebrows during chemo.  I'm checking with my oncologist, but noticed that some women on this forum used it during chemo.

    My first chemo session of Taxotere, Carboplatin & Herceptin is scheduled for 11/23 - I'm a little nervous, but I think I'm ready to fight this once and for all (I'm dealing with my 2nd breast cancer).  

    Thanks again for all the great advice! 

  • sashasz3
    sashasz3 Member Posts: 97
    edited November 2010

    Thanks for the update  Just got my Latise  when do you start---before --during--how often---???

  • jpmercy
    jpmercy Member Posts: 94
    edited November 2010

    Melissa

    i just googled hte shampoo and found it online and ordered it. I am using Latise on my lashes, i am on weekly taxol so i know the effects of loosing my lashes are not as prominent as with TCH but my lashes are VERY LONG after one month of use. i have not used them on my brows but i know woman have done this if i start to loose them then i think ill try it. i started using it a week before chemo and have had great results. Also, i had a BMX and my PS gave me free samples of latise! dont hesistate to ask, they get free samples of things all the time and when my PS heard i needed chemo he offered to give me the samples as long as my onc was ok with it. otherwise i believe it is $100 for twelve weeks. i plan to continue to use it for a while after chemo as many say the lashes fall out once chemo is done.

  • melissal
    melissal Member Posts: 3
    edited November 2010

    Hi Jennifer - Thanks so much for this information!  Were you able to find the Pure Results conditioner as well?

    How wonderful about the free samples of Latisse!  I did find a site where you can order it for a more reasonable price - www.latisse.bz.  So your oncologist was ok with you using Latisse during chemo? 

  • torigirl
    torigirl Member Posts: 748
    edited August 2013

    I found Pure Results at the Walmart in their beauty salon..it is guaranteed with them as well and they have the conditioner too....they were running a special, buy the shampoo and get the conditioner for half price...every little bit helps...

    Tori 

  • melissal
    melissal Member Posts: 3
    edited November 2010

    Thanks Tori - I'll check it out!

  • CvilleJanine
    CvilleJanine Member Posts: 4
    edited November 2010

    About the scabbing with the penguin caps: 

    1/  Are you using the strap that goes under the chin?  Make sure that it is loose.  Or maybe don't use it?

    2.  Put 1-2 layers of gauze on the crown of your head.  (Many gauze bandages are folded.  Unfold them completely to get the 1 layer of gauze.  You want a small barrier but one that the cold will go through)  Change the gauze when it gets too damp.  I learned to watch the color of my scalp, especially the crown area- if it was getting reddish/purplish then I added the gauze.

    I actually had a sensitive spot on my head and between the sensitive spot, the frost on the caps( I didn't know to wipe them down and my crown hair was wet and frozen), and the chin straps too tight I ended up with a small bald spot on the top of my head.  I had some frost bite- the top of my head was purple and oozing- the dermotologist said it was temporary.  This happened after my 1st treatment so I was nervous to use the caps with the bald spot. I covered the spot with a kotex mini-pad and all went ok.  The hair there started sprouting some during chemo but didn't grow much.   

    I doubt Frank would endorse this, but on my scabs I used olive oil at night and wear a shower cap to bed.  In the morning I would pat some shampoo on the spot and rinse it out.  If it was just scabby skin I probably wouldn't have done anything.  But my first scalp layer came off my head and rooted hairs were still in it. (Derm doc said my scalp was shocked)  After the scalp skin was softened I worked with a pin to separate the hairs from the scab. 

    It was a pain, but I had enough hair to hide it- or I would wear a headband or scarf in that area.  And it was still better than being bald.  Hope that helps.

    Janine

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2010

    Wow... great info about helping avoiding scabbing.  Do they have all this info in "instructions" that come with the caps?  That would be good for people to know and avoid having it happen in the first place.

  • Lmflynn
    Lmflynn Member Posts: 273
    edited August 2013

    Hi everyone, I'm at 5 days post first TC treatment.  Washed my hair today... boy was it happy!  Even in freezing cold water.... I'm so glad we're talking about the "scabbing"  -- which I don't have (yet) but boy does the top of my head hurt.  It's just getting back to normal now.  Other than fatigue I have to say I'm good.  I took a walk yesterday for 25 minutes outside and it felt great. 

    I don't know if everyone felt this way -- but I am scared to touch my head.  I'm scared to comb it, sleep on it, etc.  I think I'm just so hoping the PCCs work and the waiting is scary.

    I am wearing a cap out of the freezer everyday for about an hour. 

    For future information, Frank had provided me with a system given to him to use 8 caps and two coolers.  It did not work for me.. by the time we went through the 8 and needed #9 (which was #1) it was not cold enough.  I had brought 2 "emergency" caps with me to the infusion center (we stayed there the whole 9 hours!!) and I'm thankful I did or I would not have had a cap to use.

    For the next time I am bringing 3 coolers with 12 caps -- and using all 4 in each cooler then doubling back to the first cooler at the end.  It seemed the more we opened and closed the coolers and tried to get them back in their "assigned" place the ice "melted" much more quickly.  But the emergency cooler that we only opened once was our savior that day.

    Either way -- I am so grateful to this site and the women that offer so much information and experience ... and of course inspiration!

  • shadow2356
    shadow2356 Member Posts: 93
    edited November 2010

    Every time I had chemo my head hurt a little afterwards. It lasted for awhile so I don't think it had to do with the caps. I had read that people have that weird feeling right before their hair fell out in clumps so it really freaked me out. I did have the feeling, but I didn't lose the hair. So, for those who are having that feeling don't freak out.

  • gmp300
    gmp300 Member Posts: 196
    edited November 2010

    About Scabbing on top of your head.  Mine did that also and when I washed my hair I could get them of.  It happened a few times but I never lost my hair in that spot.  I did have the caps really cold -35 to -40 which is not recommended at this time.  I would be careful with the oil and shower caps on your scalp.  Your hair is hangng on by a thread and you don't want anything in the roots and also you don't want to get your head to hot and sweaty which would open up your hair follicles.

         One thing that helps is don't use the gold strap that goes from the top of your head to under your chin unless you have very thick hair than you NEED it.   The gold strap around the top of your head pulls that spot to tight and it is usually where your part is.  If you have thinning going on plus your part it may get to cold in that spot..  A piece of guaze on any bald spot is recommended.  Hope this helps.  

    Take Care,  Geralyn  / gmp300 

  • zlota
    zlota Member Posts: 40
    edited November 2010

    hi all, ok so its been 2 weeks since my first THC treatment and I'm starting to panic, I was so happy about the cold caps and idea of not loosing hair but today I pulled around my ears and some came out ( maybe around 5) then I pulled gently on top of my head and nothing came out I'm so upset thinking that I'm going to loose it that maybe i didn't put the caps right the first time and my hair will come out. When I comb i noticed that some is coming out, not much but more than I would normally loose. Is this shedding normal? please please tell me that it is, this disease took already so much from me I don't want to loose my hair.

  • cheyenna
    cheyenna Member Posts: 119
    edited November 2010

    zlota, please do not worry, we all lost hair around the ears, you will start to shed, but evenly all over your head, dont stress its not good, and dont pull your own hair out!!! lol your gonna make it, Frank Fronda says if you get to day 23 with no clumps, you have made it, but remember you will shed..

    thinking of you,

    Chey

  • makingway
    makingway Member Posts: 465
    edited November 2010

    Lmflynn and other cap users with 8 caps- I have used this method twice. The first time it worked well. The second time the last 2 caps I needed (#13 and #14) didn't freeze as well. The coolers which are used are important. I use an Igloo 'Ice Cube' 60 qt.  I place the dry ice, which comes in it's own plastic bag into a 2 1/2 gallon ziploc bag. DO NOT CLOSE BAG. Don't only layer the bottom of the cooler with the dry ice. Cold 'sinks'. Be sure to cover the caps (in their boxes) with the blocks of dry ice. Also line the inside perimeter with the blocks. Any leftover gaps fill with broken, chipped dry ice in the 2 1/2 gallon ziploc bags. Don't skimp on the ice. If room allows cover inside top of cooler with a thick towel. Here is a link showing how to use dry ice for either chilling or freezing. Packing is done dependant on what your aim is. http://www.purepartyice.com/graphics/Dry_ice_Brochure_4_4.jpg

    Hope this is helpful :)

  • Lmflynn
    Lmflynn Member Posts: 273
    edited August 2013

    Thanks makingway I do appreciate the information and so glad that it has worked for you - still I'm just not comfortable with the 8 caps - it was too close for me after all the work and preparation.

    I did buy 120# of dry ice in both block and pellet form and had those coolers packed tight with towels on top - I also used 2 boxes of ziplocs to pack the pellets and blocks. I have the Igloo 60 quart coolers as well.  There still was not time to refreeze the first caps.  I used 15 caps based on the infustion time and 4 hours after -- not comfortable using only 8 - will use 12 minimum next time - it seems like an awful waste if you can't get a cap after 8 of them to the right temperture. As I mentioned -- I'm so thankful that I brought two frozen solid "emergency" caps.

    Other than that -- I'm with zlota - the waiting is such a stressor!!!!  I'm post 7 days from my first treatment -- and every hair that falls out has me wondering ....  I do have confidence based on all the success, but there is that thought in the back of your mind...

    No real side effects -- fatigue (has been extreme at times) & stomach issues but other than that hopefully the next two weeks will be me feeling better before next TX.

    But I am going to THINK POSITIVE!  zlota - keep us updated!  I'm sure you will have success too!

  • Ang7
    Ang7 Member Posts: 568
    edited November 2010

    Last Herceptin will be today for me ladies!

    I hope I can be positive about the future and get back into the swing of things with my kids...

  • Lmflynn
    Lmflynn Member Posts: 273
    edited November 2010
    Ang 7 ~  Hope you have a wonderful celebration to mark the occasion! - even if it only occurs in your head and heart.  Good for you!  Enjoy.... Laughing
  • motherofpatient
    motherofpatient Member Posts: 124
    edited November 2010

    My daughter, 42, is to start chemo and we are hoping to get the cold caps. What shampoo should I get for her? Anything I should have on hand?

  • jpmercy
    jpmercy Member Posts: 94
    edited November 2010

    most of us use Pure by regis, i got mine online but just heard that the salon inside most walmarts carries it! PM or post to any of us and we will gladdly help you and your daughter out with the process! my mom has been my helper on chemo days....we are getting through it one week at a time! your daughter is very lucky to have you!

  • sebm9
    sebm9 Member Posts: 488
    edited November 2010

    Hi motherofpatient; if you PM me with your email, I can email you my writeup about my method/pointers for using the caps. Thank you for being an anchor in her circle of care! 

  • motherofpatient
    motherofpatient Member Posts: 124
    edited November 2010

    joycegian@yahoo.com - Please put Cold caps in the subject line so I'll pay attentnion to it immediately - Thanks, I want all the advice Ican get so I'll be prepared to help. How many of you had long hair?

  • motherofpatient
    motherofpatient Member Posts: 124
    edited November 2010

    How much dry ice do I need to buy per treatment?

  • Ang7
    Ang7 Member Posts: 568
    edited November 2010

    Hi motherofpatient~

    I had hair past my shoulders and I did not seem to have any trouble with the Cold Caps due to the length. 

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