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Cold Caps Users Past and Present, to Save Hair

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  • motherofpatient
    motherofpatient Member Posts: 124
    edited March 2011

     Medical journal abstract on Scalp mets -Breast Cancer Research and Treatment. -Good news

    Abstract

    Chemotherapy-induced alopecia is a commonly feared chemotherapy side effect and can be prevented using scalp cooling. Scalp metastasis is a rare site of recurrence. There is a question about whether or not the risk might be increased with the use of scalp cooling. Two cases of breast cancer with scalp metastases as first metastatic site are presented. The first patient presented with a scalp metastasis as first metastatic site 9 years following breast cancer chemotherapy treatments; she used scalp cooling for the adjuvant treatment. Second case presented a scalp metastasis as first metastatic site 7 years following treatments for her first cancer; overall, she used scalp cooling in only one of her six adjuvant chemotherapy cycles. Scalp metastases as the first site of recurrence are very rare entities. Scalp cooling is unlikely to have contributed in the cases presented here.
  • geewhiz
    geewhiz Member Posts: 671
    edited March 2011

    I pop in occasionally with my 2 cents which I posted while I was in treatment, but I read the recent posts and can so feel the pain and anxiety...so I hope my experience helps soothe things a bit.



    I finished tchx6 over a year ago. I did the PENGUIN cold caps...stay the heck away from the scamming impostor Advance cold caps. Yes, I shed...a lot. I was freaked all the time, thinking I will be bald. I lost all the hair around my ears and sideburns. Noone could really tell. Just me. And I got all the way through, with a full head of hair. The regrowth is now about 6 inches and looks like a layered haircut...I get lots of compliments on the layers, which cracks me up, but makes me thank God for people like Frank Fronda who are so passionate about their life's work.



    I was also not obsessive about hair care. I listened to that angel Frank tell me about how the hair uptakes for a few days prior, and a few days after...so I did nothing during that time. HOWEVER, I washed it when it was dirty...with whatever shampoo was sitting in the shower. I highlighted it at the salon when my roots turned dark. And I blow dried and curled it all along.



    I know lots of the old guard will come on and say that's all a no-no.....but everything turned out great for me. We have so much that worries our minds, when we need to focus on healing. So ladies, cross worrying about your hair off your list. if you got the right cold caps, you will be absolutely fine!

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    GeeWhiz:

    Thanks for the hair input.  I agree, the more you obscess about it the worse it can be on us.  I'm being really careful now (day # of Chemo 1) but plan to wash on Sunday.  I did get the organic shampoos and conditioner (purchased at CVS) and I must admit that I like the way it makes my hair feel.  While I am using the Elasto Gels (and almost got trapped into Advance but for the posts here) and bought my own from ElastoGels and hope they at least do something.  Time will tell.

    MOP:  Thanks for that post.  Wish this type of information was more readily available to all gynecologists, BS's and Oncologists. 

    Arlene

  • geewhiz
    geewhiz Member Posts: 671
    edited March 2011

    I am not familiar with elastogels, but keep us all posted!!! I'd love to hear your results.....fingers crossed for you!!!!

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    There are quite a few of us here using the ElastoGels.  We have to change sooner than with the Elastos but we purchase them outright and they are brand new....

     Definitely will keep you posted.

    Arlene

  • cmksocal
    cmksocal Member Posts: 163
    edited March 2011

    Patwriter12 - If you have thick hair you are likely to have LOTS of shedding.  That has been the experience of many woman (including myself).  Even with lots of shedding,  I retain complete hair coverage over my entire head, though I had a very thin spot in one location.  Now 7 months PFC, my hair has filled in very well.  My beautician estimates that in another 3 months it will look like it did a year ago. 

    Colleen

  • jpmercy
    jpmercy Member Posts: 94
    edited March 2011

    Hi everyone just popping in to tell u about 12 weeks out n highlights came out great! Yay! Just in time for spring! I know that comes up a lot and wants to say I used the same old highlights my hairdresser always uses n no problems! Hope ur all doing great I was a penguin user and can't say enough about how keeping my hair helped me to move on after treatment! Take care everyone!

  • Ang7
    Ang7 Member Posts: 568
    edited March 2011

    WOW jpmercy~

    And to think I just waited A YEAR to do my highlights!

    I told you throughout this that I am a big chicken...

    Congrats to you!

  • yizbieta
    yizbieta Member Posts: 77
    edited March 2011

    Thank you, Ladies, for all of your encouragement about continuing the cold caps. It is comforting to know that the shedding, for example, is normal, as it is continuing today in greater volume- but I still have 95% of my hair, so I am okay for now. Need to wash it tonight- that will be interesting! It will be what it will be.

    I have never heard or read that toes and fingers may have side effects from Taxotere/Cytocen. It is good to know, since that is what I have as well. (TC every three weeks, six times. I am on treatment two as of Friday, April 1st.)  I did know aout the mouth sores, though I have not had them as yet.

    My sister and my friend have been researching how to help with the cold caps, and I am grateful. They have been practicing with them for treatment on Friday.

    I did update my profile to reflect where in the world I live. If there is someone out there who can also help me, I would be able to help them too, hopefully. I rented the cold caps and will have them until about June 30th so I could share, most definitely, and would be happy to do that if someone needs them as well. It will be difficult for my sister and my friend to do this, so that will be a big help. I also have the coolers.

    Again, thank you!

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Good luck Yizbeta:  There are several Cali ladies here and maybe some in your area who might be able to assist.  Good luck with that and don't forget to ask around your Infusion Center - nurses may know someone. 

     Note to everyone:  I am a long way from finished but my caps will be available (Free) when I am done and if all goes well, I'll be finished July 11th.  Remember, mine are the Elasto Gels which I purchased and brand new (I'm taking very good care of them too).  I'll for sure mention this again as I get further along. Pray they work!

    Day #3 after first Chemo (TCHX6) and feeling pretty darn good.  Did a good bike ride yesterday and will jog/walk today - need to keep my Exercise Trial log filled in.  Still having trouble sleeping and this is coming from someone who LOVES to sleep.  Sleep comes around 1 am and up at 6.  Not bad,I guess.

  • yizbieta
    yizbieta Member Posts: 77
    edited March 2011

    Thank you AreleneA for your coments and hopeful message. I would be very happy, as I have said, to share these PCCs while I have them and also help put them on, as I am on disability now (I am a teacher and could not do my job well through this!!!), and will have the time to do that for someone else. I apologise to everyone for that bit of negativity about my helper person- I felt so blind sided by that, but hey, if it doesn't work out- it is best not to have that person around, right? I got into a slump about it....so I am back now full positive force.

    Lots of shedding this morning- washed my hair last night and did not comb it just to give it a rest from the shampooing and let it air dry overnight. THis morning, combing it (long hair) was difficult without some pulling but got through it and then scooped up the hair to put in a labeled bag for this day's shedding. I do have to say though, no one could tell I lost so much today- I still have lots on my head and my hair is blonde and thin but long. Kind of whispy now but still on my head.

    :)

    thanks everyone and I would love to meet someone local! :)

  • yizbieta
    yizbieta Member Posts: 77
    edited March 2011

    What are ear pops??

    Thanks again everyone- I have learned so much and calmed down so much from reading on this blog!! Good luck to all of us!

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Ear Pops are little covers for your ears to protect them from the cold caps and I just ordered mine ($7.95) - I had a difficult time getting things to stay on my ears so hope these help and if not, they'll be great for next winter.

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited March 2011

    Hi Ladies

     A quick update, all is well thus far, too soon to put up progress pics. However the waiting after day 15-21 is agonizing. I hope they worked!!

  • Lmflynn
    Lmflynn Member Posts: 273
    edited March 2011

    Jpmercy~ so excited for you.... I am 11 weeks tomorrow...and plan on getting my hair done next Saturday...please post a pic! You will give me the courage to go & maybe highlight too!!....my hair has finally seemed to stop shedding...or should say seems normal...few here and a few there.



    It is fun to see the new family of women using cold caps and saving their hair! Good luck to all of you!



    I am still thankful every day that I found this site and used the Penguin Cold Caps!!

  • grannysgym
    grannysgym Member Posts: 3
    edited March 2011
    Wow, was just reading all the posts on hair loss (or not) - how exciting!  I will be seeing my oncologist tomorrow to set up chemo and the hair loss has been my worst fear!  I am going to the websites now!   Thanks for all the good informtion Smile
  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Welcome Granny:  Sorry you find yourself here but good luck with the Caps.  Keep us posted and let us know if we can help in any way.  I'm still new here but lots of good, knowledgeable ladies here.

    Arlene

  • mdg
    mdg Member Posts: 1,468
    edited March 2011

    Hi all - just posting an update.  I am on 4x of taxotere and cytoxan and I am 29 days out from my first chemo and 8 days out from my second chemo.  THe caps are working for me.  Yes, my hair looks gross today, but I would rather have a bad hair day than a NO hair day anytime!  I just wanted to share my experience so far and tips for things that have helped me.

    As far as shedding...I had ZERO shedding until day 21 after 1st chemo.  It started to shed a tiny bit more than usual for a few days and then by day 4 after that chemo when I washed it was more pronounced.  It has started to deminish (the shedding) and is almost back to normal...still just a tiny bit more than usual.  I have not washed since last Sat (ick!) but am getting creative with headbands and cute hats.  I am not working now so I don't care if my hair looks gross to run erronds and hit the gym.  I was washing twice a week until last Sat but now that I have been shedding I will wait and see if once a week will be OK or if I can manage twice a week or at least every 5 days or so.  I am using Burt's Bees shampoo/conditioner and the Organix shampoo's/conditioners.  I am careful not to get any conditioner on roots.  I am also washing in cold water...I am already use to it.  I do gently use a wide tooth comb to run the conditioner through my hair before rinsing.  I use a small amount of shampoo despite having long hair.  I am washing over my large bath tub with a small hand held hose attachement I got at Walmart for $8.  If you barely put the water on there is no real water pressure to worry about.  You can easily guide this where you need to rinse and get to the roots easily.  This is working well for me with long hair.

    As far as the root touch up.  I am using Colormark and at first did not like it because it seems to run and turn my scalp orange (I am using the dark auburn color) but I found a solution.  I bought an eyebrow comb and I dab the Colormark on the comb and gently just comb at the roots of the area I need to touch up.  It does not bleed on to the scalp this way.  Since I am not washing/rinsing daily the color lasts until I wash again.  If it does bleed onto your part line, just get a q tip with cold water and gently dab the part line and it will remove the Colormark.  I especially like the pointed tip q tips you can find at beauty stores but I am sure regular qtips will work. 

    As far as any styling gel.....on the days I try to go curly/wavy, I gently comb through my hair with a wide tooth comb and hold at the roots so I don't tug on anything.  I then wrap my hair in a small towel and let it sit in the towel for a while.  After it comes out of the towel it looks kind of wavy and hair is kind of clumped together....I simply apply a very small amount of Be Curly (Aveda) on hands and scrunch from the ends up.  I don't use much and mostly focus on the ends of the hair.  I just let it dry.  A bit later I sometimes use the hairdryer on cold with an air diffuser just on the ends to help dry it a little.  I have also used Giovanni hair straightening gel to decrease the frizzy look at times.  I have not tried to wear my hair straighter since my shedding began...I will let you know if I do, how it goes!  

    I sleep in a satin cap at night  on a satin pillowcase that I go from Sally's Beauty Supply.  Sometimes I put my hair in loose braids in the cap.  So far this is working for me.  Again you should follow the instructions provided by Frank for PCC's.  This is just what is working for me.  I also noticed that I have started to thin a tiny bit with my L eyebrow.  I started Latisse on brows and lashes in the past few days just in case. 

    If anyone is considering trying caps or has questions, feel free to PM me.  I don't mind.  I do think the caps will work for me.  The shed periods are the worst...they put fear in you but then they stop and you can breath a bit.  I also know that I would have lost hair without the caps because the hair down south is 90% gone.  I have not had to shave my under arms or legs for about 2 weeks now.  The hair I usually pluck by brows has not grown back...have not plucked in weeks!  Hair on arms is less, but there are still some there.

  • sebm9
    sebm9 Member Posts: 488
    edited April 2011

    mdg: you are doing great! Thanks for the update, and congratulations on being halfway done! After the next round you can say "Just one more!" Way to go.

    Susan 

  • howard
    howard Member Posts: 102
    edited April 2011

    Hi All,

    Question: when you wash your hair, do you do one or two shampoo applications? I've always done two, and since it's so dirty after waiting a week to wash I've continued to apply shampoo twice. Think that's too much? I do dilute the shampoo.



    Only one more TC to go...on April 15 and guess what? When I was getting chemo #3 last Friday I met a fellow Penguinista! My doctor was so impressed that my hair is still there that she shared PCC with her! That made me really happy. I'm thankful every day that the Good Morning America episode aired last October in time for me to learn before dreaming I'd need them. Thanks to those of you who pursued the GMA show!!!



    Still not finding a lot of compassion with the nursing oncology staff. They have a new rule: one person can go with you. They were adamant about that until I went upstairs to speak to my doctor who made a phone call which later allowed my mom to join my husband. The friend who came to help with the caps had to go home. I'm trying to do frozen peas on fingers & toes, ice in mouth, and PCC in coolers in dry ice. Plenty of room to have at least 3 people, but they have a new "rule" of only one. Required my doctor's phone call to let them later allow my mom to join us. Whew!



  • Ang7
    Ang7 Member Posts: 568
    edited April 2011

    Hi all~

    Question from my friend (the one who cannot stand the cold)

    Do you take a pain reliever before you wear the Cold Caps?

    I cannot remember and I did not write it down...

  • arlenea
    arlenea Member Posts: 1,150
    edited April 2011

    KeepPositive:  I ordered my ear pops yesterday.  Thanks!

    I'm having trouble drinking water (or anything for that matter)........it just taste disgusting as does most everything right now.  Since my first TX was Monday, I'm sure hoping this goes away.  I'm sure forcing that liquid down to flush the liver.

  • Lucky60
    Lucky60 Member Posts: 59
    edited April 2011

    Hi Ang7: I took a couple ibuprofen AND 1/2 an Ativan (anti-anxiety) when I arrived at the infusion center. The cold never bothered me after the first few minutes with this pill popping, and my doc was fine with this (have her check first). Most of the people I know with breast cancer (including me) got their first Ativan prescription during this time!

    Howard, that is too bad about the nursing staff. It's stressful enough on your helpers w/o having to go it alone...One of my nurses saved us a corner chair where we could spread out a little.  Later, the others came around a little more although they were never as open minded about it as my (female) oncologist. Anyway, congrats on your success and almost being done! (I only shampooed with one round of shampoo each time--but my hair is kinda dry anyway. I'd say do whatever seems right if you aren't losing too much hair during the process).

    mdg also congrats--you're becoming a pro now!

    Lucky60

  • Lmflynn
    Lmflynn Member Posts: 273
    edited April 2011

    Ang7, took a vicodin with each Tx and Ativan iv with my pre-meds. I do not normally take anything (even tylenol) for pain...was happy I did. Infusion I was loopy but still coherent .....



    Howard, just so upset that a chemo center would stop anything that makes the process for the patient nicer, easier, less stressful.... Keep pushing, you are paying them to be there.....but you MD must be very enlightened and open! So exciting to spread the word....



    ArleneA, put lemon in your water...it helped me. Also Smartmouth...find at pharmacy..a mouthwash...was excellent in helping with the bad taste...drink, drink, drink....flush out those toxins....



    Good night to all~

  • mdg
    mdg Member Posts: 1,468
    edited April 2011

    Ang7:  I take an Ativan before I go to the infusion center.  They also give me some benedryl in my drip so I am very looped up during most of it.  Tell your friend that I HATE the cold. I always have cold feet and hands (my husband says I have iceblocks for feet).  I usually sleep in a tank top, and full pajamas in the winter and can't stand being cold.  I was so worried about being able to tolerate the cold caps before I started and kept saying to my hubby "what if I can't do it?".  But you know what, it's not that bad.  The first 1 1/2 hours are the worst for me because I also ice fingers and toes and put ice in my mouth because of the taxotere.  I count the minutes during that time but once that is done it's no big deal at all.  Tell her she can do it....really!  I promise! 

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited April 2011

    I am 10 days out today from my first TX & Cold Cap Treatment, I have not lost any hair and I washed my hair 2 days post treatment and air dried as instructed. I have been using SLS free shampoo & conditioner for the past 2 years. But today after a run in with a 2 year old, I had to emergency wash and since I had to leave for work, I ended up blow drying for about 20 min. I did not want to go out in the cold with wet head and get sick. I was fairly gentle using a combo of heat & cold and wide tooth comb. Do you think I will be ok in terms of hair loss? I know I am 5-7 days away from the D day time frame of what I will lose and not lose but did anyone else blow dry their hair and not lose it?

  • keeppositive
    keeppositive Member Posts: 181
    edited April 2011

    Hi all:

    I had my 5th of 6 TCH on Wed. and the neulasta shot yesterday(Thurs.) Had to do the dry ice thing, because the freezer is still not working right. It all worked out okay. I only needed one cooler and had 4 caps in it at a time, they were already cooled to the -20's, so they only needed 1/2 hour to get fully cooled down. Well only one more chemo session to go. Then of course Herceptin for the rest of the year and 7 weeks of rads 5x a week.

    I also iced fingers and toes for the taxotere hour and I ate popsicle fudgicles for that hour, plus drank cold water. I had tried fruit ice pops, but the fudgicles were definitely better--yummy!! It is definitely cold, especially my toes. The caps never bother me past the first few minutes and I don't take any extra drugs, I figure I have enough with chemo and Herceptin and all the other meds(decadron/emend/benydryl/etc.).

    As far as hair dryer use, I have only used it on cold setting, you can't have heat on your hair or roots at all. My hair looks worse and worse each week as it grows more and becomes more unruly, less and less styled and forget the color-horrors!!!  But as I have said before, at least I have hair, and its mine!!!

    As far as the horrible taste, which seems to ease up the 3rd week, (and then you get zapped again). I found putting salt in the water made it palatable to drink, otherwise I couldn't swallow it and lemon and other flavors just made it worse. In fact raw citrus was a big problem too. Cooked food wasn't too bad and added salt and sometimes pepper helped with food too. (I usually never use salt or sugar, but for the bad taste, salt in water and on food worked wonders and a little bit of sugar in coffee and sprinkled on fruits and fruit salad made it taste better. I also put walnuts and shredded coconut in fruit salad and it was good.  Mouth washes help-Smart Mouth/Oasis/Biotene, also keep sucking on  candies-mints/ or any hard candy that you find helps.

    I am sorry some of you are having trouble with the staff not getting it. I find the idea that I have my hair an empowering experience.--Something that I am in control of and am making happen. The staff should be applauding you, not giving you flak!

    Try to Keep Positive and keep laughing!!

    Nancy

  • arlenea
    arlenea Member Posts: 1,150
    edited April 2011

    NMoss:  No experience with the hair yet but I think you will be fine.  Sounds like you were very careful too.  I just think we can't over-stress over it all, it will be what it will be and we'll get through it.  Guessing from what everyone says is that day 21 is the one that will tell.

    My darn port started acting up again and I can't figure this out.  I was doing pretty good and took a nap and now I can barely lift that arm again.  They say it is placed right but this is miserable.  The whole top of the shoulder is painful.  Hope it doesn't have to come out because if it does, it isn't going back in.

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited April 2011

    Hey Arlene



    Thanks. Sorry about the port mess. I'm 2 weeks out and mine still is hurting a bit too.I hope it stops for you soon.

  • shadow2356
    shadow2356 Member Posts: 93
    edited April 2011

    Hello! I don't come on here a lot anymore, but I just wanted to post to say that yesterday made a year since I finished chemo. The caps were great! I have really long hair and the vast majority of it stayed in. I lost a bit near the ears and the nape of my neck, but no one would ever notice.

    Good luck to all of you using the caps. It will be over before you know it and you will be so glad you used them.Lots of Hair!!hair!

     I hope this picture comes through. If it does, it was taken a few weeks ago.

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