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Cold Caps Users Past and Present, to Save Hair

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Comments

  • DaniellaD
    DaniellaD Member Posts: 228
    edited August 2014

    Thanks PatinMN. At least someone else was told the same. I was thinking it was Sloan just being rigid as usual.  They keep telling me that they are going to be a little backed up that day because of the holiday weekend.  So that means it will start late, and then as soon as the chemo is finished they are going to kick us out to the lobby for four hours. I'm about an hour from the hospital so leaving isn't really convenient. I'll try to talk to them about next time.  Have a nice weekend. 

  • makingway
    makingway Member Posts: 465
    edited August 2014

    Daniella-That is the usual protocol. The protocol can be changed but only with the doctors authorization. The staff aren't always helpful, they're just following orders. Call and ask to speak with your doctor.

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited August 2014

    Hi, wyomama..  Thank you very much for the encouragement!

    I am sure your hair will be really really awesome again very soon :-)

    Heck, it looks really awesome to me and others now. LOL

    I hope mine looks that great at the end of my treatments.

    So, try to be easy on yourself.  I know that is so much easier said then done, though :-(

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited August 2014

    lyndawerner - thanks for the kind words!  It seemed like I was one of those people who if something could go wrong, it did.  Fortunately, this is not the case for most who are diagnosed with bc!!!  And yeah, I don't mention the collapsed lung much, b/c it is so rare and there is no need to make others obsess over it.  My surgeon reassured me it was rare, so when it happened, I dropped the f-bomb in recovery...she laughed and said "that's what I said when I saw the x-ray films!"  ha ha ha ha ha

    I am now almost 2 years PFC and 3 years post initial diagnosis.  Except for some residual off and on L shoulder pain (related to tightness of pecs from radiation fibrosis), I feel FABULOUS.  I am back to teaching dance - extremely high cardio - 4 to 5 times a week.  And I was one of the ones who had a very rough time with chemo.  Just some encouragement to remind you all that life can indeed return to wonderful after treatment!  

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited August 2014

    Daniella - I had the same concern with TCH.  My oncologist was ok with switching the order to Herceptin last.  No one could give me a medically necessary reason for why it had to be first.  Your nurses will not change the protocol unless the oncologist clears them to do so.  They have to follow MD orders. 

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited August 2014

    Hi, everyone.

    Question for you A/C chemo cold cap users,  please.

    After my Taxol chemo treatment is finished for the day, I  continue using the cold caps for 4 hours.

    I am wondering what it will be when I start the A/C treatments and what others have done.

    I am going to email Geralyn, but I wanted to ask all of you too.

    Many thanks in advance.

    P.S. adriamycin/cytoxan   60/600

  • Gatomal
    Gatomal Member Posts: 418
    edited August 2014

    hi Lynda,

    I am currently doing my AC, and have only had one tx so far, but I did 4.5 hours after infusion was complete. It ended up being a total of 15 caps (got the 14 cap set, and reused the first one) so a total of 15 x 30min =450 min -10 min-10 min (first two caps are only 20 min) = 7 hrs and 10 min.

    It really broke up the day, frankly, since we only had little 15-20 min breaks between getting ready for changing, talking about how long it was on,writing some texts, having water, going to pee. It actually went by okay. Manageable. The drugs probably helped a bit! Today is day 9 after first one, and I have lost less hair loss than normal (I.e. Not doing chemo) since I am barely washing, combing or styling it. It looks greasy and stringy, but it have it. I should know more in the next 12 days how the first one went. Good luck!

  • kpmacmill
    kpmacmill Member Posts: 69
    edited August 2014

    Hi Lynda,

    Same for me - 4.5 hours after infusion was complete. I was wondering if there was any change when I switched to Taxol, and was going to ask Geralyn, but sounds like it would only be 1/2 hour difference at most any way. 

    My hair starting shedding with a vengeance on Day 23 and hasn't let up at all now that it's day 45. I actually counted a bag of hair yesterday since it seemed like a bit less than usual and would be easier to count, and came up with 950 hairs! I was shocked to say the least. So I estimate I have lost more than 20,000-25,000 hairs so far. I'm bald above both of my ears and am missing a ton on my crown and down the back of my head. I wear it in a low barrette everyday, one to help stop the hairs from sliding out all over the place all day, and two, to hold together some pieces from the sides to cover the bald areas. People still tell me that it's hard to tell how much I've lost, but I'm still not optimistic I going to make it through November and through the end of Taxol. I have no regrets though! I'm going to keep on keeping on with the caps unless it would be ridiculous to continue.

    image

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited August 2014

    Thanks so much for responding back.

    I really appreciate it :-)

    kpmacmill-I work with someone who went through the A/C and the Taxol treatments.  She *didn't* use the cold caps, so she lost all of her hair the 14th day after her first A/C treatment.  But, she said her hair started growing back while on the Taxol.  So, hopefully, that gives you something positive to think about.

    Hope you both have a great weekend!

  • wyomama
    wyomama Member Posts: 79
    edited August 2014

    I was told no on having herceptin last as well. I asked why, and was told there was no medical reason, it's just how it's done. So my dr said ok and changed it. But he had to, not the np or infusion nurses. 

    Off topic - I had my echocardiogram yesterday, no changes at all to my heart after 6 treatments, so yay for something good! :)

  • Gatomal
    Gatomal Member Posts: 418
    edited August 2014

    KPMacmill! So happy you posted a shot of your hair. If I have your results I will be so happy. I know it's nowhere near "normal" but gawd! You still have so much hair. Just think when the peach fuzz starts growing in and covering your scalp. I'm really shocked that the results are so good. Have you had your third infusion already? Fourth? I have read a lot on the boards about regrowth beginning through Taxol. Just hang in there. You can always cut it off if you think that is better. I have my shears ready, but I'd rather have bald patches and camouflage than the alternative. How are your brows and lashes doing? 

    Hugs to you. Happy Labor Day weekend!

  • Dlove72
    Dlove72 Member Posts: 47
    edited August 2014

    lyndawerner- I did A/c first followed by taxotere/carbo I used caps for 5 hours after each infusion.

  • kpmacmill
    kpmacmill Member Posts: 69
    edited August 2014

    Hi Gatomal,

    I was done with all 4 AC tx as of Wednesday, Aug. 28th. I am definitely hoping I'm one of the lucky ones who gets regrowth during Taxol. My lashes and brows are holding on, but I have been using Latisse on them both. My lower lashes do seem to be falling out somewhat, but you don't put the Latisse on the lower lash lines, so I'm not surprised. They may still all fall out eventually, but I'm more concerned with my hair.

    (((Hugs))) and best wishes to you too.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited August 2014

    kpmac - my bet is you will see regrowth on Taxol and that you are through the worst of the hairloss from AC.  Fingers crossed!  We know A is so tough on hair compared to the other regimens - hang in there!  You have a great positive attitude, which makes all the difference. 

    Wyomama - yay on the echo coming back good!  I was always concerned about my heart when I was on Herceptin. 

  • new2bc
    new2bc Member Posts: 254
    edited August 2014

    Hi everyone,

    I have a stupid question to ask you. Are cold caps only for breast cancer patients or does it work for any type of cancer? Does it really work with every type of chemo? How do we get it? Thank you for your help.

  • Gatomal
    Gatomal Member Posts: 418
    edited August 2014

    They work for certain cancers and the chemotherapy treatments given for those specific cancers. I seem to recall them not being recommended for blood cancers, but not sure. Search on peguincoldcaps.com and read the site; there are other companies that provide similar products. Elastogel, and another one, mentioned about five pages back. If you do some searching online, you can find lots, and here in this thread. 

    Some MOs are supportive, some not so much. Good luck!

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited August 2014

    Hi, thanks for the info.

    Ugh,  I gotta admit, I dread keeping them on the long :-(   The Benedryl makes me so sleepy it is a challenge

    to stay awake  But,  I can see it is worth it, by looking at your hair and kpmacmill's hair, so I will grin and bear

    it.

    Question..My dosage of the A/C is 60/600.   Is that what your dosage was?  I am not sure if this is the standard

    dosage, or it varies.

    Thank you for taking the time to reply :-)

    Hope your enjoying your holiday weekend.

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited August 2014

    Hi, kpmacmill :-)

    GREAT news on being finished with the A/C!!!!!!!!!!!!!!  

    Boy, I wish I could say that.

    I bet the Taxol is going to be a cake walk for you!   

    I have been really, really tired on the Taxol, but nothing else.  Thank God!

    And your hair is going to start growing in like crazy..

    Bye.

  • jc254
    jc254 Member Posts: 332
    edited August 2014

    new2bc, cold caps are used for other types of cancer and chemo regimens.  I know only because my oncologist has given my number to a few women who were interested in using the caps and being treated for other types of cancer.  Cold caps do not work as well for some types of chemo drugs even for breast cancer patients.  Your best bet is to call Penguin Cold Caps and ask them directly.  I will see if I still have the phone number for the company's US distributor and pm you. 

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited August 2014

    Hello, barremom64.

    How are you feeling after your first chemo treatment?   I hope better then expected :-)

    When your up to it, I'd love to hear how you made out with the Paxman System?

    How long do you need to have the cap on before, during and after your treatment?

    Having that little refrigeration unit must make things SO much easier!

    And you can probably sleep the entire time, if you want to.   That would be amazing..

    Thank you in advance.

  • barremom64
    barremom64 Member Posts: 122
    edited August 2014

    Hi Lyndawerner- Thanks for asking about me:) Day4 today a bit harder as steriods are out of body(?) taste buds started to go...not as easy as past few days.

    Onto the Paxman system...I think I made out well-I guess it all depends on the result right? It was convenient for sure no ice, no changing caps etc. At some points I wasn't sure if the machine was on because it didn't feel cold on my head, I was assured it was, I was just getting used to the cold after a few hours. I tolerated the cold very well and when they took off cap I actually had ICE on my hair!  

    Pre-cooling time was one hour, which was time of pre-meds. After cooling time was 1 1/2 hours.  Really couldn't sleep much as I was nervous and I was icing toes and fingers also. Maybe next time I'll be more "relaxed"-is that possible? 

    Just like with any of the other routes, Peguin,Elasta etc. I just hope it works! 

    Best to all !

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited August 2014

    Hi, again barremom64.

    I was just looking on the Paxman website and found a document:

    (Wow, I REALLY need to get a life! LOL )

    Published experiences with Paxman Scalp

    Cooling System (Paxman) from 1997 – 2013

    Efficacy and Patient Acceptability Data

    Not sure if I am allowed to copy the url here, but you have probably seen this document already, anyway.

    It looks like they have been testing/tweaking this system since 1997, so hopefully, they know what works and what doesn't work by now.

    Hoping and praying for an excellent outcome for you!

    P.S I know exactly what you mean about the steroid's wearing off.   I felt great for 3 days after chemo, then the 4th day I hardly had the energy

    to move.  

  • DaniellaD
    DaniellaD Member Posts: 228
    edited September 2014

    I'm going to ask my mo to change the order so that the herceptin us last. If she puts up a fuss, I'm just going to demand a medical reason. 

    I just took my last warm shampoo. I bought this detangling brush, the tangle teezer.  It may be more gentle than the wet brush.  I think I'm going to leave my combing/brushing to a minimum in general. Has anyone tried the tangle teezer? My hair is so long, fine and wavy that it's it usually a knotty mess after an entire day of not combing.

    I guess the countdown is on.  I'm sort of freaking out. My husband and I will practice tomorrow.  The my cousins, aunts and sisters are coming over to practice some,too.  I guess this is really happening,.  I'm so scared.  I just want this all to go well so I can be here for my family for a long time.  I hate having to be careful when playing with the baby for fear she will pull out more hair. She's too little to have a sick mommy. 

    Hope everyone is enjoying the weekend!

  • pawtampa
    pawtampa Member Posts: 2
    edited September 2014

    Hi Daniella, I believe they give the drugs in a certain order to monitor side effects. For my treatments they wanted to monitor me for an hour or so after my perjeta, so this could be what they are doing for you. This didn't seem to be an issue after my first treatments since I handled everything okay, so they did allow me to switch the order later on when I requested it. Good luck to you with everything, I wish you all the very best. 

  • DaniellaD
    DaniellaD Member Posts: 228
    edited September 2014

    Thank you everyone for responding and kind words.  My family came over tonight to practice capping.  My husband will likely be doing most of the capping but since it's 12 treatments, the others will fill in when needed.  Anyway, no matter what we do, we cannot keep the Velcro from grabbing my hair - especially in the back crown portion.  We've tried a few hair different style hairnets to no avail.  Can we use a paper hairnet - like a surgical hairnet or even a thin plastic cap? Also, the Velcro on some of the caps does not stick well.  Anyway to fix that? I think they're just worn out maybe.  Really nervous.  Really really nervous.  Thanks and well wishes to all!

  • PatinMN
    PatinMN Member Posts: 784
    edited September 2014

    Daniella, I know some cappers fastened the Velcro loosely before putting the cap on the head, like a helmet, which helped to keep hair out of the Velcro.  I think some have used hairnets of some sort - hopefully they will jump in.  I didn't have a problem but I had two helpers and I know the one in the back was always brushing my hair out of the way while the one in front held the cap still.  As for the Velcro not holding - one of my cappers used a pick or comb of some sort to get lint out of the Velcro, which helped.  But if it's too bad you should notify Penguin and make them send you replacements.  Won't help for your first treatment, but you could get replacements for next week.  Have confidence - you will do fine!  We're all rooting for you and all the others currently in treatment!

  • ciaogina
    ciaogina Member Posts: 33
    edited September 2014

    DaniellaD---Good Luck--you can do this!! And you will!! 

    I can't believe my 6th and last TCHP tx is in 10 days! I never thought this day would come. Anyway, I washed my hair today and lost a lot--I still have a lot though and if you didn't know me you'd just think I have really bad, graying hair. Although I know it's awful. My friends and  family are so encouraging and tell me how wonderful  I look for enduring chemo and the caps. I hope they're being sincere LOL I just don't feel pretty with this brillo on top of my head. Maybe it's the humidity and hopefully once the weather cools, it will look less frizzy.

    But I simply cannot wait to dye my hair. We are having a 50th wedding anniversary party for my parents two weeks after my last tx and I know I cannot dye it for that. I just hope I can look somewhat presentable. But my question is: How long do I need to wait? Is it 3 months or 6 months PFC to dye my hair? I thought after 3 months I could use a more natural dye without peroxide. Is this correct or is it better to wait a full 6 months? I really don't think I could wait 6 months!!! I already look like Cruella DeVille!!

    Any advice will be helpful. 

    mdg---i know you have dark hair and told me about color mark. I am using that, but it's just not covering as well as I thought it would. any other suggestions? 

    A friend told me about a spray by Bumble and Bumble. It's supposed to cover the gray along the roots.Not sure if it's paraben and chemical free though.

    Thanks! 

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


    ciaogina...you are already almost done!  Yay!  Seems like you were just starting not so long ago. Glad the caps are working well.

    The colormark was not awesome, but it helped.  I found I would part my hair and pull it back in a loose, low ponytail.  Then I would color the part line and any grays showing.....it got harder towards the end of chemo to cover all this stuff up!  Then once I covered as much as I could, I put a headband on to hold my hair in place since only the top hairs were the one's covered by colormark. 

    Anyone else have any suggestions???

  • DaniellaD
    DaniellaD Member Posts: 228
    edited September 2014

    ciao gina - Rita Hazan spray covers a huge amount. Just spray right on the hairline and part.  Doesn't rub off or leave a mark. You can sweat and this stuff doesn't move until you shampoo. Don't buy the cheap gray sprays bc they don't work.  Bumble and bumble is not as good for covering, makes your hair feel gross and leaves a huge mess.  Also, toppiks hair fiber system.  My girlfriend owns a beauty store and she sells tons of this stuff to anyone with thinning hair. It also happens to cover gray very well.  

  • Misstic
    Misstic Member Posts: 50
    edited September 2014

    Hello everyone, I'm writing from France.

    First I want to tell you, american ladies, that you are a real inspiration for me.

    In France, the procedure for cold caps is sligthly different : caps are free loaned by the hospital and the nurses help you to change them every 30 minutes. So no need for extra personal helpers. But, and this is a big "but", the medical team tells you that you need to wear it only 10 minutes after the end of the IV. No strong headbands to hold tight the caps like with the Penguin ones. In my case, I have weekly 12 weekly rounds of taxol about 1 hour IV. My oncologist when he saw me for the first time looked at my hair which are thick and numerous and told me "you will finish the chemo with your hair if you wear the caps".

    After I read all you testimonies and advices about Cold Caps, I realize that I was a little naive when I trusted that the hospital could handle this Caps procedure for me. Hair maybe, but if only 30-40% left on my head, is it really the desired result? Ha! When the nurse put the first cap on me, I expected to be frozen in a minute. Instead i felt my head very fresh but nothing more. Can you imagine, I stood 10 minutes wearing only my tee-shirt and feeling good like this! After that, I just needed a cardigan to be ok.

    I know now the french method for caps is not the good one. I understand that I need to wear these caps at least 2 hours (the optimum time being 4 hours with my dose of Taxol but I think they will not let me get these caps for 2 extra hours). And very important, I need headbands to feel my head freezing. I made two for my next round.

    So I want to thank you, ladies, to be so talkative, so inspiring that I could understand the mistakes done and try to correct them for the next 11 rounds.

    It would be also great and encouraging, if some of you experienced little fails with the caps and despite them kept their hair.

    To be honest, after reading you, I'm freaking out and I imagine I have to buy a wig...

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