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Cold Caps Users Past and Present, to Save Hair

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Comments

  • kae_md99
    kae_md99 Member Posts: 394
    edited February 2017

    elastogelgirl,i hope you feel better soon!! my prayers to you! my caps will arrive wed, waiting for a call from my Mo's office as when to start chemo. still undecided about capping

  • jackieashton
    jackieashton Member Posts: 1
    edited February 2017

    Hi, inspiring ladies!

    My best friend (since we were in diapers) is facing metastatic breast cancer at age 40. She is using Penguin Cold Caps and I have been one of her primary "cappers." :) The caps have worked brilliantly for her and we've all benefited so much from our Wednesday capper days together. I live in SF and I've found a nonprofit out here that funds cold caps for women in financial need called Hair to Stay. It's also a great way for past scalp cooling patients to raise money or "save it forward" for the next patient.

    We set up a page for my best friend, Emily, and we raised over $12k!! Yay for cold caps for more women! If you want more info about it, shoot me an email: jackieashton AT gmail DOT com It's also just a great resource and community for women who use scalp cooling.

  • Catgirl2
    Catgirl2 Member Posts: 83
    edited February 2017

    Hi Elastogelgirl: Just wondering about you. How are you doing? I hope you've gotten some relief from all of those nasty SE.

  • lizjo
    lizjo Member Posts: 20
    edited February 2017

    Elasto, I hope you're feeling even just a tiny bit better. Dexamethasone has been my BFF/Mortal enemy so far, as it seems getting the dosage right is extremely important. I had issues this last time with flushing/rash on my neck and chest, and we think it was the Dex, not the Taxol or Cisplatin from the infusions. It's also making my vision so blurry I can't drive some days. Be sure to connect with your oncologist to let them know every single symptom you're experiencing. Dex especially interacts with all sorts of drugs, so it could be a combo.


  • kshorten
    kshorten Member Posts: 58
    edited February 2017

    Has anyone heard of washing your hair with baking soda and rinsing will apple cider vinegar to promote hair growth? My mom just sent me this link: http://www.goodmorningcenter.com/baking-soda-shamp...

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited February 2017

    Looks like a clickbait site to me. But if it works, maybe i'll try their suggestion for a mask that makes you look ten years younger in one week :) Seriously, they have that.

    Minoxidil helps with hair growth. Not much else has evidence behind it, i checked.

  • Pamela23
    Pamela23 Member Posts: 394
    edited February 2017

    KD2016--you would never know you lost 70% of your hair! Thank you for sharing these. You've had quite a year. Looks like a lot of new growth around the hairline but your back looks nice and think.

  • Pamela23
    Pamela23 Member Posts: 394
    edited February 2017

    Thanks Tunegirl, I'm 4 weeks out and still getting a couple handfuls with my washings. I was on TC. Seems I got more the past 3 washings than I did after rounds 2 & 3 which were more of a constant shed. So AllisonJax, I'm having the same issues!

    Elastogirl--I had that after round 3, now my toes and heels are peeling in a major way! Not sure how to prevent that but I stayed in tennis shoes for a couple weeks after my next one to absorb any shock. And holy crap on the rash!!

    Catgirl--I use a defrizzing serum made on my ends to keep from looking dry. It's lightweight.

  • anoncub
    anoncub Member Posts: 18
    edited February 2017

    Hi everyone! Just popping in intermittently ...

    elastogelgirl- so sorry about the rash and side effects. Hoping that you've been able to get some antidotes to counter! one of the things I've noticed, though only 2 rounds into TCHP is that the side effects aren't quite as predictable as I would've thought. I've experienced some of every side effect other than the neuropathy, thank goodness (I've been icing my digits during Taxotere and taking L-glutamine). I had a rash somewhat similar to yours, but on my neck, chest and almost creeping up to my face, but that was due to the Perjeta. Thankfully, my derm prescribed a heavy topical steroid which brought the rash down before it blistered out of control. I hope you have relief soon!

    kshorten- I tried washing my hair pre-cancer with baking soda and a diluted apple cider vinegar rinse. Your mileage may vary, but for me, that combo was entirely too drying for me and my fine color-treated hair, even before chemo. I thought the diluted ACV rinse was a good clarifying Sunday treatment given that I had a greasy scalp. But since diagnosis, I don't dare risk using anything but the Acure shampoo/conditioner that was recommended here on these boards.

    Tunegrrl- you are amazing. I see your advice on other threads that I lurk and I just want to give you an internet hug.


    In fact, hugs to all. I've been capping with a Penguin assistant through 2 rounds, but am still pretty bald underneath my combover. Lost the hair around my sideburns, too. I finally cut my long hair to shoulder-length last week. Hate the look, especially with all the thinning, but at least the piles of shed aren't as depressing with the shorter length... I think it's odd that my shedding is significantly greater on the left side of my scalp, especially since my eyebrows and lashes are getting more sparse on the left side as well. Doesn't bother me so much since my tumor is in the left breast, too. Who knows whether it's all coincidence... you go, chemo- go kill that f*cking cancer.

  • lizjo
    lizjo Member Posts: 20
    edited February 2017

    kae_md99

    It looks like there may be 1-2 caps left here:

    http://careforde.com/southwest-hypothermia-product...

    Good luck!


  • lizjo
    lizjo Member Posts: 20
    edited February 2017
    kae_md_99


    It looks like there may be 1-2 caps left here:


    http://careforde.com/southwest-hypothermia-product...



    Good luck!



  • kae_md99
    kae_md99 Member Posts: 394
    edited February 2017

    lizjo,thanks! a nice guy whose wife cold capped will send me 3 caps for free ( met him thru amazon) and it will arrive tomorrow. although i am still undecided if i will do it....

  • Pamela23
    Pamela23 Member Posts: 394
    edited February 2017

    Anoncub--I feel my left side is worse too--eyelashes, lymphadema, hair loss worse on that side. Maybe it's just from the trauma of it all.

  • Runner70
    Runner70 Member Posts: 177
    edited February 2017

    elastogels- you need to call your oncologist first thing tomorrow if you haven't already. That "rash" could be a sign your platelets are low. Not trying to scare you. Just call and let him/her know about it and where it is. And ask for some pain meds for the neulasta pain. You're a cancer patient, not a drug seeker. There is absolutely no reason for your body to expend energy dealing with pain when you need to be able to sleep and heal.

    Happy Valentine's Day everyone

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited February 2017

    anoncub, I too notice more thinning on the side I had my mastectomy. Wierd. And more lash thinning too.

    Happy V day everyone.

  • Catgirl2
    Catgirl2 Member Posts: 83
    edited February 2017

    I'm getting concerned about Elastogelgirl! I hope all is ok. Please let us hear from you when you can!

    Well, I've been shedding pretty heavy for a whole week now! I hate it and today is a wash day. I'm dreading the extra shed I'll probably get today. I sure hope I keep some of this hair!

    When did you all start to lose eyelashes and eyebrows? Mine seem to be thinning some after my 2nd T/C round, but holding on so far. I notice a couple of lashes missing on my cancer side. It is interesting that my left is first and it's also my cancer side.

    I hope you ladies are having a great week!


  • kshorten
    kshorten Member Posts: 58
    edited February 2017

    Yes Elastogelgirl please let us hear from you.

    Catgirl2 - I'll be 8 weeks PFC tomorrow, most of my brows on the left side are gone and right side is very thin. Only have about 2 or 3 bottom lashes on both sides and top lashes are very thin on both sides. The thinning didn't really start noticeably until after my last treatment. The bottom lashes just disappeared within the last week.

    Oh the upside my bald spot has hair sprouting up!

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited February 2017

    hi catgirl. , I'm having my 6th T/C next week and still have lashes. They have thinned extremely but they still there. No need for fake lashes yet. Unless I'm going somewhere nice maybe. But have hope. I'm sure you will keep some.

    I wanted to share with you girls that my aunt mentioned an oil that us suppose to promote hair growth. It's called Mamey Oil. Guess you apply it onto the scalp. They don't sell it everywhere. My dad was kind enough to pick up a bottle for me. Hope it works

  • Catgirl2
    Catgirl2 Member Posts: 83
    edited February 2017

    Hi Ladies,

    I think I need to worry about my hair instead of my lashes! I still lost quite a bit when I washed today. If I didn't have such thick hair, you would be able to see my scalp by now. I'm not sure my hair can take two more rounds of T/C.

    So, Hopfull - You have 6 rounds? Ugh! Hopefully, that's your last. I bought some clear glasses that I can throw on if I lose the brows and lashes. Maybe it won't be as noticeable then. I'll have to check out that oil. Lord knows, I can use some help in hair regrowth!

    I'm starting to get really worried about Elastogelgirl. It's not like her to go missing from this thread. I hope she's ok.

  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited February 2017

    hi all,

    I'm so sorry I've been offline! Thanks you all so much for your concern. I did go to my oncologist and got prednisone for my rash. I feel as if I've had a horrible flu like dengue fever or something. I also have very blurry vision and sore fingers and feet. I'm getting better my rash is a bit settled down. I'm finally sleeping for the first time in about two months. I've basically been asleep since my last post. Except that I have to wake up and change my shirt for all the night sweats I'm getting now. Wow the taxol for me made the Ac seem easy. Not skiing anytime soon now! Plus full on chemo pause! I'm 53 but had not even started peri-menopause.

    So I may have convinced my oncologist that I could be having a problem with dexamethasone, he can't believe it. He did say it could be the binders or preservatives? Or something in the Dex causing me trouble.

    He will see me again before my next round to discuss options. We don't think I'm allergic to taxol I'm just not tolerating as well as others, it's different for everyone I guess

    Hugs to all of you and I'm so sorry to have been out. I actually stopped getting my updates from this site. I'll reset!

    Sincerely e



  • lovesgreenthings
    lovesgreenthings Member Posts: 99
    edited February 2017

    Hello Cold Cappers!

    It is wonderful to see such a supportive group here and what a great source of information! I had PM'd a few of you as I decided which cold cap to use and ultimately am going with PCC as I will be having quite a few infusions AC DD + Taxol x 12 and the fit of the caps I think are going to be a better fit for my head. :) Plus, they are running a special this month (competition helped this I am guessing) so the cost was less. But you just get 4 caps now, so it will be interesting coordinating this if I am out of it from the pre-meds as you all described. I appreciate all of the tips presented in this group and welcome any others as you are all ahead of me on this. I start AC on 2/28. My MO is sure I will lose all of my hair on Taxol. She said it twice but is ok with doing this. The oncology nurses I met are all for trying this but not very familiar with it. Hard to believe this as a Clinical Study was done at the sister hospital just a few years ago. Communication between the hospitals, Doctors, etc. is not all that great it appears. But I am determined to save my follicles if possible.

    Happy to see Elastogelgirl back on line! Glad you are finally sleeping. This dx robs all of us of our sweet sleeping doesn't it? You are getting hit with menopause all at once besides everything else. That is very difficult to do. I am a few years older so went through it naturally. I do remember having a fan on a lot and wearing a lot of tank tops. In winter. In Michigan. I would put a cardigan on top of that, but off it went when I got hot. That actually encouraged me to work on my arms more at the gym. I now have pretty good looking upper arms! A perk of menopause, it motivated me.

    Catgirl2, I hope the shedding slows down, it sounds like it always does. I bought Latisse for the Taxol portion and hope it helps lashes. I also bought Essential Eyebrow Solution for eyebrows and am using it now. It is a new product developed by an RN local to my area (SE MI) after a family member lost her eyebrows to chemo. This is all a science experiment, but she thinks I may lose less (50%) and that they will grow back much faster. It is worth it to try. Like all of you, trying to get through this without looking like a horribly sick, old lady.

    I read from someone that PCC paid cappers change the part frequently through out each session and place a piece of gauze along the part line. This helps reduce the bald spot line where the part is. Or did I dream it? Anyone try that?

    AC chemo ladies - did you ice you feet and toes as well? I have ice chips, fruit bars, water bottle to keep my mouth cold and moist during the infusion. Any other tips? It will be a busy day. Luckily, my infusion center is 5 minutes from my home.


    Thanks in advance for tips, suggestions and encouragement.


    Anne

  • kae_md99
    kae_md99 Member Posts: 394
    edited February 2017

    elastogelgirl,i am glad you are okay and getting better. i hope you do get to the bottom of the rash and other SE's

  • Catgirl2
    Catgirl2 Member Posts: 83
    edited February 2017

    Elastogelgirl! So glad you're ok! The mom in me was really worried about you! I'm so sorry that you're having so many issues. Hopefully, you'll get to the bottom of it all and get this all behind you.

  • kshorten
    kshorten Member Posts: 58
    edited February 2017

    Ok ladies, this Chemo Cradle Cap is driving me nuts, has anyone tried the Nioxin #4 Shampoo? I'll be 8 weeks PFC tomorrow and have been using the ACRUE Clarifying Shampoo but it's not helping my scalp.

  • anoncub
    anoncub Member Posts: 18
    edited February 2017

    Pamela23, Hopfull2, Catgirl2, Amapola36- ah, I guess that makes sense if our bodies work in quadrants that we're losing hair, lashes, brows on our cancer sides. The asymmetry doesn't bother me so much, but I thought it might be more than coincidence! I'm using Latisse on my lashes and brows, but it doesn't really seem to stop the lash and brow shedding, although the lashes that I do have are noticeably longer than they were.


    Catgirl2- I started Latisse right before my first TCHP treatment but noticed my lash and brow shedding with the 1st round. I just got me 3 out of 6 infusions and I have noticeable gaps of my left lashline and the ones at the corner of my right eye are gone. The brows are doing alright- I can cover up pretty well with makeup, but I haven't been using mascara since I don't want to tug at those precious lashes when doing makeup removal... The scary thing is that ladies are reporting on other boards that they lost all their lashes and brows more than once PFC. That they grow back, of course, but that it was a surprise for so many to get through chemo and BAM- lashes and brows gone. Sigh. It's probably the body getting adjusted to being poisoned, and then the body getting used to NOT being poisoned. Go figure.


    Elastogelgirl- so glad to see you checkin! Sorry that Taxol/dexamethasone have been so harsh on your system. Taxotere, dexa, and Perjeta have been my least fave of all the stuff that's getting pumped into me. Wishing you good, monitored relief with your docs and much rest.


    xoxo- wishing everyone much strength, follicular and otherwise. :)

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited February 2017

    Anoncub, thanks for the sweet message! We have a great little community here. It helps me so much to feel not alone.

    I appreciate all of you very much :)

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited February 2017

    I rang the damn bell at rads today! Then did a victory lap of the waiting room, giving high fives and big smiles to amused elderly people waiting their turn.


    I see my name appears on youtube here, so after about a week i'm going to take this post down. But just wanted to share the happy occasion with you all, hair sistas!

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited February 2017

    tunegirl, a big hug to you on finishing treatments. I'm ringing my bell this week. Can't wait. But congrats to u. Smile

  • kshorten
    kshorten Member Posts: 58
    edited February 2017

    tunegirl - Awesome job on ringing that damn bell! You Rock!

  • Giginb
    Giginb Member Posts: 6
    edited February 2017

    Elastogelgirl- I don't normally post but "lurk" here all the time. The pic of your rash made me want to share my experience.

    I am almost 4 weeks PFC. I had 1 terrible rash around week 8 of chemo and another terrible rash 1 week PFC. The second rash was on my face, hands and arms. It really scared me. My MO sent me to the dermatologist. I was given Clobetesol Propionate ointment which worked well but almost 4 weeks PFC it is still clearing up. My chemo was Taxol and Carboplatin.

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