Cold Caps Users Past and Present, to Save Hair

hope49

amyQ,  brrr, that brings back memories!  Thanks for posting...it's different for everyone and good to hear your experience.  

Warrior_Woman

mfm - That is my plan.  I can just picture the hair on my upper lip growing back before my eyebrows!  LOL  

Ladies, I have suffered through worse than this to try to fight aging.  Lazers, fraxels, injectibles, ILP and gosh knows what else.  The added benefit here is that I'll knock the cancer out of my system.  

On that topic, I assume the Retna A and Obagi skin care products should be discontinued for quite a while until my skin returns to normal.  If anyone knows differently please alert me.  

dancetrancer

I would assume so, warrior woman.  I developed severe acne after the first TCH (and I never break out) - like a rash all over my chin.  Had to switch to Cetaphil gentle cleanser.  Also, my friend's onc told her no chemical peels during chemo and for several months post (I forget how many months post). 

sue219

Im new to the boards,   had my first TCH plus Perjeta December 18 and used the CC following the protocol -  am very nervous right now. I have had very little shedding -  Can someone tell what hair goes first so I know what to look for,  my next treatment is Wed Jan 8.  Everything I am reading says if you make it to Day 21 the caps are working - any help would really be appreciated

jc254

Hi sugarladi, I'm glad you found us.  In general, most women who receive chemo for breast cancer lose their hair by day 21.  So if you can hang in there to day 21 with hair while using cold caps, you can breathe a little easier knowing the caps are working to some extent.  You will start to notice more shedding than usual when combing or washing your hair. You shouldn't be losing clumps of hair.  It's usually more of an all over shed rather than from one specific area.  Sometimes though, if the caps aren't tight enough or you don't have good coverage, you'll notice missing hair in a particular area.  Around the ears and the nape of the neck are the most common areas.  There is a lot of variation in shedding patterns among cold cap users.  Some experience a big shed after round 2 or 3, some just consistently shed until the end of chemo, and some, like me, shed very little during chemo but continue to shed hair for months after chemo ends.  I am not a cold cap expert and my knowledge is simply based on my own experience and from the experiences others have shared on this board.  I'm also not familiar with perjeta and don't know how that impacts the effectiveness of cold caps.  Please keep posting and we'll help you as best we can. 

jc254

Sciencegal, beautiful picture.  Thanks for sharing. 

mdg

Sugar - hang in there!  THe first hair I noticed shedding was "down south" and it started around day 14.  The hair on my head did not start shedding until day 21 for me which was my 2nd chemo day. 

Beautiful photo Sciencegal! 

sciencegal

Thanks all and thank you coldcaps!!

I also tried to ice my nails, but only during the cytoxan and taxotere infusions, not before or after. SO much colder than the caps, especially for the toes. brrrrrrr. I could not do it every time, but thankfully was able to keep them intact. I did lose most of my brows and lashes but drew them on, haha. It was okay. They came back.

Good luck everyone!

Warrior_Woman

Sciencegal - Am I supposed to ice for the Cytoxan too?  I thought it was just for the Taxotere.

sciencegal

I was never sure either so tried to do both. but during the taxotere is definitely most important!

sciencegal

PS- AmyQ your pic SURE does bring back memories!

Good luck to  you!

dancetrancer

I thought Taxotere is the biggest culprit for nail issues.  I heard that to be the case for my regimen - taxotere, carboplatin, herceptin.  Not sure about cytoxan.  I can't imagine icing longer than 1.5 hours, but wow if you can do that you are a woman of steel!  

Warrior_Woman

I don't want to lose nails but I am much more worried about neuropathy.  

Dancetrance - I would really advise all of us to stay clear of peels.  Some are milder than others but basically it removes your skin.  The last time I had a peel it removed all my skin on my jaw line.  Instead of looking better I was a bloody mess.  Not a stunt I'd pull during chemo.  LOL

Warrior_Woman

Amy - I have to say...you look so cute in your photo.  Your face is saying, "I know I look ridiculous but I will have the last laugh when I leave here with my hair!"

dancetrancer

Yikes!!!!  I've never had a peel and am too chicken to, espescially now!

Warrior_Woman

Dancetrance - Is your skin back to feeling and responding as normal after chemo?  I'm not an expert on anything but I do spend a ridiculous amount of time with my anti aging doc.  What are you trying to accomplish with the peel?  There are lots of alternatives.  Peels use harsh chemicals.  I prefer lasers, injectibles and other skin care.  People always look at me and comment that I am looking good although they cannot quite figure out what is different.  Usually the comment is, "Did you do your hair differently?"  or "That outfit looks great on you."  They cannot figure out what has changed and no one guesses that my skin looks more radiant, smoother, no sun damage, and a bit higher than it was.  My face doc did say not to bother with anything during chemo (or rads) because it will be a waste of money.  She promises to fix me back up later.  The only exception is if my botox wears off to the extent that my forehead starts to wrinkle.  This stuff is not for everyone but if you or anyone else has questions I'm glad to share what works for me.  With all the help everyone has provided to me, I do hope to be able to offer assistance to others.  

jc254

AmyQ, your picture is priceless.  Isn't it a relief to be able to look back and laugh?

AmyQ

Thanks everyone - It is a little surreal to think that I went through all that and 5 times! Sometimes it feels like a bad dream. 

OneTexasDay

I had a peel the week before I ended up having my biopsy and BC diagnosis.  Of course, I had no idea I would be having those things at the time I had my peel... I had just had my routine mamagram earlier that week.

So, here I was reeling at the shock of my diagnosis, trying to figure out 'when' to share 'what' with 'whom' while everyone was looking at me trying to figure out why my face was peeling off.  The folks bold enough to ask about it with genuine concern, I kept telling them I was "fine, just vain"... all the while I was screaming in my head "I AM NOT FINE AT ALL." 

I will do peels again, but it was definitely bad timing. 

 

dancetrancer

WW, thank you for the offer to help.  My skin took a while but eventually went back to normal.  Although I do now have more wrinkles, I think that is just due to aging.  Well I do think some of it actually may be due to early menopause/lower estrogen due to chemo.  But it is hard to know.

I did a bunch of research on peels about a year ago and decided I was too scared to try one and didn't think the risk would be worth the benefit - especially since my problem area is wrinkles UNDER the eyes.  You can't go too close to the eyes with peels, from my understanding.  Botox won't fix it either, from what I have read.  I have loose skin that area now, and when I smile my upper cheeks push up on that skin and show the wrinkles.  If I don't smile no wrinkles, lol.  Only lower eyelid surgery, which comes with it's whole set of risks, fixes this issue according to my research.  I do use AHA twice a day and a retinol product which I feel is definitely giving my face a more youthful shine.  Recently I've started trying emu oil under my eyes and that deep moisturization is helping to soften the wrinkles (the emu oil lasts longer to moisturize that area than regular moisturizers).  

Hortense

I iced my nails while using cold caps and did not find it a discomfort. I just had cold fingers above the first joint for the duration of the Taxotere infusion, which wasn't bad. It isn't just nail damage, it's the possibility of neuropathy - nerve damage - that I wanted to ward off. I felt the tiniest bit of a tingle in the tip of one finger and a toe a day or two later, so had an inkling of what might have happened if I had not iced. Both went away and I never had them again.

Warrior_Woman

Texas - Fortunately we haven't lived our live anticipating BC was just around the corner.  It would have paralyzed me.  

Dancetrance - I hate to say it but I think you're right about the eyes.  Surgery is often the plan. I do use botox for crows feet.  I no longer have them.  I am wondering if my PS will use my eye skin for my new nipples and give me an eye lift at the same   time.  You know about the use of Preparation H as a temporary fix, right?  It's OK for special occasions but not something I want to do everyday.  The things I do for wrinkles that have really helped are a yearly fraxel that uses lasers for a skin peel that is mild.  It builds collagen, tightens skin and gives an overall glow,  botox on my forehead and crows feet, juvederm in the creases from nose to mouth and around my mouth and radiesse to lift my cheeks.  Sounds silly but it's sort of a hobby.  

Hortense - Nails grow back.  Neuropathy is scary stuff.  

Ladies - I don't know if this was mentioned here but I purchased a product that I was told is usable during chemo and prevents loss of lashes and brows.  Some thinning perhaps but not bald eyes.  The manager at the Faith and Hope shop told me they've been selling it for 4 months and so far not one person has lost her lashes or brows.  I started using it today in preparation for starting chemo next week.  It's called Brian Joseph's Lash and Brow Conditioning Gel.  It's all natural and unlike Latisse, it is designed for use before, during and after chemo.  The tube cost me $40 and it was suggested that I buy 2 to start.  I'll keep you posted as per its effectiveness.  

dancetrancer

WW, thanks for the feedback.  I've heard about prep H but never tried it...so it really works, eh?  I will have do try that like you said for special occasions...such a funny concept, lol.    

deelightful

Hello everyone,

I'm looking into getting the cold cap for my mother.  I'm wondering if any of you have had this covered through your insurance.  I'm looking at Penguin Cold Caps, but since it's not FDA approved, I'm finding that insurance won't cover it.  They need a CPT Code in order to bill.  I'm wondering how the people who have gotten this covered through insurance went about doing it?

Thank you in advance for any help you have to offer.

Warrior_Woman

dwwlightful - If you scroll back a few pages one CC user had success with insurance covering 50% but only after strong self advocacy, saving all receipts and completing treatment and payments.  She provides some good suggestions as far as how she managed the coverage.  

tmb173

Hi deelightful,

Be prepared to cover all costs out of pocket.  I was reimbursed half the cost of cap rental but many months, fights, and phone calls later.  If you search under my posts you will find the appeal letter (after being turned down) I wrote to Blue Cross Blue Shield of Horizon.  It is also posted on the Penguin Cold Caps message boards.

Coding was difficult- I had to explain that Penguin didn't seem to have one.  I was warned that this was considered experimental and might not be covered.  My hope is one day it will be so commonplace a patient could work on getting reimbursed for dry ice and other supplies- I didn't even try on those.

deelightful

Hello tmb,

I was just about to send you a private message.  I printed up your appeal letter.  Thank you so much for posting it.  Can you please tell me what articles did you print for your Doctor?  I want to be prepared when I bring this to her.

Thank you again.

Adrielle

WarriorWoman:  Re drinking warm water (or warm anything) during chemo/cold-capping, all I can say is DON'T!  I made that mistake with my first round (TCH) and was in total agony with mouth sores for nearly a week afterwards.  Since then (3 more rounds done), I've sucked on chunks of popsicles and sipped ice water, and have had zero mouth soreness.  And I'm not even keeping my mouth cold the whole time, just taking a bite of popsicle or swishing around a sip of ice water every few minutes, and trying to remember to breathe through my mouth in between, to run coldish air through there. 

makingway

I agree with Adrielle on NOT drinking warm water while getting the infusion! Not only will this promote mouth sores, it will also increase your body's core temperature. Please keep in mind that Frank, the inventor of the Penguin caps, is NOT a doctor and many of the recommendations provided by the company have no merit to support the recommendations.

Warrior_Woman

Adrielle & Makingway - Thank you!  Frank said the purpose of drinking warm water is to help the liver.  I have made a list of every suggestion I have received to review with my oncologist several days in advance of chemo.  I have purchased everything.  The total cost of supplies, coolers, electric blanket, vitamins, ointments, treatments, shampoos, combs, toothbrushes, etc...  (drum roll please....) over $800 and this doesn't include the cold caps or dry ice.  Here's how I look at it....  If ever there were a time when taking care of myself is important it is now!  I may have made purchases my onc will advise against and that's fine.  They'll sit on the shelf.  I refuse to suffer any more than I need to.  Anything that I can prevent I will.  Anything I can treat or cure, I will.  And anything that creeps in despite my efforts will get a giant middle finger from me.  I don't know what I would have done if not for the wonderful women here. 

Deelightful- I don't want my above statement to concern you.  Most of the purchases were not related to the cold caps.  

And BTW, Ladies...I jumped through hoops arranging to purchase dry ice.  I lost count of the number of people I spoke with who knew someone who successfully used cold caps.