Cold Caps...

[SusanN]

Hello...

As odd as this sounds to "preventing hair loss"...I'm wondering if anyone has heard of "Cold Caps"...or has tried them...I stumbled upon a post, then did abit of researh and found the "The Rapunzel Project"... and thought I'd see if anyone has tried this or has any info...I'm assuming IF this "cold cap" was really great...there would be much more in the media, etc...for us to know...Thanks!!

[JennyB]

Susan,

I have a friend who did this and she did keep her hair but it thinned a lot. she had to take Valium, I think, prior to treatment and was dressed for an arctic adventure! It was painful and stressful but she doesn't regret it. Over here in Australia it not widely available and again, I think, only if you go private - most oncology centres are at the public hospitals - different helathcare systems!

HOpe this gives a little insight!

Jenny

[Ellie F]

Hi
I used a now old version of cold cap whilst having taxotere. I still lost about 50 % of my hair and still wore a wig. However my hair returned to normal afterwards unlike my eyelashes and eyebrows which gave up. I believe that cooling my scalp helped to protect my hair follicles. At my onc centre they have now got a new type of cold cap which is being used all the time with much better results (I see the same ladies every three weeks). As Jenny has said and also from personal experience it is unpleasant and very cold but certainly manageable.
Hope this helps
Ellie

[BonnieR]

Susan, I have heard of this but always thought of it as an urban myth sort of thing because, as you say, otherwise it would be more widely used. I have never known anyone who tried it. But from other posts, maybe it has some validity. Have you researched it at all ? What does your onc say? And treatment room nurses know everything!!
Keep the faith! (And the hair!)

[Sandyt]

Susan,

Hey, a friend of mine used them and did really well. She did lose some hair but only she could notice. I hear they work great for some and maybe iffy for others. I think there are 2 companies that sell them, Chemo Cold Caps and Penguin.

Good Luck

[tricia keegan]

It wasn't around when I was dx in '05 but the chemo nurse at my hospital said some patients choose to try them but they're uncomfortable and usually the 50% hair loss looks worse than losing the lot and using a wig or scarf, I don't think I'd bother!

[Ellie F]

Just wanted to add that there are a small number of women who suffer permanent hair loss following chemo. I have recently read (but can't remember where) that cooling the scalp MAY stop this from happening. As I posted I agree with Tricia that I still lost a lot of my hair but then it did come back with no thinning! Guess the jury will be out till we get some more long term information
Ellie

[SusanN]

Hello Beautiful Gals...thank you so much for your input!!

Well...Bonnie...I can say, I have not had much time to do alot of research besides looking at The Rapunzel Project, (donations can be made there...so it is VERY pricey!)...and as with Sandy, I've heard of the Penquin Cold Cap...then there are other competitors, etc.
I had to smile at your "artic" remark Jenny...I'd have to bundle up, as cold as I get normally, I can't imagine me truly doing this...
Ellie, interesting that you've had experience with it, you mentioned your eyelashes/brows...did they return now?? As you mentioned Tricia with the hair loss...I'll just WALK WITH FAITH...!!!
I FINALLY have a "telemed" at 2:30 today to review my Treatment plan...and off on my journey I will go...I'm not sure if he will insist I start tomorrow or if I can wait unitl Monday...
I just want to get this going!!!
I have LOTS of questions...as usual...my "journal" of questions & answers as I've walked out the time of finding my lump...having surgergies, ect...now chemo!!!

Blessings to all of you this Easter!!

[tricia keegan]

Good luck Susan!!!

[rapunzelproject]

Hi Susan,

Cold caps work as much as 90% of the time, and are effective with all chemo drugs. Patients using the cap system available in the US do not lose 50% of their hair. All patients have some shedding sooner or later, as the oldest hair follicles can not take even a small amount of trauma. But noticeable hair loss is the exception, not the norm. Our website www.rapunzelproject.org lists about 50 US oncology locations that not only have patients using cold caps, but have opted to support those patients by accepting a biomedical freezer from us, to make cap use easier and less costly. Hundreds of other locations have patients using caps, but with no freezer. We would be glad to send you more info if you contact us through the website. The process is not one everyone would choose to go through, and sadly it is not normally covered by insurance. We just believe all patients should know about it and make the choice that is best for them. Best wishes to you.

Nancy and Shirley, The Rapunzel Project

[roz123]

susan - bco.org has entire threads dedicated to cold caps. You could connect with women who have done this to see what the "real life" experience is. I could barely handle the icing of the fingers and toes during taxotere so I don't think I could handle it on my head but you may be able to! good luck

[SoCalGal]

I see women use them at my treatment center all the time. Its a whole system and they are very bundled up.

It would have added too much stress for me - hair was the least of my problems back in 03. But some people can't imagine loosing their hair so it's a good alternative. I had a friend who invented her own version using dry ice many years ago, and she didn't loose her hair, it only thinned.

In some ways it is very liberating to be bald. Not something most experience and it does grow back.

Good luck with your treatment and whatever you decide to do with the cap.

[Kkmom]

There is a girl using the cold caps at the Infusion Center I go to. I believe the brand she used was Penguin Cold Caps. I talked with her one day about the cold caps. She was being treated for stage 1 breast cancer with 4 chemo treatments. Her mom and sister were there to help her change out the cold caps like every 20 minutes. She has kept most of her hair and thought it was worth doing. I think if I only had 4 chemo treatments, it would be manageable.

[BonnieR]

SoCalGal, you put it very well. There IS something liberating about being bald for a period of time. Like a rite of passage or symbol. In retrospect, I would not have tried to hide it so much. But everyone has their comfort zones I know of a woman who refused chemo because she didn't want to be bald for her high school reunion. She died. Bad trade off.
Keep the faith

[SusanN]

SoCalGal...I really appreciate how you said your hair was the least of your problems...and Bonnie...OHHH MYYY, NOT EVEN A TRADE OFF!!! I'm not going there!!!

I've decided to "Warm Cap!!"

I really thought after my first cycle last week things were going quite smooth...until, I unfortanately ended up with a UTI...had a reaction to the "sulfa" in the RX...UGGGHH...I'm alright today, but WHEW, the last couple of days have been quite a ride!!!

Okay...you all are soooo wonderful, and perhaps I should start a new thread...I just need quite abit of help...

I have been VERY constipated...I know to drink LOTS of fluids...fiber, fruit, veggies...however, I really am not getting much relief still...any other suggestions...I even have MiraLax...

I know...I know...what a mess I'm becoming...needless to say...my hair...no, I'll be fine...it will grow back!!

I have other things which are much more important to get though NOW...I WILL DO THIS...God is Faithful!!!!

You gals are such strength and encouragement to me!!
Thank you!!

[BonnieR]

You are not becoming a "mess"! You are right where you're supposed to be. Just remember that we are speaking in hindsight. You are in the throes. But, really, hair loss is part of the process. A friend reminded me that it proved the chemo was working! It's easier to accept it than have one more thing to fight. Surrender this aspect! And keep the faith

[Ruth]

Susan - my sister is doing this. Granted she has only had one chemotherapy treatment so far two weeks ago but her hair is hanging in there and she doesn't have the itchy feeling on her head like I did before my hair fell out and I shaved it. I'll make sure to update. She's on TC every three weeks. Hugs Ruth

[IrvineFriend]

Today I had to go into work all day to administer an ex-employee's graduate school exams (I'm her Procter) and after a few hours, took off my scarf. My BF picked me up from work and we went shopping. Off and and away! I'm in So. CA where it was warm today and didn't even think of my bald head. Went to 3 stores and everyone was so sweet to me, smiling, etc. and it wasn't until hours later this evening while BBQing that I realized I went around BALD. I was irked at the BF that he didn't say anything, but he actually likes it and it doesn't bother him. The couple times I've taken off my wig or scarf at work my colleauges (all much younger) love to see my bald head and encourage me to be free. They like the older woman biker chick look (I'm 48).

The reality, I have cancer, I have to be treated for it and it's pretty harsh and my hair fell out in clumps because of it. Don't know about you, but I'm just recovering from #4, and dreading #5. I had NO problems until this last round. My bald head validates what my body is going through for me. I don't miss work, go into for a few hours, and then go home when I hit the wall and that wall is hard for a couple days (Monday and Tuesday). I do chemo Thursday.

I ran a few miles yesterday but had to walk at 20 minutes, the first in my life. My baseball cap covering my bald head reassured me it's just the effects of the chemo. It's been 10-days since chemo and I should be tired and run down.

Of everything, my bald head and smooth legs and lack of pubic hair reassure me this isn't a joke. I love my smooth legs, I love the fact I can get up and out the door in minutes, just have make-up to deal with, but I know that I have to be more careful in ways that I didn't have to worry about before cancer. My bald head is my signature that I'm a cancer patient, like it or not, and I have to do or not do certain things right now. I'm very OK with this. And so is every person around me, family, friends, co-workers, people in public, boyfriend, etc. They all want to see my bald head, touch it, my boyfriend rubs it and kisses it. I have cancer and I'm actually very okay with it. Just dealing.

I read stories on here of Chrissy and Cool Breeze, etc. and cry. Not because they bum me out but because they're so brave. I would love to be that woman of honor and being OK with my cancer is the first step.

I plan to fight this and shout out for help when I need it because I don't want to let this beat me. Nobody should. We're all children of God and the series we're on at my church is HOPE. How appropriate right now.

When I run I wear a b-ball cap and then towards the end of the run take it off as I'm hot (if it's not sunny). I don't care if anyone in the park looks at me, .... I have cancer and I'm running!

My bald head is my cancer signature and that I'm so much better and stronger than it. And if I'm not, then I'll be graceful, like the women before me that I'm proud of.

A colleague asks when I'll be doing my next 1/2 marathon and I tell him I haven't stopped training. I'm a long way off but I'm going to stay active. Even a couple miles during chemo.

I've been told I look like a model since losing my hair, so it clearly doesn't look that bad,

[jaykay]

Susan - you'll be surprised at how much faster you can get out of the house being hairless. And how much money you will save on shampoo, haircuts/color (if you use color). Your legs (as IrvineFriend says) will never be as smooth. Unfortunately, if you have hair on your face that you bleach/wax/otherwise remove - that stays - go figure :-).

My eyebrows and eyelashes have thinned and I'm hoping my eyebrows stay around since I am hopeless with stencils. The thought of losing my eyebrows bothered me more than losing the hair on my head.

I lost my hair mid-December and I don't go without a fleece cap in my house. I've been cold for months! I'm not a head scarf person and don't go "out" without my wig. That's just me; everyone has to do what they are comfortable with.

I would look into icing your fingers. My last 2 chemos really brought out the "ugh" on my fingernails. Worse part is that a couple of them are separating from the nail bed and I need to be really careful about how I use my hands. I work in the computer industry and am always on a keyboard. Hasn't been easy.

Irvinefriend - what a great post! I'm going to hijack this thread. I finished chemo on March 14th. My worst sessions were 3 and 4. 5 was very mild on the side effects and I was absolutely giddy with the thought I only had one more to go. Number 6 really threw me - was totally exhausted and figure it was from the Neulasta in combo with the chemo. It took me longer than usual to "recover". But I did and it's over. Had my first Herceptin only infusion and actually had a normal weekend.

Everyone told me I was doing really well during chemo - bloodwork was great except for a bump or two (low potassium). When I saw my onc last week, I complained about how my legs hurt and that my "wind" was just not coming back when I worked out, especially on the treadmill. She told me I was anemic from the chemo, NOT to do the treadmill, eat red meat, be patient, rbc takes a while to come back due to bone marrow suppression from the effects of the chemo.

Well, I've been exercising all along, just not at my normal intensity. And patience is not my greatest virtue. So while I don't run (but walk really fast), I can definitely relate to what you wrote above.

Best

Janis

[IrvineFriend]

Susan,

Sorry I hijacked your post. I was feeling really down last night and was venting.