Cold Caps Users Past and Present, to Save Hair
Comments
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I had an appt. today and my MO wrote me a script for Ativan. Maybe that will help with the anxiety. The nausea I have under control, but the fatigue, headaches, and emotions are awful! My mom washed my hair today and I had a small amount of shedding. I hope I don't lose all my hair. This really bothers me. Did you guys lose your eyelashes and eyebrows?
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Mamacath - You are absolutely right that having your hair, even if it ends up much thinner as mine has, will keep your spirits up. It definitely helped me cope with chemo and radiation and enabled me to maintain a positive attitude no matter how punky I felt. Using cold caps was the best decision for me and well worth putting off chemo a week in order to be able to get them.
Dancingthru - I wish you the best. Just seeing your age brought tears to my eyes as my daughter is your age. You are so young to be going through all of this. Good for you to be using cold caps. Stick with them. They are worth it, even if you lose a lot of hair it will be much easier to face the world each day looking familiar to yourself when you look into a mirror.
reneerDSM - How lovely of you to give such solid advice based on your own experience to someone struggling to make a crucial decision. I hope she follows it.
You asked about coloring your hair. I am also 20 weeks PFC (five months) and I just went today. I am so glad I did.
I couldn't wait any longer to find out what could be done about the messy look of my hair. I had a heathy growth of silky, straight 4" roots in several shades of grey - no pun intended - which came in instead of my old dark blonde color with some lighter areas around my face. It was actually almost white where it had been light before and quite dark in other areas. Plus I have lots of breakage because I had bleached my roots too close to chemo - my fault entirely, add to that some wiry chemo hairs on top, lots of new soft hairs filling in everywhere all over and two coin-sized spots sprouting almost black hair where I had gotten frostbite.
After considering things a bit and listening to how I still need to be careful, she opted to use an all over glaze, which she said was gentler than using highlights and would cover the grey and blend it into my blonde longer hair. She also gave my hair a cautious trim to tidy it up - I had already trimmed it several times myself and not too well. I can not begin to tell you how much better my hair looks with some color and a trim.
I would say go to your hairdresser now, tell her about the cold cap process you have been through and explain the need to treat your hair very gently for a while still, which means that you must use cold water to wash it and cool air to dry it still for another month or so. Then discuss what options are available for what you would like to have done.
I brought my own shampoo and conditioner, which we used, plus my own wide toothed wet brush and I wet combed my hair myself. I had the shampoo girl be extra gentle, no massaging my scalp during the shampoo or rubbing the hair to dry. We just blotted it dry as I would at home.
I also blew dry my hair on cool myself - she offered to let me do it - as it took so long to dry my long hair. I didn't want it to be brushed or styled this time so that worked for me. I think if you have your's hairdresser blow dry your roots on the cool setting a bit, it would be fine to finish blow drying on medium as she gently styles it. Just don't allow her to use hot air yet and ask her to be extra gentle with any brush she uses when styling so that there is no pulling.
I am sure your hairdresser will be willing to work with you as treating your hair this gently will only be necessary a few times. I am planning to go back in 4 - 5 weeks and we will see whether we should continue with a glaze or move to highlights. Meanwhile, I am so happy I finally got up the nerve to call and make a hair appointment. My hair looks so much better
Good Luck and Happy hairdressing!
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I have taken paracetamol before wearing the caps but to be honest I don't think it makes much difference. Those first few minutes are gonna hurt whatever! I have thought both times "why am I doing this to myself?!" but the pain soon wears off.
I still can't be sure of the success of my attempt. I'm shedding and thinning on top but still with full head of hair. It's 28 days since TC #1, 7 days since #2. Would I definitely be bald by now without the caps? I still have other hair (body, pubic, eyebrows) although thinning as well. I've mentioned previously that the cap doesn't fit the top front of my head well and that's where my scalp is most tender but am somehow still hoping for a miracle.0 -
michellej19 - Yes, you would be completely bald by now, so you are successful! Congratulations and keep it up!
My body hair was slower to go and I had the same questions, but I can tell you it will go. My eyebrows came back fairly quickly. My eyelashes never went entirely, but I got down to about seven hairs between the two. They are regrowing now and at 5 months PFC are thick and about a half as long as they were. Some on this forum say they may fall out again once or twice but my doctor said that would not happen. I will have to wait and see. As for pubic hair, to my surprise it went slowly, but it did mostly all go leaving a fringe along the sides. It's come back almost entirely now.
I didn't have to shave my legs or underarms for about a month and a half which was kind of nice, then the hair there started growing again. The first hairs were very soft and almost colorless so were hard to see.
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Dancingthruit- one tip that I can offer is making sure the moleskin is close to the hairline. I have a small amount of frostbite on my forehead.
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Dancingthruit, I took an Alieve before treatment and it only hurt for a few minutes.
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Here's a tip from my local cold cap rep - yes, you want to get the moleskin as close to the hairline as you can, but then cut a pantiliner into pieces and stick those pieces onto the moleskin to extend beyond the moleskin and cover up those little baby hairs along your hairline and any bare skin on the temple area etc. I haven't used any pain meds - the very first cold cap was pretty shocking but the "painfully cold" feeling wears off quickly as your head freezes.
Off to my last of 12 treatments tomorrow. 
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Go you, PatinMN! Feels great to be on the 'other side' of chemo - even if it's only 1 day:-)
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YAY PatinMN!! Wow, doing this for 12 treatments, kudos to you
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I highlighted at 6 months PFC. Highlighting is more damaging than coloring, according to my stylist, so I waited the full 6 months per PCC protocol. Others have colored much sooner with the gentle type of color.
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PatinMN, BIG congrats to you! 12 treatments is amazing and I will think of you if I ever feel like 8 is too many!
Thank you for everyone's input! I was nervous about the frostbite and moleskin as well, so that information is greatly appreciated! I was amazed to hear that there was something that could possibly save your hair while undergoing chemotherapy... Very exciting. It is reassuring to hear that the freeze pain wears off... Definitely worth it in the end! Can't be worse than child birth, right?!? I just keep telling myself that. Lol Thanks so much again!0 -
Nothing like childbirth! The 'ice cream' headache lasts for about 10 minutes. And the 'I'm tired of wearing these heavy caps, the straps are tight, and my neck hurts' stuff lasts for maybe an hour at the end. Unless you had really short and not too intense labors, you've already shown you're tougher than cold caps!
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Dancingthru...Oh they are SO worth it. Honestly, they only hurt for a few minutes. It's really not a big deal at all, nothing whatsoever compared to what you have been through already.
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Is it ok to wet my hair with water between washing? After sleeping on it, my hair is so wild and out of control. Also, what about going place do you guys try to style it at all? I'm just think about the Christmas Eve service at church. Opinions?
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I scheduled my hair washing around events I had so my hair could look decent. I was not working though so on the other days I was mostly home other than the gym and doctor appointments. When my hair was at it's yuckiest of the week I pulled it back loosely in a low ponytail and pulled the end half way through so it looked like a low, loose bun. I would sometimes throw a colored, thin, elastic headband on to dress it up a bit. I also had a cute lightweight hat that I would wear with my hair pulled back like this.
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SLB11 - I know that sebm9 swam and rinsed her hair every day. I have occasionally rinsed with cool water and it seems fine.
On another note - I got an e-mail today from my oncologist saying that she and my BS would like me to present the research on cold caps to the physicians at the weekly breast program conference in January! What a great opportunity to get the word out. If any of you who are finished would be willing to share a photo of your hair post chemo, I'd appreciate it. I'd use it with no name or attribution but would appreciate knowing what chemo regimen you were on. Would be great to have several representing the various chemo regimens. You can PM me for more info.
Will keep you in the loop as I develop my talk.
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Wow 301724, that is awesome! I'll PM you - you go girl!
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Mdg- I actually posted on your blog earlier asking you what aveda products you used. I'm trying to figure out what to do with my hair on Christmas eve and Christmas day.
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SLB, my does NOT style well at all without a blowdryer and round brush. So I looked pretty pitiful during chemo, but fortunately, I didn't have to work during that time and didn't go out much. When I did have to look half decent, I would use a headband to pull my bangs back - that's a decent look for me.
I washed my hair every 3 days - and also tried to schedule my wash days on days I had to go out in public (ie. if I had to, I'd go 4 days without washing to let me wash my hair for an event that fell on the 5th day).
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I am washing every 6 days or so and my wavy hair is getting dry and tangled with this second treatment. I tried the spray on leave on conditioner yesterday and I think I went overboard. My friends say you cant tell any difference but I have shed a ton and it feels drier and frizzier. BUT I HAVE HAIR!!!!!!! MY roots are darker than my color but only grey at temples and front top hairline. I will be 60 next month so lucky that the roots are dark and not grey. The texture bothers me more than the color. But as my daughter says...."WHATEVER'
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That's a good attitude schoolmom! Yucko hair is better than no hair! And it fills back in really nicely. Even though mine isn't all grown back in yet (I can tell by the shorter hairs behind my ears at the nape of my neck), my hair looks like it's old normal self. Actually, I think it looks better! It's drier with slightly more curl and body - used to get oily and be flat very easily. So something to look forward to! The roots are darker - don't like that b/c I like being blonde...but I'm fixing that with gradual hi-liting.
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Hi all - Returned from business trip to Florida yesterday. The sun and warm temps are great for the soul. It's cold, grey with mixed precipitation in Michigan. Most colleagues did not know I was being treated for cancer and treated me normally. Several complimented me on my new sassy cut. While I have significant bald spots on crown area, most people don't notice, because I have a lot of hair in front. The shedding has slowed down to a more manageable level now. Going in for third treatment on Wednesday and hoping the shedding doesn't pick up again. I also use Tylenol before my treatments since I had serious ice headaches during the first treatment. This really worked well for me and made the cap treatment much easier to handle. Good luck!
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That is awsome 301724! I would be happy to email you a picture of my post chemo hair. Several months ago mdg asked for pictures and write ups from past users for her blog, and I was happy to oblige. I was asked to speak at a fundraiser for Rapunzel this last January only a few weeks after my 6th and final treatment. I feel we past users have an obligation to get the word out.
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What a wonderful experience for you, Laura! I'm sure the Rapunzel project benefitted greatly from your talk.
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Ladies - as part of my research - if you know of centers that have supported the use of cold caps, any where studies are being conducted, and any physicians who are particularly supportive - would you please pass that on to me. Happy to have you either post the info or PM me.
Thanks!
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Loafer - Congratulations on your trip! You are doing so well! You probably will not increase in shedding, but may stay at the same pace. It does seem as if each person is different. I settled down at a pace and stayed at it.
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Do you guys know if it's ok to have an occasional glass of wine? I know caffeine is a no no.
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I used Aveda Be Curly on my hair - not on roots to style it sometimes but I was letting it air dry and I would scrunch it and let it do what it wanted.
I am happy to share pix. You can let me know if you want to use what's on my blog or if you need better quality, PM with your email address and I can email you as many as you want.
Again I will through the offer out there...if anyone is willing to share photos on my blog, PM me. I can block out your face if you like. I just want to help provide proof that the caps work to non-believers.
As far as supporters - the three MO offices affiliated with Beaumont Hospital in Royal Oak MI did some of the studies a while back. They have freezers and are fairly supportive of caps. PM me any questions on that.
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SLB, regarding wine, I don't know if it's strictly allowed, but I have seen posts on other boards mentioning having a glass of wine during chemo. I had a glass of wine at my office Christmas party Thursday, the night before my final chemo, and no ill effects.
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SLB11, I didn't know there was anything wrong with drinking coffee or alcohol. I drank coffee every day and had a glass of wine whenever I felt like it, although I rarely felt like it.
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