Cold Caps Users Past and Present, to Save Hair
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RainDew, I think the video on the Penguin website says 2 hours - they need to update it! Most of us did the 4 hours post chemo, and some do 5! My facility had a medical freezer so I was there the entire time. By that point I had drunk so much water that it was change cap - go to the bathroom every half hour. I do think that drinking so much water helped me retain my hair - I hardly lost any. Good luck to you - you will do fine!
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I also did TC and wore the caps for 4 hours after chemo. It was not bad and I HATE the cold! If I can do it -you can do it!!!
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I did the 4 hours at home because I live 5 min. from facility. Also, we learned to attach velcro straps loosely to cap before putting it on my head . Then my helper tightened the straps when it was on my head. it helped prevent my hair from sticking to velcro. I did not drink lots of water afterwards which may have contributed to more shedding than I wanted. All in all, no wig or hair pieces needed when I returned to work 3 days after last chemo. Good luck to all!
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Daye, Ibrewer, Patin,
Thank you so much!
Like Patin, my center has a freezer, so no wearing them home and passing out on the couch for me...4 hours means a REALLY long day there (like 8-9 hours including the MO visit first).
Poor husband!! I'm not sure he knows what he's signed up for...
Anyhow, thank you all so much. I will let you know how I get on. Am really hoping that this will help - I will need to work in a professional setting thru tx and am trying to keep a low profile beyond my teams..
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I also wore the caps 4 hours after each treatment. It will be a very long day, especially since you have to stay at the facility, but it's only 4 times. Please make sure you practice with your helper(s) prior to your first treatment. Use the caps directly out of your freezer and practice putting them on and getting a tight fit. I never wore the caps at home between treatments.
I also work in a professional setting and worked fulltime during chemo. The caps worked so well for me that only people I told had any idea I was being treated for cancer. It's only now that I'm finished with active treatment and feeling normal that I'm more comfortable sharing my diagnosis at work.
Good luck!
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Help cold cappers!! I am 9 weeks PFC and I have plenty of grey hair! Any suggestions?? Is it too early? If anyone has used any products, which ones worked best? Still shedding but can't pull it back with soooo many greys! No complaining-still have hair!!!
Thanks for any suggestions!!!'
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Rain- I worked full time during treatment as well and no one had any idea that I was undergoing chemo unless I told them. My department threw a party at the office after my last treatment, so I guess everyone found out then! I'm sure you will be fine keeping a low profile!
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I wore them four hours afterwards also. Once they are on, it really doesn't matter. I wore mine at the hospital as it had a freezer. I had a paid helper which made it easy for my husband to be able to go out for lunch or do errands.
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thanks ladies.
Paid helper may be a good idea...I think I might look into that.
:-)
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rain my husband did my caps and he did great! Many of had friends and husbands do the caps for us with success. What area do you live in? There may be a former capper nearby that can help your husband learn how to do this. We all support each other here. So many of us are willing to help others get through this.
I chose to not work my full time job through chemo but when I did go back no one knew I had chemo. I even went back to teaching aerobics a few weeks after chemo and my class did not know. I still has my long ponytail and looked the same.
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2-boys, I colored at three months. Although my hair was still shedding, it had slowed significantly. Try to hang in there a few more weeks. I know it's tough when you're starting to feel better and you want to look better too. I'm sure there are some who colored earlier and they will weigh in.
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2 boys mom - hopefully someone else will jump in because I can't remember the name of the stuff I used! I know others used the same thing. It comes in a small container - sort of like mascara. There are two types - one with a brushy tip and one with more of a magic marker-type tip. You apply to your roots, and it lasts until you shampoo. It helped with my long gray roots, but it's not perfect. Hard to get color on each hair, so it just sort of tones down the gray.
When I finally went to my colorist for my first post-chemo color (at 7 weeks PFC), what we used didn't do a great job (it looked more light brown than dark brown) and she then applied a spray-on color which looked awesome (but again, only lasts until you shampoo). It really looked natural. I am sorry but I don't remember the brand name. I believe someone else used some spray-on color with good results.
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i used a color highlighter that I got from Sally's supplies here in tx. I still use it for touchups 18 mos later. Brush on with wide tip. Comes in a few colors. Worked great.
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I will be starting chemo on Wednesday and just got my Penguin Cold Caps. I'm in the process of figuring out where and how to get the dry ice, and I'm wondering if anyone has a comment on using slabs vs. pellets. I know that PCC recommends slabs, but I talked to a gal on the phone who used the caps a few years ago, and she suggested using pellets because she thought they would fit around the containers better in the coolers (although she did not have access to pellets so used slabs herself). Thoughts anyone?
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kpmacmill - we use a combination. 60 lbs of slabs and 20 lbs of pellets. We originally started with 100 lbs but found 80 works well for us as the caps are on ice for a few hours before use given our commute. That said, my husband notes he thinks slabs alone would work well.
My husband orders from the manufacturer, Carbonic! And they've been very willing to work with us on delivery.
Best of luck.
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kazzy - how's your hair holding up? Have you finished AC?
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I have to decide to do cold caps by this Mon to have them in time to practice before my chemo starts on July 16.
I am getting married next yr and want to keep my hair...so I don't get married with a buzz cut....so may go against my oncologist and use the cold caps.
I've been reading all the postswith many helpful tips about preparing the cold caps....thank you btw.
What about your hair every other day...not being able to use hair dryer and style your hair. I'm doing a test today to see how awful I look with air dryed hair...and it's pretty awful. Are there any tips/tricks around this? I consider my hair straight...but with the layered cut I have it makes it wavy/frizzy looking. Did anyone use product, a hair blower, curling brush...or what about a loose fitting hair fastener like a Bobby pin? I read hats and scarves are no no's....so it going out and cutting your hair shorter which is what I want to do.
Help...I really want to use cold caps, but not sure I can pull off the au natural hair thing.
-Jennifer
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patinmc - Thanks so much for checking in! I'm not sure the hair will hold out. Shedding and thinning has been significant and consistent the last few weeks. I finished AC and had my first of four dose dense taxol. Three treatments left. Everyday I'm left wondering. But I take some comfort in knowing I've done all I can and that I have gained 40 days of hair I otherwise wouldn't have had.
Scared42 - I've been using cold caps since may 1 and through 5 infusions thus far. We do use dry ice and I am have been lucky to have two helpers - my husband and dad. It's a commitment to be certain over a long day. I don't find the caps too uncomfortable, after the first five minutes it's not bad. Definitely have needed an electric blanket to keep my body warm. I've thinned a lot but still not at a point where strangers could tell something was wrong. I think the success depends upon the drug protocol and I'm told that my dose dense ACT is one that tends to have less success than others.
I think we all were skeptical about the success but I am a believer given the success I've had thus far. I've also been using biotin and biosil to help strengthen the hair. Good luck making your decision. It's a difficult and scary time. Have faith you'll get through regardless and that it really will go by relatively quickly. I still can't believe I'm done with 5 of 8 treatments, seems like yesterday I was going in for my first.
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hi ladies,
One more weird question - did you guys take biotin and/or silica? If so, how much?
Thanks and happy 4th!!
Rain
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Just out of curiosity - does anyone know why PCC recommends no caffeine while using caps? Too hard on the liver? It's my only vice, so I'll be sad to stop drinking caffeinated coffee, but I want to follow the directions to the letter.
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Re: hair dye. I colored my hair nine weeks PFC. I used Clairol Natural Instincts and left it in for just a bit over 10 minutes. I had no problems and was so happy to have my old color back. I've continued using the Dermorganic conditioner, though, and not the one that came with the dye.
As for ice, we layered the boxes with slabs and they stayed plenty cold. By the last round, we only got 60 lbs of ice (divided between two coolers) and still had to wait for each cap to warm up a bit. Gotta love those Igloo coolers!
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kpmac, I'm still drinking caffeine. Iced tea is the only liquid that doesn't taste like crap to me, so it is what it is. I don't know why they recommend it, but when you're doing chemo there's so much that just goes out the window in an attempt to deal with se's.
I have done really well with caps, despite all the caffeine. Just food for thought
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scared42: I ended up wearing headbands for four months straight—mostly this brand from Amazon—because I'd lost so much hair on the sides and top: http://www.amazon.com/gp/product/B00F3LT796
I actually got pretty use to them. They fit with my style of clothing (sort of mod/retro) and helped me avoid bad-hair days.
As far as products go, Dermorganic makes a hairspray with Argan oil. I quite like it. They have a mousse you might try. But, really, you're going to want to keep the combing and styling to a minimum. If you have to blow-dry your hair, do it on the lowest, coolest setting. For the few times that I needed to look a little fancier than usual, I used a curling iron with a small wand (or whatever you call the part that heats up) and made sure to keep a *very* safe distance between the wand and my scalp.
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Did everyone buy the 60qt igloo coolers? There is also a 70qt cooler that seems to keep things cooler longer according to reviews on Amazon? Also when did you get your dry ice? Is 5pm the the day before your treatment (mine is at 9:40am) ok...just worried the ice won't last long enough to freeze the caps again for the 2nd round.
And wondering what shampoo/conditioners you used? Read the name Kendra moisturizing but I can't see if the are paraben/sulfate free.
I plan to place my order for the PCC's tmrw...though need to know the hospital will let me use them first...my Onc was against it. I'm planing to place my order for everything else I need tmrw too!
My poor fiancé....he has a lot of work to do!!!
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I picked up my dry ice the day before around 4 or 4:30 p.m., infusion started next morning around 10 a.m. (although scheduled time was 8 a.m., they always ran late).
The first time I bought 80# and found that near the end of the 4 hours afterwards my caps weren't quite cold enough. So I switched to 80#. But if your infusion isn't as long as mine was, and they start on time, I suspect you will be fine with the 80#.
I used the 60 qt coolers.
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scared....what state r u in?
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hi scared42,
Tips on styling, on hair wash days when I was going out I used a blow dryer on cool low until my hair was just damp. Then I carefully set it on big Velcro rollers, sprayed with DermOrganic volume spray and then let it dry the rest of the way or used more cool air. Other days I pulled it back with tiny claw clips or a low barrette and just didn't look at it. LOL. Don't be afraid to push back on your MO about using the caps...many ladies ran into that and some even switched doctors/centers because of it...chemo is big money and if they don't want your business you can find another doctor who is more supportive. Good luck and feel free to PM me if you want with any questions.
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Just answering some random questions...I used Dermorganic shampoo and Kenra daily provision leave in spray after each wash. The leave in spray really helped with tangles. Also, I wasn't aware that caffeine was prohibited. Although not a coffee drinker, I continued to drink tea throughout chemo. I spoke to Frank Fionda (sp?), the inventor of Penguin cold caps when I was considering using cold caps. He really stressed taking silica. I bought silica, but never remembered to take it.
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hi schoolmom, I live in NYC...Manhattan.
I got a haircut on sat...just a trim (1 in around) and did a coconut oil and egg conditioning treatment. Not that my hair looks healthier
Unfortunately I need to work full time through chemo so need to go into an office mon- Fri...and look professional. And my hair air-dryed looks anything but professional.
It's good to know you can use loose fasteners, a roller and even some product.
My hair is pretty terrible not blown dry but I guess I'll try different things out this week before chemo.
I would love to hear other hair care tips!
Also what about eye lashes/eye brows...are those a definite goner? I already have bald spots in my eyebrows...
Well I'm calling my doc today to let her know about the PCC...though I did tell a nurse on thurs. And also asking for a port...they said I didn't need one because I have good veins...but from reading many posts on here...it sounds like a port is the way to go! Here's to hoping I don't have to scramble to find another hospital/oncologist because of the PCC's.
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I had my 6th dose of TCHP last Wednesday and I've still got hair. In fact I have new growth that happened during treatment that is already filling in on the sides above my ears.
Lots of comments at the medical center last week during treatment and other appointments about how they hadn't seen anyone use cold caps before, or hadn't seen and breast cancer patients undergoing treatment who still had hair.
Looking forward to new growth, cut and color and being able to tuck my hair behind my ears without looking like a freak.
Shipping back the caps this week. Onward and upward!
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