Cold Caps Users Past and Present, to Save Hair
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Thanks everyone! I had a great time doing the segment and most of all I'm just happy to be able to get the word out!! I wish I recognized everyone in the pictures. I'm going to have to freeze the frame and see if I can do better. I recognized Ang right away and I believe I spotted Colleen and Michcon. Susan - you look great. Had no idea what you looked like before. How nice would it be to get to meet everyone in person. Maybe Frank will have another conference and we'll all be able to attend.
I too was surprised at some of the negative comments on GMA. For sure the caps aren't for everyone but to me it meant being able to walk around feeling normal so it really wasn't about vanity at all. It was more about not wanting anyone (even myself) to know there was something wrong. I would not have put myself in danger to save my hair. Even more shocking were the comments that said - "I'm sick of breast cancer!" Well guess what, we're all sick of it too! Unfortunately it gets so much attention because it affects SO many people.
BridetoBe - please keep us posted on Canadian goings on with the PCCs.
Back to the hair questions - JP, I don't think I have anything to add to the posts but to agree with the following...I used satin pillow cases but not sure if they make a difference....I highly recommend getting away from the baby shampoo and switching to anything that is paraben free. I also recommend the Crystal deodorant. I have been using it since the day I spoke with Frank and it works fine for me. You are not supposed to used the aluminum based products because the aluminum supposedly get absorbed through the skin and they think it may be linked to alzheimers and some cancers including breast cancer. This was one of the easiest fixes for me to make. You also asked if your hair continues to grow the answer is definitely yes. Supposedly the Herceptin slows down hair growth. I'm on that too but I can't really notice that yet (unless we're talking about my eyelashes that are pretty short).
Lucky60 - I used a bag of frozen peas on my hands and feet and it worked just fine. I used it during the whole Taxotere infusions plus a little before and after. They stay pretty cold the whole time. I put the bags back in the cooler when I was changing caps or going to the bathroom. Also, ice cubes in your mouth during the T help with burnt tongue, bad taste, etc.
Ditah
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Hi all,
I'm expecting a shipment of 14 cold caps to arrive tomorrow, and starting chemo a week from then. I'm now gathering the needed equipment. I imagine this has already been discussed, but I've gone through 18 of the 43 pages of this topic, and haven't found it yet. Anybody recommend a particular thermometer for the cold caps? Same question about the gloves. Also, is there any place (a post in this discussion?) where a lot of the tips on using the cold caps are summarized?
Thank you all!
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Hi bernbird - I give you lots of credit for having gone through 18 pages. Before I started I spend half the day reading the posts but that was 6 mo. ago so you can imagine this thread has grown a lot since.
Some people have mentioned that they got their thermometer at Sears. Someone else recently mentioned that you may be able to find one in an automotive store (because they are used to check engine temps). I got mine on amazon.com but it was pretty expensive. Just make sure yours goes down to at least -40C. Mine goes down to -50C. As far as gloves, my BIL got PVC gloves. You can ask them in the dry ice place what they recommend.
I believe sebm9 has put together a list of tips so you can PM her.
Good luck and come back often to ask questions and give updates! What chemo regimen will you be doing?
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I forgot to mention....when you are putting frozen peas on your hands and feet it's not like the cold caps so please make sure not to get frost bite. The caps are especially designed to be able to really cool the scalp without giving you frostbite. I kept thin socks on my feet and put surgical gloves on my hands. And if my fingers got really cold (like if you were on a ski trip) I took them out of the peas to warm up.
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jpmercy: I was paranoid-careful about my hair throughout! I not only followed all the haircare protocol, but I used a satin hair bonnet while I slept. Looked silly, but with shoulder-length hair I was afraid it'd be pulled while I slept. I also used a satin pillow case. Didn't do much but it felt nice :-)
And hey, feeling nice is important!
I'm 4 months out of chemo and still baby my hair with gentle shampoo, cold water, gentle wide-tooth combing, no heat, etc. I didn't realize it at the time, but the hair I was losing was re-growing while going through chemo. I have light brown long hair but now also have 2" black and grey wirey hairs sticking up all over my head, most noticeable at the crown giving me a decidedly fuzzy look. When they were shorter I didn't notice them except above my ears, but now they've got their own oomph.
For hands and toes, I used small gel freezer packs (like you'd use in a lunch box). I found some Rubbermaid ones that were little 1" x 2" rectangles. I wore socks on my hands and feet (like mittens) and stuck a couple in during treatment. Somewhere I'd read that wine chiller sleeves were also used, so on my second chemo I got very enthusiastic and used those, but I think I got frostbite. At first I thought it was neuropathy, but the burning sensation kept me up all night. I went back to the Rubbermaid freezer thingies and found they worked quite well. I had mild, infrequent neuropathy but found acupuncture was extremely effective (I continue it still, because I like it so much for addressing everything from fatigue to general mood and wellness).
Cheers,
Susan
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I have been so incredibly busy lately but just wanted all of you to know how much of an inspiration you all are! Drim and Jennifer you guys were fantastic and all the pictures were awesome!
So far, hair is all intact but everything else too which I still anticipate will change?
lucky60: I ordered phfirst shampoo from phmiracleliving.com which one of the girls here recommended. It was $30 plus shipping and I still have alot left.
Bernbird: Michcon and I bought our thermometers from Sears for $80. model # 34 50466 - Craftsman brand.
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hi everyone, I'm starting chemo (taxotere, carbo and herceptin) on nov 2nd. I have my cold caps but gosh they cold how did you all do this, ? I don't know if my scalp will take this temperature. Any special tips on hair care? thank you
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Emster - nice to hear from you!! Thanks for the compliment!
zlota - you can definitely do this. It's not so bad once you get used to it. Here are some hair tips:
- no washing 2 to 3 days before and after chemo; otherwise 2x a week max. Your scalp will start to dry out so you won't even need to wash it any more often than that.
- wash with gentle/sulfate free shampoo, conditioner on the ends only, tepid water, do it as quickly as you can
- no heating/styling product
- be careful when you comb it and try not to play with it
- it's okay to put it in a ponytail but use a scrunchy so it's not pulled too tight
- not sure if gray roots will become an issue but if so I used Colormark as a temporary solution.
- some people have used a spray-in conditioner if it gets really frizzy (ojon, kenra)
- sleep with a satin pillow case as this may prevent unnecessary pulling of the hair.
- you can do other fun things with your hair like bandanas and such if you're not liking the way it looks at times.
I think it's also important to keep a good mental attitude. Stress is just not good for anything. Your hair will make it and more importantly - you will get through this!!!
Good luck on Tuesday. Please let us know how it goes.
Ditah
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Hi Zlota,
The cold caps are indeed VERY cold. My friends gave me an electric blanket that I use whenever I've got a cold cap on. It's made a huge difference in my comfort during each chemo session.
This last time, I took a cue from the cold caps and chewed or sucked ice an hour before chemo, during chemo, and for four hours after. I had way fewer mouth side-effects as a result -- little change to my taste buds, no pain, and no mouth sores. So, if you can stand a bit more cold, I recommend this too.
Good luck on November 2! We'll be thinking of you.
Katherine
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Thanks, Drim, sebm9, and Emster for the input! I still don't know the regimen I'll be doing, because the two oncologists I've seen recommended very different ones. Am seeing a third onc on Tuesday; hopefully that meeting will help me make a decision about what cocktail to use. Geez, two months ago, I thought chemotherapy was chemotherapy.....0
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jpmercy - Here is the website: http://www.seachi.com/ You can use this product during chemo. I happened to have gotten a couple of other recommended products before I tried Sea-Chi. With my hair type the Sea-Chi works better.
Colleen
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Ladies,
CTV News (Canada) has picked up the ABC segment. Here is the link:
http://www.ctv.ca/CTVNews/Health/20101029/cold-cap-chemotherapy-101031/
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Ladies,
There is a thread called taxotere and permanent hair loss where someone stated that "there is a small percentage of scalp mets by using the Cold Caps." I posted on there to say that you cannot make a statement like that...
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Thanks bridetobe...I made Canadian TV! OMG! Soooo happy the word is spreading!!
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Drim, hehehehehe!! great job baby!!!! i think ill post my cold cap pic for my profile pic... i need to slow it down so i can pick everyone out..lol i was in the second set of pics, the ones that the pics sprong up on to the tv screen blk shirt, btw, i was wearing a blue cold cap,lol0
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hi ladies,
i have my third taxol of 12 tomorrow....my hair has flakiness all over the top close to my scalp. it looks really bad so i wore a cloth headband on top of my head to work to cover it up...i dont want to comb it out or touch it much but does this go away and should i just let it be?
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Just came back from seeing a third oncologist to get his opinion on chemo regimens. He really was a fantastic doctor, but when I mentioned the cold caps, he flat out said that they don't work, nothing will work, your hair will fall out. So I figure I'll go visit him in a couple of months and show him my head of hair.Anyway, I've been trying the caps on and working with ear coverings. I can't figure out the pantiliner thing. Sorry to be so lame, but can someone describe exactly how they're covering their ears? Thanks!0
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Wow...why would the oncologist be so negative? You think they would have heard about the success stories.
I haven't met the one I want to use yet. They recommend your first visit be AFTER the surgery pathology. Seems like it doesn't give you very much time to "shop around" for advice on chemo regimens?? Doesn't chemo start usually within a month after surgery?
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jennifer - what you are experiencing is totally normal. Between the caps and the chemo your scalp will become dry and flaky but this does NOT mean your hair will fall it. I'm not sure what to do about it. Probably leave it alone is the best advice. I know I've said this but just make sure you really wipe down the caps well before you put them to eliminate the frost.
bernbird - how frustrating. I can understand and onc being against using the caps but to flat out say they don't work when we are all living proof is just ridiculous! So the pantiliners....cut one in half, then put the curved part at the top of your ear and see how the size compares to your ear. Then you can trim the top (and cut out some of the bottom if they are long) to best shape your ear. When you are ready to use just stick them on and they will stay on the whole time.
SusansG - I agree about time. I feel like by the time my path was back and an onc was recommended it still took time to get an appt., then a 2nd opinion (and then I ended up getting the oncotype test during this time) and then the caps, so my chemo was delayed almost beyond the recommended timeframe. My definitive surgery turned out to by March 3. I had a re-excision on March 17th (with no residual cancer found, hence the march 3rd definitive date) and then it was another week or 2 until I even started seeing oncs. I didn't start chemo until May 11th. YIKES! The oncs may not be able to tell you much without the full path report but at least you get to meet them (haa haa- like a pre-interview).
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Drim - Thanks for the detailed description of how to use a pantiliner on my ear! I get it, now.
SusansGarden - It's odd that they say don't see an onc until after you get the path report from the surgery. I saw two oncs before surgery for "pre-visits", which I think helped get things moving more quickly after surgery. One of the oncs (who was 2 hours away) even offered to phone me after the surgical path. report came in; she did, and gave me her recommendations for chemo over the phone, which saved me a lot of time.
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Start my 4xTC next Thursday. Met with my oncologist today and she said -- don't be disappointed if they don't work. She's from England and has seen them work, but she kept telling me how miserable they would be on my head.... She's a great doctor -- but does she not realize one day every 21 days of misery to not have to grow back my hair is SO worth it. And from what the posts say it isn't that miserable. She did say bring an electric blanket! I told her if she supports it through my therapy I'll donate a freezer to the hospital through the Rapunzel Project. And I mean it -- whether they work for me or not -- when you are going through something where you are given so few options and have so little power -- it would be nice to be able to choose.
Caps shipped yesterday-- so I will probably be posting crazy questions once I get them. I'm actually excited to use the caps & how many people can say that when they are about to start chemo???.
Thanks to everyone that has gone before me -- and I hope I can pay it forward. This site is so important and worthwhile.
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Drim, thanks for the tips on flakes!! i figured it is normal! just wanted to make sure, i reminded my mom to wipe them off really good tomorrow that might be part of the problem!
Bernbird- my onc was the same way...he told me i could do whatever i would like b/c he is not concerned in the least about scalp mets more concerned that they dont work.....i then asked the PA that has been there a long time if htey have ever had anyone use them at the office...he said no!! so i called my onc out on it and got him to admit that he has never seem anyone use them so he was only speaking from what he has heard....that they will give me nothing more than a headache! He is very easy going and at this point seems very eager to see if they work! i told him ill get the last laugh when i have my hair at xmass! he said he hopes we are both laughing!
i think many oncs are skeptical b/c the ones in the 80s didnt work but most oncs havent seen that the penguin are much more sophisticated! the first ones in the 80's were bought out of a drug store!!! and then they came up with some in office that oncs were using...the differnece was you put it in your regular freezer so they werent that cold AND you never changed them AND put it on during chemo but not after...to me that is the trick you have to cover hte half life and make sure you maintain hte same temp the entire time! the funny part is that my mom has three friends who used them in the 80s all of which i spoke with and all of which said they only thinned but didnt ever loose enough to even need a wig....that really pushed me over the edge to try the PCC and due the desgn of the PCC and the way we use them that is why woman are reporting little hair loss at all !!! so glad they are in clinical trials so more oncs will be supportive!!
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lmflynn - congrats on getting your regimen nailed down. Interesting that your onc is from England yet she still seems a bit skeptical. Frank has got this stuff really nailed down so I know this is going to work for you. If you need any tips on how to get through TC let me know. There is so much good advice on these boards.
jennifer - very interesting story about your moms friends. Everyone says they didn't work in the 80's but I guess they must have worked for some regimens. I wonder what they thing of these modern day caps. Here's to hair at x-mas!!
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Susansgarden: My surgery was around Valentine's Day, and my chemo began April 21. Inbetween, I had an oncotype, shopped for a med onc (choosing a different doc than the one originally recommended), and got second opinions on everything. A friend of mine has a great line in his book about cancer: "Cancer is an emergency of the mind" meaning you should take the time to find the right physician and correct treatment for you. Find a team who listens to you and treats you as a whole person, not just treating your disease. They should listen to your questions any time, even if you ask the same thing over and over (you will! I recommend having a note-taker at your appointments. There's alot to digest and no matter how smart, educated or medically literate you are, you won't remember it all). It's overwhelming, and I remember the urgency of the situation made me feel like I had to rush into treatment. Tryy to take a deep breath and remember that you will ultimately be in charge of this treatment, and you need to understand it, trust the advice you are given, and remember you deserve the best people working for you.
lymflynn: congratulations on deciding your treatment. You will do great! The PCC results with TC are excellent. I did not find the caps miserable at all, and the commotion made the experience a positive, uplifting one. Every time you go back with hair on your head, it's a victory and you'll enjoy watching your doctor learn something new from you! PM me your email address and I can send you my list of pointers (dry ice, etc.)
Cheers,
Susan
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Just need more assurance before I order the caps--My Oncologist approved me for trying the caps! She is very doubtful that they will work--I would love to prove her wrong!! My chemo will be Taxotere--caroplatin--herceptin---I have colored treated hair--and am 51----I need good stats to make me try---It is alot of money for me--but I would love to get through this with hair!!!! I will be starting in December--one more surgery before the treatments begin---ps how long does it take for the caps to arrive at your door??
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One more question--I do color my hair to hide the grays--which is mostly all the hair--Is there some kind of color --spray --touch up that can be used to cover the grays??? My last color was in early Ocotober I start chemo in December----
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Hi - My mom started her chemo yesterday, got pretty sick today. Do you think its too late to start the caps? And who should I get in touch with to find out how to rent them? Also, did anyone get sick the first day after the treatments? Dr.'s said that would not happen! HELP 0
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Hi Everyone,
I finally got to see the GMA Cold Cap story and was so happy!!! Like many others, it was great to put some names (at least screen names) with faces. They had 2 pictures of me in the collage of women, the first one was me with my bright pink striped blanket and the other one was 2 away from it to the left (a side close up).
I just had my first coloring since my PFC 7 months ago and I am so glad I happy. I did lose some hair around the bang area and in the back of my head at the hairline but it is not that noticeable since I have been wearing headbands to cover it as it grows in. My hairdresser cannot believe how fast it is growing!! I have been taking the Silica Compound that Frank recommended and using Pure Results Shampoo and Conditioner (bought at BoRics) throughout the whole process and haven't had any problems with dry hair.
Take Care Everyone, Kelli
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Hi sashasz3 - I have to say that the roughest part for me during this whole ordeal (other than waiting for test results) was trying to cover the gray hair following chemo. People doing TCH have great results with the caps but your hair will definitely grow. I had my hair colored about 2 weeks before chemo started (about end of April). Finished chemo mid July and by then my hair was already pretty bad (meaning lots of gray roots). I used Colormark and Oscar Blandi root touch-up. Both of them are meant to literally touch the hair up. They are not meant to color 2 inches of roots. The Colormark is easy to use but starts to kind of fade after a day or two. The Blandi is harder to use, stays on longer but it never really dries so it got on my pillow case and on my fingers if I touched my hair. By the end of September I decided that I'm coloring my hair and whatever happens happens because I just couldn't live with the roots any longer. Thankfully the color came out great (organic salon) and my hair is back to normal.
To me this is a major consideration when deciding on the caps. I don't know what color your hair is but is there a way for you to color it a lighter shade right now and then maybe the gray roots won't look so bad.
Maybe someone has a better product suggestion but I searched and searched and this was the best I could come up with in terms if touch up. Gray hair sucks!!
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Funny, I was just thinking about this!! I apparently am extremely lucky to only have hardly enough gray hairs to count at 43.... at least that gives me ONE less stress if I end up needing to go the chemo route.
I'm wondering how often it happens to women that their hair re-growth comes in with a lot of gray, if you previously never had any?
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