Cold Caps Users Past and Present, to Save Hair
Comments
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I used Colormark. It is temporary and washes out when you wash. I used it regularly through chemo. My roots were out of control!
I colored my hair after chemo with Clairol's Beautiful Collection. I got it at Sally's. It comes out in about 6-8 washes but since I only washed 1-2 times a week it was fine for me. It did not totally cover gray, but it toned it down a lot and I felt so much better after I did it. I think I did it about 4 or 5 weeks after chemo.
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Awesome guys!!! Now that you mentioned it, I did read a couple months ago about Colormark. I only have a small area to color but it's right in the front. Go figure, right? My hair is naturally dark brown but i have this little patch of grey. Sigh. Ha ha ha! I think it's b/c of the trauma my body went through the first time around with chemo 18 years ago. Big sigh. Cold caps are awesome!! And a little patch of grey sure beats being bald..... which is something I can say for sure, since I've been there, done that too.
Where did you get the Colormark items? Is it an order on line? Or at Sally's? Any info would be great! Thanks ladies!! I sure appreciate you!
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You can get Colormark at Ulta, if you have one in your area. If not, you can pretty much get anything through Amazon.
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indi, I took an Alieve before each treatment. My facility had warm blankets so I never needed an electric one. I made a list that I took each time. I also brought a notebook to write down cap change times etc.
The caps are terribly cold for the first few minutes, but then your scalp is frozen and it is not bad at all. Make sure your helpers wipe out the inside of the cap before placing on your head. It will seem very chaotic the first few times, but then you will all be old pros!
Good luck!
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Dose anyone know the head of Penguin to complain to. They are continuing to charge me. Very disappointed and now I have to chase them.
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Shasha- You're not the only one. So many of the women I've helped have had issues with the company-shipping, billing, poor customer service. Try Geralyn at 810-359-5257. This is where caps are shipped from and sent back to. You might ask her for the number to the accounting/billing dept. I believe the ladies there are Roz and Jessie. Good luck. I'm sure you'll get you're money back, it just might take a while.
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I spoke to her and was not thrilled. She finally sent me an email stating that once the paperwork was done I would be refunded. She was my rep. My experience was terrible. She doesn't always call back. ect. I really didn't need this. I'll be ok, just very angry.
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Shasha-I feel ya...I've been dealing with this company for 4 years and it is extremely frustrating. I've encountered many problems within company. Geralyn is the sole operator responsible for shipping and receiving all Penguin caps in the USA, in addition to cleaning the caps, and talking with new and current clients using the caps. That's an awful lot for one person to be responsible. Did she give you a timeframe for how long it takes for 'the paperwork' to be done? I believe it takes @ 2 weeks before a refund is credited to your account.
FYI to New Penguin cap users-It is very worrisome waiting for the cap shipment to 'arrive'. Many times because of shipping problems women have had to delay their chemo start date. When ordering the caps plan to have them arrive at least one week prior to actually needing them for your chemotherapy treatment. This will eliminate unnecessary stress and allow time to handle any shipping problems should they arise. It's always wise to check the caps when received. On a few occassions I have found that damaged caps had been shipped-dirty caps as well. Be sure to wipe the plastic side down with a wet cloth.
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Hi there. I am about to begin chemo in the next few weeks. I have been reading a lot about cold caps, which seem to have a good success rate in the UK and in the U.S. There doesn't seem to be as much info in Canada on this, although I have been in touch with Cold Comfort Canada and Penguin Cold Caps in the U.S. Has anyone used these in Toronto or Canada? My oncology team is very skeptical and doesn't want me to use them.
Any help would be very much appreciated!!!!
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Day 11 - full head of hair (albeit with grey roots). I will try Colormark! Is there one in LA? Keep using the caps, and will let you know how chemo round 2 goes. My caps are stored at UCLA freezer.
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curly123, Many of us on this thread have met with resistance from doctors and nurses. Some have switched oncologists, others have presented information to their oncs showing the caps are indeed safe. A women on this thread (301724) was asked by her onc team to create a presentation on the efficacy and safety of using the caps because they were so impressed with her good results. You can PM her and she will email you her presentation. Below is a copy of her post from a few pages back.
301724 wrote:
To all who would like a copy of my slides, please PM me with your e-mail address.
A couple of caveats:
* I am taking my name and credentials off the slides so you may use them.
* I am removing the photos I have of other women. They have all given me permission to use their photos but I do not believe that permission extends beyond my use for educational purposes.
* I am removing my own photos - you should substitute some of yours.
* Importantly - the language in these slides includes 'medical jargon.' It was appropriate for my talk both because I was speaking to professionals and because I am a health care professional researcher myself. If you are one, too, then this would be appropriate for you. If you are not, use language that makes sense for you. For example, instead of titling the talk, "Scalp Hypothermia: An Option for Preventing Chemotherapy-related Alopecia in Breast Cancer Treatment", you might title your talk, "Cold Caps: An Option for Preventing Chemotherapy-related Hair Loss in Breast Cancer Treatment." And consider your audience. I wouldn't use 'medical jargon' if I was talking to a group of women facing chemo who are considering the use of cold caps or to another lay group.
* BTW - there are presentation notes and suggestions in the 'notes' section.
I think that's pretty much it. I hope for all of us to have opportunities to share our success stories in a way that brings hope and options to those who (unfortunately) come after us and that convinces health care professionals and institutions that we have a right to those options.
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Laura, thank you so much. I will email her right now!
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I used colormark thick marker after chemo finished. I am 9 weeks pfc. I purchased it at Sallys for about $34 but just use it at the top along my face and it has worked fine. Still on the original bottle. Hopefully will do the vegetable dye in the next few weeks...any suggestions? My hair is growing in dark at the nape and back but salt and pepper at the sides. I have brown hair but usually lighten it to an ash brown normally. I heard you can only buy the color at whole foods.
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School mom - I've used Clairol Beautiful Collection hair color twice now, both times applied by my regular color person at the salon. I have a LOT of gray to color, with normally (formerly) dark brown hair. The color has no ammonia and no peroxide, so it is semi-permanent and washes out. The first time it didn't cover my two inch + roots very well, but was better than nothing. I had it colored again after 3-1/2 weeks and it covered MUCH better the second time. BUT when I sweat at the gym I drip brown sweat even after 4 washes! Very annoying.
My hair grew normally all during chemo/cold caps, but since finishing on December 7 my hair is growing much slower. I think it's the Herceptin that's causing the slow growth - anyone else experiencing that? it's OK with me - I won't have to have my hair cut and colored as often as normal!0 -
Hi there. Now I am really confused. Anyone use cool caps with FEC-D as their chemo regimen? I was reading some promising stats, then a doctor in Quebec indicated she had a 20% success rate with FEC-D - much lower success than I had been reading about. Anyone have info on this?
F - fluorouracel (adrucil)
E - Epirubicin (pharmorubicin0
C - cyclophosphamide (cyotaxan, procytox)
D - docetaxel (taxotere)
Would appreciate any info you might have.
thanks!
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Curly, the person who started this thread back in 2009, and whose initial post is at the top of every page, had that chemo combination. If you go back to the first page of this thread you can probably find more posts from Can-D about her experience. Hopefully there are others with more recent experience too. Of course everyone reacts differently to chemo so no guarantees with any chemo combination - but at least with cold caps you're giving yourself a chance of keeping your hair!
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Thank you Patin.
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curly, You might try PM-ing Can-D. She may have her profile set up so she receives an email when someone PMs her.
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The results of 58 trials of cold caps are reported in the following article:
Breed W, van den Hurk C, Peerbooms M. Presentation, impact and prevention of chemotherapy-induced hair loss. Expert Review of Dermatology 2011;6:109-25.
Info on the efficacy of the various drug regimens is included. While checking with individual users is helpful, each of us only constitutes one experience. The pooled studies give the best information on how various drugs affect a population of women.
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Hello My Lovely Ladies. Thank you for all the information you've shared with newbies like myself. I started chemo a little over a week ago and am using the cold caps. I've learned so much from this forum. I'm on 4 DD AC's every other week and then 4 DD T's every other week. My second chemo is Friday. I've done so much research and know that I stand a less than 50% shot of keeping my under-arm length, relatively thick hair on the AC, but hey, what have I got to lose? Rest assured, I tried talking my wonderful, cold-cap supportive doc into TC, but I'm a bit younger than most and my mom is in her second battle with cancer - this time stage IV metastatic, so he wanted to give me the big guns. The waiting to see if my hair is going to fall out is killing me. No shedding so far on day 9. None. No side effects from the chemo. None. My tumor has already shrunk. I don't need radiation, my lymph nodes are negative and my genetic testing was negative. So far everything has gone as well as it can all things considered. Now I just want to know if my darn hair is going to stick around! I don't care about the gray roots because it means I still have hair!!! I think I've read every single page of this forum, but just to refresh my memory so I don't have to reread all 284 pages, when did you start and stop shedding? Are there anymore AC girls out there for moral support? Are y'all sick of people asking "why don't you just shave it and not worry about it?"
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TXSockMonkey - You sound like such a nice person. I wish you all the best!
Re: shedding - my center in NYC which has had well over 40 women use cold caps, told me that shedding will start between the 18th and 24th day after the first treatment. So nine days is much too early to see any.
Looking back, mine started about the 21st day (my second treatment), very slowly at first, so slowly that I hardly noticed it. It picked up speed after a few days and I began to find hairs sliding off all day long which made me nervous. Eventually they were constantly all over my clothes, on the floor, wrapped around the spindles of my staircase and decorating the couch where I was spending much of my time reading and watching TV. I was very uneasy about it until I finally accepted that I hadn't lost all of my hair, as women not using cold caps had by that point - their's is gone by the two week mark, so I probably would keep mine minus shedding. Which is, in fact, what happened.
A puffy handful of hair came out during several shampoos around the 3 - 4 week point, which was the same time I had the heaviest shedding. It left me with some ginormous loose tangles that took forever to gently work out while wet. After the 5-6 week point the shedding slowed down to a steadier rate which continued throughout treatment with a short uptick after each chemo session. Shedding slowed considerably for a few weeks after chemo ended and I hoped it might be ending, then to my annoyance and disappointment it picked up again and lasted 16 long weeks before stopping literally overnight. I don't think I shed another hair for two months.
I hadn't understood what shedding meant. You really do "shed" just like a cat or dog does, uniformly from all over so that you retain full coverage. It does not come out in handfuls or in clumps. Each hair seems to drop off singly, although it may take a friend with it as hairs tend to trail down in a chain, one hanging on to another. Nor does shedding leave bald patches the way those who lose all of their hair seem to experience before they have to shave all their hair. The overall volume simply thins. I think I lost about 30 - 35% of my volume, but honestly it is hard to tell. I kept complete coverage and my hair certainly grew at a healthy rate all through chemo judging by my long natural colored roots - which turned darker and also went grey in places. I may have lost less than that as I experienced a lot of breakage a few months after chemo because I had foolishly lightened my roots just before starting chemo which resulted in visible damage at the point between the bleached hair and the natural hair. Many of the bleached hairs broke off at that point thinning out my longer hair.
I can say that about two months after chemo ended I finally noticed a thick new growth of new hair starting. Now, seven months PFC, it is about three inches long and rapidly filling in my lost volume. Most people have no idea I just went through cancer therapy. It is amazing.
I met a young mom at my center who just finished T/C and was coming back for her H treatments and she had luxurious, very long wavy hair. Not a soul on earth would ever have known she had just finished chemo. She said she had lost a lot during shedding, but honestly, she didn't look it.
Just keep remembering that all of us have over 100,000 hairs on our heads.
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SockMonkey, sounds like you have a lot of positive things going for you and that you have a great attitutde - that will be a big factor in your experience! I am doing my final (HOORAY) TC treatment tomorrow and still have most of my hair. My initial shedding started about 17 days in and then I had a heavy shedding between treatment 2-3 and then very little this last round. Although the AC is a harder treatment I have read every page on this thread and there have been lots of ladies with that regimen that had good success so don't get discouraged if the shedding does come...some people give up that I think could still have good results becuase it's easy to start thinking it's not working. But as Hortense said, it's an even shedding/thinning that happens vs tons of hair coming out in clumps. Everyone goes through the big shed and gets panicked...you take a deep breath and keep doing the caps. I think Frank the inventor says that if you make it to day 21 without losing most of your hair you will succeed. Keep posting here and we will share our experiences and tips to help you make the best of things. I hope your treatment continues to go well!
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SockMonkey...I wanted to add that when I say I have most of my hair, I mean that it has thinned but I guess in an amount that is only noticable to me. Yesterday I saw my MO and nurse and both are still amazed at the results and that I 'had not lost any hair at all'...LOL, I'm fine with them thinking that, so I guess keep in mind that what it feels like vs what it looks like are often 2 different things.
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Thanks for the reply ladies. I've even had one AC woman graciously send me an email with the other AC girls names. So you're saying if I still have hair by Good Friday, it's a good Friday! I keep telling myself that several years ago I spent hundreds of dollars on 8 laser hair removal treatments, and after all 8 treatments not working they told me I simply wasn't a good candidate because I have really deep roots. Lol. Hard to believe I spent all that money and now I can get the results with chemo.
Did any of you keep working? I'm a single gal and have decided to attempt to keep working through chemo. I work from home (I'm a manufacturer's rep) so I can make my own schedule for appointments and work from bed or the sofa if I need to. My boss is very supportive and has offered any help he can.
My oncologist told me when I was diagnosed that taking hair supplements to prevent shedding were fine, so I've been taking them for about a month. They have lots of vegetal silica, biotin, B vitamins, etc., and I definitely noticed results before I started the chemo. He also gave me some Latisse to try and keep my lashes and brows - which are super thick and long already. Fingers crossed - I'll miss them if they go away.
I read that you can use scrunchies for long hair. Do they even make scrunchies anymore? Lol. So I ordered these great Emi-Jay hair ties instead. They are very gentle and don't leave any impressions in your hair after you take them out. I've also been experimenting with Goody Spin-Pins so I can have some acceptable hair style for public. You gently put your hair in a bun shape with no elastic and take these cork-screw pins and screw them in. It seems gentle on my hair and keeps it surprisingly secure - even when I run.
Less than 4 hours after I typed that I had no side-effects I started getting a cold sore. Lovely. I've only had them when I had mono and when I had pneumonia. Anyway, funny story: My doctor called me in a scrip to take care of it and I went into the pharmacy to pick it up. There were about 8 people behind me in line. The pharmacy tech asks me in an overly loud voice if I've ever used the Valtrex before and if I had any questions for the pharmacist. I turned beet red and wanted to shout "This isn't for genital herpes y'all!" to the people behind me. I refrained. And no. No one in line asked me for a date.
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TXSockMonkey, you are a riot! And your oncologist sounds like a keeper. I did work throughout chemo, but I had an "easier" chemo than you - weekly taxol. I didn't work on infusion days, of course, since I was doing cold caps for 7 hours, but worked the other days (with some occasional time off when I had to stay close to the bathroom at home). I think I would have been very bored if I had stayed home, and luckily I felt pretty good throughout treatment. Keep us posted!
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TXSockMonkey-I am working through chemo, absolutely!...and being a mom and wife and running my kids to after school activities, with lots of help from my wonderful husband. But I still work out every day, except chemo day, and that really helps with my energy, I think. And eating five to six little meals with lots of iron/protein, vitamin C, veggies and fruit, so I don't overwhelm my stomach and keep my energy at a steady state.
But it is keeping my hair that makes me WANT to leave the house and go out in public. I have had 2 out of my 4 TC treatments done and no one, unless I have told them, have any idea I am going through chemo. My doctors are literaly fastinated. I had two consults this week and the cold caps are in my patient file and when one of them came in to talk to me she wanted to know all about the caps and the process. She couldn't believe it was my hair, because, of course, I should be completely bald. At one point she actually grabbed my head (gently) and started rooting around my scalp! She apologized but she said it looks so great. That made me feel like all the work to do these caps is so worth it and I smiled very big on the way out, as the nurses and staff just couldn't stop stairing at me! Lets hope it doesn't look too much worst to them after #4!
I say, why should it be any other way! Let us have our dignity and our normal lives while we endure this time. This feels like such an underground operation here in America and it shouldn't be, I just hope the FDA approval moves quicker and they can start advertising, distrituting brochures to oncology offices and the Cancer Organizations (and providing the freezers to all medium and large cancer centers!!!) and being included at the big American Cancer Symposiums. This company needs to invest in American women with cancer and get a professional sales force, maybe perfect the design a little better to overcome the temple/over the ear hair loose issue and some professional literature with the data in them to dispell the scalp met issue immediately and give clear direction on how to use the caps. They need a hotline with a team of people to handle customer questions for specific issues. My rep has been great, but really? that is the support for this company for the entire United States. I have felt through this whole process that I have been trying to crack some secrete code or something and still have many questions. If we didn't have this formum in which to educate each other and learn from the women who did this before us, the caps would not have been an option for me, I never would have believed they work.
Thank you to the pioneering women that came before me and have posted on their tips and direction of how to use the dry ise to us. The pictures and videos of women who have used these have also been so incrediblly helpful. The brave women who agreed to media and television stories to help get the word out. Thank you to the women with the great blogs you relieved so much of yourselves in some part for our benefit and you helped give me so much curage! I am so thankful that you have posted your successes and made me feel like I could do this and I am! You are all so AWESOME!
I just wish the company would take this more seriously in America, I realize not that not having the FDA approval prohibits some of their promotions and claims, but for the amount of money I am spending on these caps, plus the $100 in dry ice each use, (not to mention the cost of supplements and special hair and deorderant products) I sure hope they ear mark some of that money to advertising and promoting this product and literature with specific direction on helping women who use the product in the future. There is finally a clinical trail undergoing at Baylor, I think!
...If I didn't LOVE these caps and their results soooooo much I wouldn't be so direct, but it is time to inform all women who have breast cancer that keeping your hair is actually a viable option. They deserve to know and know that this is not quakery as they might be lead to believe by their doctors and nurses.
Sorry, for the rant ladies! Have a wonderful night and thank you all for your contributions to this forum!!!!!!!
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Do cold caps work better with some chemo regimens than others?
If you have fine/thin hair is it worth it to try the cold caps?0 -
Speedy, I had the same regime as you, TCH. The caps work especially well on that regime. I have thick hair, but many fine\thin haired women have had good results. If you are starting on the 21st, you will want to get them ordered ASAP. Penguin Cold Caps are the best caps. www.msc-worldwide.com .
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I would like to report that Memorial Sloan Kettering Hospital in New York City is now allowing the use of Cold Caps.
I was so pleased to hear that as I actually had to leave MSK for another hospital last spring in order to be able to use them. When I went back to MSK yesterday for a check up with my surgeon, she told me the good news. (She also told me that I was looking good. No signs of anything that shouldn't be there, so it was a great visit all around.)
In November, she had told me that she had spoken to my oncologist, who is the Medical Director of New York Hospital's Weill Cornell Breast Center, during the summer to ask her about cold caps. I suspect, although she never mentioned it, that I may not have been the only woman to have defected hospitals to use them. My oncologist shared the results of a cold cap trial she has been running at her center with her. My surgeon, in turn, brought that material to her higher ups at MSK to look at and by last fall MSK was considering whether to allow cold caps. Now it is official. It is allowing them and I am very happy about it. I have no idea whether women being treated at MSK will be told about them. I rather think that will not be happening yet, but at least those who are fortunate enough to find out about Cold Caps on their own will be allowed to use them.
I also ran into a woman who does segments for various TV shows and told her she should consider doing one on cold caps. She had never heard about them and seemed fascinated. I gave her several websites to go to to learn about them and also my oncologist's name. I hope she will follow up the leads and eventually create something as so many women would like to have the option of keeping their hair as they undergo chemotherapy, rather than having to go bald.
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Good for you, Hortense! Getting the word out is great! I saw a posting on another thread about a documentary called Monday at Racine's about a wonderful salon that offers free services to cancer patients. I wrote to the producer of the documentary to ask whether or not she was aware of cold caps.
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