Cold Caps Users Past and Present, to Save Hair
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melibt-Yes, the damage has been done but, if you wear the gelbands for your future chemo treatments it will allow your hair to start to regrow-while still in chemo. Much of the time that's what happens-the hair that has shed is replaced by new hair. Most don't notice it until it's @ 1/2 in length. The gelbands go over the cap. The middle of the band sits at the base of the cap, at the back of the neck. The sides of the headband cover the gap areas at the temples. The band secures at the forehead. The black straps go OVER the band. Be careful when securing because it can cause movement of the cap away from the scalp. You should be able to get the headbands within 2-3 days. They can be shipped from Corona, California where they are manufactured if there are none in stock in Michigan.
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meli, I was happy to see your post...have been wondering how things are going...you're almost there!!! I started using the gel bands for the 2nd round once I learned about them, but we can't seem to get them holding good under the black straps - it's all just too lopsided, so we put it on over...hoping it still helps somewhat but at this point it's not really preventative any more as the thinning has already impacted the over ear area. I just make sure we really press that area down once the cap goes on and then a few times during each cap to keep contact. Rest of the head is looking good although what I wouldn't give for a sudsy warm wash and blow dry...someday
qrex, that's horrible what your nurse said to you...I have definitley become more assertive in my responses and citing studies asking them to tell me about their research. Since it sounds like your doctor is supportive, I think you shoud mention that to her/him...regardless of the situation, she should not talk to you like that. UGH!!!
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Grex - you should report that nurse to the Patient Advocate at your hospital. That behavior is completely unprofessional and cannot be allowed to continue. You may choose to wait until you're finished with your treatment (if that's more comfortable) but please follow through. You'll be doing a good deed for those who come after you.
I have compiled a bibliography of research on cold caps, including effectiveness, concerns about scalp mets, etc. No one - absolutely no one - is concerned about brain mets. It's a non-issue. If you'd like a copy of the bibliography - 70+ peer-reviewed references - just PM me and give me your e-mail address.
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makingway-I am in Colorado. The penguin rep said that the white caps are the same design and have the same amount of gel in them as the blue one. She said when the caps are brand new and haven't been used, they are thinner. I ordered the gel bands and used them throughout, rotating between four bands. Is four enough? we also ordered the extra strap to secure the caps (the yellow one) because I have thick long hair and we used all of the black straps. The consultant helping me is not a pro. She is a friend of a lady I spoke with locally who just finished her treatments and used the caps. I met with her and her friend was there. I asked her to help my husband and cap crew the first couple of go arounds so they could learn from her. I had her and my sister-in-law doing the cap changes, one from the front and one from the back. My husband is in charge of the timing, temps and thawing, pressing out and kneading the caps. The caps haven't been used much in Colorado. But we watched every video and read every blog we could find, including yours, (THANKS!!!). I also spoke with about 5 other women who used the caps around the country and emailed about 10 others. But if you have any other suggestions please, please, please do pass them on!!!! Monday is my 2nd round, washed today and had a good amount of overall shedding, more than anyother washings. But hair still looks completely fine. Am being so carefull with it. I just worry because I work out every day and I sweat. I take it down, out of a loose braid and let it air dry, because it gets wet. And then I loosely clip it up when it is dry so it isn't pulled on gets tangled because it is a little longer than shoulder length. I only wash every 4 days. Now I have to wait til next Thursday to wash after chemo.
Thank you for helping all those women!! and sharing your advice with us who do not have a pro in our area like you!
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hope49: Aaaah...a sudsy warm wash and a blow dry... And my flat-iron. Oh how I miss my flatiron... But I read the January chemo thread and see how the women are mourning for their hair, and I feel so grateful for my messy curly hair. You must be through the worst of round 3 by now. I hope that went without event. It must feel good to know that last one is right around the corner!
301724: I will definitely bring up my experience with the nurse after my next/last round. I don't want to burn any bridges yet. I am very glad to hear that brain metastasis is never mentioned as a concern in the research. I thought I knew that, but it's really nice to hear it again.
I really do appreciate all of your support!
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grex1-What the Penguin rep told you is NOT true, and if you think about it from a logical standpoint it makes no sense at all. I'd be curious what her answer would be if asked,"How is it that they get thicker as they age?" Four headbands are enough if you chill them in a bag rather than in the box. Fold them in hgalf and lay flat in bag. Be sure to rotate them. Place the one that came off your head at the top of bag. The coldest band would be at the bottom of bag.
I feel it's important to keep the scalp clean, especially when you're working out and sweating. You don't want that sitting on your scalp. I recommend shampooing every 3 days. You can also rinse with plain water if your head has sweated a lot from exercise. It's best to wear your hair in a loose ponytail or loosely braided rather than clipping it 'up'. You want the hair hanging down in the same direction that it grows. Good luck on Monday!
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Have to share that I just had my first real PFC haircut! I'm 12+ weeks out and have previously trimmed a 1/2" off the bottom. Went to the salon today and explained everything to the girl who would be cutting my hair. I washed it at home and arrived with wet hair and my wide-toothed comb:-) She listened carefully, trimmed 1/2-1" (things needed evening up) and cut some nice layers into my hair so that it would be tempted to turn under (without blow drying). I am so pleased. I gave her a huge tip:-)
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I'm waaaaay behind on this thread, but just wanted to report in. Last chemo was 11/6. I lost a good amount of my hair, but it was extremely thick to begin with so I still have full coverage. Shed quite a bit pfc. Finally broke down and got my hair cut on 2/23rd. SHedding seemed to be slowing down, but mostly I was just really tired of having it look so scraggly and couldn't imagine it all falling out b/c of a haircut (which never made sense to me anyway but i've been trying to obey the pcc instructions). Have even washed it with warm water this week. It does not seem to be shedding much. I'm going to give it another week and then get it colored at an aveda salon.
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Hello ladies, if anyone is interested in all or some of my 6 “gently used” Elastogel caps, please PM me. I purchased my caps online in November and paid $600 Cdn with tax and shipping. (Will part with them for much less!) Did they work for me? Well, sort of. One thing I did not do correctly – as someone here on the board strongly recommended – was to practice the whole drill ahead of time. The trouble was that trying on the caps out of my home freezer is nothing like putting one on that’s been in dry ice. So, in addition to all the instructions I tried to carefully follow, I would add this: be sure to freeze the caps with their cardboard inserts or something to keep their shape. I foolishly scrunched mine to fit in a small cooler the first go-round and my DH had to pummel them to soften them up enough to wear. The other problem was that my digital thermometer was cheap and unreliable and I didn’t have time to purchase a good one. The upshot was that they would have done the job if I hadn’t messed up. But if you mess up on the first treatment, there’s no going back. I had about 25 to 30% of my hair after my second FEC treatment, but then gave up and didn’t use them for the third. After that, it all came out. Ironically, now that I’m on weekly Taxol, it has started to grow back after just 4 treatments! But others say it might fall out again as the Taxol accumulates. Also, I simply can’t imagine using the caps for 4 or 5 hours every single week. I get queasy thinking about it. Anyway, if anyone is interested, just let me know.
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Schoolmom - I am having a similar experience. I am now 8 1/2 weeks PFC and have 4 radiations left. I had very thick hair before chemo, lost hardly anything during chemo (anywhere) but only after my last chemo (I had 6 rounds of taxotere and carboplatin) shedding increased. My hair is a lot thinner and I have lost many eye lashes, and a lot of my eyebrows. My hair still looks normal, and I suppose I am tougher on how it looks, but it's frustrating that I went through all the chemo and then when it's over, hair loss increases. I don't get it and if anyone has an explanation I'd love to hear it!!
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makingway-thank you, will put the bands in a bag and use that process. Thnaks for the working out hair advice too! I checked in with the penguin rep again and she swears there is no difference but color and the blue caps were also flatter when they were brand new. She said there are many women using the white caps right now and they are working fine.
Any white cap users out there? Are you having any problems withe white caps? Still have your hair? My 2nd chemo is tomorrow and now worried my caps might not be working??11
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hi Grex- I used the white caps and gel bands and still have good coverage with my straight, shoulder-blade length hair - no headbands or anything needed. I bought a good stock of scarves, bands, etc but thankfully have not needed them. I am now almost two weeks PFC and shedding slowed a lot. My hair seems thinner and lanky to me, but no bald spots and no one knows it has changed but me. For areas of the part that got a little wider i use the toppik fibers in blonde and it works really well. i wish i could upload a picture to reassure you that the white caps do work but i cant figure out this system, it wont take an avatar from me even after advice from the webmasters.
One important thing is to remember to knead the caps to your scalp really often while you are going through the process. If there are ill-fitting areas this will keep the gel in contact with the hair follicles. i think it helped with preventing neuropathy in my hands too, even more than the bags of peas that i had- the caps just seem colder!
Good luck and yes the white caps work.0 -
sciencegal-that is awesome and reassuring! Thank you for the additional tips. I feel much better and will sleep better tonight, if sleep is a possibility with the steriods! I just wrote your kneading advice done on my list for my cold cap team to make sure they do. Congrats on being done with Chemo!!!!
Does anyone use a little conditioner on the ends of their hair and a leave in spray conditioner. My hair is so dry, it is tangling because I forgot to use any conditoner last wash, and that is causing knots that shead more hair out it seems?
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qrex1 - I used conditioner every time I washed to prevent tangles because I had a few bad ones around Tx 2 when I had heavy shedding. They took forever to get out and took a lot of hair with them. I tried to keep the conditioner a bit of a distance away from my scalp, but I am sure I was not always successful as rinsing would send it everywhere. However, it definitely made caring for my long hair easier.
One of the problems I had with tangles was that all of the wide toothed combs I bought were not any good. None could slip in between the hairs of a knot, even a loose one, to help me untangle it. I lost a lot of hair due to shed hairs grabbing onto other hairs. I had to actually cut one tangle out, which was not fun. I switched to using what I call a wet-hair brush. It's a commonly made plastic brush that has individual plastic bristles spaced quite widely apart and has vents in its body. I found I could use just a few of the bristles on the very end to delicately work tangles apart, then gently use it as a comb to comb my wet hair from the bottom upwards.
As for kneading, my wonderful and very experienced helper always kneaded the caps before putting them on me so that they would be ready to conform to my head's shape. Otherwise they would have been too stiff to be pushed into contact with my scalp. It looked exhausting. I would poke around on them with my fingers once they were on to be sure they were touching everywhere. Sometimes the seam area between sections felt like they were not touching, but we pushed them down as much as possible and the caps worked just fine.
sciencegal - Congratulations on finishing treatment! I hope you are begining to feel better, although it does take quite a while to regain a normal feeling. My hair seemed thinner and felt lanky after chemo ended also, even though I was gently washing it every three days. I waited until about a month PFC then used a shampoo that cleans away residue buildup on scalp and hair (Nioxin for chemically treated and thinning hair) and it made an enormous difference in how it looked. My scalp felt much cleaner too. I was surprised by how much hair I actually had once it was no longer somewhat dirty and stuck together - that lankiness. I used the same gentle way of shampooing and cool water, the difference was in the shampoo.
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7 weeks pfc. washed my hair and shed a ton today. trimmed about 1 inch off the ends to get rid of straggly part. New hair definitely growing in and about 1 1/2 to 2 inches. I can tell by the color. Lots of flaky scalp and dandruff. So ready to be a few months down the road and have a full head of hair rather than clumps of hair that I reposition to hide the thin spots. 9 more radiation treatments to go. I am sure that hasnot helped my body toget back to normal.
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grex1-You can use conditioner on your hair-just not on the scalp. Did the Penguin rep. answer how it is that the caps get bigger as they age?? I'm sure the white caps will work, I just believe that if they are any smaller or contain less gel they won't be as 'good' as the blue caps. Even the blue caps have design flaws-there are gaps at the temple areas, and most who don't use the headbands in conjunction with the caps, lose hair around the ears and nape of neck because of it.
happyfollicles-There are many factors that can contribute to PFC hairloss. How many days after your final chemo did you notice the shedding? If it was less than 2 weeks, the shedding is a result of the 5th chemo treatment. You wont see the results of the last chemo until 2-3 weeks afterward. Radiation can cause hair thinning. Nutrition and hormones effect the hair as well. I believe the havoc the chemo wreaks on the hormone levels is a great factor. And, while Herceptin doesn't cause hair 'loss', it can cause thinning of the hair.
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Hi ladies - I am now 8 weeks pfc and continue to have shedding. I have also just lost my brows and most of my lashes. I have been thinning for some time and then they just fell out. The brows look really strange, almost as if i've shaved them. They have stubble coming in already and i am now filling in with brow pencil.
This is a new pic, which shows my best angle. i have most of my hair in the front. it doesn't show the bald patches on sides and back.
I have just finished accelerated rads (15 days) and have been using nioxin products so I'm hoping this hair grows in real soon.
Good luck to the new ladies!0 -
Loafer, that was my exact experience. I had little to no shedding during chemo, then a few weeks PFC started shedding and didn't stop for five months. Also lost my brows and eyelashes several weeks PFC -- my eyelashes still fall out every so often!
I finished Herceptin in November and my hair started growing faster. I had only three to four inches of growth in the year PFC.
Try not to sweat any of it -- it all works out in time. When you get nervous, remember that the Cold Caps don't just save your hair -- they PROTECT your hair follicles from the damage Taxotere does. That alone is worth the price of entry IMO -- although I didn't learn that Taxotere can cause permanent hair loss until after I'd complete treatment.0 -
hortense-I wet my hair after my run because it was so wet anyway and used some conditioner on it and rinsed. Thanks for the tip on the wet-hair brush, I used to use one of those to blow it dry back in the day! So I tried that to help get all the tangles out that had knotted together with other hairs. I lost a big handful, my 5 in the last few days! But the brush technique saved a lot of the other hairs that were knotted together. Thanks for the kneading advice too.
makingway-the rep said the blue caps are the old caps now and they were just as thin as the white ones are now. I don't know if all the kneading and handling of the caps could move the gel around in the caps after they have been folded so tighly, like mine were when shipped to me, after many women have used them???? She said the they are working for the women who have been using them. Unless someone who reads this board tells us differently? Anyone????
I hope they work! Here I go for round 2 tomorrow!
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Does anyone know how the straps work on the new caps? We are supposed to have headbands and didn't receive them?
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geewhiz-I am using the white caps, are theose the ones you are referring to as new? Are you asking abou the straps on the caps themselves or the straps that wrap around the caps? If you watch Frank's video on the penguin cap site, I believe the white caps work exactly like the the older blue caps. Let me know if you not more espcific infor-happy to help.
makingway-the consultant I am using to help me with the caps says she actually has one of the old blue caps and she said the material on the blue cap is different. It is a thicker material compared to the white material, which is thinner.
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NEED COMMENTS ............... MY MO IS SUGGESTING ABRAXANE 3 OUT OF 4 WEEKS, AND CYTOXAN EVERY 3 WEEKS. (I AM EARLY STAGE BREAST CANCER). THIS WILL REDUCE ALOT OF SIDE EFFECTS FROM THE TAXANE AND BE EASIER ON MY POOR BODY. THIS WOULD REQUIRE AT LEAST 18 INFUSIONS. BUT 12 OF THEM WOULD BE VERY SHORT WHEN I GET THE ABRAXINE ALONE. NO NEED FOR STERIODS WITH ABRAXANE . THINK I COULD KEEP LOTS OF HAIR WITH COLD CAPS USED 18 TIMES?
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Forest, I had 12 weekly infusions of taxol, and the cold caps worked perfectly. I believe that abraxane is the same as taxol, but that the drug is mixed with something different that doesn't cause allergic reactions like taxol sometimes does. Therefore I think you would do very well with cold caps and abraxane. As for cytoxan I did not get that one, so I can't say. Would you get cytoxan alone or in combination with abraxane every third week? 18 separate treatment days does seem excessive! Remember you will be doing cold caps for a minimum of about 6 hours each time, assuming your actual chemo infusion is 1 hour. As I said, I did it 12 times, with wonderful friends to help me, but I was sure ready to be done after 12!
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hi
Starting cold cap therapy on March 12th..feel really organized but a little overwhelmed with all the infomation. I have a great "team" and am throwing a pizza party the night before to go over the video, practice getting the caps on right and have a seasoned cold cap person coming over to entertain us....so here's hoping! good luck to you indi
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Indi, good luck to you! Practice is good, and having a seasoned cold cap person for help and advice is even better. let us know how it goes.
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Hey y'all! I'm now exactly 1/2 way done with treatments. 3 down and 3 to go with TC. The cold caps are working wonderfully!! Thinning but not enough for anyone else to notice, just me. I do so miss my brush, products, and my flat iron..... but hey, I have hair.... so it's all GOOD!!!
Quick question.... I know protocol is to wait 3-6 months after chemo to do any coloring, and I haven't. I've been folowing protocol 100%. However, in a few weeks i need to travel back home and I'd love to cover up a the greys that are right in the front near my bangs. Is there any gentle temporary color (organic, without paraphins, alcohols, etc etc etc) that can be used to just do a temp cover up? Even a brush on? Spray on? Maybe? LOL! Just thought I'd check. I've been reading through these posts for an answer but haven't come across anything yet. Sorry for what I'm sure is a question that has been covered a bazillion times.
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Amrdbit - Do be careful about coloring while actively in chemo. I had disregarded the warning about not coloring and lightened my hair six days before starting chemo and found out the hard way that residual chemo circulating in my blood did, in fact, damage my lightened hair at root level. As a result I ended up with a bump at the spot where natural hair met lightened hair. Several months later a lot of those "bumps" ended up breaking, leaving me with a nice thick and healthy four inch growth of natural colored hair and whispy looking longer blonde hair.
I regret not following Pengin's warning. Clearly it is important to have untreated hair at the root level during chemo as it is stronger and more able to resist a residual chemo hit.
I would say that if you really must color, just be sure not to take the color down to the root level. You might be able to get away with having a colorist or friend work with you to put in a few streaks using foils and starting up a quarter of an inch from your scalp. That might work. Better to have 1/4" roots than to eventually have your hair break off as mine did.
Good luck!
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Hi Amrdbit! Glad to hear its going well. I haven't done this myself but I've read all the pages on this thread and see a lot of talk about something called Colormark, which sounds like it's a marker type tool you can use to very temporarily cover the gray...maybe someone can weigh on on this??? I also bought some of the Joan Rivers powder in case I ended up with thin areas but haven't had to use it...wondering if something like that would work for you since you only want to do it on a small area. Hope this helps!
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Good luck indi! What treatment regimen are you on? Sounds like you have all your plans in place...it is a lot of work, but so worth it. You will feel very cold, so best to dress in layers and keep warm with a lap sized electric blanket. I'd also recommend taking some Tylenol before you start. I also take a Xanax because I was afraid about the first treatment, and have continued to take one each time because I think it takes the edge off the coldness for me, too. It's so great you have a cap veteran helping you...that helped me a lot. I hope someday I can pay it forward. I look forward to hearing your updates!
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amrdbit, I'm one who used Colormark to help with my roots. My colored hair is my (formerly) natural dark brown, and my roots are about 90% white, so it was pretty obvious. The Colormark definitely helps. It only works until the next time you wash or rinse your hair. There are two kinds of Colormark markers - one is sort of like a mascara applicator, and the other is more like a thick magic marker. The magic marker one is the more expensive one. It is better at applying the color, but it also flattens down your hair more than the mascara applicator-ish one.
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