Cold Caps Users Past and Present, to Save Hair
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ykh- my shedding slowed about 3-4 in on taxol hardly any shedding now
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Hi All, I haven't been back for awhile, busy with surgery(and pain) and now radiation. I am almost 15 weeks post chemo. I finally found a friend who could see well enough to see I had hair growing back in 3/4 inch. I lost 90% of my hair, but with 10% hair, I still look normal if you didn't know I had very thick hair before.
Anyway the problem with seeing my hair growing back it that is it all white. I had 90% brown hair and 10% white(gray) before chemo. My MO said it would come back in white and he was right. Is there anyone else who has all their hair growing in white, when it was mostly brown before?
I still can't see the white hair myself and I can't quite picture it with 95% white and 5% brown. My hair is still shoulder length.
I still lose hair everyday and only wash it once a week.
One more question. I would like to start conditioning it. I bought the Acure conditioner, but I just could not get that stuff out of my hair. Anyone have a better solution for conditioner which I don't have to keep rinsing out for 15 minutes?
I was on double dose AC and double dose Taxol.
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hello today i had my first shed day 17 after the first chemo. I guess it is the start of the sheddings. Next Wednesday is my second one. I also use the panty liners in the ears and forehead, and the net in the hair. My instructions are cold capping for 9 hours everytime so it is a long day but i think it is going to be worth it if i keep some of my hair. Now i am dealing with a seroma that went after one month of the lumpectomy and ii came again it is very uncomfortable and painful and it is red so i am taking antibiotics in case it is infected. So i hadn't have too much side effects from the first chemo only a little bit tired, and the seroma.i keep working and doing my life as normal. As nobody knows that i have this. That makes me feel better. So keep going we can do it.
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Hanging In- my hair used to be light brown, but only because I highlighted it. I have a lot of gray now and there's nothing I can do about it for a while. It's just so thin and not strong. So I will wait.
Southrngrl - I used moleskin to protect my forehead, edges of ear and back of neck. I would just cut pieces to fit. I found that each round of chemo, the side effects were the same and lasted about the same length of time. The last round, it took a bit longer to recover. I drank hot tea with lemon to relieve any constipation.
KShorten - thanks for the info, I will order more viviscal.
DJ2017CA- so glad you're making good progress
Pamela - Yes, the diet has helped, I think. My legs feel less swollen and more flexible. I stretch them several times a day, but prob its a combination of time, diet, and stretching. My arm is better, too. Still have lots of radiation left, though. Sorry about the lashes. I have started to see some growth there. It's helpful to know that it is common to lose them again.
Hopfull2- so glad you're continuing to improve. It gives me hope!
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Southerngrl I agree with GoKale, moleskin is good. But if your ears are too sensitive after the frostbite, you could use the moleskin, and attach it to the inside of your ears (probably not frostbite there, keep the paper on over the ears and down the ears until you find skin which is not frostbit, and attach the sticky stuff there. If your forehead got frostbit, you could use a feminine napkin and stick it or just place it under the cold cap. I used a hair net also.
I got frostbit the first time but didn't peel. Good luck, after that first frostbite, I always made sure I was super covered.
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Here's what has worked for me in case it can help others, but I understand all treatments are different and can have different results.
Caps and Pantyliners: I also use the pantyliners for my ears and forehead and have not had frostbite issues. You can put moleskin on top of the liners so it looks like skin color, but once you have the cap on -- who really cares about looks! I also cap for a full hour before treatment, during and 4 hours afterwards = 8 to 9 hours.
Washing hair: One thing my local Penguin cap representative impressed was to follow all the rules and not to brush my hair, to not cut hair ever and to use cool water when washing. In the shower, I fill up a large pouring cup with pretty cold water, then lower the shower head to my neck and put hot water, so while my head is getting cold water my body counteracts it by feeling hot. I repeat the large cup a few times to wash and rinse. I air dry my hair, outside when warm. I wash twice a week and exactly on third day after each chemo (which equals treatment day 4) and 3 days before chemo. I get treatment on 21-day cycles.
Brushing hair: Cricket Silkomb Seamless Teeth, Pro 30 Power found on Amazon. I found this great silk comb at my kids' hairdresser and it makes it super easy to comb through hair after washing and for daily brush.
Shampoo: Original Sprout 100% vegan shampoo and Original Sprout leave-in conditioner found on Amazon. For the conditioner, I use a small spray bottle and fill it with water and add 10-15 sprays of the conditioner so it's very diluted. I spray 10-15 times over my hair (not the scalp) after absorbing water from my hair with paper towels.
Sun Exposure: I always wear a light weight breathable hat - never go in the sun without cover. I also avoid letting my head getting overheated which has been a been tricky this week with the 100+ weather!
Lashes & Brows: I use Brian Joseph's Lash and Brow Conditioning gel. I couldn't easily find it locally or online so I order by phone from Essential Woman Boutique in Spokane, WA (503-363-0100) I have a couple of few eyebrows, but no lashes so far.
Sleep: I use a satin/silk pillow.
Stay strong everyone!
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I'm two weeks out from AC-T chemo (4 weeks AC; 4 weeks T) and researching cold caps. A few questions for all you wonderfully knowledgeable ladies:
1) Has anyone had success with a CC other than Penguin on AC? I know they have the strongest track record but I'd love to go with a less expensive option such as Arctic or Wishcap.
2) I would really like to cut my hair short before chemo but I'm hearing that can negatively impact cold capping results. Thoughts?
3) Has anyone done cold cap changes themselves during the 4 hours post-chemo? I will have someone with me at treatments but it may be a lot to coordinate for afterward. Is there any reason I can't manage it myself with two free hands?
Thank you!
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MJPow tell me about using gel during chemo. Do you mean no-chip or actual gel nails? Is the acetone hard on the nails when it comes time to remove them? I was thinking I should stop doing no-chips while doing chemo. Am I wrong?
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Hi all,
I just checked in and saw someone was mentioning my ear frostbite. I did get a large frostbite blister on top of my left ear with elastogel. It has healed completely. Elastogel recommends wetting hair and wearing a shower cap. I think my ear got wet thru the feminine pad we had taped on my ears and forehead. After this happened I made some baby sock ear covers and was more careful about not getting the skin wet.
My cappers also were more careful to get the caps pliable before putting them on me. A hard cap will cause gaps and ridges (bad) you can get frostbite on your scalp where the ridges touch. Gaps cause hair loss. If it's is really intensely more cold in one spot be vigilant! My ear did hurt and I was complaining but then it froze and I did not feel it, same with my scalp. I got a little flakey from frost nip the first few times.
I'm three months PFC I have loads of thick new growth almost two inches! My eyebrows and lashes fell shortly after the last chemo. They are all back super thick ,,almost too bushy. My hair is coming in more grey and with curl. I lost at least 75percent of my hair mostly at the very end. I orried and suffered for just under two months, survived by using toppik... I'm now so happy content with the regrowth speed!
Taking viviscal. I now Buy it at Walmart. There is a five dollar coupon for it inside the box...Amazon has counterfeit reports in the ratings...39 bucks at Walmart
The little bit of blonde there in a tiny clip is what's left of my old hair. Previous to this ordeal I could barely contain my old thick hair in the largest clips they make....
I'm in a weird stage now with no idea what to do with my old straight blond and new curly dark and grey. I really want to do real color at least. I don't like the dark or the grey but it looks healthy at least. For now I'm wearing hats. I'll probably eventually cut what's left to match my new hair then I'll go back to blonde. I did a blond henna rinse once so far but it did not amount to much, maybe helped the grey.
My low point is below ....don't fret too much if this happens, it's not worth all the worrying..
I was on ACT and I broke some rules. One... I did cut my long hair to chin length after my first AC. I wore hats and helmets and got a hot head under them while excercising too. I cut my hair to chin length because it was impossible to deal with not being able to wash and comb. I also did not know that cutting was not recommended.
I desperately wanted to save my old heavy long mane of thick long blondblonde hair, but hair loss with AC T is pretty tough to fight.
Please all who are thinking it's too hard, hang in there, don't give up! there is light and quickly at the end of this tunnel. Cold caps work for regrowth! These photos are only three months apart. I lost most of my hair at the end of my dose dense taxol ...which was weird. I lost NO hair PFC. I did have a nice amount of hair thru most of my chemo. I never wore a wig. This baldish head below was so short lived!
I used castor oil and argan oil on my brows.
My hair looks okay with a hat still. This is me today kayaking. I completed 20 of 33 rads this morning. I'm a little itchy and a tad sore. My arm still has lots of numbness and pain from my post chemo surgery. My toes and fingers are numb and hurt too..but life is still good. Keep moving! Moving helps the pain! Distractions like this are the best medicine!
Check the seals! Otters everywhere too. Near Monterey in the Elkhorn slough!
Hugs e
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Purplestargazer,
I have not done the changing myself and I don't think I could have. I used Penguin Cold caps and that was 2 hours before chemo, 2-3 hours of chemo and 5 hours after chemo. I really didn't know what to expect but the cold capping was way more brutal than the chemo. And the time after chemo was the worst of all. My husband did my cold capping but I had other friends help out too. And when I got home, my friend who was babysitting my kid, helped with both my kid and dinner and with my husband and the cold caps. By the time I got home, I was just done, but had hours more of cold capping to go. I just laid on the sofa and tried to sleep between the changes. It was really the end of the day which was the worst and the end couldn't come early enough.
Can you teach a friend how to do it who can help you every week at home, so you would have someone at the cancer center and a different person at home?
Elastogelgirl -- your hair looks awesome. I have 3/4 inch growth so far and it is all white. So I'm going from brown to white after my chemo. I haven't dyed my hair in the past, but I guess I will have to in the future.
I am 14 or 15 weeks PFC and my hair is still shedding. I can't stand the way it just sheds one by one onto my arms and then I have to find it and pull it off. It feels like a spiderweb.
And because the hair that is coming in is white, it doesn't make me look like I'm getting new hair, since white hair on a light scalp. It took me weeks before I found someone who could actually see it coming in and by then it was already 3/4 inch.
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hanging in- maybe try a darker henna rinse? I used blond it was not too noticeable but I think it hid a lot of my new grey. Darker henna would cover nicely I think. Try to use use a cold version. I forget what I used.
Good luck time will heal!
Hugs e
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GOKale4320, Pamela 23--- thanks for the hair color suggestions.
Hanging in--- I've used the 365 Whole Foods brand conditioner. I use a small amount and I don't put it on the top of my head.
Elastogelgirl-- you look great!
My husband and a friend helped with my capping. I couldn't have done it myself. I used pantyliners on my ears and forehead and had no frostbite.
Enjoy the weekend everyone!!
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hello yesterday with the first shedding my hair is really tangled because it is curly i am afraid to comb it because it is going to shed again. Any suggestions?
Other question the washing day, PCC say it is 3 days before the chemo. So if it is next Wednesday so it is tomorrow or monday when i have to wash it?
The Henna, the castor oil, viviscal. Do you use it during the chemo or after the last one. ?
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https://www.amazon.com/Henna-Persian-Brown-Chestnu...=sr_1_4_a_it?ie=UTF8&qid=1498331663&sr=8-4&keywords=henna%2Bbrown%2Bhair&th=1
Elastogelgirl, is this what you are talking about? I've never looked into hair color before because my hair was aging nicely until chemo. Is this OK with Chemo?
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Elastogelgirl: You give me hope. The top of my head is way worse than yours. I am half way done with TC and my husband and I are feeling very discouraged. I want to continue to cold cap for the remainder of my treatments for the regrowth process. He thinks I should give up. (he does all the work on treatment days and I fuss about the worst hair I've ever seen on the rest of the days). Next treatment is on Monday. Looking forward to being done with it!!
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rdsm- I understand the thoughts of giving up. I'm glad I stuck with it. I'm also glad I have some left to have sticking out under my hats and scarves, keeps people from thinking I'm a man! which they do often anyway because I'm so big broad and tall. My hair was my feminine side! It's a journey of acceptance that's for sure. I'm feeling so much better about it now! I feel its going to take some time before I think my hair is presentable. Luckily I don't mind the hats and scarf look. Also because you did shed so much perhaps you are done shedding? This is what happened to me, it all shed at once towards my last taxol then shedding just stopped. I think maybe it has something to do with where your hairs are in the growth process. Some gals shed more PFC. I had a ton of hair to begin with. You have to believe you are at least saving your hair follicles.
Hanging in- I don't know what brand of henna I got since I had a hair dresser do it..it was not that one you posted...it was a no heat process. It was a thick goo.....so if you are still losing hair you might want to wait.
Vivian-I would buy the viviscal and take it to your MO to make sure it's okay to take while doing chemo. I took mine post chemo. My radiologist has limits on antioxidant vitamins. I took biotin all thru chemo and now radiation. About Henna-check the rules Im guessing you are supposed to wait to at least 12 weeks post chemo. I decided to do it sooner because my hair did not shed much at all after my last chemo. It wasn't a huge improvement so I would wait for end of shedding for sure.
Hugs everyone this ordeal will be past tense sooner than you think! Live in the moment! reduce time looking in the mirror if you can. try to keep a smile on your face when you are feeling good. Smiles make us look better. Go out and breathe! I spent way too much time fussing at the mirror. it's not worth it! I fussed by the mirror endlessly, it is not good for you hair or your health. I Used Toppik even when I wasn't going out, it helped my mental state and lessened my fussing.
🤡😁💪
E
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https://chemoforbeginners.com/2012/11/20/keeping-h...
I found this link and thought it had clear and thoughtful advice about chemo and cold capping. I wish I had found it about 7 months ago.
Fastgirl - I'm going to follow your suggestion and not Henna my hair until it stops falling out. Gees I'm already 3 months PFC and still have hair falling out. I won't have any hair left if it keeps this up for another 3 months.
OK google told me average person grows 1/2 inch per month. So by December, I'll have 3.5 or more new hair. I hope that is long enough to do something with it.
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purplestargazer - I use Arctic and have had success, but I'm not going through AC which tends to be tougher on hair. I do manage my own cap changes at the hospital and at home. Although to be fair, my ex-husband handles the rotation in the cooler while I'm getting my infusion but I take care that part too once I get home. I know I've read about others on here who manage it by themselves, so it's definitely doable.
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I buy it at Walmart there is a coupon inside the box. Got the extra strength 60 tab for 39 dollars
I don't order it online because ratings are iffy for old or counterfeit products. I think if you decide to take this during cancer treatments show it to your oncologist for approval.
I think my cvs may have duscontinued sales of viviscal in favor of their own brand...
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Soxfan75 this sound promising. I'm looking at Penguin b/c they have the best success rate on AC. Any Penguin users out there who were able to manage their own changes?
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Hello today i washed my hair and it tangled in two pony tails, almost all my hair, i went to the beauty shop i put so many products to detangled it. There was no way that i could fix it so now i dont know what to do it is impossible if i cut them i have nothing left. Did this happened to any of you. ? I would never expect that, i am really concerned. There is nothing to do only cut those tangled pony tails. My next chemo is Wednedsday i am going to cold cap what i have left for the regrowth. This is really awful.
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Vivian- oh no!
So be patient first. Breathe.
If you are like me you hair tangles more when it's wet.
If me;
1.I would let it dry completely. Then Put a very small amount of coconut oil or leave in conditioner on snarls let it sit for 15 mins
2Get a long knitting needle a wide tooth comb and maybe some cuticle scissors Then sit in a relaxing chair.
3.Start slowly from the bottom and try to widen the tangles with your fingers just slowly work at the bottom separating and widening in sections. You can then hold the wider snarls and work the knitting needle or a skewer through small tight sections. Key is to just try for a little at a time and don't always pull toward the bottom. Keep separating pulling it from the sides outward not just down if that makes sense. Seperate the snarls in every direction except up... move free sections out of the way. If you can manage to get some spaces into the snarls you can get success. you'll gradually find a way To get more and more sections free.
You can cut small impossible snarls out with the cuticle scissors.
I know it can be done I've been there many times in my life. For me my hair has to be dry. I've never had luck getting tangles out by a hair dresser but if you do go back I would try so,some who maybe has experience with corn rows.
If your hair is super long and you are resigned to cut I would try cutting some small bit of the length then try at the detangling again.
This is a set back but I think it's going to be okay!
Best of luck
Hugs E
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Vivan, I think Elastogelgirl's advice is good. To add, another woman on this site recommended putting cornstarch on the tangled part of the hair. She said that it was a trick from showing dogs as a way to get mats out of their hair. Something about the cornstarch makes the hairs slide over each other
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Thank you i want to cry really do you remember how i prepare the cornstarch?
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Vivian - I would just try sprinkling a little corn startch on dry and see if it makes it easier. You can't hurt your hair with it. It might be just the thing.
Good luck and patience
Hugs e
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I was diagnosed back in November 2016 with Stage 1 A breast cancer and was prescribed 6 rounds of Carboplatin, Taxotere and Herceptin and because I have a politically appointed position for the state of Alaska in health care I spend a lot of time in the public eye. The last thing I wanted was to be bald during a critical time. I did some research and found the Rapunzel Project. This was helpful information and I eventually used the Arctic Cold Cap Therapy. The support from Arctic was marginally helpful. The results were also acceptable. Because I had short hair to begin with the small amount of shedding I was able to have no noticeable difference in hair thickness 14 weeks post my last chemo. The biggest thing for me was having to not cut my hair for over 6 months. Ironic as it sounds I couldn't wait to have the back of my hair cut very short (nearly shaved). I know everyone is different, but I wished I had had someone to ask questions of when I started and to give me their perception of how it worked.
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Hanging in-this is the henna my hair dresser used. She gooed it on all over and put a shower cap over it and I sat for an hour then she washed it out. It made a very tiny slight improvement on my new gray hair. the incredible dark color I'm growing now overpowers.
I read that Henna can go red. This is just so light it does very little. It is Swedish blonde. I do see the blonde covering my greys. It is more youthful.
I think if you pick a darker version It would work better on grey but you may not like the color. I personally will try darker next time. I could go dark and look better than my two tone scraggly Freddy krugger mullet
This has the consistency of honey so if you are still losing hair I would wait until you feel your hair is stronger.
Good luck
Hugs e
You absolutely can do this yourself. Don't use heat. Just do the shower cap and sit
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Vivian--my recollection is that you just take the dry cornstarch and sprinkle it over the tangled area, keeping it on your hair, not scalp. And as Elastogelgirl suggested, work it through carefully, massaging the mat with your fingers, and then use a pick or comb or knitting needle. Perhaps you can search for "cornstarch" in this forum and see the original posting. I think it was at least a year ago (During my 12 week cold capping, I read the entire forum postings from the first to current).
Hanging in--I am 9 weeks PFC and still shedding at about the same rate as I did during chemo. But my roots are totally white and really long, and I tired of the stiff feeling that Pamela has described with the Loreal spray root touch up (temporary color). So I used the Clairol Beautiful collection advanced grey semi-permanent (no peroxide, no ammonia) on a test area at 8 weeks. With totally white hair, coverage is not great, but "tamped down" the grey a good bit. So, emboldened, at 9 weeks PFC, I applied it to all roots, using a color brush applicator so I could keep it off my scalp, and was fairly pleased with the results. So this might be an option for you. Another option would be to use the Loreal root touch up spray--it covers very well, and you could just do the area around your part, where the grey shows the most. The downside for it is that it feels like hairspray on your hair, so I was extremely careful and gentle in combing it. I noticed no remarkable difference in "shedding" using either of these temporary colors. And lastly, WOW powder is good, as well as the Toppik. I think I've tried every temporary color option out there! Good luck
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Amapola--I just described the different things I've done for color. I know that Penguin protocol says to wait 6 months for permanent color, and 3 months for vegetable based color. For myself, I just had to do something as the contrast with the white roots was too much with dark brown colored hair, but I am still losing hair each wash, so I am not ready for a permanent color yet. But it is such an individual choice. Others have used a gentle permanent color as you described fairly soon PFC. If you feel your hair is strong, and your shedding has stopped, or slowed down, perhaps do a test area and see how it goes for a week or so? Good luck, and keep us posted as to how it goes
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Vivian - I have chemo on Wednesdays and wash Saturdays. I use a brush called a wetbrush. My hair is super curly and it tangles so easy. I actually braided my hair when washing to keep it from tangling it wasn't perfect but it helped. I sprayed unite 7 second conditioner before I brushed. I would hold the middle of my hair tightly so I wouldn't pull it out. I'm so sorry it's so tangled!
Purplestar- I just had them paint my nails with the shellac nail polish overmy own nails. It has really helped I think make sure if you have taxol to ice the hands and feet! I can't imagine doing capping by myself I have penguin and it's quite a lot of straps and fittling it correctly but I imagine others have done it. Especially every 25 minutes and sometimes the meds make you sleepy depending on which chemo.
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