Cold Caps Users Past and Present, to Save Hair
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I am trying to save the strands to make a wig or hat with hair out of. Organizing my hair strands has become a new hobby.
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I just finished 4 rounds of TC, and had rounds 3 and 4 reduced due to being neutropenic twice, and minimal neuropathy. I had a rough go with chemo, throw in the fact that I had EVERY round delayed due to either: a surgical healing delay, an infection, suspected cellulitis, neuropathy, etc. You name it, I had every side effect besides mouth sores. Needless to say, chemo hit me hard, and it hit my hair hard too. I lost at least 50-60% of my hair after round 1 and shed steadily for a month. Clumps the size of my fits, terrible matting. I cried, and almost shaved my head several times, but I am SO thankful I didn't. I still have hair! Sure, it's thin, but I can get by if I pin the top back I can get by. Keep up the capping!
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Hi you all, thank you for being here sharing your experience on saving hair. I have a question for you if you can help me.
I'm on the 21 day post 1st round of chemo, I have a 4 TC schedule. Tomorrow is my second one. I used the dignicap for the first session, and on day 18 I started to have a considerable amount of hair shedding. So far I may have lost about 10-20% of my hair, and I continue on shedding, a lot. My question is: is this normal? Is it going to shed during all the treatment, every day?? If it does at this rate, I'm afraid I wont be able to hide the hair loss. I think the dignicap may have worked a little, otherwise I would be bald by now, is that so??
Than you in advance for your answers and I hope you will be doing well.
Monica
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Monica, I can only speak from my experience with Penguin Cold Caps. I was on the 4 TC schedule also. My final round was last Thursday! On day 18 of the first round, I started major shedding and it has continued to some degree since. The worst shed days were always shampoo days and the day before, day of, and several days after each chemo cycle. I don't know what to expect now that I am PFC, as I am still shedding at the same rate. When I expressed my concerns at #2 chemo session to the onco nurse, she said that if I hadn't been cold-capping, I would have been bald at that point. Everyone seems to have a different cycle as to hair loss and cold capping does seem to work better for some. I would suggest you continue with it and you may have a very good success rate!
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Hi Monica, I am 2 weeks past my 4 rounds of TC and used PCC as well. I have had pretty consistent shedding throughout with heavy shedding right before each round, so 3 weeks after each infusion. I’m expecting I have another major shed coming in about a week. Eyelashes and eyebrows are very thin. Overall, with careful hair pinning, false eye lashes, brow pencil, I’m able to get by so far without looking as though I’ve had chemo. I’m trying not to compare my hair to what it was pre chemo, and I’m grateful to have enough to get by. Hang in there with the CC. Definitely the toughest part of infusion day for me, but so far, it’s been worth it. Good luck to you!
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Heading into treatment 8 of 12 (Taxol, then Abraxane), and I broke down and used a tiny bit of conditioner on my hair this morning. My hair feels so much better!! Maybe it will help reduce the scalp peeling?
The Penguin cold caps continue to be amazing - I would say I've lost about 10% of my hair at this point - seems like normal shedding, without regrowth. Hair on my legs finally stopped growing, and I have no complaints about that!
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I'm on taxotere and carboplatin every 3 week and am using Dignicaps.
I have thin hair and a narrow skull and I don't think I got good enough coverage on top during the first round and that is where the shedding started and is the most prominent.
Here is how things went down.
I noticed about a week after my first infusion, my normal shedding stopped and I didn't shed much at all (weird).
Around day 15 I went to pluck a grey hair on my crown and it came out like it was ready to do so anyway, and did not have the bulb attached to it.
Around day 17 the actual chemo shedding started.
For the second infusion, my chin strap was better placed and we tied and extra strap over the top of my head so I feel I got better coversge, but taxotere can take all of your hair out with half a dose so the first infusion might have been enough to completely bald the top.
A week before my third infusion the shedding hasn't let up.
My hair looks thinner and feels lighter. My part up top has widened to about half an inch in some places and my silver undercoat and scalp are sometimes visible on my left side which I sleep on.
I had been sleeping at a propped up angle with the top of my head against the back pillow, which I think worsened the shedding so I am now sleeping flat and trying to alternate sides more.
However many of the hairs up top will come out without any resistance if I tug them so I think a lot of the hairs are now zombie hairs and are just being held in there by friction and are destined to fall out. Spray glue has come to mind but I think that would be a bit desperate, lol.
If the shedding continues like this, I highly doubt I will have any hair left when I'm done.
As for eyebrows and eyelashes...
I've always had thin eyebrows and the ones in there seem to be staying put for now. My eye lashes have never been more than average and they do look a little more sparse and are coming out easier and without a bulb so the chemo is thinning them.
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I'm reading everyone's hair stories with great interest!
I'm on Day 16 of #1 TC today. Paxman Cold Caps. I haven't noticed any hair falling out. Yet. I'm probably just not at The Shedding Starts Day yet. Which is probably tomorrow, according to many posts!
I have not washed my hair, even once, since chemo started. I wear a lightweight (bamboo) turban to bed, and a shower cap to take a shower. I suppose I'm trying to delay the trauma of seeing all of my hair fall out in the shower.....
I put a kerchief or a hairband over my (chin length bob with bangs) hair during the day, to draw less attention to possible greasiness. I thought I would HATE not washing my hair daily, especially when I've worked out or gotten sweaty, but I just decided that if this helps keep the hair in a bit longer, I'll do it. I wear the turban to bed after showering in the evening. Keeps the pillow case clean now that my hair isn't really clean, and my theory is that if my hair starts shedding all over the place, maybe clumps won't be all over the sheets in the morning....
In one month, it's our daughter's wedding. I have a little crown topper wiglet in case I lose the most at the crown--maybe I can make what hair I have look okay, and I also have a wig that looks great, ready to use if necessary. I'm in such suspense, wondering how this will go..... thanks, everyone, for sharing all the stories.
Hair Today, but maybe Gone Tomorrow....
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Hi Hiking Lady - I used Penguin Cold Caps, and their instructions are very specific that you wash your hair on the 3rd day after chemo (I had chemo on Fridays, so I would gently wash my hair the following Monday). They said that you excrete chemo drugs through your skin, and that it was important to get that residue off your scalp. You could shampoo earlier or later also, but they stressed that it was important to do so specifically on that day.
I had 4 rounds of taxotere/cytoxan. I would wash my hair on Wednesday before each chemo, have chemo on Friday, and wash again on the first Monday after chemo. My thin/naturally dry hair became VERY dry as I progressed thru the chemo schedule (almost straw-like), so while I washed about every 3 days the first cycle, I was down to about every 6 or 7 days by the last cycle. I don't think it made a difference in hair loss - I just didn't need to shampoo as often to have clean hair and feel fresh.
My understanding is that washing your hair gently - following all the rules about tepid water, gently pouring water over the scalp rather than using shower head pressure, keep your head upright rather than flip your hair over while you put your head down, etc - is to baby the younger hair follicles. The old ones are expected to fall out, and they will do so whether you wash your hair or not. As they fall out, they often stick to your existing hairs (especially when the hair is really dry), so the act of washing or gently combing loosens them and allows them to actually drop off and be seen on the shower floor or in the comb.
You may want to check in with your cold cap company about not shampooing during the entire chemo schedule - you may be setting yourself up for scalp issues that could compromise your hair, or "doing without" when it may not really make a difference.
I'm almost 9 months PFC, and while I lost about 60-70% of my hair, it was a very even overall thinning with no big bald spots, so I could get by with carefully arranging my strands in a loose pony tail (the size of a chihuahua's tail at best). The dropping strands were discouraging for sure, but within 3 months my new hair added a lot fullness on my scalp and at 9 months, those new strands are almost long enough to pull back into my pony tail. It wasn't easy, but I'm really glad I capped!
Best of luck to youas you cold cap!
Willow
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Willow22 Thank you so much! I will research more, but maybe I'll do just as you're doing. Penguin has been around a long time, and they probably Know Stuff. I'll hope for any success saving some hair... or at least hopefully regrowing it all eventually, which I care even more about.
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hiking lady - which company are you using?
I am happy to send you the pdf from penguin with their capping hair care info (timing and temps will likely be different from your system, but general hair care tips would be the same).
Willow
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Hello All–especially Willow and all those who were cold cappers last winter 2017-18. (Finished in February)
I lost probably 50% of my hair (some of that due to a secondary candida infection) and had a bald spot on the crown of my head, covered at first with a combover and barrette and now cover my hombre mullet with a human hair topper when I work or socialize.
My question today is: has anyone, post chemo and cold cap experienced itchy or sore scalp? Feeling ‘dandruff’ that feels more like salt? What helped your head feel normal again? How long did you continue shedding? I feel like my shedding is finally back to normal just recently, so about 4 months. I was surprised it took so long but did have surgery and now am middle of rads
My hair is growing back, slower than it used to, darker and greyer than it was, but it’s there and never left me entirely. Hang in there current cold cappers, it’s worth it!
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Domzie and current cold cappers, I am 17 weeks PFC and 12 weeks post surgery. I’ve posted this before but it still applies. Here was my take:
About the shedding-the 'big shed' is definitely the worst and it takes a bigger girl than me (who almost never cries about anything, even my diagnosis) to not cry in the shower on that first shower shed day. So I allowed myself that boo hoo moment, determined that it will be what it will be, and moved on. It's hard to explain, just like it's hard to explain labor, to someone who hasn't gone through it, but for me it was a series of diminishing expectations during the six cycles of chemo. First it was "I am going to keep my hair with cold capping", to "I am going to lose some, but only 10-20% of my hair to chemo", to the big shed shower sobbing weekend of "Oh God, all of my hair is going to fall out", to "Well, it's going to be how it's going to be-wait and see", to "OK major bald spot-rock the combover/barrette at crown", to "Geez, how much hair can a person lose before they look like they have no hair", to "Made it through, still have hair, now it can start growing back & I don't have to start from scratch". There are varying returns on cold capping, but overall I get the sense for most of us it is ultimately worthwhile. Despite the expense, discomfort and personal trauma/drama, for me it has been. I'm still only a week PFC, so I'm sure my story isn't completely written but I hope it helps you even a little bit.
Even though the shedding continued and if I never felt another tickle hair that has fallen out on my arm or chest again I would be delighted it was STILL worth it. I too did not share my diagnosis with most people until I was through surgery and most were STUNNED to find out anything was wrong. That’s exactly how I wanted it so yes, totally worth it.
Wishing you all the best.
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I too have had sore scalp and peeling throughout. Don’t know if that’s due to chemo or capping.I’m 3 weeks PFC and it is finally letting up. Still shedding, and the feeling of hairs falling onto the arms/shoulders is so annoying! I’m wondering how people measure hair loss...size of ponytail? I have definitely thinned out, but couldn’t say what percentage. Still no bald spots and most people wouldn’t know...grateful for the capping!
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2catsintheyard, thank you for posting your description on the shedding process. It summarizes my feelings exactly during chemo. I am now two weeks PFC and wonder if the shedding will ever slow down. Yet, I still have hair and there is a bit of regrowth starting to show along my hairline. I saw the BS this week and she thought cold-capping, along with icing hands and feet gave me great results.
Rwns, I too have wondered how to give a percentage to the hair loss. My husband says I've lost about 50%, but if I use the ponytail size, I've lost even more. I also have no bald spots, but overall very thin hair. Since I haven't colored my hair since before chemo, the gray makes it look even thinner.
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Maggie – that’s a very good point about the lack of hair treatment adding to the thinning appearance. The low lights and highlights I used to get definitely added volume. Can’t wait for that hair appointment! I’m 3 1/2 weeks PFC, still shedding but maybe, just maybe slowing a bit. The eyelashes are completely AWOL
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Yes, I can't wait until I can see my stylist again. He'll be shocked at the amount of gray! I still have enough eyelashes to use a bit of mascara. The eyebrows disappeared the week after the second infusion, but I am already seeing a few eyebrows growing back. Maybe there is hope!
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Maggie-Are you, or anyone else, doing Arimidex? Wondering how that or tamoxifen affect the hair?
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Rwns - I am now about 4 months PFC. I took a break after chemo before starting Arimidex, but I've been taking it for about 2 months now and it doesn't seem to be affecting my hair. I have about 2 inches of new growth.
My brows and lashes were both just about gone a couple of months ago. Brows are almost completely back, and lashes are getting there.
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Magari-That is so cool to hear! Sounds like good growth for only 4 months PFC. Is your onc suggesting any meds for bone loss? My says some women take Zometa with Arimidex.
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No, I'm not on either of those drugs. My final pathology after the BMX showed very small IDC (4.5mm tumor), triple negative. Even though the initial biopsies after the mammo showed DCIS, very weak ER+, the onc says no to me needing AI therapy. So I guess my hair thinning is strictly due to the chemo.
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Hi everyone
So I’ve had 1 infusion of TCH 4 weeks ago & cold capped with Paxman -my next one is Monday (I was delayed a week due to low neutrophils which sucked) - I still have all my hair - I have had some minor shedding but my hair is mostly all still there - should I take this as a good sign that the scalp cooling is working somewhat
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Bheg, as I've learned from so many on this site, everyone sheds at a different rate and schedule. I used Penguin, as there are no infusion facilities in the entire state that offer Paxman or Dignicaps. I didn't have your chemo regimen, but with TC, the onc nurse said that if I still had hair by the second infusion, the cold capping was working. Maybe you are going to be one of the lucky ones and get to keep almost all of your hair!
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Rwns - I asked my MO about Prolia shots to combat bone loss with Arimidex, and she said she wanted to wait to see if this is the AI that I end up being able to stick with long-term first. My side effects have been manageable so far, so we shall see. Meanwhile, I have increased my calcium and D3 supplements, which she suggested.
There are a couple of good threads about AIs that you may want to check out if you are seeking more info or have further questions:
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Magari-Thanks so much for the info!
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Has anyone done just Taxol with the cooling cap? I am curious how successful the cap is with just Taxol. I am set to start 12 weeks (1x week) of Taxol + Herceptin, with the Paxman cooling cap. I am also happy to post my results as I go through the process.
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Hi acee-ess,
I started in Taxol (4 treatments) and was switched to Abraxane for the final 8. After today, I have 3 more to go, plus another 9 months of herceptin every 3 weeks.
My treatment center doesn't offer a cooling cap system, so I am using Penguin caps. Results are AMAZING. No heavy shedding - just my normal day-to-day shed. It's not really growing like it normally would, so I've noticed some thinning. But no one else can see it.
I admit that, nine weeks in, the process is a bit of a grind. But totally worth it.
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Dandruff?? I am 3 weeks PFC and used Penguin. Today was a shampoo day and now I have tremendous amounts of dandruff. I'm wearing a black shirt so maybe it is just more noticeable today. I noticed some dandruff during chemo, but not this amount. Is it common to develop dandruff after chemo? I've never had an issue with this prior to chemo. I also don't want to use a harsh dandruff shampoo so soon after chemo. Cold-Capping wasn't that successful for me so I'd like to not stress my remaining hair anymore than necessary.
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Maggie2:
I haven't had dandruff since I was a teenager until the chemo.
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I think all of my skin everywhere is kind of flakey--I randomly notice this on my face, legs, etc, so having scalp flaking might be just what happens?
My hair is hanging on well. My 2nd TC was 4 days ago, and I've lost very little hair. So far! Who knows what's next.... I'm using Paxman.
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