Cold Caps Users Past and Present, to Save Hair
Comments
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Elise-I lost AT LEAST 40-50% of my hair first shed. I was on penguin cold caps. All together I lost more then 60%. But I never ever lost clumps. It was all over shedding. I have shed since the first TC but never ever a massive shed like the first time. I am still shedding and I am 18 days past my last chemo. Unless you REALLY know me you wouldn't know I had lost any hair. It just looks like I have really thin funky wavy half white hair. For some reason the wweird white hairs that I never knew were there were the ones that mostly hung around. Really really weird!
You'll be ok❤️❤️❤️
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Elise the first shed is the big one, i lost most of the hair I've shed between days 17 and 34, Then the shedding was substantially reduced, I still shed, but only a few hairs. Good luck
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anniekaja-I honestly think that the Drs have a superiority complex when they speak to their cancer patients who are bald. I think when we show up looking "normal" it sort of unbalances them. No "woe is me" that they might project coming from their patients. We seem to be more on their level and that's unnerving instead of uplifting to the. At least that's sort of the impression that I got.
🙁
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PatinMN SusanBP I get Perjeta, for my infusions I start with that, then Herceptin and then the Taxotere. My plan from Penguin indicated I should treat the Perjeta as part of chemo and being my cold capping an hour before I begin that infusion. In cases where people just get it with Herceptin they are experiencing hair thinning. I wish it didn't count, my day would be much shorter. But I have been through three treatments (fourth is in two days) and my hair is doing well.
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I was just hoping to keep like 75 percent of my hair, which I didn't think was too much to ask for using PCC (and carefully following protocol) with a TC regimen.
But if I keep shedding this much through day 34 (or even through day 24, which is when most people say the big one stops) I will need a wig for sure.
Feeling very upset - I had high hopes for cold caps.
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Meg: can you get your tax otero first and end with your herceptin? You can count herceptin time as post chemo time. I only get perjeta every third week. I will now ask for it just before the herceptin.
I did talk to my consultant and she said, yes, perjeta is counted as chemo
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morning ladies, yesterday was day 28 post first treatment and wash day, and I lost a lot of hair
I've only had two treatments and I am worried.... The dignicap is so new at my treatment center that the staff doesn't really know what they are doing and I'm worried to be doing it all wrong. Anyone out there with any tips on fitting he cap better??? Thanks!!!!0 -
Meg2016 and SusanBP - thanks for the info on perjeta. Good to know.
Elise - don't lose hope yet! Hopefully your shedding will slow down soon!
To all - it helps everyone (newbies and "oldies" trying to help) if you put your chemo regimen and start date in your tag line
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DistrictGirl -- This was my protocol and I had GREAT success. I was on THP (Taxotere, Herceptin, Perjeta). I used Penguin Cold Caps and my center's freezer.
I started about 40 minutes before they started the Taxotere. Do the chemo drugs first! I did 2 caps for 20 minutes each. Then when we got the 3rd cap on, they started my taxotere and it ran for 1 hour. From then on we changed the cap every 30 minutes. Once I had finished my 1 hour of taxotere we started the timing for the 4 hours after. Herceptin and Perjeta should not cause hair loss so they don't have to count in your cap time. So I had another 1.5 hours of infusion that was part of my 4 hours. Then I had about 2-3 hours left to still cap. I also live about 20-30 minutes from home, but I thought it was easier to just stay at the center. About half the time I was able to stay in my infusion room. The other half we had to go to a waiting room. But it wasn't a big deal. It was still near the freezer. Then when I put on the last cap, we headed for home, and I took it off when I got home.
Hope this helps. Feel free to ask any questions!
Good luck!
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Elise- as Phaila said, that first shed is scary but if it is coming out from all over your head, then you should be okay. Even though a couple substantial handfuls feels like a lot, it will slow down at some point and shouldn't keep going at that pace. I know it is super discouraging but hang in there! I keep trying to tell myself to focus on what is on my head and not what lands in my sink when I comb. I just comb and toss and try not to look back - I know that is hard though.
General update: I am 8 days out from chemo #3 and have had pretty good shedding the last few days. It slowed down a lot between #2 and #3 but at about a week past #3 it has picked up the pace. Hoping it slows down again soon as it seemed to be going so well! Last and final #4 is on June 21st and I can't wait for this to just be over and done with!! I know I will keep shedding for a long while but at least there won't be more chemo added to the process. #3 has been rough - lots more fatigue and stomach issues and some pretty bad mouth sores - anyone have any tips for dealing with those? I am using baking soda/salt rinse but wondered if there were other tricks?
Hugs to all my fellow cold cappers and hang in there, we will all get through this together!
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amyabs,
Ask your doc to give you a script for Magic Mouthwash. It has to be compounded by your pharmacy, and is a little expensive, but I used it once a day thru chemo and only got one mouth sore the whole time - and it cleared up fast.
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Viktoryak, Love the weekly chemo critter pictures! ☺
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Magic mouthwash and gargle is good stuff. I had severe stomach issues. They also gave me carafate for my tummy which worked GREAT.
I sucked on ice chips during Taxotere infusion (15 min before/after) = no more mouth sores at all!
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Ladies, did anyone trimmed their hair during cold capping? I am not talking about drastic cut but bangs. I have short hair and it is disaster.Bangs curl up.... So i was thinking of a trim of at least bangs. Well, I know it is a no-no based on cold caps company..but ...
Also no -no sweating and I exersise daily... let's see what will happen...
I remember someone was telling that she cut her hair and sweat a lot and also did motorcycle helmet and it is still worked..
Also, about Taxol, i don't see many people here on weekly Taxol. Is it easier on hair and better works ?
Hope for some feedback!
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Amyabs...I have major mouth sores. Magic mouthwash has allowed me to numb my mouth to eat, but didn't eliminate them. They are absolutely miserable. I was actually hospitalized for two nights with neutropenic fever and they could not attribute the infection to anything but sores or gi issues:( I was given a script for lidocaine rinse. It is thicker and tastes gross, but seems to coat my mouth a little better.
Dancetrancer....is it only taxotere that causes the mouth sores? I am going to ice on Monday. My mo may shorten my regimen to four due to these terrible side effects. But could definitely try icing for number four. I'm icing everything else!
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my mouth sores never hurt except the ones on the back of my throat. I had some leftover peridex mouthwash from a dental procedure and started using that from day 1 of chemo and stopped getting sores all together. You have to have your doctor write you a scrip for it.
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I have been searching for the ice caps used at Providence Hospital - Burbank back in the 70's when my cousin Sue was getting lots of chemo and radiation. She was a pistol but she made the nurse bring the throwaway plastic caps for crushed ice and she also made them replace the ice before it melted. The treatments were in the hospital and took over 4 hours and they did not let her go home until the next day. She never lost much hair and it did not turn gray or white. When the sickness not bad she uses Marijuana until it stopped helping and then I had a pharmacy friend that recommended a pill that Sue's Oncology doctor approved. I can't remember the name of the pill but will find out what it is. Sue lived a long life into her late 80's.
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jgab: My regiment was TCH (Taxotere, Carboplatin, Herceptin). I was told Tax was the big culprit for mouth sores, and to ice 15 min pre, during the whole hour infusion, and 15 min post - to keep the chemo from going to the mouth mucosa just like the cold caps keep it from going to the hair follicles.
I'm sure other chemo's can cause mouth sores - all I know is for mine, Tax was the big culprit, per my research.
P.S. That 1.5 hrs of icing everything SUCKS! But I'm really glad I did it. Mouth sores suck! And way more than sucking on ice, lol!
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victoryak - I haven't responded because I didn't do Taxol. But seriously. Everything I've ever seen posted by others (since 2012, when I joined this thread) has been that it is the "kinder" chemo, in all ways, including hair (Oh except for it may result in more neuropathy, so watch for signs of that). I don't recall anyone on Taxol only ever NOT having success with CC's.
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Dancetrancer, thank you. I hope so... So far I am good. Just got home from 1 hr.intense spin class. And do exersise every day. Hair so far not bad after 6 times. And according to my MO i should only have if ever neuropathy... but i ice my hands and feet. So hope it will not happen.
Thank you!!!
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HI,
What are you guys using for deodorant? I am having a hard time finding some without aluminum, and the one I did find does not work as well as my usual secret brand. Its bad enough I can't wash my hair as much as I used to, but i don't want to smell LOL.
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I use crystal clear spray. Yes maybe it is not so strong but OK.
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viktoryak,
I was the one who wore a motorcycle helmet and sweated - a lot!! I was riding almost every weekend during chemo. I used one of those bikers bandana do-rags under the helmet to keep it from pulling at my hair. So with the helmet and bandana together, my head got hot and sweaty on a regular basis. I sweated so much the bandana was wet when I took off the helmet. I didn't cut my hair until I finished chemo, though. I was tempted to cut my bangs, but found out the longer bangs worked well swept over to one side to hide the thinner spots in front. Also, my bangs thinned some during treatment, so they didn't look that good anyway if I kept them regular length. However, they were the first hairs to grow back, yay, so I got my bangs re-cut about 3 or 4 weeks pfc.
As I said before in earlier posts, I broke a lot of the rules and managed to keep my hair. Would I have kept more if I'd followed the rules more strictly? Who can say. I put up with as much inconvenience as I could, and then I just did what I wanted. I'm not telling anyone to follow my example, just sharing my experience and the outcome.
Ladies, it all comes to an end! Just hang in there!
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jstan81963,
My oncologist and radiologist said that continuing to use the aluminum based deodorants was fine. With all due respect to the company, and immense gratitude for their invention - some of the capping rules are just plain weird! like the one about no coffee! Hmph, I don't think so!!
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No coffee? Really? My cold cap company doesn't say it. Where does it say? I love coffee! And drink at least once a day. Usually more...
Do all others NOT drinking coffee?
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It was in the information they sent me after I rented the caps. Most of it made sense. The ones I didn't understand were:
1. Stop using deodorant with aluminum...I don't see any connection to antiperspirants and hair
2. Stop drinking caffeine (which includes coffee and sodas) ... I drank coffee and sodas every.single.day.
3. Don't cut the hair because they say it makes the follicles weaker...how did they figure that out?
Whatever, I'm very grateful for the technology and the cold cap inventor
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HI ladies --- am on day 29 PFC and think I've lost half my hair. But, as dancetrancer wisely advised a week or two ago, I'm trying not to worry about things I can't control... It will be what it will be. The shedding has slowed down a lot, but still seems heavy for as little hair as I have left. Hope it slows down soon.
NEED ANY AUBURN TOPPIK? I have a few thin spots and the Toppik light brown really helps. However, I overestimated my auburn-ness, and ordered a 12 gram bottle of the "Auburn" color, which just doesn't work for me. Can anyone use it? If so, please message me your address and I'll be happy to send it to you --
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Meg 2016: I get the taxol first, then the perjeta (which I now count as chemo time. My MO didn't quite understand it but if you look up perjeta online, one of the side effects is thinning hair). Plus I only have it every third week so I figure one extra half hour should be ok. I finish with the herceptin so I can count that as post chemo time. Ask your doc, you should be able to do it.
Wildflower: They don't recommend aluminum anti-perspirant because aluminum is toxic and they just don't believe you should be using it for health reasons.
This is my take on it. Penguin has been using these caps for over 20 years in Europe. They have 20 years of experience to draw from. I think they may have picked up something along the way.
And with that, I wish you all great luck.
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SacCat - I go for round 2 of TC tomorrow and I think I will also end up with half (or less) of my hair, based on the huge amount of shedding I already have. An entire plastic sandwich baggie totally full of hair from the past 3 days. No clumps, but handfuls of numerous strands from all over my head.
This makes me very worried and sad. I was hoping to keep 70-75 percent of hair like most people using PCC with TC usually do! I have even seen some say they kept 80-90 percent! Now I predict I will be lucky to keep 40-50 percent, unless the shedding slows down significantly after my second chemo.
I've read every page of this thread (really!) and strictly followed protocol - even the rules that make less sense! It truly was my impression that only those doing ACT or using other cap brands ended up not having success, so I am honestly pretty confused.
I work as an actress and model - occasionally even a hair model! - for a living here in LA so my hair is VERY important to my income and survival (not to mention my breasts, but that's another topic!). I also don't have a spouse supporting me. This is why it's so crucial that these caps work. I used my savings to pay for them. I'm scared I will go bald and not be able to work for 2 years - which makes a difference as I just turned 31, and every month in this industry matters for a woman.
I would love some reassurance, advice, etc, from others with my same regimen and using Penguin. Am I just one of the unlucky few who fails?
In case anyone is wondering here are the things I've done: no heat styling/blowdry, no antiperspirant, no hot showers, wide tooth comb only, natural ph balanced shampoo only, no styling products, cool, gentle wash once or twice a week and no wash 3 days before or after chemo day, let hair air dry without rubbing on towel, silica supplements, no caffeine, no hats, no swimming, no cuts or color over a month before chemo, lots of hydration to flush taxotere from system, and I even started eating meat again!
On cap day I hired a penguin rep directly (for much more money) and he is doing everything according to their protocol regarding timing, temperature, fit of caps, etc.
So what's happening to me? This shedding is so traumatic.
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Viktoryak, I was on weekly Taxol and I did trim my bangs during chemo
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