Cold Caps Users Past and Present, to Save Hair
Comments
-
Red, I never used a powder, but I used a color product that you sort of paint on your roots with an applicator (can’t remember the name of it) and I’m sure I used it very shortly after finishing my weekly taxol/herceptin. Then at 7weeks I had my salon colorist use Clairol Beautiful color on my hair, which doesn’t have peroxide or the other bad things, and it doesn’t cover very well either. But it did make a huge difference since I have a ton of gray. My colorist sprayed Bumble and Bumble dry shampoo (which has color) to cover the roots better. We used Clairol Beautiful again 4 weeks later, and then went back to the regular salon color 4 weeks after that. No ill effects from any of this. I was not shedding any more than normal at the time of first coloring, nor really at any time during or after chemo, thanks to Penguin and the milder weekly taxol
0 -
Hi Ladies--I continually pop in, read up. and try to pay forward my advice where I can. You are all doing so well and it's great to be part of such a supportive community! You are all doing fantastic and I see a few of you have finished, as well as a few newer ones just starting.
I know a lot of you have used Toppik. I never did, I used a brush on powder called WOW that I bought from Ulta. I LOVED it. It didn't come out until you washed it, if I remember right. I STILL use the L'Oreal spray because it's faster and I'm a scaredy cat to go with permanent coloring so I used semi permanent which just doesn't cut it after a couple washings. But my hair is healthy and I know what my real color is--I was almost forgetting after years at the salon.
Sonia--sorry about the 2nd eyelash fallout. Mine came out 3 times. Not down to the bald lid though on rounds 2 & 3. Just REALLY small lashes pushing out the full length ones so when you curled them , it looked like spaces in between. It seemed to be about 3-4 months apart each time. Last time for me was Oct. They seem a bit thinner right now, but nothing noticeable so I'm wondering if it'll happen again or if it just tapers off. I still use Latisse. I kept my lashes until about 4-6 weeks after chemo while using Latisse but I think everyone else did too so I wouldn't start it if I didn't already have a prescription. I know Amelia was wondering about that. I had been using it for a couple years prior.
Rockcity--sorry about your experience. Do you eat a solid meal beforehand? I kept snacks near also. I took a migraine strength Tylenol beforehand, as well as a xanax!!
So the reason I wanted to post is that I have a pic that's a year apart. I HAVEN'T cut my hair which shows you I probably lost 75% of my hair when all was said and done. I came out GRADUALLY over the last 7 months. I finished chemo Jan 18. 2017. I had long sides until about October. Now the only old hair is some in the back that gives me length in a baseball cap! It's definitely healthier but I REALLY miss my old hair!! The girls from my forum have 1/3 of what I have so I'm still very grateful!
February 2017
February 2018
0 -
Pamela23- your hair looks beautiful. I couldn’t get any haircut to make it look as nice as that. I’ve been using your pics and advice throughout coldcapping to give me the dedication to do this. Thank you. I ate and drank quite a bit right before my coldcap. Maybe it was too much. Next time I’m trying a pain reliever and Ativan first along with a light meal. I hope it helps.
0 -
Pamela23 - thanks, yeah...same here, I didn't lose eyelashes down to the lid, but they're really short right now. Thanks for sharing your experience. Your hair looks fantastic! So thick and healthy. I know what you mean about missing the long hair, but yes we are thankful to have what we were able to keep. You look really great.
0 -
hi ladies! I've been slow since chemo day. Haven't checked back here since Monday morning. Doing ok, getting nauseous but able to manage it with the anti nausea meds. Trying to stay ahead of it. And I'm TIRED! but doing great apart from that. Hope it stays that way. 🤞
Pamela - you look amazing! Congrats on the beautiful hair.
:):)Rockcity - I had a similar experience. About 20 minutes into the cold cap i started feeling nauseous. It started right after I started the steroids and anti nausea medicine. we think it was my nerves, being anxious about the treatment. So she had the doctor order me some sort of prescription. I forget the name. She said most women doing the cold cap at my center get it. It's a mild sedative that helps your nausea and makes you more relaxed. Wow, that thing was awesome! It totally got rid of the nausea. Maybe you can ask for something like that.
Apart from that, the treatment went well for me. The strap holding the cap was super tight. Almost too tight. And it was COLD! but I took some Motrin before hand which I think helped.It was a LONG day. I had to keep the cap on for 3 hours after treatment. Though it was cold, I had my warming blanket, my lucky warm socks, and great company.
The patient navigator who was assigned to me had the whole booklet with details about the Dignicap for me. She apologized as usually they hand this out prior to the treatment. Apparently the Dignicap wasn't on my file until Friday afternoon so she only saw it Monday morning.
Willow, sonia and all you great ladies - thanks for all the tips and help in getting me ready for my first capping experience. You are all amazing! I'm so happy I have found you all. Many many hugs!
0 -
For past cappers, when did you start wearing your hair in a ponytail to work out? I am 8 weeks PFC and need to start running but even if I do a loose ponytail, I feel like it's pulling.
0 -
Angiepie - I didn't have enough long hair for a pony tail so I used a tiny butterfly clip to pin up my long strands.
0 -
Hello ladies - one week PFC and my hair is still shedding but has slowed down. I’m anxious about the big shed from this last chemo which usually happens around day 21 for me.
Saw my BS today to discuss my upcoming BMX. Haven’t seen her for 4 months, and the first thing she said was “I see you been cold capping!” When I told her I’d lost about 50%, she was surprised and couldn’t tell. So even though I know it, the man on the street has no idea.
MamaFelice- I sent you a pm. Glad you are recovering well Pfc. I couldn’t wait to get those caps out of my freezer, my house and my life fast enough! Just got the email that PCC received them. My liver enzymes were ALT 121 & AST 69. What were yours? My wbc was low too. I’m feeling extremely tired and run down. I thought being done with chemo would make everything better, but I still have a long road ahead and I’m very sad and emotional. I am looking into Proton Therapy at Baptist Health in Miami. Are you still considering it?
Magari- I am also still having severe scalp issues from capping. Large chunks of scalp peeling, flaking and itching. I haven’t been to the dermatologist but I need to. Like you I’m afraid to “break the rules” of capping hair care. I do rinse my hair with vinegar & water solution. I think it helps but I’m only washing every 10 days or more so I think the infrequentcy adds to the problem. What did your Derm prescribe for it?
Pamela- your hair looks amazing and so thick! The length looks short, but you said you never cut it?
Red332 - did you get clear margins after your re excision?
Pbello, herohs, Rockcity & lovelight - how are things going with your hair? Hope you are all doing well
0 -
Pamela, my hair ended up much shorter than when I started, too. I don't know why, really. I ended up with random long hairs that I pinned back until it was safe to get them cut. I am pleased though, after nearly 9 months PFC, with my hair do.
0 -
pbello and ItsStillMe - I really thought I was the only one who got nauseous from the cold cap. After talking to my PA and all of you helpful women at breastcancer.org I’m going for an Ativan and Motrin before I begin to coldcap. I’m praying that solves the problem. Chemo round 2 is almost two weeks away still. I hid all of my coldcap supplies in the basement. Seeing them makes me queasy!
I’m 9 days after round one. My scalp is continually tingling. Does anyone else have this? Please tell me it’s not my hair getting ready to drop
0 -
Rockcity,
You have a great plan in place for the next round. My scalp tingled all through this, partly from the cold to normal room temps I think, but you will most likely get the infamous "Big Shed" at day 21 or so. That was the time that I lost the most hair and it was a few days long so want to give all of you heads up. Still, it was not noticeable to anyone.
I thought I was being smart by combing my hair outside on my deck during this time so it did not get all over my house, but it ended up living on my deck as it was a tad damp that day. So I got to look at THAT until the next rain swept it away! What a dope I was. I can laugh about it now. After the big shed, the hair loss was minimal to the end. YOU CAN DO THIS!! It is totally worth the trouble to be able to freely move about in public!!
Hugs to all the N\new cold cappers out there! Keep the faith that chemo is killing off cancer and cold caps is keeping your illness private.
oxoxox0 -
Angiepie--I always used a scrunchie--like in the 90s--I think they are coming back in style according to my 14 year old! It was gentle on my hair and I wore a low pony just to get it out of the way and not stress the roots.
0 -
Angiepie--I always used a scrunchie--like in the 90s--I think they are coming back in style according to my 14 year old! It was gentle on my hair and I wore a low pony just to get it out of the way and not stress the roots. I used it from the beginning.
Rockcity--did you have any antinausea meds beforehand? I think they put one in my pre meds IV or maybe I even had to take one with breakfast. I had tingling now and then too, but it went away. I kept my lost hair in a bag just to use as a reference. I wish I would have taken a pic since at this point I've almost forgotten how much it was.
GoKale--have you posted before & after pics o the Chemo before and after forum? I encourage any "alumni" to do so. It really helps those who are considering it.
0 -
"lovesgreenthings" -- thank you, and everyone else who have counseled us about the 1st big shed on/about Days 20-21 +/-. I've been blessed with moderately thick hair, which I've always kept on the short side (above the shoulder). I did get a little trim and shaping about 2 weeks before my 1st (of 4) TC chemo on January 26; fortuitously (before I knew I needed chemo) my last color/highlighting was in mid-December. I've been trying to follow all the do's and don'ts since before starting chemo, but yesterday and this morning, my Day #s 19-20, I started my big shed -- well, for me, based on what I saw in the wide-tooth comb. I've been washing my hair no more than 2x/week, and no later than 3 days before chemo. Tomorrow is chemo #2. Just keeping my fingers crossed that the shedding will slow down soon.
0 -
MamaFelice - I ended up buying the nanogen hair fibres, it arrived and its like a little salt shaker with the fibres inside. My mum decided she will use it if she goes on an outing, her scalp is rather red itchy and irritated so its better to just leave it alone. Her shedding has subsided. Her big shed was post EC ( 1st infusion ) after day 21+ Do you still get a big shed on day 21 + after the 2nd infusion or does it calm down ? Her 3rd and last EC infusion is 2 weeks away and i really hope the hair she has left stays put !
PBello - im so happy she continued too, even though her onco said there was no point to do so ( after she saw her big shed ) she persevered !!! She is 7 days post her 2nd EC infusion and she still has hair all over, even though its very thin and you can see through her scalp in some areas ( she's lost alot of her hair at the back of her neck ) but when its styled combed back or slicked back in a little low bun - to outsiders it looks totally normal - its just us who can tell because she was blessed with the most stunning thick straight hair so i think its comforting to her know she has hair and i really think she shouldn't give up CC for her last and 3rd infusion in 2 weeks !
Pamela - my mum has done the same and kept all her hair in a bag too. not sure what she's planning on doing with it, but before she started chemo she cut her long hair to a shoulder length bob and donated it ! Also you hair cut is gorgeous - super chic x
Sending you all big hugs !
Xx
0 -
ItsStilMe - My dermatologist confirmed my self diagnosis of seborrheic dermatitis of the scalp. He prescribed a topical steroid solution, clobetasol propionate, in liquid form. It comes in what looks like an oversized bottle of eyedrops and the solution contains alcohol, so it doesn't make your scalp/hair greasy. I applied this twice a day initially and am still applying it once a day. (I've also used a 50/50 mix of apple cider vinegar and water a couple of times, leaving it on for about 5 minutes before washing.)
He also recommended that I buy 3 different types of dandruff shampoo and rotate them each week so that the dermatitis yeast isn't able to build up a resistance to the active ingredient in any single brand. I am using Nizoral, Head & Shoulders and Selsun Blue, washing gently every 2-3 days. I've used Neutrogena T-Sal shampoo a couple of times as well, which does a good job of getting rid of the scalp buildup.
Although I am well aware that all of this is against many of the cold capping hair care rules, I haven't notice any ill effects on my hair other than it's being possibly a bit drier/frizzier than when I was using the Kenra shampoo once or twice a week.
I am just about certain that the severe shedding I was having before/during/after Round 2 was caused by scalp inflammation from the dermatitis, not failure of the cold caps. That shed resulted in the loss of about 50% of my hair, with a noticeable thin spot on top. So I had no choice but to take drastic measures! And felt that under the circumstances, I didn't have much to lose.
I am now having only the "normal" shedding that I had when I shampooed daily pre-chemo, so the hair I have left is hanging on quite well. My hair and scalp are clean and my scalp is no longer itchy, which makes me much happier and more comfortable. Your mileage may vary, but I wanted to share my experience.
0 -
Rockcity, please let us know when you are going in for your next chemo session. Want to send you warm and calm vibes! (that + ativan and tylenol will hopefully do the trick!)
Hope all the other new cappers are doing ok.
Magari, so glad things have calmed down on your head!
Pamela, you look great!!!
It'sStillMe-thanks so much for asking about my re-excision. The margins were clear! I haven't met with the surgeon yet bc he was out of town this week but see him Monday as I still have some questions about the report.
So I broke down and bought the wow root powder and rita hazan spray today. both in dark blonde bc my red hair is not red enough to use the "red/auburn" colors. Hoping one (or both) of them will work for me. Wish me luck!
0 -
I experienced severe nausea on 3rd cold capping - there were a few moments that I thought I would just rip it off my head, I couldn't stand it anymore. In fact, the idea is so ingrained that I can barely read this thread or think about the caps and I get nauseous so it is totally a mind-thing.
I figure I can handle one last EC with the cap (and heavy meds) but I am thinking of throwing in the towel for the 12 weekly paciltaxel - although the post-infusion time is lowered by 1/2 hour, the infusion time compared to EC is longer -- so still a 3 hours deal!l The top of my head is showing a lot of loss and I am still plucking hairs off me all day long, in fact, I am going to get a hair topper so I can leave the house without looking ill.
People have made comments that hair growth occurred during paclitaxel. Has anyone done the capping for the uglier stuff and not the weeklies and have had good results?
On the Latisse front - my eye doctor doesn't think it will do anything to stop lash loss, but did say to use it when new ones are growing in. So far, my lashes, like my mustache, are still hanging on.
All the root colors for blonds make me look like I have an orange stripe down my head
Loveandlight - have mamma hang in there! She is over the hurdle, right? What is she doing after EC?
I scrolled and saw proton therapy --- has anyone gotten the real deal on efficacy? My MO mentioned that like anything new, the results are not in (yet my clinic is working on outfitting one for 2020). I wonder how it works if all nodes were taken out....
xx to all ---
0 -
Hi Amelia !
Im so sorry you're feeling nauseous with the cold capping - that was one of my mums fears too but she seems to be managing ok, they give her anti sickness pre meds and also takes 2 pain killers 20 mins before capping and 4 drops of CBD oil and she's good to go. She has her 3rd and last EC infusion on 2 weeks then she will start a weekly taxol treatment for 12 weeks, she also said the same thing you did she doesn't know if she can do CC every week. However if she still has hair by the end of EC she will consider it ! - i think you and my momma have the same treatment plan !
Also if you are looking at a root cover up, i bought my mum nanogen hair powder fibres its 100% natural and their colours seem well pigmented and you can mix and match colours to get your desired hair colour ! - i got it off amazon il let you know once she uses it !
Hang in there ! sending you big hugs ! Xx
0 -
Morning!! Has ANYONE tried capping with Halaven/ Ebulerin? I haven't ever seen it on here....help.
0 -
teacher mom, I have not seen any mention of those drugs here. You might try contacting Penguin Cold Caps to see if they have any data on that
0 -
Patin...i did ask. Rep is not the friendliest and she said that like all treatments, they have had success. Ugh, I really just want some feed back if this huge financial burden will be worth it. It's a lot and my husband is awesome, and would do anything, but I hate to have him take on this financial burdens fornothing 😔
0 -
Amelia01- I thought I was the only person who got very sick from the cold capping. The rep for PCC said she’s only heard of it happening a few times. Lucky us. My treatments are 3 weeks apart so I have time to recover and anticipate with fear the next round. I hid all cold capping gear in my basement so I’m not constantly reminded of infusion day! Hopefully for both of us the capping nausea was a one time thing and we can finish this with hair. I have 10 days until round 2 . I’ll let u know how it goes. Keep me posted
0 -
Teachermom- try calling arctic cold caps to ask. They have been super helpful and friendly when I have called. There are also subsidies available to help with the cost if you qualify (hairtostay.org).
0 -
Teachermom--is your cold cap rep from Michigan by any chance? A few of us used the same one last year and she was NOT overly friendly at all.
Loveandlight--I'm so glad your mom kept with the cold capping. As much as a despise my short hair--I have NOT cut it--it fell out and that's just the new growth, I could have SO far behind where I am a year out. I have 5 inches of new growth on 75% of my head. Thank goodness the other 25% is longer to allow me to look like I have long hair in a baseball cap and to blend in when I wear my halo extensions. I think the bag thing is to keep it in perspective. It let me have a tangible measurement of what was going on.
0 -
teachermom - Penguin also offers used caps for $300 per month. They don’t advertise them and they are tested and guaranteed to work like the new ones. I used them.
0 -
Hi cold Cappers! I'm finally feeling like myself today. The SEs were mainly nausea (even taking anti nausea meds) and extreme tiredness. But thank goodness I'm much better today and now I know what to expect going forward. My hair looks fine, oily since I'm only washing it twice a week, but it's still there. I haven't gone through the big shed yet as It's only been 5 days since the first chemo treatment. From what you have all told me, I should expect it around day 21. I'm treating it like a newborn baby - being delicate, combing it slowly and gently to make sure no knots form, and keeping my headband away from the sun.
Teachermom - my chemo is different than yours so I don't know how effective cold capping would be for you. Like the others, I suggest reaching out to the different companies (penguin, Dignicap, Paxman, arctic) to see if they have any info.
Rockcity - I'm glad you have a new plan for your next cold capping. I hope you don't feel any nausea going forward.
Amelia - sorry you felt so bad during your 3rd capping. I hope the next one is better.
Magari - happy to hear your scalp is doing better! Seems you took control of the situation. Awesome!
Shlomit - I hope the big shed quickly slowed down for you and you didn't loose too many hairs.
Itstillme - hope you're feeling better from your last infusion.
Hope you are all having a great weekend! Sending hugs to all you strong ladies!
0 -
Happy Sunday everyone!
A big DITTO to everything Pbello shared! Glad everyone is staying strong through their treatments and charging through with their capping!
Love &Light-- I can't wait to hear how the fibers work on your mum's hair. Please keep us posted and even send pics if you can! For me, I did shed more on the 21st day after each treatment, but never as much as the first time. Day 21 past my last treatment is coming up and I will let you all know how the shed goes. I'm still losing a nice hairball everyday.
ItsStillMe-- Sooo happy you are all done! I owe you a PM to discuss liver enzymes and blood counts.... I'm on it! I'm just glad my 6TC sister has crossed the finish line too! 😘
I've just been busy trying to get my rads situation all lined up. Also had a brain MRI yesterday....doc just wanted to cover all bases he said. I think it's because I complained of headaches throughout my treatment. Praying all is clear. And I'm just so proud of how all of you have handled your 1st treatments and capping! Things will be over before you know it!
Did any of you all see the pic that Julia Louis Dreyfus posted post chemo? She apparently was capping too! Not sure which she used and I don't think she has reported such, but when you see the candid shots of her taken during chemo, you can see how she is rocking her grey roots and such like many of us have to do while going through this process. Anyway, she looks amazing! Certainly not like someone who has been through chemo! You can google and check it out!
Have a blessed week everyone!! 👍🏼🙏🏻😃
0 -
Happy Sunday MamaFelice!! Really appreciate hearing from you and the others who are now PFC as it gives us so much hope!
Also am finding your comments on shedding to be particularly timely and also promising. Last Wednesday was Day 19 following my first treatment, and like clockwork, the lightest combing (with only the wide toothed comb) started the major shed. My last wet hair wash was the day before (3 days prior to Friday's 2d treatment) with only relatively light (usual) hair loss. I've been trying to limit combing to once/day; this morning, I used the spray-on leave-in conditioner, but there's still quite a bit coming out (I won't even go into how much is all over my night shirt). So, I'm finding your words that the 1st shed is -- or at least was for you -- the heaviest to be comforting. Hoping this level of shedding isn't something I'll start over again on Day 19 from this past Friday. Meanwhile, I keep telling myself that had I not capped (Arctic), I'd pretty much have nothing left, and it keeps me moving on.
And, yes, I also figured Julia Louis Dreyfus had to have used cold capping. Hope that, in time, she'll be comfortable in talking about it, and helping to better publicize this option.
0 -
Can someone define "shedding" as opposed to every time I comb hair comes out?
And why do I still have body hair post 3rd round EC? I thought that was supposed to go (wondering if the hair on my head is reflecting the body permanence and maybe the capping isn't doing anything after all?)
My scalp is hurting on top and is really showing through the top of my head. Having to go for a topper this week. It is now too warm for a winter hat but too cold for a straw one ---- cute hat suggestions for spring anyone?
Did anyone else use Dignicap on weekly paclitaxels? What was the post infusion time?
Shlomit - I keep telling myself the same thing ... at least I've been spared baldness for the past two months although now I am looking ill whereas with a lovely wig I would look presentable for the outside world.
0
