Cold Caps Users Past and Present, to Save Hair
Comments
-
Larry, I’m sorry your wife is dealing with BC again. I don’t have any insight on cold cap effectiveness in your wife’s situation, but I know there are some women posting here who also had recurrences. Hopefully they will come along and answer. I was 60 when I was diagnosed, and turned 61just before completing chemo. I used Penguin cold caps with great success, but I had the “easier” regimen of weekly taxol. Does your wife’s facility offer the machine-type cold caps? It sounds like getting the right fit with those caps is very important. Penguin caps are designed to fit most head sizes and shapes.
0 -
Did anyone else use the Dignicap for both AC and Weekly Taxol?
Was it the new reconfigured cap or the old cap? I’m wondering about sizing and fit.
0 -
Engine104 - Sorry to hear that your wife is having a recurrence. I also had a recurrence last year, at age 59, after 15 years cancer free. I believe and I hope your wife will be saving the hair she currently has by cold caping. Even if she sheds while cold caping, like I did, she will save her hair follicles for hair regrowth. Feel free to send me a private message, as I don’t check this forum often. Also, check out the pictures I posted under “Cold Cap Before and After Photos”. You will find also pictures of other girls that didnt shed as much as I did. Praying for you and your wife to have strength and perfect recovery
Mama Felice - Beautiful pictures. How long is your halo? I am planning to purchase a HiddenCrown halo soon. I am so undecisive and keep going between 12 and 16 inches. Other times think 14 would be perfect, but haven’t found 14” halos with 120 - 140 grams.
0 -
Hello, all! It's been a while since I have checked in. Started back at work a little more than a week ago, wearing a wig.
I'm not quite 7 weeks PFC. The texture of my remaining hair (about 50%, which used to be quite thick and coarse, with a slight natural wave) is much finer and "fluffier" than prechemo - a bit like candy floss. And there is a good bit of gray which I can't yet color, so not really the look I am going for. But I am grateful to have hair at all.
Although I am still shedding quite a bit I am also starting to have some hair regrowth that I can see, especially above my ears. The thin spot on top is still there but lots of short sprouts are popping up. Had enough stubble that I had to shave my legs for the first time in months a couple of days ago. Eyebrows are making an uneven comeback, but the microblading helps. My lashes still have gaps that are taking longer to fill in.
0 -
Amelia01, I used Dignicap (the old style) for 4 ACs plus 12 weekly taxol treatments. I wore the yellow cap which I believe is the medium size. It fit pretty well, but there was a gap at the top of my head. At first the nurses were putting a "pad" there but they ran out of them and I did a few treatments with nothing there. When one of the other nurses realized that was happening, she would put a folded washcloth there. I will say that having something there is important, to prevent that gapping. My biggest balding spot was right there. I lost at least 50%, maybe more like 60 to 70% of my hair. I had long thick hair and it thinned to the point that i looked terribly sick. So, I wore a wig from August (about halfway through my treatments) through mid-December. By December I had enough new growth to get a short pixie cut and feel presentable. I did not get the results I wanted (keeping more hair and avoiding a wig), but I'm still glad I did the cold-capping. Not having to start the regrowth from "nothing" has been great and I only had to wear the wig a short time. If you have any questions, I'll be glad to help.
0 -
I am on day 27 after chemo 1/4 TC and have been shedding large clumps since day 20. No sign of it slowing down. I am using the Paxman System. I still have hair but it is thin. I am covered in hair all the time. My brother hasn’t kindly offered to lend me his Davey Crocket raccoon hat to wear. I think I will pass, haha.
I am going to try and persevere but it is getting tough! Anyone still have large shedding at day 27 that slowed down? Either way, I’m glad I scalp cooled!! So many women have success and I truly feel my hair will at the very least grow back quicker. I will post updates regarding regrowth too.
0 -
I have one more dose dense Taxol and then I am done with DD AC and T!!
I used Dignicap.
Have any cold cap veterans used rogaine or other methods after chemo to help hair growth?
I have balding on top and back (ACT standard cold cap shed) and my once thick hair is reduced to two small side ponytails. My hairdresser said she could not to a topper yet as she was worred how fragile my hair is.
Any topper users, when did you start using it?
I live in Florida and my straw hat has me looking like Paddington goes on vacation! Ugh.
0 -
So I am am looking for some advice. I am day 27 of chemo #1 of 4 with chemo #2 on Wednesday. I am using Paxman and have lost 50% of my hair by now. It is quite thin and I have bald spots on top. I am 33, hadn’t color treated my hair in 10 years. My hair is rather fine to begin with and wavy. I am losing so much hair so fast that it keeps matting and getting tangled in the bottom. I am untangling matted knots with my hands every few hours at least, and clumps keep coming out with it. I had my hair cut to my collarbone pre-chemo. I am washing once a week, gentle, no styling. Following the rules, but the shedding isn’t slowing down. I am having a pretty hard time with this and I am debating going out to get my hair cut cut to my ears at least to help with the matting. Any thoughts?
I know people say not to cut but I can’t take this matting much longer. And I have tried loose braids however the matting was so bad when I tried to take the braids out that the braids almost became permanent dreads. I sincerely appreciate any thoughts or insight. Thank you!!!
0 -
toughcookie- i would give it a few more days, hang in there. I think I slowed down day 27 or 28 if I can remember.
Shortney- I would love to know the same. My hair in the back if my head is pretty thin and I really need coverage...so I'm getting my wig ( which I never wore bc I hated and felt it was super heavy) into a lighter topper this week for when I go out for occasions or when I go back to work. I was thinking a few clips wont totally make or break my hair? I'm a 11 days pfc
0 -
Happy Day ladies! Sorry it has taken me so long to respond and thank you all for your lovely comments and support! I had actually written a very long post on Saturday, but something glitches and it erased! I was so bummed and had to go to bed. Anyways, to answer Jlove's question-- I had researched tons of sellers of halos and toppers on Etsy and chose to reach out to Lorichelle of Blonde City because she had all positive reviews about both how lovely her product and service were. She bent over backwards to ensure she matched my color perfectly, and it did! I have a thick 14" long human hair halo (Cali--don't know the weight in grams but it is thick and I can find out) and I paid around $140 for it. If you are looking into a halo or topper, please check out and contact Lorichelle with any questions you might have-- she is so helpful! Link at bottom of post
Below is a before hair pic taken a couple of years ago. You can see I have thick wavy hair. Mine has thinned out considerably, and still shedding, but I still have some hanging in there. I'll take and post a pic of my hair without the halo next. So many pics-- you all must be tired of seeing my face!
Schlomit-- How's your infection healing? Thinking of you!🙂
Maggie-- how you manage through 1st treatment? WoooHooo-- One down! Yay! How's your scalp feeling?
Magari-- great to hear from you! I can hardly believe 7 weeks PFC! Glad you are thriving! 👍🏼😃
Lizabeth-- so happy to hear from you too--& thanks for sharing your 15 weeks PFC slowdown on the shedding....I'm so ready for it to stop. I wonder if mine will go longer since I had 2 additional TC? Fingers crossed I'm almost there!
Toughcookie-- I hate to hear you feel your shedding is still rather heavy. I remember thinking I would be bald after 2 treatments at the rate my hair was falling out, but my husband would say how no one else would be able to notice I have lost so much and I was my own worst critic. Please gather in your sink the hair you are losing in the day and post a pic. I imagine you will hear from ladies having had the same. Thinking of you as you head for #2!
I'm off to bed! Need to rest while managing these rads! Love and Happy Hair days to you all!
https://www.etsy.com/shop/BlondeCity?ref=shop_sugg
0 -
MamaFelice - looking great as always!!!! Thanks for sharing the hair halo maker with us. I'm guessing I will need to wear one for years until the sprouts get long enough for extensions.
Thanks SoniaL for writing. Just yesterday at the clinic I was showed a photo of a client who hadn't lost really anything during 4ECs, then again. I was looking fine enough to go out without any head covering until about 2 weeks post final EC and then it just kept on coming. I still have some left on the sides front and back but have a large void on the top of my head and look very sickly even if I were just to wear a baseball cap. I could feel it was never totally adhering to my head because when I would squish it against my head it would get colder so there were for sure gaps. I was wearing the M and then the technicians tried to convince me to do M inner and L outer and that was the biggest mistake. I think that is why I ended up losing more along my ears. I even tried the S but it was not the shape of a head and may have been disastrous. I was pretty upset that Dignicap said they'd outfit US clinics with the new fitting caps then work on European ones.
I skipped Taxol no 6 yesterday for low neutrophils and have 6 more left. I guess I will persevere, but it is the part of chemo I cannot tollerate.
ToughCookie - I am using a different system, but to be honest, there is never a moment when I do my comb through that no hairs come out. They are fewer because I have fewer left on my head but there is a daily loss. Like you said, it should be helpful for regrowth! I hope I can come back in a few weeks to say it is true!
Ok --- I know I've asked before, but is anyone else perplexed why body hair remains and head hair doesn't? There was a time during my past 4 months of chemo that all hair just stopped growing (I'm thinking of last leg shave Dec 31). For weeks on end it was like a two day stubble but never fell out. Somewhere along these months leg hair came back sparsely (nether regions still baby smooth) and I've never lost any armhair or my (albeit blond) mustache. But my biggest perplexity of all is how on earth is it possible that I have one totally smooth armpit and the other (the operated side isn't!). Gross, TMI aside, does this mean the chemo isn't getting to the area where it needs to go? Having had full AND I've been told never to shave that armpit again (electric razor ok, maybe nair ok) and I've actually been afraid to do anything on it in these months post op, but how can the chemo be discriminatory like this? I am honestly wondering if the operation has rerouted blood flow and this area is not getting any. This is why radiation is probably very important but of all the zones where the chemo should be chopping away on any rogue cells, it is right there where it all started. How odd. I also wonder why with the fragility of leg hair why just putting on a pair of jeans doesn't rub it all off when just baby combing my hair makes that hair just drop to the ground.
Just a ramble and rant .....
0 -
Thank you all for the comments! My hair becomes matted after a matter of an hour or two. I untangle with my hands and it becomes matted again. I bought heavy duty detangler yesterday (faut pas, I know, but I got desperate) and am using it on the ends.
This photo of the clump one of my several clumps from yesterday (day 27). This one was bigger than the rest of yesterday's clumps since it was in the morning and after I undid the braids that had become dreads, but the rest weren't that small either. I always have at least 30 hairs hanging off the bottom, I pull them out and five minutes later there are more. Brushing Is a nightmare (I gently use a wide tooth comb). With the amount of hair I am losing it is honestly a miracle i even have one hair left.
0 -
Amelia01, although that is interesting about the armpit hair, one thing I have learned is that nothing about this experience or side effects is standard. Although whatever message your armpit is getting I'd like to send to my scalp.
I think the chemo is still getting there! All of my leg hair stopped growing and most fell out before week two, with the exception of around my ankles. Who knows!!0 -
Hi Everyone!
MamaFelice - I always love seeing your smiling face and reading your uplifting comments!
Amelia - I recommend you talk to your MO or the infusion nurses about your hair loss questions - especially the armpit one. My MO and the infusion staff know I was an RN, so I didn't want to ask "stupid" questions.... but it really bugged me not knowing why the baby fine hairs on my arms and my eye lashes didn't change during 4 rounds of TC, but my groin and leg hairs were gone before my first "big shed". My MO told me that hair on different parts of your body have different growth rates so the chemo affects them differently. I know that my finger and toe nails grow at different speeds between the right and left side of my body, so maybe the same is true for hair. It sounds like it is really on your mind and you are worried about the chemo reaching where it needs to kill the cancer cells - so please ask! I never did lose my arm hair, but my eyelashes fell out about a month or so PFC.
Someone from my August chemo group suggested making an Epsom salts scrub (just a little water added to make a nice thick paste) and using that on day 3 when the body is excreting some of the chemo through the skin (that's why you shampoo that day). I added a few drops of essential oil for scent, would slather on my arms and legs and let sit for 5 min or so and then exfoliate with the scrub before rinsing off in the shower. It felt great and also got rid of the straggler leg hairs that were still clinging on. Maybe that would work on armpit hair???
Toughcookie - sorry to hear you are dealing with so many tangles and not seeing a slow down yet! I lost about 60-70% of my hair with 4 TC and the PFC shedding, and was losing so much on a daily basis that I seriously considered quitting and just shaving my head so I didn't have to deal with the constant fallout. I'm very glad I didn't!!!!! because I started growing new hair while I was receiving chemo, and I didn't seem to lose any of the new hairs. Even though they are still short, the new hairs have added so much fullness at my scalp! It seems like > 2" but it is growing out curly, so it's hard to tell exact length. At 6 months PFC, my stylist gave me a great cut to even things up and make the most of the new growth (and covered the gray - woohoo!), so while I don't have a ton of long hair left, I can wear my hair down and feel pretty good about it. If I had given up on capping, I would probably have a 1" or so buzz cut right now, and I am NOT one of the ladies that can rock that sort of look
Hang in there and I hope the tangling/shedding stops soon!
Willow
0 -
Willow, thank you for the message!!! That put a smile on my face and gave me hope. I considered shaving my head too. I can’t take he massive clumps and always being covered in hair. To be honest today I almost shaved my head. However I went to a hair salon that specializes in hair loss and got a gentle, dry cut. They took it above my shoulders and they were great!! They also recommended anither root cover up for my bald spots and I feel a bit better today. However I think I have lost 50% already. But I will keep cold capping. I have also been dousing my ends in detangler spray now. Haha. I feel at this point if I can get my with some hair poking out from under a head covering and have it go grow back quicker that is all I can hope for. I swear every bad hair day after this will still make me smile ear to ear.
0 -
Shortney- I purchased a topper. I did the one that gets installed onto your existing hair with tiny grommets so hair needs to be decently stable. I purchased it 2 months PFC but it took a month to arrive to hairdresser..so I had it attached at 3 months PFC. I've had it for a month now and mostly LOVE it. I can't wait to get it taken off and reinstalled next month and see what growth I've had on my bald spots! It does get itchy underneath but I love having the volume and my bald spots covered up!! I'm still shedding some but I don't think its any worse because of the topper
0 -
For all but for Maggie especially: If it is ears you want to cover, I found a great solution at Walgreens. I bought a blue neoprene sleep mask and cut it at the bridge of the nose. Then I had a shoe repair punch two holes in the eye covers and used them to cover my ears with the elastic strap velcroed together running at the base of my hairline around my neck. They did need to be repositioned with each cap change but worked perfectly to keep ears from frostbite and being able to hear a bit.
Also, previously posted but worth mentioning again: a couple things about washing: 1. I have (had) really oily, daily to maybe every other day, washed hair and can totally tell you it is gospel truth that you will be able to wash every 3-6 days toward the middle to end of chemo. That's how dry it gets. 2. Hair washing days are the worst and lowest part of your week during chemo due to them being the highest shed days, so it's best to push it as you can & plan your shampoos according to when you want to look your best. 3. Yes, agree with not bending over to wash hair, just suck it up and stand under the barely lukewarm shower-SO much less tangling (I tried both ways personally)
0 -
ToughCookie- have been in your “how do I have one hair left on my head” space more times than I can count. I am now 8 was post chemo, ended up with a crown bald spot now filling in with 1/2” of hair that is less than desirable color and texture-wise but no longer have to wear toppix. I lost about 50% total volume overall, so am happy to have invested in a human hair topper to cover the mess on top and lets me look ‘normal’ (as much as that is possible these days!) in public.
Like my cold capping mentor says: A bad hair day is better than a no hair day.
It’s true in the long run, just doesn’t always feel like it. Hang in there everyone, you’ll be happy you did.
Congrats to all who have begun their journey and to all who have finished. We’ve got this.
0 -
Thank you all for the helpful tips. It made my first cold-capping go much smoother. I will have to check out the eye mask that 2catsintheyard suggested and see if hubby wants to work with that idea.
I did not handle the chemo well this weekend. This is my first time back on the posts. Sunday was post infusion shampoo day, but I couldn not even contemplate shampooing. Thankfully, I’ve been improving yesterday and today. I shampooed yesterday, but my hair already looks very dirty. Like some of you, I’m used to shampooing every other day. On a positive note, if I’m not shampooing, at least I can take a nice warm shower!
It’s a trivial question, but is Chemo Day considered Day One? Or is Day One the day after infusion?
0 -
maggie2- chemo day is day1. Glad you are feeling better with your side effects. You will learn how to manage them as you continue through chemo. I was always a daily hair washer before I started chemo. After a few weeks of chemo it gets easier to let more days go between washings. Your hair will dry out. For now, it’s just tough to have a dirty scalp. Hang in there That said I’m on day 85 and miss the frequent washings and using a blow dryer. My hair is always messy. But at least I have hair to be messy. Good luck with your chemo and coldcapping.
0 -
The drain came out today! The surgeon said the incision looked good. Now, it is on to start chemo on Thursday. All in all, my wife only had to take the pain meds three days right after surgery. The drain was the biggest issue, not that it was painful, just a nuisance.
0 -
shortney and jlove- I got my topper about round 5 of 6 (in February after starting chemo in November), but didn’t wear it until Pfc -too chicken. I was still working and couldn’t get away with the toppix + comb over I had been doing for months prior to cover the bald crown by March though so I first wore it to work about 1 or 2 weeks Pfc. Have never noticed any increased shed. March was still cool here in Phoenix so I don’t think it contributed to heat higher than body temp. Since heat is a no-no, I guess that wearing it hours on end outside on a hot day would not be my recommendation, but other than that, as long as you are gentle and in A/C, can’t see a downside myself.
That’s my unprofessional opinion.
0 -
MamaFelice -you look fantastic! I don’t look quite that good yet, but I’m getting there...
0 -
Hi toughcookie. I am on dose dense Taxol as adjuvant chemo for ovarian. Gave Penguin Cold Caps a try. After my first treatment, I had major shed about 19 days after and shed seemed to last for 2 weeks. Lost about 60% - 70% of my hair during that time and I too followed all instructions to the letter. The shed will slow down. I just had treatment 3 out of 6 yesterday. My cold capping helper said I could use a silk scarf that would be tied loosely over my head. I haven't given up the cold capping as I do still have some hair and I've read on this forum that hair can grow back quickly post treatment. Hang in there!!
0 -
NoRogueCells - Thank you so much for the message! It certainly gives me hope! I am now 30 days post chemo #1 and two days post chemo #2. I have two rounds left!! We are both at the half way mark.
I also stared shedding clumps around day 19 and although I am still shedding a fair amount the clumps are smaller in size. I’m hoping it will keep slowing down and your story does give me hope the shedding will slow down! So thank you so much!!! I have also heard of the hair growing back way faster with cold capping, even sometimes during Taxol! We’ll get through this.
0 -
I'm throwing in the towel! I am now 35 days post chemo #1 and 7 days post chemo #2 and have been shedding large clumps daily since day 19/20 with no end in sight. I ended up in the hospital again after chemo #2 (still there now), but once I'm out I shave! I can't tak these clumps anymore. I might still cold cap since I rented the machine anyhow and to try and promote faster hair regrowth. They now think I am having a poor immune reaction to the Cytoxan so I might have to change chemo protocols anyhow. Any recommendations on what I could use to protect my scalp to keep cold capping? I might leave about an inch of hair, not like I have much head covering anyhow.
0 -
ToughCookie - I fully understand your situation! I've done 4 Ecs and 6 Taxol and at every single daily combing I have hair coming out. I can't believe there will be any left at the end or in the months post chemo when it still sheds. The probably is that the hair bulbs have endured a lot of stress. We also lose about 100 hairs every day (so I've read) but with us, those 100 are precious and new ones aren't taking their place, yet!
To be perfectly honest, I think the cold capping just works better on some people and some of the chemos just are too destructive to have it help much at all. I have a lot less than you May 1st photo and I am holding dearly onto the remaining strands.
I also feel that that some new hair (albeit grey!) is growing now that I am doing Taxol. Do you have to do Taxol as well?
To protect your scalp from freezer burn place gauze on it. Can you do a shoulder length cut just to take some of the weight off or a chinline length? You might be happier than going for a 1" look. You've made it through 2 sessions, you can do 2 more!
I had my first cold capping nightmare last night. I dreamt the machine gave out during and it was up to 15° and I dragged it around the clinic trying to get some help.
I have also thought of throwing in the towel during Taxol, having heard that many don't even loose hair during the weeklies. I hate that machine. I hate the sound. I hate being pinned down for what turns out to be almost 3 hours!
0 -
Amelia - Thank you for the response.
I am losing hamster sized clumps from just breathing! I barely even brush my hair. My May 1st photo was sad after only one round of chemo (day 28)...lol. I am now 37 days past round 1 and 9 days past round two so have way less hair, lol. I will post a pic a bit late. I am still losing clumps of hair just from breathing, but they are on the smaller size at least. I agree, I think the cold capping surely does just work better for some. I'm sure me getting so sick and constantly ending up in the hospital throwing up water isn't adding to the health of my hair. I have also heard that Neupogen doesn't help with the hair, however I'm sure it is more the chemo.
Thank you for the recommendation regarding gauze, I will try that. I did actually cut my hair to above my collar bone pre-chemo. Then about 30 days in to chemo when it kept getting so matted and I almost gave up, I got it cut to above my shoulders (kind of between my shoulders and chin). It was getting so bad that my hair would be matted from clumps in a matter of an hour. I would remove the mats, and they would be back an hour later. My hair was literally like a carpet. I tried lose braids one day to help it, big mistake! The braid became one with my hair, lol. When I was in the hospital earlier this week the clumps stressed me out so much, and my health was terrible. I just wanted to cut it off. My only saving grace was to wear my silk sleep cap for three days straight to not see it. I fear that since my first big shed was so terrible it will keep going. However part of me is holding on to the thought that maybe my damaged follicles dropped fast and the good ones will now stay, lol. I know wearing head covers is a no no, as is touching the hair, but I have to do both now. I have to get these clumps out and cover my bald head in public. I wear a buff and leave my what seems like 12 strands sticking out, lol. I may cut shorter but will keep cold capping at least for quicker regrowth and to protect from the possible permanent hair issues from Taxotere.
How many more rounds of Taxol do you have? I don't have to do Taxol, just the four rounds of Taxotere Cytoxan. Although I keep getting so sick my MO might change my regimen. I find out tomorrow. Yay for the new hair growth!! I have two friends who that happened to on Taxol. We're one step closer!!!
0 -
toughcookie - I'm sorry you've had such bad side effects & health problems wirh chemo, and then having to deal with matting and so much shedding too... it's not fair and really sucks!
Have the Paxman reps been any help for thetangles or continued shedding? May I ask what your capping schedule is like during & after chemo? I did Penguin cold caps for 4 TC and I'm wondering whether the timing is the same or the paxman system is different.
Hugs to you!
Willow
0 -
Willow - Thank you!It's been a rough ride! I am curious to see what my MO says tomorrow about going forward.
The Paxman reps recommended braiding my hair, which I had already tried and didn't work. They also recommended some detangling speaks to help. They seem to think that I essentially just got obliterated with chemo, which by my side effects makes sense. I seem to bounce back fast at least, so I am hoping I won't have any long term side effects. This hair better grow back and fast! For round 1 I pre-cooled for 30 minutes and post-cooled for 2 hours, then round 2 I upped it and pre-cooled for 45 minutes and post-cooled for 2.5 hours. I well be doing this going forward if I continue. I feel like a lot of Penguin cappers post cool longer.
0
