Cold Caps Users Past and Present, to Save Hair
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hi magari, i think it is to minimize stress to the weakened hair bulbs. Especially with longer or thicker hair, when it is wet it will be heavier than dry. There's the expected shedding, but i think every time you handle your hair you also can lose hairs that were still attached to the head.
Willow
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Good morning ladies! One week post TC #3 here! Finally feeling better all around, and hair on head sure makes me feel like $1,000,000 every day! Amazes me all the strands that find their way out each day-- dread my morning comb, but don't want dreadlocks-- but still hanging on strong! Hair sure does feel soft from washing so much less... May be something I try more often in the future!
Lizabeth-- Love your positive attitude! Keep that up because it is so powerful on this journey! I will be having 6 TC total, and I had #3 last week. 1/2-Way--Yay! Holidays seem to make days/weeks just fly by! I think it is great that you and your husband have WF not too far from you-- it's like making a special road trip every 3 weeks. That's how I look at my frequent hops up to Duke. I really feel blessed by the surgeon I have worked with there. Besides, my daughter is in her sophomore year of HS and it gives us time to tour a diff NC college when we head to that area. 😃 Always find a bright side!
Hmmmmm.... Hair washing.... boy do I want to wash my hair more than they suggest! I follow the PCC must wash days around chemo for sure. After that, I usually go every 5 days....or stretch because I know I'm going to take on heavy workout and really sweat on day 7 and would want to wash after. We are lucky it is winter. For me the washing thing would be much more difficult in summer or if lived in Florida where my head sweats just walking outside (I'm a Floridian for 30years pre NC).
Willow-- Always so great to hear from you! Can't believe you are Still shedding! Is there a number of weeks PFC that it typically halts or slows down?! Luckily you have such thick hair to keep up with the shedding! Have you had any trims/cuts PFC to your hair? Did you ever during? Mine is in long layers, and I'm debating having my stylist give it gentle dry 1/2" trims here and there to keep it looking full. Would love your thoughts/feedback....or anyone's on this matter would be welcome. 😌
Cat lady-- pics are fantastic and I only hope to have results as successful as yours! I know it is probably not your ideal hairdo, but your hair looks healthy and full! Pictures are always so encouraging-- thank you!
Cabland-- Speaking of pictures! What a lovely "recap" (ba da bump!) of your experience! Your husband's love for you pours out in his words! You look terrific, and I really like the twist you did in the back of your hair inplace of a ponytail. I will use such as mine thins. Thank you again, and will share your link with others in the future on this thread and other places! I've been taking oodles of pics each week to have on hand to look back on in the end - thanks again
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Can someone please help me? I am waiting for my call date to start chemo (EC 4x followed by 12 Taxol) and I don't have anyone to ask for information regarding my hair. Losing a breast isn't as big of a deal to me than losing my hair (my plan is to stay under a rock for the next 6-9 months if I'm not wanting to be seen). The clinic where I will be treated said that they have the cold caps but they didn't have great results during their trials (I assume there are different brands, some that work better than others?) and I would have to be approved to use theirs (supposing there is a waiting list). I've read that the Paxman cap does work, how about the Dignicap? What do I do if I'm approved? Do I cut my long hair to a short bob in order to lighten the weight? Do I highlight or get my roots done right before so I have some sort of normalcy? Do I buy a wig and get a cut that resembles it just in case? Any eyebrow / eyelash tips? I don't even leave the house without mascara, go figure without eyelashes
Life's problems are much bigger now. This sucks. As I am making the efforts to look at anything positive at least I'll be happy to loose the mustache. 0 -
I had cold cap this summer in the UK. The nurse would wet my hair and then put loads of hair conditioner on my hair before putting the cap on. I sat with the cap working for 30 minutes before the treatment was given and then sat for a further hour and a half after the treatment had been administered with the cap on. I had a small amount of hair thinning on my crown that I noticed but the man in the street wouldn't have known. I saw my mother who I haven't told and she didn't notice anything wrong. I would thoroughly recommend going for cold cap it meant so much to me not losing my hair.
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Magari, it looks like you are about day 10 or so after your first chemo???? If so and you are like me, your hair will become MUCH drier from the chemo, and will be surprisingly presentable with washing only every 5 days to 1 week. At my driest point towards the end of chemo, I went 8-9 days without washing, and no one knew. I was SHOCKED! Now that I am 2months PFC, my scalp and hair is getting a little more moisture back, and I wash about every 5 days.
MamaFelice - love your posts! You always brighten my day
I had a couple bang trims during chemo, and then just this week had about 1" trimmed off the ends and the layers lightened up. It looks a lot fuller and camouflages the skimpy areas much better, but I need to get some aloe to the ends a bit.... With the moisture in the air, I kinda looked like a dandelion puffball. I washed my hair at home and arrived with it slightly damp, and then my stylist very gently used her wide comb/fingers for parting/etc. no styling or products, but felt awesome to leave with a new look! Will post a photo when I have time.Amelia, I had a different chemo regimen, so I don't know what results are typical for your meds... hopefully someone else on the board can speak to that. I don't know what your infusion center charges for capping (I think others have said something around $500 per session), but you could also check into renting caps through Penguin cold caps (they offer a "used" rental for $300 per month vs the "new from factory caps" at $500 per month. I wish I had known about the discount prior to ordering mine, but even at full price, I have been very happy I used them to cap). You have options available even if your infusion center says "you don't qualify for their system" or they try to discourage you! I think there's a bunch of capping info at the beginning of the thread (o r is it in a separate link?) and then you can also contact Penguin, Paxman or Dignicap representatives to get more info on those systems and what they say for your meds/hair type/etc. Best of luck to you ! Let us know if you have questions,
Willo
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Amelia - if you like, I can email you the cold capping hair care guide from Penguin - just send me a private message with your email address. I think most of the info is the same for using their caps and for a dignicap type machine system. Penguin and YouTube also have great videos of coldcapping if you want to see what is like.
Willow
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Dear NorfolkBikerChick, Welcome to the BCO community. We are so glad that you reached out with your story. We hope that you will stay active here. Let us know if there is anything we can do to help you to navigate the boards. The Mods
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I just finished round 4 of TCHP using Arctic Cold Caps, after 6 rounds I will go to just Herceptin and Perjeta. I remember them saying I could stop capping after the first 6, but Perjeta says it causes Hairloss. Did anyone quit capping during Perjeta??
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Amelia: FYI, I am doing Dignicap and the main difference in the recommendations is that Dignitana recommends that you wash your hair prior to treatment (i do it the night before, NO CONDITIONER) because they say that oily hair interferes with the cap making good contact/cooling the scalp. I spoke to them and they do acknowledge that Penguin's recs are different but they stand by their recommendation.
Re cutting your hair, I think the general recommendation is not to go too short, because as your hair thins, you will want the hair you have to cover what is missing. My oncologist told me it was fine to color one last time before treatment but i found too late that the capping companies recommend no harsh chemicals for up to 2 weeks before chemo (it's not clearly stated in the dignicap instructions). What I did was have my colorist color just around my part (on the side) to buy me some time before my roots started showing, but I would be able to move the part/cover the thin patch if I noticed any excess thinning. If you have time, I recommend you color now. So far (Day 28) I have had almost no thinning at all so unclear yet if the peroxide has made any difference.
The two main determinants, as far as I can tell, of whether you will have success are the type of chemo you are undergoing and how well your caps fit. There have been small studies which differentiate various chemo regimens, and i think you can find them on the penguin site. I see you will be taking taxol. I did not see any formal study for my particular chemo (weekly taxol + herceptin) although other taxanes were tested and seem to give the best results. At my hospital they have had very good results with the weekly taxol regimen. I am not sure how the other two drugs you will be taking might impact the results. The capping companies can probably tell you more.
i picked out a wig but did not purchase it. you definitely want to try on BEFORE you start treatment as you won't want to be pulling on your hair during treatment. you can also get free wigs from American Cancer Center and other organizations that collect used wigs from patients. I am a redhead so there weren't a lot of options for me for free wigs (and only human hair wigs can be colored, fyi).
All best to you as you begin treatment. I hope coldcapping will be an option for you!!!!
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Amelia - I would not cut my hair, I would leave it. I would not die your roots close to chemo -- however -- others have done it. You can find ways to to cover roots with colored powder spray.
I used Dignicap - it worked and glad that I did it. I do have very thin/thin spots on my crown. I can hide it with hair powder and 'the man on the street' can't tell, I just wish I could have prevented that -- I started with thin hair - so that might be the reason. If you clinic doesn't approve you -- you can do it on your own -- rent the caps directly - make it happen - you can do this. Also, I would change a clinic if they would not let me use them. It sounds like you are motivated - you can make it happen - just don't start chemo until you have to sorted -- has to be the first one.
In the end, cold capping is a process and a commitment. You have to want to deal with it more than losing your hair (anything to help keep my hair and/or accelerate growth post chemo - was very very important to me). It isn't perfect - your hair will thin -- it won't be the same to you -- others won't know as much.
You can do this! Lots and lots of on line resources - start with Repunzel project.
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Tonir24- I used cold caps for my 6 chemo cycles and then stopped cold capping and have done 3 cycles of Herceptin and Perjeta only. I lost very little hair during chemotherapy, but I was a big time rule follower and followed all the cold capping instructions. Now that I am just on the two targeted therapy drugs, I have been losing/shedding quite a bit of hair. It is not coming out in clumps but I am shedding more in a day than I did over the 4 1/2 months I was on chemo. I spoke with a friend who cold capped years ago and she said that she barely lost any hair during chemo and then lost about 30% post chemo. She thinks it is just your head shedding the dead hairs that everyone sheds on a daily basis that didn't come out during chemo because of the cold caps. My oncologist said that hairloss is a side effect of Perjeta, but that it is more of a mild hairloss/shedding. He said that it shouldn't cause major hairloss like chemo and that some of my shedding could be due to residual chemo in my system. Who knows?!?! All I know is that I still have enough hair that people don't think that I have been on chemo. We will see how much hair I have left at the end of May when I finish with Perjeta.
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Amelia- I had excellent success with Polar Cold Caps. Polar Cold Caps sends you everything you need including a laser thermometer, cooler, electric blanket, etc. The only thing they don't send you is the dry ice. You will need approximately 80 to 100 pounds of dry ice per cold capping session. They are more reasonable to rent than the other companies I found. Plus they include elastic straps to make the caps tight on your head. I lost almost no hair while cold capping. I did 6 cycles of TCHP. Be sure to follow all the instructions and guidelines. No heat on your head. Cold water for washing hair. Paraben free shampoo. Don't wash your hair more than twice a week. Etc. Be sure to continue cold capping for 3 hours after chemo infusion is complete. Watch as many "how to" videos on cold capping as well. Good luck!!!
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Ok, I have a question for you cold-cappers. Did you shed after your first treatment? I started shedding on Day 18 and have continued up until today, Day 23, a day past my second infusion. I am hoping that this is just what the Dignicap didn't cover too well-behind ears and nape of neck.
Has anyone else experienced a lot of shedding during this time? If so, does it let up?
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LisbethM - I used penguin cold caps but all of my shedding was post chemo and lasted 4 months post chemo. I did not shed during cold capping, April through June 29th, but it started afterwards. No bald spots but I lost probably 40% percent in the 4 months after. No one else can really tell, except my hairdresser, but it has really thinned out. My hair was very thick. I lost a lot around my hairline but it is growing back fast. I take both biotin and biosil, trying to boost regrowth.
I talked with Shirley at Rapunzel Project and she said she started shedding after chemo too. I am thankful it stopped or slowed down in the last month. I am 5 month Pfc now. I still wash only twice a week butI did color my roots with a gentle product, Madison Reed Radiant Hair Color kit at 3.5 month Pfc. I did not notice more shedding after coloring.
Good luck!
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LizabethM - I also did Dignicap and studied the Dignicap materials end to end (before, during, after
) - they clearly state the major shedding occurs after the first 2 sessions - approximately 18-21 days. This is normal with this protocol and if you review the material it states it. Stay the course, I had a minor meltdown after my second treatment (Day 20ish) as I had considerable thinnning on the crown (trouble spot for dignicap) and have kind of a bald spot -- I learned to fill it in with topikk and get on w/ things. My meltdown was caused by my thought - if I am shedding this much, I will loose everything before the end - it did slow down for me. I hope this helps you.
I am still shedding - 6 weeks PFC - however - considerably slower than during those first two chemo sessions. I am hoping to see some growth start soon -- no idea how I will incorporate that into a style when it does happen,I look forward to that challenge
I think everyone is different, they don't really know how/why it works - my advice is to stay the course and try not to dwell on it to much. style your hair for the day, leave and get your mind on something else ....
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Travel Girl, thanks for that! When I was shedding so much, I had the same thought, if I shed this much, I will not have any hair left by the end. I do think I have lost hair in areas where the Dignicap did not cover, my husband just read that a new Dignicap is coming out next year with a better design for more coverage and more comfort with the straps.
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LizabethM - I am happy for future Dignicap users, those straps are miserable and I do believe they need to alter the design to really help get the crown better and also let you leave it on a bit longer post treatment.
I sent them some feedback and I really do hope they keep improving the process for others.
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HELP!!!!!!! DESPERATELY need some advice, urgently!! I think I may have lice. In the normal world, no biggie, but now????? I have no idea what to do!!! Coconut oil, which I know is safe to use, will kill the adult lice but not the nits. There are also some "all natural" lice shampoos but I don't know if the ingredients are all safe. Going to do the coconut oil tonight but have to get everything out of my hair before my next treatment.So my choices are to do a heat treatment to kill the nits, which seems like a horrible idea. or go to a nitpicker who will comb every strand of my hair out with a fine tooth comb, which also seems like a horrible idea.
Also, dr. google says that adding tea tree oil to the coconut oil increases effectiveness. Anyone know if tea tree oil is safe to use during coldcapping???
Also wondering if freezing kils them? The nits I see are a weird gray/black in color and i wonder if that's from my previous scalp cooling?
Any help you can provide would be so appreciated!!!
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Hi everybody, I am going to start quemo next week and I was wondering if you need someone to help you with the cold caps in order to work out or does anybody has done it by themselves. Also my regimen would be Herceptin and Perjeta first for about 2 or 2 1/5 hrs and after that I'm going to have Taxotere and Carboplatin also for about the same time. Has anybody used the cold caps with taxotere and carboplatin the same day? I'm supposed to have sessions of 4 to 5 hrs every 3 weeks. I was checking out the website of Pinguin caps but I did not see the list of compatible regimens.
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Hi, Sunshine 6 - I am doing the same chemo as you (TCHP) and using Arctic Cold Caps. Taxotere and Carboplatin are the chemo drugs that cause hair loss, so I asked that my infusions be ordered to give those drugs first, with the Perjeta next (since hair loss is a lesser. but possible side effect from that) and the Herceptin at the end. So mine is actually TCPH. They ran my first infusion slowly, so by the time I got to the end of it I had about 3 of the 4 hours of post-chemo capping in with the drugs administered this way.
I think it would be very difficult to cold cap on your own, but I have read a couple of posts here from women who managed to do so.
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Hi sunshine6! I am currently using PCC for 6 infusions of TC. Ive had great results so far with my first 3 infusions. But I don't think i could do PCCs by myself. There is a ton of Velcro-ing and strapping, and it is all very timely. I go to treatments with my capping "pit crew" which includes my husband and a helper-- either family member or friend of mine. Their help has been invaluable through this. I think it can be done with me assisting just one other person, but I am not turning down everyone's generous offer to help. There are infusion centers that have machines, but you may have to drive a little further for it. Lizabeth drives 2 1/2 hours to her center to use their Dignicap machine. Best wishes!
And Lizabeth-- I'm right there with you on the day 23 shed! Mine lasted about 5 days and then tapered off. I am heading to see my oncologist this morning who I have not seen since day 14. He insisted I would be bald when I saw him next.... today is 15 days after #3 and I think I'm looking pretty good and can't wait for him to see my pretty hair! I'm enjoying my cup of tea by the Christmas tree just thinking about it. 😜 Hope he doesn't raise my dose just to spite me! 🤣🤣
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MamaFelice - you made me smile this morning! I can't believe your MO said you would be bald -- mine is the opposite encouraging women to consider cold capping because she says it helps so much mentally. My MO specializes in young women with cancer, we have a long history - so I am sure this has some kind of impact.
Your hair is fantastic, mine isn't that thick ever
. Even better - your big smile. And I would take the pit crew any-day -- having others at chemo with you - especially to take your mind off that freeze is so nice. If not, movies people -- movies, anything to not think about the freezing cold. For those thinking about driving lots of hours or renting your own - if you have the help, I would say rent your own. If you don't have the help, drive, drive, drive. The reason I say this is because I think that the rental caps give you better coverage on your head and switching out the caps gives you more even coverage. Dignicaps are good - I am glad I did them - they are just a bit weak on the crown area (I have a bald spot) ... and in my non-medical opinion, don't let you keep the caps on long enough post chemo. As Lizabeth states above, Dignicap is doing a updated design -- that will be fantastic and I hope for all my future bc warriors it improves for them.
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Sorry I disappeared for a while...vacation and what not but hang in there everybody. It will be over before you know it. The shedding...yes it seems like it goes on for months. I think it was at least a month after chemo was completed before I wasn't shedding like crazy any longer. That's when I also lost eyelashes and eyebrows as well, but now I'm 3 months after chemo and things are going better. My hair is still in that awkward phase...but I'm okay with what I have now.
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hi all,
I have a friend HER2 positive erpr negative. She wants to cap. The cancer center told her even with cold caps or not She would loose 99 percent of her hair!
Any her2 positives out there? Can relate your success fail rates?
Hugs all elastogelgirl girl
My hair now;
With a keratin smooth down for chemo curls....My hair looking is almost normal now at 8 months
I did ACT chemo and lost about 80 percent. What I had left is a great disguise over my new growth which is about 3 1/2 inches of curly now. I got highlights at 8 months and my hair is very strong.
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Elastogelgirl - I'm HER2+ (actually triple positive) and receiving TCHP every 3 weeks. Have only had the first of 6 scheduled infusions so far, but I did my research and believe that most women have fairly good success with capping for my protocol. Google "cold capping TCHP" to find several blog posts from women who've been there to see their experiences.
Boo on your friend's cancer center for being so discouraging! Especially since they are wrong, in my opinion.
Your hair is looking great; thanks for sharing!
MamaFelice - Thanks to you too for posting your encouraging pic! I am also receiving Taxotere and our hair is very similar, though mine's a bit shorter. Since I'm a couple of rounds behind you, it is great to see that you're doing so well.
I'm at Day 16 following TCHP #1. Yesterday was a shampoo day and there was definitely more shedding than normal; I'd say almost double the usual amount.
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Hello Cold Cappers!!
I am jumping online today to bring hope to all of you as you go through this process, or to encourage those who are on the fence about cold capping. Today marks 5 months post chemo for me. Yea!! (Side note, find the chemo group on BCO that corresponds with your starting month of treatment, it is a life saver for tips and support. The February 2017 Chemo group was great and we are all still in touch!)
My chemo was 4 DD AC with 12 weekly Taxol. I used Penguin Cold caps as they had the highest success with "A" the dreaded Red Devil. Note that I had one cooler and used 40 pounds of dry ice, not the 80 pounds they suggest. Never had an issue with the caps not being cold enough. This was less costly and much less heavy to lift in and out of the car. Pellets are the best!! The bricks are ok but pellets work better. Picked it up the afternoon before and packed the cooler with lawn bags from Costco to keep the ice from dissipating. It worked!!
"Penguin does not promote great success with "A". I lost about 50% of my hair, BUT, it started growing back during Taxol infusions. Day 23 is indeed the magic day for shedding to start. It is all the "old" hair that leaves, all at once. This can continue for a week or so, at least for me it stopped pretty quickly and then I just started losing a few strands here and there. My hair was thinner at 50% loss, but no one could tell I was in chemo and only my close friends could notice the difference, after I pointed it out to them. It sounds like a lot, but it really is easier to cover this up than you think. This meant I could go anywhere and not get the "pity looks" and really helped keep me positive and focused on good health. I practiced yoga 3 times weekly throughout treatment without any of my classmates knowing a thing about what I was going through. That sense of normalcy was invaluable to keeping a happy outlook for me.
By the end of chemo, I had some thinner areas and no "volume." For that I used Topix which is so easy to sprinkle on the hair. I did not use any volume enhancing products and followed the wash instructions to the letter. I did not cut my hair prior to cold capping. I think this is key, your hair follicles are used to the weight and a cut throws them off a bit. A trim is ok, but not a major cut. I had trims throughout chemo as my hair continued to grow.
I used a demi-permanent dye about a month before chemo ended as it was 5.5 months of no dye by then. The cover up powders are great, but the real dye helped a lot to cover gray and also add some body. My hairdresser is a friend and she came to the house and did it, avoiding the scalp completely. NOTHING happened, no further hair loss. Since I stopped losing hair half way through chemo, I had a huge head start back to my normal hair. I have used gels to keep the curly hair tamed, pinned it up in a French twist and so on. But finally it was long enough for a cool cut and color. I ended up with a cute pageboy/bob that I can tuck behind my ears with a lot of volume on top. The hair that is still growing in there poofs everything up so it really is a MULLET look. Cool if it were the 80's. This new cut makes the poofy work.
I had hair that was below my shoulders to start. The hair that remained was damaged from the cold capping, no way to get around that so that is why the shorter hair cut, but again, WAY ahead of starting from scratch. I have had a lot of compliments on the cut too. I remember when someone else came on here and shared their success AND the things they did that were not perfectly following the rules. It helped me a lot so thought I would share. Our results will all vary as our bodies are different but mostly people do very well cold capping.
For the person wondering if they can do this themselves. It is the MediPort or IV that will be the issue, too hard and painful to be moving your body around during infusion with either of those hook ups. At least that is my opinion. Other than that, you could do it. I had a helper during infusion, we left when that was done to finish up at home and I could have easily done the rest by myself. So maybe a helper just for the actual infusion?
I am glad to discuss further if anyone has questions, feel free to PM me. Otherwise, I wish all you the best in cold capping and most importantly, in your journey of eradicating cancer.
COLD CAPPING TIPS
An electric blanket for warmth, A heating pad to move around to parts that get cold.
Yoga pants and a stretchy top (easier to access the port) and a cardigan sweater over that.
Water bottle filled with cubes, drink constantly to get the chemo moving along.
I ate a lot of frozen fruit bars during chemo, no mouth sores.
Kitchen timer and smart phone - I used one as a timer for a 5 minute warning, then we could check the cap for the temperature and adjust if needed. I was the timer person, my cold capper did everything else. If the caps are too cold you can sit on them to warm them up!! We took turns doing that. haha
Ibuprophen with a protein breakfast helped me stay focused and not get the "brain freeze." A sedative will make you drowsy and it is harder to manage the process that way.
The chin strap does NOT have to be tight under your chin for the whole session, just long enough to get the cap on tight. Loosen it up so you can drink and eat!
Goody makes a Wet Brush that is great for detangling hair, works better than a wide tooth comb. I washed my hair in the shower, but the water was tepid and the pressure was very gentle.
Get a really good nights sleep before capping and it will go so much better, this is the time to take the sedative if you have them!!
Hugs to all of you, you CAN do this!! oxoxox
Anne
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Hello Magari thanks for the encouragement
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hi all,
So my friend is considering cold capping she is her2 + er pr negative.
Advice on the best cap! She starts chemo very soon.
Also anyone who has her stats and had success or failure, please tell me so I can forward to her.
Hugs all
Elastogelgirl
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Elasto -- see above for MamaFelice - her MO told her she would be bald by now and she is farrrr from that. It depends on the chemo and she should at least try it?
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Elastogirl, what chemo protocol? That's the important thing. I am triple positive and doing weekly taxol + herceptin (12 weeks). I just finished treatment number 6 and have lost almost no hair so far.
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