Cold Caps Users Past and Present, to Save Hair
Comments
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Makingway-I just realized I previously read your instructions and have been following your protocol. Hope the shedding slows down. It seems like more hair sheds everytime I just touch my head! Off for a wash. Wish me luck!
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Tylm-I hope the shedding slows also. I know how distressing it can be, especially on shampoo days because it seems much more comes out. Partly because we're not brushing, combing, styling and shampooing as we normally have so the accumulation between shampoos seems greater. At what temperature are you using the caps? Is someone checking their temps prior to each cap change?
Almost forgot-Good Luck!
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Tlym - Poor girl, scarey as it is, try not to worry. Everyone seems to shed during cold cap therapy, but the amounts seem to differ. I shed a lot and it was upsetting, especially when it started, because until it happens, it is impossible to really understand what "shedding" means. I had thought it simply meant a few more hairs than normal would fall out. I had no idea that hairs would be falling out steadily all day long for months or that I would lose 50 to 100 or more during a shampoo.
Take a deep breath and reassure yourself that while you will lose some hair, you will not lose all of it. You have over 100,000 hairs on your head, so losing 50, 100, even 200 a day will not make a dent. Shed hair comes off evenly so that it is not noticeable, you will not be left with bald spots.
Be super careful to be gentle when you shampoo right now. I used a hand held sprayer on low and a gentle setting in the shower or sometimes I would use the sprayer in the kitchen sink on a low volume. Use cool to cold water in as gentle a spray or stream as you can manage, deflecting it with your other hand to keep from having a hard spray directly hit your scalp.
I found that parting my long hair and then wetting it so that the hair remained hanging straight down on either sides of my head throughout the shampoo, rather than piling it up on my head as I used to do, worked best and left me with the least tangling. Whatever you do don't rub or massage your hair, just pat or smoosh the shampoo through it. Let it sit a few minutes while you shower or bathe to allow the shampoo to work, then carefully rinse the shampoo out leaving your hair hanging straight. Pat on some conditioner then rinse it out also without rubbing. Drape a towel over your head and gently blot your hair dry with gentle pats without rubbing or moving the towel so you do not put any stress on your folicles. Comb out the wet hair gingerly starting at the bottom. If you need to use a hair dryer, only use the cool setting. No warm air, except on longer ends away from the scalp.
I had some nasty tangling during my first shampoo after starting to shed as hairs that had weakened or almost shed but not come out intertwined with the rest of my hair and formed big snarls. The problem was that I had gently massaged my hair to clean my scalp which was itching like yours - a bad decision on my part. Do your best to not disturb your hair as you cleanse it to limit tangling. It took forever to comb out my hair and I lost a lot that I probably would not have had I been more careful.
I would pick up fairly large amounts of hair from the bathmat after each shampoo compared to what I lost pre-chemo - I kept two samples of pre-chemo shampoo hair loss to compare with which was helpful as a reference. It was unsettling, but while I seemed to lose a lot each shampoo I always had full coverage on my head.
If you are following Penguin protocol, you will be fine. Have faith!
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Makingway-We are using the caps at -32C and checking them with a digital thermometer when they come out of the freezer. We practiced with the caps at home everyday for one week prior to infusion, so my helpers were well experienced and knew how to get a nice snug fit on my head, so I don't think there was anything we could have done differently. Made it through the washing tonight and have been letting hair air dry. Itching seems to have gone away but still shedding. There was definitely a significant amount of shedding today prior to washing so I know it's from the chemo and not my normal shedding amount. Hope it will slow down soon. Thanks for the wish of luck. I know you have a lot of experience, so I'm going to have faith and trust in this process.
Hortense-Thanks so much for the advice and words of encouragement. As much as I had expected the shedding, like you, I don't think I was completely prepared for the amount that would be coming out. I have been collecting it in a ziploc, and to keep things in perspective, it really is only about 1/2 a snack bag's worth of hair. It's just disconcerting to see strands of 5 or 6 hairs at a time slide right off my head! And I keep finding more on my shoulders and falling onto my pillow. I will try to shampoo every 3-4 days rather than every 5-6 days to keep my scalp from getting congested and maybe that will help. I have long fine, wavy hair and lots of it, so hopefully the shedding will only be noticeable to me and my close friends and family. I know many cold cap ladies have said they lost somewhere in the range of 25-30% of their hair overall, results of which would make me very happy!
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I will be having my fourth (and last!) TC session on 12/5. My MO is thrilled with the PCC. When I went for my infusion this past week, the first thing she said was, "Look at your hair!"
I've asked for permission to film the cap choreography during my next session. And was just contacted by the cancer center who asked if I'd consider being featured in one of their publications. Go PCC! So pleased to have opportunities to get the word out. I'm the first one at my center to use the caps.
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301724 - that is so AWESOME! I wish my onc was so responsive. I basically got a reluctant "nod head" when I said "see my hair?" I don't think he liked being proved wrong, or else, he just was more concerned about my difficult side effects/distracted. Probably a combo of both.
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Tylm-Keep the faith!
301724-That's great your center is responsive to the importance of cold cap therapy. It's use can play such a huge part in the wellness of women. Too many clinics/hospitals I've been in have had the attitude of that of dancetrancers experience. I attribute it to the lack of caring, knowledge, and frankly us cold capper's are just in their way. Does anybody else find it odd that WE are the ones who care enough to do the research? It really doesn't take much effort...
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Tlym - I kept bags of my hair, one for each shampoo, and just tossed all of them a week ago. Your shedding sounds similar to mine. I always had five or more hairs sliding down which can get disconcerting. Try to accept that it is a normal part of the process. Don't let it demoralize you. You really will be fine.
Good for you to agree to be in the centers publication!
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thanks for the info on the cold caps eveyone. my treatments are changing tomorrow, a/a stopped working, so the headaches will prob stop too. wish me luck!!!!!!
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Thanks, Makingway and Hortense. Hairs still keep sliding off my head today, but I'm trying not to get neurotic about it. I think I've lost a few hundred hairs over the past few days, but I don't think anybody can even tell my hair looks different. It's still nice and full, so I'll keep the faith. Other ladies on my November chemo thread (non cold caps users) who started later than me have been losing their hair in clumps, so I'm thankful mine is more of a slow shed.
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susan3, prayers to you finding a treatment that works without giving you headaches.
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thanks Laura5..have a great Thanksgiving everyone
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dancetrancer: Thanks for the links. Is there a mention of the UCSF study led by Hope Rugo? that's going to be one of the biggies, she is one of the leading BC MOs.
301724: My MO had a similar response, after being supportive (but qualified) in her support early on. She now recommends PCCs, as do all of the MOs in her professional group. It was (and is, still) very gratifying to see that my own cancer experience could have a profoundly larger positive impact for other women, here and through my cancer center. Congratulations for leading the way!!
Tylm: I recommend shampooing no more than once/week. This was the protocol when I used caps 2.5 years ago, and they've recommended more frequent washings but the more you manipulate your hair, the more will fall out. The hair is desperately trying to hang on, so continue to follow the hair care protocol, and also monitor your liver function as best you can (iron level, etc. -- it is a big variable, as is the quality of your hair). There are some factors which we can control in this process - diet, following the protocol -- but other factors which we cannot. People should expect shedding during this process, but the degree varies. Most women with thick, coarse, andor curly hair tend to shed more heavily than those with blonde, light, fine hair. That said, most women come through the PCC experience not needing a wig, scarf, or hat. For myself, my hair was thinner (to me) but in photos it is very difficult to see a difference, other than less volume. My scalp was very itchy and hair was oily after first infusion, but by the time I'd had my second wash and my third infusion, the drying effects of chemo really caught up. Because I swim every day, I did rinse my hair every day -- and that is fine. It is less drying, but keeps scalp clean and fresh and involves less agitation of the follicles. I found that my shedding had cycles, some heavier days and some very light. Hairwash days (once/week) were definitely the heaviest, but easily a weeks' worth of hairwash shedding plus some compared to my regular, daily wash routine. Hang in there! I began keeping my shed hair in a baggie. Whenever I panicked, I just held the bag of hair next to my head as a very obvious reminder of how much hair I had. While I was going through the process, it felt like a truckload of hair was coming out. However, in 6 months, I had barely a scrunched handful of hair -- most of it a 1" layer from the base of my neck at the nape.
For anybody just starting out, I am very happy to send my comprehensive writeup of my PCC experience including pointers, tips, haircare protocol, etc.
Best,
Susan
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Thanks, Susan. Still shedding
! Hair loss not detectable to anyone but me and DH who gets to hear me whine when showing him my little ziploc. I have dark brown, long, wavy hair and it still looks nice and full with no bald patches. Hoping the shedding at least continues to go evenly.I'm at UCSF with Michelle Melisko, Hope Rugo's colleague. I couldn't get in for an appt with Dr. Rugo, but I just love Dr. Melisko and will probably stay with her rather than transferring back to Stanford when chemo is over. It's a bit of a hassle going into the city, but there's a lot to be said for having an MO who is completely in tune with your priorties. She even fast-tracked me to get in to see Dr. Donald Abrams, a renowned UCSF integrative oncologist. I'm already receiving treatment with an acupuncturist and taking herbs and supplements, but being triple negative and conventional medicine only offering me chemotherapy, I feel I have to be proactive about exploring all my complementary options.
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sebm-I realize when we first learned of the caps we were instructed only to wash once per week. It is now recommended to wash twice per week, and for good reason. Many women would develop a flakiness of their scalp, thought to be due to the accumulation of oils and excretion from the pores of the chemotherapy drugs. Don't want that sitting on your scalp any longer than neccessary. A gentle shampoo twice a week is best. H. Rugo is the author for the presentation that will be given at SABCS.
solantio-Isn't it mind boggling, the dumb things commented by those in the medical profession? You'd think they would be overjoyed to find that cold caps really, truly DO work!
Tylm-Integrative oncology is the way to go. Of the women I've helped, the ones receiving accupunture had little to NO side effects at all for the duration of their treatment.
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Happy Thanksgiving to everyone. Stay safe.
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Hey everyone! I will be starting my 1st T/C treatment on Dec. 3. I am scared to death. Being diagnosed with breast cancer at 30 has been such an emotional roller coaster. I am married and I have a 4,3, and 2 year old. I want to do everything possible to keep my hair and keep things as normal as possible for my kids. I do have a few questions...
What brand of thermometer and where did you get it?
Where did you get the coolers from?
Do you suggest getting dry ice the afternoon before or morning of treatment?
How long before treatment and after treatment do you wear the caps?
Thank you for all the info!! I appreciate it!0 -
Welcome! Try not to be scared. Think of what you are going through medically as getting the cancer out of you and killing off any stray cells that might remain. Chemo's no fun, but it's do-able and over before you know it - I say that as one who finished T/C four months ago. Radiation, if you need it, is far easier. I just finished six weeks of it a month and a half ago.
While I am much older than you, I met a young woman at my center who had just finished T/C using cold caps and I swear she looked absolutely normal. She had long, full softly wavy hair and not a soul would know she had finished chemo only three weeks before. She told me she decided to use cold caps so that her young kids would not see her as "sick Mommy" because she didn't want to scare them. The caps worked beautifully for her. She said she had shed some hair and that her hair thinned out a bit, but it was impossible for me to tell that she had lost a strand. She looked great.
Are you going to be using Penguin caps? If so, you will be sent instructions that you need to follow as closely as possible. Definitely do not do anything chemical to your hair between now and when you begin chemo - no treatments of any kind, no lightening roots or getting streaks - or the chemo will damage the newly treated hair and you will end up with breakage. I learned that the hard way.
I am sure others will chime in with answers to some of your questions. I was lucky, I had an experienced helper who took care of everything for me, but I do know that people use large Coleman coolers which can be found at Target, Walmart, camping stores, etc. Some people get their dry ice the afternoon before, some get it the day of treatment. My helper arranged to have it delivered to her the morning of each of my treatments. I think it depends on your source of dry ice and how you get it.
Sears carries infared thermometers, be sure what you buy can measure down to -55C, Lowes and Home Depot probably do also. Be sure to have extra batteries. Bring a kitchen timer also as timing each cap between changes is crucial.
These are the instructions I was given:
"Ask the nurse what time will your chemo start. Fifty minutes before that time, regardless of any premeds given,
start your cold cap therapy using the caps as directed in the “Cold Cap changing times and temperature for use schedule” below
The first two caps used are used for twenty minutes each.
the third cap onwards is changed every 30 minutes
1st Cap Use for 20 minutes only
2nd Cap: Use for 20 minutes only
CHEMO INFUSION
3rd Cap: Use for 30 minutes only – After wearing the 3rd cap for 10 minutes chemo infusion must be started (See note below)
Change all subsequent caps after 30 minutes of use for the duration of the chemo infusion and for 4 hours after chemo has finished.
NOTES :-
The pre medication time does not count as the start of chemo for cold cap therapy requirements. Check that your doctor has not included the pre medication time as part of your chemotherapy infusion time."
~~~~~~~~~~~~~~~~~I strongly suggest that you ice your fingernails, feet and toenails during your Taxotere infusion to ward off possible neuropathy (nerve damage) and damage to the nail beds which can discolor, deform or cause the nails to come off entirely - I've met women who didn't ice and lost them. You do not need to ice during premeds or Cytoxane, just during Taxotere. Use ziploc bags of crushed ice or frozen peas to put your fingers into up above first joint. I used frozen peas once. They were kind of fun to fiddle with. You can let your fingers warm up a bit if they get too cold, then put them back in the ice to keep chilling.Be sure to dress very warmly in many layers - think turtle necks and long underwear - and get or borrow an electric blanket to wrap up in as the caps are very cold.
Take two Tylenol about twenty minutes before putting on the first cap as it will help. They are incredibly cold when they first go on, but after about four minutes your scalp goes numb and they become bearable. Keeping the thought fresh in your mind that you are doing everything you can to save your hair so you do not go bald in two weeks is very motivating. It makes the cold worth it.
Good luck!
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Hi SLB11 - This is a wonderfully supportive and helpful group! I am currently through 3 of 4 taxotere/cytoxan treatments. Except for hair loss on the top front of my head due to frostbite from the first cap session (more about that in a minute), I have had little shedding. Today was my weekly hair wash. I lost ~ 100 hairs max. And that in light of a daily comb that yields 0-15 hairs only. So be assured that cold caps work.
Regarding the frostbite - I think more info could be provided about how to avoid this as almost everyone who gets frostbite - not that many of us - have it happen on the first round. Combing hair back from your forehead - as opposed to normal side part with bangs (for me) - would have helped. Even though I switched my part, it wasn't sufficient. Also being told what to look for in terms of tenderness would have helped. At the end of my first session, the top of my head was numb and tender. It stayed that way for more than 3 weeks, then started flaking off and bringing clumps of hair with it. For sessions 2 and 3, I used gauze strips over the thin and flaking spots. It seems to have worked fine. While I have a pretty big bald area in the front, combing over it works. And - the area that flaked off first seems to have some new growth starting!
So in addition to the above advice, I'd add this:
* make sure caps are wiped dry before each use
* comb your hair straight back from your forehead
* bring some rolled gauze and scissors (or get some at your center) so that you can cover any tender/thin areas
* expect the caps to be cold but if they hurt consistently, cover that area with gauze strips
* have your helper check periodically during cap changes to make sure there are no red areas
Best of luck!
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I have excessive hair loss and thinning while using the cold cap. Currently on Day 22 and its getting much worse, rather than better. Coming out in fistfuls. All over clothes, comb, floor, sink, shower. Going to get it cut today to try to manage through this. Is there anything else I can do to prevent this loss? At what point do you consider yourself in the unsuccessful 20%.
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Hortense- Thank you u for all the info! I've ordered the caps and they are on the way. I have read over the instructions and shopping list. I'm planning on going next week to get everything. I just want to make sure that in case I cant find something then I have time to order it on amazon. I did highlight my hair on Nov. 13. I had no idea I wasn't suppose to color it. :-( at least my hair still has another week before I start the chemo. I've been using dermorganics shampoo and conditioner. I think I've read that a few women use that also. Anyone have any recommendations for leave in conditioner?
301724- thank you so much for all the tips!! So instead of changing the part you suggest combing the hair straight back? This gives me hope that I will get through this.0 -
Loafer: So sorry to hear about the hair shedding. I am new to this and on day 20. Next chemo on Monday. I did not shed at all the past month, even with hair washing. On Thursday, day 18, I started shedding and continued yesterday and today.....minimal really. Maybe 10-15 after washing Thursday and a few noticeable on my clothes during the day.
Maybe you should contact geralyn at penguin cold caps and see what she suggests/thinks. Good luck
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Thanks school mom! I am just about ready to give up on this. It's expensive, time consuming and I'm still losing the majority of my hair. I've been using a helper who has been leaving the caps on for four hours after each chemo treatment - been through two so far- so it's quite an ordeal. I am losing enough hair to make a wig - it's embarrassing to go out with all the hair on my clothes - my house is covered in hair! Before treatment, I shed a lot, in treatment I'm minimally in the thousands with full trash cans. I did have very thick hair which is why my Onc thought I would be a good candidate. No bald spots yet, just massive hair loss, and serious thinning. Still holding out some hope.... Hoping a haircut will help.
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Please, please, please follow my suggestions. I have a lot of experience with the cold caps. The suggestions I give are the result of it.
* Do NOT comb the hair back. Let hair fall down naturally. Use hair to provide cover for the ears-women that use other cover for the ears generally lose hair around them.
* Do NOT cut hair.
* Do NOT use a leave in conditioner.
Loafer-I am surprised at the amount of hair loss you are experiencing. Send me a private message and I will help to figure out what can be done to prevent anymore.
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Thanks, Makingway. You have tons of experience. I had heard from others that combing back from the forehead - not the sides - made sense if one had bangs. It seemed logical and I think, could have helped me, but maybe not.
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Thanks all. I've already cut my hair from mid-back to chin length - really had no other options - if I wanted to leave the house. My hairdresser was beside herself with the hair falling out. She only wet it down and cut straight across - did not blow it dry for fear more would come out - its winter here too! She said the majority of loss is around base of neck and ears. I don't pull it back (except for a bobby pin to get it out of my face) and use the required organic shampoo/conditioner. I wear nothing on my head and sleep on a satin pillow case. I did speak to my helper ( who has never had anyone fail) and she's being very supportive. Said it should stop falling out any day now....
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Loafer-I am also at day 22 and despite strictly following the cold caps protocol, am experiencing excessive hair loss as well. My quart size ziploc is now half full and hair has thinned considerably. I still have lots on my head, but hair as I know it has ceased to exist. Strangers have no idea, but those who know me can see the difference. If it would just stay at the current condition, I would be fine. But I'm worried it's going to continue shedding, and at this rate, I'm not sure what will be left by the end of chemo! I had a complete meltdown while washing my hair this morning and ran out to Nordstrom and bought a few loose berets. They don't fit snugly on my head but cover the top enough that on non-washing days I can pop one on and look halfway decent. Having tx#2 on Monday and worried about additional hair loss but will continue with cold caps and have faith in this process.
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Loafer and Tlym- You may be fine. You both are at the exact time people start to shed - between the 18th and 24th day according to my breast center, which warned me to expect shedding. Though until it started, I really did not understand what "sheding" meant.
Mine started about the 21st day, slowly for a few days, then it seemed to always be falling out which was disconcerting. Hair was everywhere around my house, just like you describe. It was all over my clothes, my bureau, floor, furniture and fell into my food. I would scoop up a handful after each shampoo (using DermOrganic also) which I put in baggies. It certainly seemed excessive at the time, but I think it was simply the oldest, weakest hairs falling out after the chemo hit them, which I had been told would happen.
The heaviest shedding let up somewhat after the third treatment and, while it did not stop, it did slow down and I tried to relax enough to accept it. I shed more heavily again three weeks after my chemo ended for a few weeks before it slowed down again. Hair kept falling out until 16 weeks post final chemo when it stopped.
At times I wondered if I would go bald, but I didn't. My hair has thinned out, but did so uniformly all over my head so that I do not have any bald spots. It does not look the way it did before chemo - thick and healthy, but I do have full coverage which for me is much better than being bald. I have shortened it a bit, half an inch at a time, because it was looking straggly plus it had continued to grow throughout my chemo treatments and needed a trim.
I have lots of new hair growing from the follicles that shed. If I lift a section I can see it is far thicker at the base from the scalp up an inch or so because of all those new hairs. My growth is very apparent because it is my natural color, not my chemically lightened color. The old hair strands have natural colored roots that are a full four inches long now, meaning that they had kept growing vigorously through chemo because of the protection given by cold caps.
Had I not used cold caps I would have lost every hair on my head by the 21st day and been bald. Now, at four months post chemo, I would be anxiously waiting for my hair to regrow enough to cover the baldness. As it is, I do have hair covering my head. It is not gorgeous - in part because I can not color my roots, but it is there still and I am so happy to have it. I can see new hairs coming in to thicken what I have, and in another two months I will be able to color my roots to get back to the overall blonde color I am accustomed to seeing.
I would rather have some bad hair days to complain to myself about than go bald. Or much worse, discover that I was one of the unlucky percentage that never regrow their hair. I know someone who can only grow a few wisps of hair because chemo damaged her follicles so badly.
Stick with the cold caps, try not to panic about shedding and trust that, as long as you follow the cold cap protocol exactly, you will keep your hair enough to have full coverage. You have 100,000 hairs on your head normally, you can lose a lot and still have enough hair to look presentable.
Good luck!
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Thanks for the encouragement Hortace and Tlym! had been shedding all along and finally when it came out in fistfuls I had enough. I have bald patches around ears and back of neck area - my hair looks nothing like it did before - the mid-back length fell out since that was attached to my lower head. I looked in the mirror and what was mid-back lenght was now choppy shoulder length. That was when i said enough is enough and got a hair cut. Maybe the caps didn't reach these areas - not sure. I do have hair and new growth on the top of my head ( lots of grey in my part) and feel good about my decision to cut to chin length. Who knows, I may be coloring soon too - have nothing to lose
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Best of luck to you Tlym on your second treatment! Mine was Wednesday before Thanksgiving and side effects are better than first - just tired. Hugs to you!!0 -
Loafer-My bald patches are on the front top sides of my head, exactly where there is a seam in the caps. I have long hair, so I'm able to do a middle part and cover those spots. The back of my head and behind ears, where most people seem to lose hair, are perfectly intact. Guess my helpers did a great job of fitting the caps to the usually troublesome areas. Never would have guessed I'd lose hair on top. I'm glad to hear your side effects are better this time. Get plenty of rest and hugs to you too!
Hortense-Thank you so much for your support. I am grateful to still have a full head of hair, thin, but it does cover my head and looks great from the back. Many of the women on my November chemo board are struggling with shaving their heads and ill-fitting wigs, so I'm thankful I'm just contending with lots of shedding. Can't wait for the day when I'm in your position and waiting to color my hair!
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