Cold Caps Users Past and Present, to Save Hair
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Hi Amelia,
I do weekly Taxol and artic cold caps for twelve weeks. Ii isn't easy, but my husband helps and I found it to be worth it. We start capping at my infusion center and then keep capping at home for the designated amount of time. My schedule is roughly 12:45pm-6:30 with the caps, rotating every 20 minutes. I have completed 4 rounds of Taxol, and had no noticeable shedding. Number #5 is tomorrow. I have heard that hair shedding can start anywhere between Taxol 2-4 for those who are not capping. I'm not sure if you were looking at capping but you have to start from the very first treatment in order for it to work, Also Taxol does not cause permanent hair loss. However Taxotere has shown permanent hair loss in a small amount of people, and I have heard there is some big lawsuit being put together for that. I don't brush my hair, but I do comb it (a wide tooth comb was supplied by my cold cap company). I have fine, thin hair, so it would be a matted mess if I didn't. I think different hair types may be able to get away with not brushing. The idea with capping is to just be as gentle as possible. As for acne, I have heard of that. I seem to have breakouts as well on my back and chest, which I'm not sure if it's acne or some other kind of reaction.
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Hi Amelia i have curly hair so the reason while i don't brush it everyday is because you will see every time you brush it you will loose hair. As i wear a pony tail i don't need to brush it, only the day i have to wash it. But every type of hair is different. See what is best for you. I had taxotere 6 cycles and i didn't loose my hair. I did not tell anybody at my work, only 2 friends. Now that i am done nobody noticed. When they asked me why i have a pony tail all the time i say because they cut my hair so short and i don't like it. When i go out i wear the halo extensions and nobody notice is not my hair. So keep going believe me is worth it.
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Good morning (East Coast anyway) w/a newish follow-up question. I am now T-minus 15 days before my first chemo (1/26) which, in all, will be 4 cycles of TC, 21 days apart, and the monster box from Arctic Cold Caps arrived yesterday and is sitting in my living room. My hair has almost always been pleasantly thick w/some body to it (not curly, but not straight), and I wear it short, but not pixie. My last full cut w/color and highlights (and before I received my Oncotype DX score of 38 and the dreaded chemo news) was December 16, and in the normal cycle I would be due for another cut, etc. by about Feb. 1. I have read much counseling about not to do any drastic restyling of one's hair in advance of chemo if one is pursuing the cold capping route. However, I have wanted to have a light trim and shaping -- with no color/highlights -- and have scheduled it for 1/14 with my hairdresser, who has been doing my hair for over 30 years. I will ask him not to thin out the undergrowth, as I know I will need it for as long as it will last, but I want to leave my hair as easy to style either lightly with my fingers after the rare to occasional wash, or with the wide-toothed comb, and then of course, air dry; and I also want to be able to survive going from near daily washing to the 1-2x/week washing, or less on chemo weeks. Without this trim, I don't imagine being able to have it trimmed again until the first part of June (my last chemo is scheduled for March 30).
So, is my plan for the light hair trim -- about 12 days out from the 1st chemo -- a counter-productive idea if I'm cold capping?0 -
Schomit~I think it's fine to trim but not necessary. I wish I would have figured that out beforehand. I had over 6 inches cut thinking it would be better, less weight on follicle. But, in hindsight, I think it would have been fine to leave my long hair. I'm actually getting use to the shoulder length hair, so it's not all bad. I'm on the same treatment plan as you..4 rounds of TC every three weeks. My fourth and final TC is next Wednesday. I had a BIG shed days 18-24, but then normal shedding afterwards. I probably still have 90% of my hair. I truly believe that if the Dignicap was better fit to the top of my head that I wouldn't have shed as much as I did. So, make sure you have a good fit! I'm sure you have heard all the shampoo guidelines, etc. Also, the first 20 mins of the cold cap is like the worst ice-cream headache ever! Last chemo, I took four Advil about thirty minutes beforehand and it made a big difference!
Shay~shedding for me was about 18-24 days following the first chemo. I shed so much, it felt like it wasn't going to work out to continue cold capping, but, then it stopped and I have had only normal shedding since. Hang in there, if hair starts to fall, don't give up!
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Lizabeth, thanks. I've read anecdotal comments regarding the fit of the Dignicap on the top of the head, and that they're supposed to be revising their cap design to address this. I'm "investing" (at the price being charged, it's the only way to look at it) in having one of the Arctic Cold Cap registered nurses meet my friend and me at the 1st treatment session to insure that the cap is being used to its optimal efficiency. Although well outside of ACC's 60-mile radius referred to on their web site, when I called them and spoke to the owner, he told me they have a nurse just outside of Baltimore, which was ideal. My friend has stated that she feels responsible for every hair on my head, and I need to dissuade her of this notion that inevitably there will be some shedding (I'll blend in better with my cats, I suppose). I'm not looking forward to that ice cream headache, but just telling myself to "suck it up buttercup". I've also ordered booties with the frozen cool packs, and a separate order of 6 3"x 5" gel packs for freezing to use with my hands and feet for the Taxotere hour.
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FOR NEW CAPPERS..after my first dignicap session, I did not think I would be able to survive capping for the full course of treatment (for me it is weekly for 12 weeks!). I shivered uncontrollably for most of that 90 min period. The next time, I got the idea to wear a thermacare (single use hot wrap with adhesive) on my back, which helped somewhat. By the third treatment, I was wearing 3 of them (one on lower back, and one under each arm, placed toward the back) and that became my routine. I also take the heat pack that I use on the vein and put it down the front of my shirt. I cannot stress enough the difference this made in the experience.
Good luck!!!!
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Hi Everyone! I can't believe that's next week will be a year PFC. I had 4 rounds of TC.
Shlomit--bring a twin sized electric blanket with you!!
Lizabeth--you are exactly 1 year behind me. I finished Jan 18 last year. Good luck with the last infusion!
Amelia--My theory is if your hair follicle dies, the hair will come out in your comb or at washing. I combed mine every morning with a wide tooth comb. At the end of the day, a loose hair will fall out, it's just a matter of time.
Willow--here's is a compilation of my hair this year with the SLOW shedding--as in, I didn't even realize it until I saw pic because I don't see the hair falling out. I haven't cut my hair since summer of 2016!! I still haven't permanently colored either. I waited 7 months to use a semi perminent one without ammonia.
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Morning ladies!
MamaFelice - I hope chemo #5 went smoothly and you are resting comfortably today! Woohoo - only 1 more to go!
Pamela - wow - you really did shed gradually.... you look fantastic in all the photos
I shed a noticeable amount during chemo - more on wash days, but I was also lint-rolling my shirts pretty often everyday. I've continued to shed some post chemo, so that seeing my MO at 3 months PFC, she remarked on the difference. She had recommended cold capping to me, and they just brought the Paxman system into the infusion center (I think she was a part of getting that done), so I think she's following my experience more than most doctors. I'll try to put together a collage so you guys can see the change. My grey is atrocious, but at this point there's so much of it I can't see covering it with a powder - seems like it would take forever and I don't know how good it would look over such a large area. We are planning a golf trip to Palm Springs in March, about 2 weeks before my 6 months PFC date, and I think I'm going to do a semi-permanent color before the trip.... it's a huge couple's event (some I know, but most I do not), and I would feel so much better meeting people without the grey! My stylist uses Paul Mitchell products, and she recommended a natural one with no ammonia.... any thoughts or suggestions? Amelia, tell your DH to keep his hands off your hair
I know he doesn't mean anything by it, but the gentler the better as far as the follicles are concerned - that's why you are washing it less, using tepid (less than body temp water) and washing it really gently, along with all the other things to prevent friction (silk/satin pillow case, wide tooth comb, natural ph shampoo without additives, etc). You've both invested so much time and money into the actual capping process, so I recommend you do everything at home to maximize your benefit and save as much hair as possible!Take care all,
Willow
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Shlomit - I did have a trim before starting chemo - cut about an inch off and lightened layers so that I could use the Kenra leave-in conditioner to "scrunch style" and air dry my wavy hair. The style looked great, and I think the layers helped hide the hair loss, BUT when I started to shed a significant amount, I wish I had left it a little longer so that it was easier to pull back into a loose pony tail with a ribbon tie. All the fallen hairs on my back really bugged me, but I didn't want to wear a hair net when cooking, etc.
Willow
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Willow, my hair would have to first grow many inches before even being able to pull it into any soft scrunchy. I guess the main reason why I posted and was looking for the collective wisdom and experience was to make sure I wasn't going to do any more damage than the actual chemo will do when it starts. Right now, the top portion of my hair (parted on my left) is at a perfect length and probably won't be much different in two weeks. When it's this short, I don't use a blow dryer anyway unless it's still wet and I'm heading outside into the cold. From what you all have shared, I suspect that when the chemo is finished at the end of March, that's not going to be a good time for a trim, either. (Forget about the color, period.) Oh, now I'm getting confused.
Oh, and about that golf trip to Palm Springs! <swoon>0 -
Starting my first round of TC with Dignicap next week. What shampoo/conditioner brand(s) did you use/recommend for those with a similar regimen? I tried to search the forums but am not having any luck (but am sure this has been asked and answered in the past).
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I haven't started using it yet, but I ordered the following from Amazon: Alra - Mild Conditioning Shampoo, which is promoted for use during chemo and radiation; and Kenra Daily Provision Leave-In Conditioner. I believe I read about both of these products on the Rapunzel Project web site. I've also read that it's recommended to use aluminum-free deodorant. While I purchased the Alra online, there are a number of brands available at the all-natural, organic stores, such as Whole Foods.
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I take an electric blanket that I wrap around my shoulders and I'm good! Well, fluffy socks, too! ;-) But, seriously, it's all trial and error, but the time I have my 4th and final chemo next week, I will finally have figured everything out! LOL! And, I heard Dignicap is revising as well...wish I could have used the next cap! I have heard great things from Arctic and Penguin, I think you will have a good result. And, the whole reason we do Dignicap is because my husband felt like your friend did, he was nervous about cold capping so we drive 2 1/2 hours one way to Wake Forest. They are the closest to us with a cold cap machine. Paxman is in Northern Virginia but that would have meant driving over 3 1/2.
I'm completely happy about cold capping, it has meant the world to me to be able to "hide in plain" sight while in the general public and not have everyone know what I'm going through. Plus, it helps me feel somewhat "normal" to look in the mirror and still see me, even on the worst chemo days.
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Pamela~thanks for posting pictures! And, how cool is that to be one year out! Way to go girl! Makes me happy to think about getting through this last infusion and getting on with my life! :-)
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Can anyone recommend the best shampoo and conditioner for the dignicap?
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I wasn't told a specific shampoo to use for Dignicap but I have been using a shampoo called "Moroccanoil." It's in a sky blue bottle and I found it on Amazon. I sometimes use Coconut Oil as a conditioner.
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Shlomit, yikes, for some reason I thought you said you had shoulder length hair.... that's what I get for reading your post and replying later! I think you could safely do the trim you are talking about and it sounds like it would make chemo hair care easy and look cute. I found that my hair continued to grow during chemo, so I had my bangs trimmed twice during the 12 weeks of TC (not counting my cut 3-4 weeks before starting). Penguin says trims before and during chemo are fine, and I didn't notice any additional shedding at my bangs (my stylist was very gentle/careful with her comb and hands while trimming).
Barbiegabs & Shortney, I used Kenra daily clarifying shampoo and Kenra leave in conditioner (bought on amazon). I think I saw both recommended as pH balanced/good with capping on Rapunzel project website. I really like both products and plan to stay with them even after all the "capping care" is done. Penguin recommends only using clear shampoo & conditioner (something about the milky/opaque products having ingredients that coats the hair and prevents oxygen from getting to the root I think).
Willow
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I finished my 4th and final TC oh Dec 19th. I used Chemo Cold Caps and lost essentially zero hair....until last week! I am shedding like crazy! It started a week ago and I've had several days this week that I am shocked I have hair left as it seems like its everywhere. Looking at me you can't tell but i can see some spots thinning when I look close. It is freaking me out! and my head keeps tingling in spots which makes me think those spots are thinning next?
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Barbiegabs & Shortney--I agree with Willow about the clear shampoo being better although the conditioner isn't on your scalp so that shouldn't matter, and you WILL need conditioner because your hair feels like a bird's nest, but as long as you find a sulfate, paraben free shampoo, you should be fine. Target and Ulta have several of them in their natural section. I personally loved Hask's Macademia Oil conditioner because it smelled so good. But really, so many girls used so many products, I'm not sure there's one better than the other, as long as it's gentle and nourishing. Also, many people got a build up on their scalp. I had it once, It feels like patches and flakes off. I think it may be from washing so little and the oil glands in our hair going hair wire from the chemo.
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For those of you who have had the TC chemo, or I suppose, the Taxotere part of it, and have used ice packs to help protect your nails, what sort of mitten or other device have you used to hold the ice packs? I have purchased 3" x 5" reusable, freezable gel packs, and wanted to know the best way to wrap 'n hold them around my fingertips. Arriving today from Amazon are a pair of booties which come with their own reusable, freezable gel packs for the toe area.
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Hi all, I'm due to start AC+T chemo in the next couple weeks and wondering about the cold capping. Is it worth it? MO said 50% chance -- but I have to admit I'm terribly vain about my hair so if there's a chance, maybe I should try. and realistically, what I doing the day of my chemo anyway, so maybe it doesn't matter if it makes the app longer? If it matters, I have stage 2a, and I'm ER+/PR+/HER2- and 46. Thank you! any cold capping advice appreciated -- Diane
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dcbooklover- I was also told 50% but even if there is significant hair loss, the cold caps should protect the bulb therefore hair regrowth would be quicker.
Like you said, I’ve got nothing else going on that day, so two more hours is two more hours of dedicated reading time whereas if I were at home I might be inclined to do something other than rest.
I’m using the dignicap and I found it to be easily tolerated ( have only done one sitting and still days away what would be hair shedding day). I brought sand filled ankle wrap weights and actually placed them on my head during the capping in order to squash it to my skull.
From others’ experiences with that brand there seems to be a gap in the top area that doesn’t fir as well as it could.
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High Five for 5 down and 1 to go! Sporting my cap here girls so thought to share with all of you!
So happy to have only 1/6 TC left! Thanks Willow for checking on me! So excited Lizabeth is on the homestretch too, and best wishes to all those just starting out!
Pamela-- love the fancy photo collage! Your current style simply looks like a you are trying a new style-- and I love it! You are definitely a capping success!
I think everyone's questions were well-answered, but I will look back and double check if there are any tidbits I can add or share! Good luck this week Pink Sisters!
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looking great Mamafelice! Congrats for arriving at the home stretch!!!!
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Quick hair wash timing question: if my 1st chemo is Friday 1/26, may I wash my hair Tuesday 1/23, or is it recommended to wash on Monday 1/22, and then wait until Tuesday 1/30 to wash it again? I'm going from washing it most every day, to the more limited washing under the cold capping regime and I don't want to mess this up.
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I read somewhere that you should wash hair the day before the capping. Maybe I saw it on the Dignicap site.
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I should have clarified: I'm using the Arctic cold caps (similar to Chemo and Penguin cold caps) which recommends no sooner than 3 days before and 3 days after. So, dorky me, I'm planning all this out on a calendar and was unsure about when to count (e.g. whether the chemo day counts as day 3, as in 3 days before, etc.).
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Let's see.... calendar math... I will do my best with chemo brain! Here's how I do
Sunday-- Pre chemo wash
Tuesday-- Chemo
Friday-- Post chemo wash (& detox bath ☺️)
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That's perfect. I'm mapping it all on my calendar.
BTW, awesome Penguin cap you're sporting MamaFelice!
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Mamafelice, I was just looking at your stats. Did they find a previously unknown tumor when you had your mastectomy? You’re looking great, by the way!
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