Cold Caps Users Past and Present, to Save Hair
Comments
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In today's San Francisco Chronicle there is an article about cooling caps. It is mostly focused on the DigniCap. It mentions that it is used only during drug therapy. Interesting since Penguin caps must be used for four hours after chemo. I'll attach a link.
http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/01/26/MNQU1HE00E.DTL
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How is evryone doing?
I'm 14 days PFC..... (Day 77) so excited because hoping to gain back my strength and feel good in the coming days. Eyes watering and nose still bleeding a bit... but again -- all in all SEs have been minimal. Washed my hair Tuesday night and while it is really shedding (my ziploc bag looks full!!) when I look in the mirror I still have LOTS of hair and it looks like it needs a trim and color but it looks pretty good considering! (LOL).
Know my mindset is shifting ... was at Sally's yesterday for other things and started looking at the ammonia / peroxide free tints... not ready yet ... but can tell there's been a shift that I am actually going to keep my hair through this!! (It feels good to step back from the ledge and feel I may not need to approach it again
)Julia ~ thanks for the link!
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Doing good here as well..
I'm day 20 PFC...(Day 125 since first infusion) and I washed hair yesterday and the shedding wasn't bad at all...I too, started the Ziploc bag thing, but after my 4th treatment when it looked pretty good that I was going to keep my hair, I stopped doing it...
I was thinking of starting to use a cool setting on the hair dryer next week...would really like to have some sort of style in my hair, but I guess we'll see how I feel about it when I get to that point.
I am ready to color my hair too...when I'm ready to do so, is it better to go to a salon and ask if they have dyes that don't have ammonia/peroxide or just find a OTC one and do it myself?
Have a great day all!
Tori (Elasto gel cap user)
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A friend of mine is a breast navigator nurse. She just went to a big meeting and brought up the caps. They all said they don't work. She said they did since she was with me step by step through my chemo. Then, they said they could cause brain mets. Rediculous, because it doesn't stop the blood flow to the brain. If it did we would all be dead. Also, chemo doesn't cross the blood brain barrier.
I think this will become more mainstream when the patients demand it. The medical community is very slow to change and reluctant to accept new ideas.
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Lmflynn - so, so, so excited to hear about your shift in thinking. I can not wait for that to happen to me. I am on day #17 of my first round of TCH. 89 more days to go. I just love that you were looking (not shopping) for color. Oh, that is so exciting. I am at that first shedding period and am thinking it is all going to go....the stress of it all!
Yeah!!!Torigirl - so excited for you, as well. You are so close to being done. Fantastic! Just and FYI - my hair stylist told me to go to Whole Foods and buy a few "natural" colors/brands. She said that she would simply color my hair with whatever I purchased at the salon!
Shadow - I completely concur, though I think it will be years before cold caps are standard of care! I just talked to a woman whose best friend did it at Mayo and lost half her head of hair. I said "bummer" and she replied "no, that meant she kept half of it...she was thrilled." Perspective is everything!
Question for all - when you begin shedding, are there particular days that shed more? Does it settle down in between chemos? For example, I lost the MAJORITY of my hair on legs/down south/arms on days 14, 15, 16. I notice my head hair shedding more on day 15, 16 and today. Since the hair on the rest of my body is near gone, I have nothing to gauge. So will I get the 5-6 hairs on each of my combing for the rest of my chemo, every day?
I told my husband about keeping the hair in a bag and he thought my personality would not work well with that strategy. He knows me well.
I can get a bit fixated/obsessed! Help. Thanks!
Annie
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Annie~ Think the shedding like chemo side effects are a bit individual. I did not shed at all from Tx#1 to Tx#2 but have shed the most at Day 27 - 34 (so a few days after the next infusion) -- this has held true thorughout my treatment .. which is why I am counting 100 days... it gets me to past this "shedding" period of my last treatment (27-34 days PFC). The shedding definitely slowed all other days and felt more "normal" or even less than before chemo. Wearing the caps out of the home freezer seemed to help too but many girls here did not do this and had great results.
Everyone said to me -- as long as no clumps are coming out and you make it to Day 21 you know the caps are working. Especially for you since you have lost hair elsewhere... I would think you should be confident the caps are working!!
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Lmflynn - thank you for the vote of confidence. It made me cry. This entire thing is more stressful than I thought...
Annie
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I lost about 75 percent of my hair after my first FEC infusion --but as my sister said, "you still have hair". I have had treatment #2 now also and still having some shedding --whatever.
Today I sprayed it with water and leave in conditioner and CAREFULLY used a 'blowbrush' on low (no closer than 4 inches from my scalp) and then CAREFULLY PLACED a few (all I need) velco rollers - no pulling or tugging. After all was said and done I fluffed out what I have left and put on a baseball cap. My sister then came over so we could go to lunch. When she saw me she said, I like your long wig (which she had not seen me wear yet). I laughed and said hey this is my OWN wig!! Small victories=priceless!0 -
About the hands and feet... used the peas for the hour of Taxotere only... one bag per hand/foot ...worked great and stayed cold the whole time... No nail issues at all. Only 9 days post tx#1, but so far so good.
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Hair color for post treatment:
Loving Care level 1. it is temporary (6-12 shampoos) but works for a few months til you are ready for the stronger hair color.
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mtri111-how long after your last chemo can you use the Loving Care level 1?
Thanks!
Tori
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Hi ladies,
I can't keep up with all of the postings! I love it though, glad to hear about success with the caps! I'm 6 weeks out from final Chemo and hair is doing well. Still shedding, but that's ok. I too am starting to think of the day I can color my hair and cut it. It's really in need of a trim, I think I'll do that in a few weeks. I am curious about Loving Care too, 3 months out? 4 months? sooner? I'm starting to look for a hairdresser that will understand my chemo treated hair and how hard I worked to save it. I've heard Aveda products are good.
Anyone in the Detroit metro area have a hairdresser they recommend?
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I am so happy! I just got my first referral of a new patient from my Kaiser Hospital where I had my chemo. I had made up packets with a sheet of pictures of myself before, during and after chemo from different angles and also with a Penguin cap on. I also included a small handout with referrals to the Penguin and Rapunzel sites, this site, and a phone number for me. I also included a copy of the Washington Post article because it is my favorite. It may be working! On a side note- 3 radiation treatments down and 22 to go. After chemo and radiation the only "treatments" I ever want are facials and pampering "treatments". 0
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Julia~ Excited for you to be able to pay it forward! Good Luck with the referrals.
Michon~ Good to hear from you -- can't believe its been 6 weeks! Anxious to also hear more about when we can use a no- ammoninia, no peroxide color....
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I know it's only been 7 days but here is my progress - No hair loss.
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Steph42 - FABULOUS! thanks for sharing!
Now, I have to ask...how did you do that? I have pictures to share, but don't know how... thanks!
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Question to all of my fellow penguin sisters:
I have one treatment of TC left ( I have done 3 sessions of TC). I am day 55 from first treatment and have ALL OF MY HAIR!! For those who are finished with treatment, when did you start coloring your hair and washing more regularly? I am looking forward to doing so once I am done with chemo in a week. Thanks,
J
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Day #19 and lots and lots of hair. Just washed it for the first time since the shedding began. Is that first wash a nightmare? It was a bit alarming...actually FREAKED ME OUT!!!
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mje123~
Yea for having all your hair!
I was a baby about coloring mine - I waited almost 4 months before I got it colored by my hair stylist. She used a special "natural dye." Others may have colored sooner...
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Anniemomofthree-
Yes, washing it will be kinda of a freaky each time (at least, for me)...since you are babying your hair all the rest of the time, it will look as though you are losing a lot of hair when you do wash it.
After my first tx, days 17-24 was when I did the most shedding....In fact, for me, ( 6 tx of T/C) I would shed a bit more about 10-14 days after each infusion... You are so close to the 21 day mark though!
Hang in there!
peace and prayers,
Tori
DE COLORES!
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mje123 - I waited a full 4 months before having a temp stain color in my hair. That lasted about 4 weeks. I'm calling my hairdresser today for my next appt.
Colleen
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Hi Everyone,
Good to hear about those who have finished chemo and still have all their hair. Whoopie!!!
I am at day 21 since my 1st treatment. I was supposed to have 2nd treatment yesterday, on Thursday, but we had a huge snowstorm, so it was cancelled until Monday. So far have barely shed any hair, not even what I would normally shed. None when I washed my hair, and practically none when I comb with very wide tooth detangler comb. I even used a hair dryer on cold setting when hair was half dry by air and smoothed lightly with a brush to smooth down fly away hairs. I am due to wash my hair tomorrow-Sat. I think it will be okay, it will be 2 days before chemo treatment and 7 days after last wash. I really think it is because I keep doing the caps at home 3-4 times a week for 2 hours changing caps every 30 min. Frank says I must be doing something right!!
Keep positive!!
Nancy
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day 50 post first tx--still have hair!! It has thinned a great deal== 8 days since my 3rd tx--TCH -not too much extra shedding yet! I would like to get I trim--to even the lost hair out--is it NOT reccomended?? It looks so bag lady right now , if it were even--I think it would look fuller----so nervous of my hairs future, but so glad I have made it to my half way point of treatment!! Very happy to hear how great everybody is doing--we are strong in control women--love it!!!
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Hi All - I was freaking out a bit (just for a couple of minutes) re my shedding on day #19 after my first wash. I am on TCH, by the way, and I go back in for #2 on Monday. So excited, because I will be 1/3 done! Baby steps...
So, my husband (chief cold cap technician) reminded me that I SHOULD be shedding from the nape. That is where the handfuls - about 10 hairs each time came out yesterday. I had about 7 or 8 of these handfuls of hair after my first wash during the shedding period. I have a large head - measures >23inches. I am 5'10', so the head is not that freaky!
But, in the practice sessions the day before chemo (which I highly recommend) we had made a conscious decision that we would sacrifice the nape of the neck in favor of the front and sides of the head. We used approx three straps to get it as tight as possible. The reason that I bring this up, is that a few nights ago I went back to POST #1 in this discussion board. I got to page 19 after about three hours! One third done with the reading. somewhere in those pages is a recommendation to use the eyebrow bands at the nape of the neck if the caps are too small. This is brilliant! I will be trying this on Monday.
In reality, losing the hair at the nape of the neck is not a big deal. Really! One of my friends has super thick hair and she actually shaves about 1-2 inches off the nape of her neck with each haircut to get a more manageable pony tail. It is kind of cute/sassy when she has her pony tail up! The thing that was so scary was the volume of long hair that was in MY HAND! I honestly do not think I have shed (yet!) from the top or sides of my head...I need to be thankful for that!
Have a wonderful day, ladies. This is so helpful. I have my college roommate flying in this morning and may need to go "cold turkey" on the discussion boards for a few days...
Annie
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Folks discussing hair coloring-
I used that loving care level 1 right away, after completing treatments. Waited 2.5 months to do the full -salon treatment color and highlights.
For those experiencing annoying thinness, I discovered clip-in extensions. They are easily acquired on ebay, are human hair, lots of colors available, and not expensive to get a whole assortment. They are unobtrsuive, fun, can be cut to desired length, and they'll get ya through the night til your own thickens up.
My thinning was such that after 4.5 months post treatment, i decided to have "real" extensions put in. These are fairly expensive and requires an experienced stylist. The process is a bit hard on the hair, so requires confidence that what you have is strong enough to bear it. But, that held me for another 3 months... then they came out, and the natural hair is great, thicker than it ever was before. (I should add that my hair to BEGIN with was quite fine, shoulder length. Maintained that "look" throughout the caps process though!
ALSO: Anyone who would like my Tips Table for vanquishing chemo side effects along, with 2 flyers about cold cap use and hair care during treatment, please PM me.
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Hi all,
Well, I had a dream Friday nite, more like a nightmare. I dreamt that I washed my hair on Sat.(my scheduled hair wash day) and when I gently placed a towel atop my soaked hair to absorb the excess moisture(no rubbing)and when I removed the towel, my hair went with it. I awoke startled with a pounding heart! I realized it was only a dream, and conciously paid it no heed(or so I thought). Sat. morning I decided to wait til the afternoon to wash my hair, so it would look good Sat. nite, when we were going out to dinner and a movie with friends. After doing some chores, and after lunch, I decided to go for my daily walk and to wash my hair when I returned. Upon returning, I sat down on couch to rest and promptly fell asleep. I awoke in time to get ready and change clothes for dinner and a movie--no time to wash hair-thought I would do it when I came home. Came home after midnight--guess what?--no hair wash! Today is Sunday and tomorrow is Monday day of 2nd chemo treatment. Frank said don't wash hair later than 2 days before chemo and 2 days after chemo. That means I can't wash my hair until Wed--last hair wash was last Sat. I am now thinking about it and I believe I subconciously avoided washing my hair because of that dream!! The mind works in strange ways!!
Also I think something else was in the back of my mind.--I went to the hospital infusion center on Tues. to return the caps I had at home in my freezer to the special hospital freezer to get them to the right temperature for what was to be my 2nd chemo treatment on Thursday(was cancelled until Mon. because of huge snowstorm). While there, I saw a woman getting chemo and she was completely bald. I almost started to cry. I thought,WHY? This hospital has a special freezer and advocates the use of the cold caps. In fact, my oncologist is the head of breast onc. here, and she is the one who told me about the caps. I guess she didn't care about losing her hair.
I wish there was a better way to get the word out about the cold caps to doctors/nurses/hospitals and patients!!!
Keep Positive!!
Nancy
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Because of thinning I trimmed my hair to just below my ears to make it look thicker. Can't think of any reasons why you have to wait to trim your hair. I've been reading some of the hair color instructions. It appears that perhaps Loving Care is being discontinued because the instuctions tab sends you to Natural Instincts. One product looked promising which is the Garnier HerbaShine. It is ammonia free and you only leave in on for 10 minutes (most are at least 20). Anyone try this product?
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Thinking of u ladies going through trreatment right now....I had the hair falling out nightmare every week without fail but never lost my hair....remember the shedding is normal and u aren't brushing like u used too so hair will come out more when washing since ur not touching it most of the in between time. Will b four weeks out from weekly taxol blew dry my hair on cool n used my straightenr on the ends...I must say my hair look super healthy since I didn't use heat on it for four months going for H on wednesay going to show off n wear my hair down! Good luck ladies with treatment this week!
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I used HerbaShine but waited the full 4 months before trying it. It worked at covering gray and because I'm still only washing only 2 or 3 times a week (my hair seems healthier with less frequent washes), the color seems to be holding pretty well.
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Post Chemo Report:
Hi Ladies; I'm about 40 days PFC and the shedding finally slowed about a week ago. My new hair is growing in pretty fast (on sides and underneath, mostly, although there are a few funky spots w/ short hair on top that I didn't know I lost). It's a little more gray than before. My "old" hair is pretty dry and frizzy (my natural state but it's more so now), and I've started gently flat ironing the bangs w/o ill effects. I also had my hairdresser trim some of the scraggly ends a week ago. I was advised by the PCC people against trimming until the shedding slowed down. In 2 weeks we'll do a strand test w/ the Loving Care and then color it if that works out well. Also maybe try some hair extensions.
What else? I never lost my eyebrows and eyelashes; they thinned a little but only I would notice. I used DHC Eyelash Tonic on many days instead of mascara, but don't know whether that made a difference or I was just one of the lucky ones. Hair in various parts "down under" still hasn't come back yet. All other side effects of chemo have gone away except for muscle fatigue, which I guess I just need to be patient about.
Good luck to everyone still working thru the treatments--there is life after chemo!
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