Cold Caps Users Past and Present, to Save Hair
Comments
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Happy Saturday everyone:
I'm 9 days past TX#3 (TC and H when they can add the Herceptin back) and the first few days after I had a bit of shedding but the past few days very little. BUT, the SEs for #3 have been the worst yet. I would have thought by Day #7-8 I'd be back to normal but yesterday was one of the worst for nausea. I had to force myself to get on the treadmill and I think it made it worse. Hoping today finds things settling back down. I'd like to have a few days of feeling good before they zap me again with #4 and again if the Herceptin is added back MY LAST since my doctor agrrees with the 4 verus 6 even for TCH.
Hey NMoss: Hope you are doing well and wow #4 . almost done. Don't you just cringe when people say it seems to have gone so quickly.....they just don't know do they?
When did everyone notice their hair growing back in where they lost it with the caps? I have a friend who didn't use the caps and her hair started growing back during chemo (she was on TCH too).
Arlene
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LivCar: Yes, the shedding is a normal part of the process. This timeline is about the time where your hair would fall out. It won't! Don't freak! Just take it as a reminder to baby your hair and follow the hair-care protocol (it is very important to the success of cold cap therapy). You will have general shedding, and will have a rhythm to it, but know it's normal and try not to worry (worry can also cause shedding!). Shedding tends to be heavier on your hairwash days, since that only happens once/week it is the cumulative effect of one weeks' normal hair loss plus chemo shedding.
Don't stop combing your hair! You'll get mats and that's not good. Use a wide-tooth comb (I use a pick-type comb) and do it gently. Hold at the roots so you don't pull, and work from the bottom of the hair shaft if you are untangling. My hair tends to tangle, and I used conditioner throughout the process without incident.
I was a heavy shedder even before chemo, having lots of thick hair, so to keep the loss in perspective I collected my shed hair in a baggie. Whenever I worried the caps wouldn't work (I was one of the earlier users), I just held the baggie next to my head in the mirror. The results were clear!
[I just finished unpacking (new house) and found my baggie. I chuckled at the amount of hair in it. I think I used to count by the tens of strands, but there's maybe a handful of hair in the bag. At the time it seemed like tons.]
ArleneA: My hair started growing back during chemo. My existing hair grew throughout, and new hair came in even as the PFC shedding continued. The new hair grows back even faster than the existing hair grows. My new hair is halfway caught up to my existing long hair.
Hmm, as I wrote that, it struck me: I'm nearly one year PFC! wow! At this rate, by Labor Day my hair will have evened out.
The other interesting thing is that, as is often the case, the new hair grows back very curly (mine is like corkscrew ringlets, esp. at nape and above the ears). But my existing hair, while already wavy, became super-curly post-chemo also. I'm glad, because the shorter corkscrews blend in a little better.
To those facing rads: I found it to be a non-event, piece of cake, zilcho SEs, and super-fast. I used corn starch and, at the end, a little aloe vera gel on the treatment area. It was also an interesting transition, because in rads you aren't an anomaly: lots of people still have hair, not everybody goes through chemo. My care team did do a double-take when they saw I'd gone through chemo, and were very interested in the caps (my rad onc invited me to speak at tumor board).
Cheers,
Susan
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Hey Keeppositive/Nancy. Aa far as the 4 vs 6 TX are you talking about Taxotere and Carboplatin? That is what I am taking and my doc says that I need to do 6. I have done 2 so far and have very bad side effects even winding up in the hospital with the first TX and not being able to breathe during the second one. I would love to only do 4......
Chris
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Thank you for the positive feedback. Susan - you're always to first to not only reply, but send lots of info. It really does help. The shedding I've had this week is in the hundreds each day. I nearly filled the sink with today's hair washing. I just worry that instead of falling out in clumps, that it's shedding it's way to nothing. BUT - I trust all of you and I keep focusing on what's left on my head. I just put it in 2 loose braids so that it would stop landing in my kids' food! I haven't been using the caps at home - maybe I'll start. Thanks ladies!!
Is anyone other than Maria in the Detroit area??
Pam
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Hi all:
As far as shedding, it is normal for us and for everyone-you normally shed hair everyday to make room for new hair growth. A sink full must mean you have a lot of hair to begin with, so you will shed alot. Don't pull on it and don't use anything except a wide tooth comb and hold onto it near the roots and gently comb thru. Don't fuss with your hair like you normally do, just comb it and leave it alone. Use only chemical free or organic products-shampoo and conditioner. The pictures of those of you all seem to have long hair and it looks fabulous--you should see what short hair all grown out of style and color, looks like--it looks like Hell!! I don't know how to do the picture thing, if I could, I would.
To quill/Chris: The 4 vs.6 treatments are not for Taxotere and Carboplatin--it is a different TC. My Onc. is head of Breast Onc. at New York Hosp. and she said it isn't about Taxotere/Carboplatin, or TCH(those 2 with Herceptin added)but for the other TC. She said 4 are as good as 6 for that other TC, but not TCH.
I have shed about 1 and a half snack size baggies full. I don't see any new growth, only my hair getting longer. I am sure there was more shedding, but I didn't catch it. I didn't have any bald areas on sides or nape, I think it was because I have a small head and short hair and all fit under caps with nothing sticking out. I also used caps at home from reg. freezer--every day for the 1st week after chemo #1, and every week for 3X a week after that. Also no other hair has come back yet! Still have eyebrows and lashes. I have used and am still using generic Latisse every night on lashes and brows. Google generic Latisse and you will find it. It is 1/2 price of Latisse (about $56) and you don't need a prescription.
When I started my hair was about a Pixie length, now it is past my ears and the back is almost at my shoulders, at the base of my head. It's not long, but it ain't short either!! I would say it has at least doubled it's length. My color is normally very dark brown and the same when dyed--today I wore a black and white outfit and guess what, my hair matched it!!! Ha! Ha!
Keep Positive!
Nancy
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Question for those who have completed ice cap therapy.....
When did you start to treat your hair normally after the last treatment? In terms of washing, coloring and blow drying?
I'm getting ready for first treatment Tuesday TCx4. I am getting very anxious. Going to try on caps this weekend etc and prepare other things required. I do worry about the shedding though. Recent threads indicate that some women are shedding quite a lot of hair, when I have fine thin hair to begin with and cant afford to lose a lot more.
My hair will look like hell during treatment as it is the wash daily type, unmanageble or styleable without a daily wash. I will be wearing scarves and hats for the duration of chemo.
Thanks to all women "paying it forward", you all provide great support and encoragement to all the newbies out here. I find my confidence has been shaken to the core with this dx, facing subsequent treatments and impact of those treatments to my self esteem, outward appearance etc. At least it is comforting to glimpse into the crystal ball by reading sucess stories of women here.
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Hi All - quick update between Bat Mitzvahs, birthdays, and sports! I am 4 weeks post final TCH chemo. I have not noticed any additional shedding, it has been the same shedding as through my six rounds of TCH. I still baby the hair, though I am washing every 5 days now instead of 7. I still use a ton of shampoo and even more conditioner (Intelligent Nutrients - organic). I use moroccan oil cream to smooth out the frizzies. I use Colormark for color. It is a color disaster right now!!! I dry hair on cool setting. All is well. If I have some guts this week....not sure I will....I may color it.
Oh, and my hair is absolutely growing back...yeehaw! I have 100% gray sideburns that are at least 1.5 inches long. I have hair sprouting everywhere in my head, because I made my sis look for it. I have a ton of gray kinky hair growing in the nape area where I lost it, at least 1-2 inches long. It is so interesting, because I can see the new (all gray) hair in contrast to the old gray and color tipped hair.
Life is good. We are all going to make it through, with each others help, these crazy times!
Love to you all!
Annie
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DebRox: first, the most important stuff: you caught your cancer early and have no positive nodes. And, you are hormone positive and HER2-, so you will benefit from adjuvant hormonal treatment after the other treatment(s) you go through. You are going to be fine! Scary as it is, you benefit from a lot of the recent research and improved treatment protocols and have an excellent prognosis. Try to keep that framework around the rest of this and just take one day at a time.
You will shed hair while going through chemo and using caps, but only relative to the amount you already have. If you have thin, fine hair, you'll shed less than those of us with thick hair. Youl'l shed more on some days each cycle, and it'll seem heaviest on wash days, but it's a week's worth of hair shedding all saved up -- some of it would have been normal anyway, and some is extra from chemo. Keep following the protocol, and you'll have done everything you can to alleviate hair loss. Are you on TC? Results with PCCs are outstanding with this chemo.
I thought mine was going to be unmanageable also. Esp. the first couple of weeks, but surprisingly the infrequent washings helped balance the drying effects of chemo. You've always got scarves, hats, hairbands to dress things up if you like, but odds are you won't need them due to hair loss. (I found that rinsing every day helped my hair have it's normal curl and look.)
My last chemo was June 21; I didn't resume multiple hair washes/week until around Labor Day. Didn't resume warm water until around Halloween. I don't color my hair but lots of women on the list can advise you when you get to that point. Just take it day by day!
Our femininity takes an enormous nuclear hit with bc diagnosis, beyond the cancer diagnosis itself. It is wonderful to have a tool to preserve an important part of our identity and sexuality, our hair. I remember when the Good Morning America story came out, and many comments on their web-board were things like "how can these women be so vain as to worry about their hair in the face of a cancer diagnosis?" As if it were a cosmetic issue rather than one of empowerment and managing SEs. To me, PCCs are the holy grail in managing the most devastating SE of chemo. And, even if people choose not to use them, it is -- finally -- a choice. We don't get many choices in any of this!
quill: taxotere/cytoxan is the one subject to the 4 vs. 6 treatment discussion.
Cheers, all!
Susan
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mdg - My eyelashes and eyebrows hung on until about a month or two after chemo. Eyebrows only thinned out, but my eyelashes went by about 80%. I had one really long one hang on, looked funny, but better than nothing. They grew back very quickly though, they are now almost as long as that long one! It's not as bad as you expect. Only I seemed to notice it and had to point it out to my friends. (I'm 5 months pfc)
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Congrats Drim!!!
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Livcar - I had very thick hair that was down to my shoulder blades and when it started shedding (around day 17 or 18) I also filled the basin! I might have over combed my hair thinking I'll get all the loose stuff out and that lead to more thinning; but I did not go bald.
And as my husband likes to point out, I always did shed more than our two cocker spaniels (in full show coats!).
Colleen
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As far as hair growth duing/after PFC..I am only 3 weeks PFC and I have not noticed any new hair growth at all. I did lose hair around the sideburns but nothing started to grow there during chemo for me . Everyone says the new hair grows in gray....I have not noticed any new hair growth anywhere yet. I am sure it will happen in time soon enough. I do have about 1 1 /2 inches of roots so my hair grew a lot since my last color job which was about Feb 22nd.
Debrox and Liv Car: Shedding was crazy for me the first time around. I started shedding like crazy on day 21 after first treatment which was the day of my second treatment. Those first several days were horrible shedding...I cried when I washed my hair and was upset all day/weekend! Don't frett...it will level off. You saw my photos...I still have my hair. Is it thinner than before? Yes. Can anyone tell? No (except me). If I want to feel better about it, I use some extensions and it looks even better. No one can tell I have them in. I felt exactly like you guys before I started and during the first shed.. I was freaking out. You can do this. It will be OK. Yes, there is some compromise...your hair will thin but you WILL have hair. LivCar - we will meet up for lunch and I will prove it to you! You can see for yourself! Now my shedding is still more than normal (pre chemo) but less than the "big shed".......hang in there.......Hugs!
Mishcon: I keep thinking I will get to keep lashes.......sounds like everyone lost them after PFC. Did you get fake ones? Anyone have recommendations on the lashes? I normally have very long lashes so it will be noticeable - I just want to be prepared.
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Lost my lashes about 4 weeks post chemo--I bought a walmart false eye lash brand that came with the adhesive they called it a "kit" "Ardell" was the company --the lashes come off easily with water--so no damage to the new ones trying to come in--the cost was 4.95--I use them only when I go to work--they make me feel more confident--why?? Don't know but they are easy to apply and look great!! I bought #110--there are lashes that are thicker--I didn't want to go overboard!
Hope that helps!
Sharon
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Ladies: Do not panic.....believe me I did and everyone kept telling me it would be ok. Yes, the first one is the all time worst for shedding and no matter what we tell you, you will panic when it happens. I filled a gallon baggie. I'm 10 days past #3 and just minor shedding. I shampooed yesterday and yes I shed but since we only shampoo once a week, it was minimal considering we don't comb as often either. I have hair, yes way thinner but hair and I'm so happy.
I'm a bad girl and shampoo in tepid water and then rinse thoroughly with as cold as comes out of the faucet which is what I've always done anyhow. I also use the curling iron (low temp) on my bangs but I'm also not losing much hair on the top. AND I am using the ElastoGels and not the Penguin's so if it worked for me, you will be just fine.
If all goes well and my Herceptin is added back, my onc is ending my Chemo at #4. May not be what many of you consider the right way to go since I'm on TCH but I trust my onc as she is Board Certified in Oncology and breast cancer is all is deals with and she is also (like most oncs, I believe) Board Certified Internal Medicine. If she changes her mind, I'll do what she says but for now I'm hopeful that H will be added back and I'll be done with Chemo June 6th.
Good luck ladies and trust the experts on here (I'm sure not one but have been where you new ladies are at). Come here often for encouragement.
Arlene
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ok - thank you to all of you. I've been in shock over this hair loss ... i don't know what i would do without all of you to give me a reality check!!!! Here's a question ... If the big shed is 21 days after first chemo - is this my first chemo shed, or a combination of the first two? I'm dose dense so i've had 2 treatments in that 21 days. i've heard most people go bald after 14 days from chemo. Is our cycle 21? will i shed every 21 days? or will this be ongoing, every day?
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I was on taxotere and cytoxan and got it every 21 days. I did not notice a shed pattern. My big shed lasted from day 21 to about day 32. Then shedding seemed to level out a bit. I have not noticed a distinct pattern but it is hard to know when you only wash once a week.
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Hi Livcar it's ok , your ok my first big shed was insane. I lost a ton of hair. I would say ease on the combing unless it's to remove tangles which is crucial. Hold your hair from your roots and only use a wide tooth comb. I would refrain from washing until the shedding slows down. I had one big shed post TX 1 at 21 days. For TX 2 it was half of TX 1 and for TX 3 half of TX 2 so it reduces. I go for TX 4 tomorrow so we will see.
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Hi all:
Just came from the beauty parlor--I had a hair cut. It looks a lot better now. It is shorter and neater. My beautician couldn't believe how long it grew during chemo. She said when I shortened it it would look thicker, and it does. Before it was scraggerly and looked lousy, now it's cute. I washed it just before I went there and she just spritzed a liitle water on it and used my comb. She gently combed and cut. Then she used my spay-on, leave-in conditioner and used the blow dryer on cool and styled with her fingers. I feel great and look 100% better. She even used my Colormark to color the roots in front. Next time, in about a month, I will bring some organic coloing and she will cut and color.
Susan/sebm9 : I agree with you 100% about the empowerment of doing the caps and the importance of having a choice!!
To DebRox: Don't worry, if you have thin hair, you will shed less than those with thick hair. The more hair and the thicker the hair, the more it sheds. You have to baby your hair for 6 months after chemo, but you will see, it will be worht it!! You won't be bald!!!
Kepp Positive!!
Nancy
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I'm only combing once a day (with a wide comb) - to help with tangles. The hair is just hanging off the bottom. Most of my hair loss is just removing the dangling hairs. I just sweep the bottom and the hair just falls out. I'm feeling much calmer after hearing from you guys! Thanks ladies!
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Yeah Nancy - isn't that the best feeling to have haircut?! Congratulations!
LivCar - I lost so much hair at the nape I did get a haircut in the middle of chemo, took about 1/2 inch off the scraggly back. It looked so much better, thicker, etc. I just felt better. I know that no one advocates this, but I always felt like I was trying to deal with this bizarre hair line in the back.
Hang in there everyone, you will do great!!!
Annie
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Nancy - your beautician is taking the same approach as mine. Shorten the length to make it look fuller. Just getting rid of the straggerly ends makes a huge difference.
Colleem
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I am planning on a trim too in a few weeks to make the ends look better....they look a little scraggly...(is that a real word??? you know what I mean though...).
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Hey Maria - the extensions you used .. is it one long strip of hair that goes in? or is it pieces that you put here and there? know what i mean?
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Drim, hey lady, so nice to hear from you I'm so glad your doing well, things are great on my end!!! what a road we have traveled! couldn't have made it without you girls!!!! i started on page 18, now look at where we are!!!
Great to see some of our pioneers coming back for support to our new girls!!!love this site!!!!
love Chey
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Hi there everyone:
I just spoke with Frank and I found out there is an organization called Penquin Cold Cap Users Association, started by users of the caps and they have written a brochure and distribute it in the U.S., free of charge and we can e-mail Carl and ask for them to be sent to us directly. I asked for a few hundred so I can give them out everywhere they will take them and display them. I will still be doing a poster, but first I need to see the brochure. (Also, my sister in-law, the graphic artist, is going in for surgery, so we are on hold for that reason, as well.)
Frank also need testimonials for the Cancer Center of America from users past and present--any of you willing to do so, please contact Frank and let him know.
Also the person or persons who have the data for the studies done on scalp mets that are positive towards the cold caps, please send Frank the information so he may download the data. He has the Cancer Center of America in Philadelphia all set up with a freezer and caps ready to roll, and now the Dr;'s and/or nurses are discouraging the patients who were willing to do the caps, by telling them they are worried about scalp metastises!! That old bugaboo rearing its "Ugly Head" again!!!
Plese help him, he has helped all of us, so much!!!
Keep Positive,
Nancy
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LivCar: I just use one set that has 3 clips in it. It goes accross the back of my head and a little around the sides. I can wear my hair pulled back in a pony tail, wear the front pulled back, wear a headband or wear my hair down with these in. The brand I got was Evita I believe. I got them at Lee's Beauty Supply in Southfield if that helps. Like I said there were 6 different extensions in the kit...I mostly just wear this one when I feel like it if I am going out or doing something special.
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Hi everyone
Regarding getting positive publicity out there to MD's and the general public-Someone on earlier post had suggeted writing a article for Ladies Home Journal. I have done a lot of writing in my previous job and would be willing to write an article (with all of your valuable input) . Are there cold cap users (current or former) who would be willng to submit their comments so I can put the article together?
Regarding helping Frank, I agree we need to help. My onc said it was very rare to get scalp mets Where is the research that says this will happen or not? Wierd that a cancer center would get a freezer and then discourage patients. There may be some types of cancers where cold caps would not be recommended but this information needs to be brought out and validated with research.
Also my daughter who is a fillmmaker (has had shorts- documentaries on HBO and also in numerous film festivals) is considering making a documentary on cold caps. I think it would be a fascinating and useful documentary. Maybe PBS or HBO would be interested? Women and men should have a choice and right now they don't even know about it. Would people be interested in participating, interviewed or being filmed?? What do people think of this idea?
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Hey serenitywisdom~
Count me in...
It has been a year since my treatment and my hair is thicker than it was before treatment.
I only lost right under my ears and it grew back gray and curly.
I thank Frank everyday.
My oncologist researched the heck out of the scalp metastasis before she agreed to my using the Cold Caps.
Let me know if I can help at all.
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Serenitywisdom...that is a wonderful idea. It was my Dr that mentioned cold caps. I then went home and researched - found Frank - . Frank impressed me with his generosity of spirit. He checked in on me and was a phone call away. Amazing that he was so busy but he made me feel as if he had all the time in the world.
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Serenity: I am having difficulty getting the video off my phone..I know I was going to send it to you. I have not been able to figure it out. I will ask DH for help. He is traveling this week and we are out of town for Memorial Day so it won't be right away. I am willing to give comments and feedback on using the cold caps. I am so glad I used them.....it has changed my attitude and helped me get through chemo.
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