Cold Caps Users Past and Present, to Save Hair
Comments
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Angiel you look great! Can't believe how great your hair looks especially from ACT. Looks like it's completely filled in. Glad your done with the initial phase of your BMX. Hopefully radiation goes by fast for you and you will be done with that phase too.
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Angie, what wonderful results with ACT - you look fabulous!
BB, I am shedding more hair now, nearly 3 years PFC, than I did during chemo. (I hardly shed at all on weekly taxol + herceptin.). I took tamoxifen for about a year, stopping about 1-1/2 years ago. I wish I knew why I am shedding, and I hope it's not just age-related. I haven't counted, but would guess I'm losing at least 40 hairs a day, and it's been going on for probably 6 months. Maybe my follicles are just catching up to a normal cycle? I've had a bunch of blood tests not related to cancer, and everything is normal.
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Thanks ladies for answering. Angiel you look great !!
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Aussie, I got a 1.5 inch trim about five weeks PFC and then another about the same a month later. If you've slowed down to very little shedding it should be fine--and will be a great pick-me-up. I had my stylist (who knew what was going on) do a very, very gentle dry trim, no washing or pulling. I think unless you feel your hair is very fragile, you should be ok.
(PS I got a no layers, super blunt cut and that made it look quite a bit thicker.)
Angie! Looking fantastic. Very nice.
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Beautiful Angiel ! Thanks for sharing your pic. That definitely gives me hope!
I am 11 days down from my 1st TCHP treatment. No real loss yet - crossing fingers!!!
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PatinMN, that is not fair that you were able to save your hair with chemo just to have it falling out 3 years later. Sorry to read that you cannot find the reason for the shedding. Regarding the age related shedding - I don't know how old you are, I'm 46 and I would hope not to have age related shedding yet. My Mom has been complaining about her hair falling out too, but she's 68.
I think I'm losing 100-150 hairs on wash days, and maybe half of that on other days.
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Would it be normal to shed more after last AC?I feel like I'm shedding more. I start taxol tomorrow DD 4 rounds.
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I hope you are doing well with the cold capping. I used Penguin cold caps from Jan. 30 - Apr. 3rd. I feel very lucky that my hair thinned by only about 20%. I credit this to the amazing job my husband did in making sure they were on so tight I thought everything would squirt out of my head. Considering the pain that is associated with cold capping, I wanted the results to be really good.
When I finished cold capping I was really anxious to get my hair colored because I had lots of gray showing. I waited 2 months and then I used what my hairdresser called a "demi". It is available to salons and is made by L'Oreal Professional. She said it wasn't available to the general public. It is much less stringent than regular hair dye. I was still nervous that my hair might fall out with this and I would have been really upset after all that I had gone through. But, yeah it worked great. Color was good and my hair stayed in decent shape. Two months later I had her give me another one. Same results -- great! At 6 months I went back to regular hair coloring. It has only been a few days, but everything looks fine!
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Twotimepammie-
Welcome to BCO! We hope you find this to be a supportive place, and thank you so much for sharing your story!
The Mods
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Hey ladies
I just wondering if anyone knows the reason why we shed for so long Post Chemo? This Thursday will be 8 weeks PFC for me my shedding has slowed down and on top of my head I have lots of new growth that is 2 inches long and just sticking straight up which is exciting. Another question to those who have stopped shedding, did you stop shedding altogether or did you just go back to pre chemo shedding? Also will my hair thicken up again as it was post chemo or am I stuck now with this thinner hair?
Aussie girl
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Jbandkb, I shed quite a bit following my last AC - well into the Taxol portion of treatments. And then it picked up again after I was completely done with treatments.
BB and Patinmn, I hope they can figure out what's causing your shedding. Pat, that's crazy to be shedding so much this long after chemo. How frustrating for you both! BB, that does seem like a lot of hairs to be losing daily at this point. Yikes! I am 44, so right in your age bracket & I don't think we should be shedding like that yet.
Aussie, I'm not exactly sure why we keep shedding but I know my MO told my it can take up to a year for the effects of chemo to be out of your system...so maybe that plays a part. Also, I'm sure some follicles become partially damaged & just don't lose the hairs immediately but the more wear and tear to the hair after chemo just causes them to fall out. One theory from a hair stylist.... if we went in to the salon after our last chemo & had an aggressive scalp massage & hair wash, we would loose a lot of the hairs that would eventually fall out over the next few months. That's why we continue to be gentle for months afterwards, I guess.
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PatinMN, if they are blocking your estrogen, that may be a factor.
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pch, I took tamoxifen for less than a year but stopped about a year and a half ago. Not taking it or an aromatase inhibitor now. Maybe my issue is what angie described - partially damaged follicles that didn't fall out during chemo, but have now decided it's time to fall out 2-1/2 years later. Or it's age-related (I'm now 63). Or - maybe it's just a cycle of hair loss that's out of whack. Way before chemo I sometimes had periods of time where I seemed to lose more hair than usual. When I had my first trim after chemo, my hairdresser said my hair was thicker than he'd ever seen it before (I lost very little on weekly taxol). So maybe I'm just getting back to normal...I can only hope.
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Aussie-Girl, I'm 8 months PFC and because I have new hair growth underneath the hair I didn't lose, my hair already feels thicker. I also cut several inches off, which helped it look a lot healthier. I'm back to normal highlighting and it's such a relief to see how little I shed now!
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Oh yeah, Pat. I'm 53 and way before the first hint of any of this, my hair started thinning a little. It was always almost unmanageably thick (but relatively fine), so I didn't mind not having to use a whip and a chair to get it to behave. Now … I'd like to hang on to the good soldiers who stuck around. Still mildly shedding, but I'm trying to go with the flow. Also, my hair always tended to shed a little more in the fall after growing like crazy all summer. (And really, how much attention did we ever pay before? It's easy to over think it at this point.)
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Hey ladies, I haven't been around in awhile since I stopped capping but wanted to throw this out there....
I have an unopened bottle of Toppik in Dark Brown as well as an unopened Touchback Temporary Color Marker in Dark Brown that I'll send to whoever wants and needs them! Never got around to needing them and I dont want them to go to waste.
If you can, just PM me instead of post here and send me your address. I'll try to get it out this weekend in the mail! First person that responds gets the goods!
On the plus side, I'm DONE with chemo on Friday and my hair has defintiely started to grow in. I look like a mad scientist because it's gray, straggly, and insane but it's growing! And I'm actually pretty used to the wig now. I've even seen people at work that I haven't seen in awhile and they all comment how they love my new bangs (the wig has bangs, I never did before). If only they knew!
Hope you're all doing well!
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Awwe, StefLove, I was just wondering how you were. So happy to hear you're just about done running the gauntlet. Good shooting, girl. The hair will come. Being done with chemo … fabulous.
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good to hear from you Stef! I've been thinking of you since your last post. Glad your hair is starting to fill in spite of the caps. Cheers to you on Friday!! Way to go girl! And I agree, bangs can be fun- enjoy!
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Aussie-girl, re: shedding: I have always been a heavy shedder. PFC, I continued to shed for 4 months and then it literally stopped within the course of a couple of days. As one of the early users in the US, I didn't know PFC shedding was normal. Then I thought my hair wouldn't stop growing -- it was so thick it was hot. Then it slowly got back to normal over the course of a couple of years.
Btw, I have just completed all of my AI treatments -- woo hoo! For exactly my type of cancer dx, there is a new test called the Breast Cancer Index which uses one's original tumor sample to predict whether or not an add'l 5 years of hormone therapy will be beneficial (only 3-5% of women will benefit from more than 5 years treatment). It will also predict one's chance of recurrence in the next 5 years if any. I'm having the test done, then I'll know whether I should keep going longer or whether I'm finally done with treatment. I continue to be amazed at how I've benefitted from new tests and treatments, from the Oncotype test to my chemo cocktail to cold cap therapy to this new test. Sorry to stray off-topic, but the thought of being able to say "I'm done" has me giddy.
Btw, here's a pic of me from a few years ago, taken in Havana (on a State Department-sponsored person-to-person trip studying the amazing health care system. They have vaccines to prevent lung cancer!). My hair was at the peak of post-chemo curliness...plus it was super-windy :-) It looks more like it does in my profile picture now.
Susan
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sebm9,
Did you notice any hair thinning from taking the AI?
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sebm9 - thanks for sharing the info on the BCI - hadn't heard of that yet! And huge congrats on being DONE!!!!!
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Congrats sebm9 on being done 🎉🎉👏🏼👏🏼 hope they can do this type of new testing in Australia because as I'm only 40 years old my Onc is talking about leaving me on Tamoxifen for 10 years, don't want to be taking stuff if it's not absolutely necessary.
God I hope and pray this shedding just stops soon so over it now and it's only been 8 weeks PFC patience isn't one of my virtues:-)
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A quick confession - I colored my hair last week at 10 weeks PFC. I couldn't take the gray, yellow, white, brown look I had going on. I stopped shedding around week 8, so I figured I'd give it a try. My stylist used a Redken semi-permanent (ammonia but no peroxide)and put me under a medium hot dryer for 15 minutes. The color looks great and I have no increased shedding. Plus, I actually feel a bit like myself again!!
Hair before chemo -
Hair after chemo
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oops, photos did not post.
Before chemo
After chemo 11weeks PFC and color (and + 10lbs!
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Great pics scarlw
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Hi Wildflower2, I did not notice any thinning due to AIs. I have always been a heavy shedder and continue to be, but my hair is "normal" as in pre-chemo.
Scarlet, you look fabulous!!!
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Scarlett, congratulations. Your hair looks great- another cold cap success story!
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Hair looks great Scarlett! Glad the coloring went well! I think I may give it a go this week. Too many little white hairs poking out everywhere and the 28-day color just isn't hitting the mark.
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Hello Everyone!
Thank you so much for the inspiring pictures and posts, love the before and after--Scarlett, you look great!!!
I had my first treatment of AC (4 cycles, bi-weekly) on 9/21, using Penguin Cold Caps, and I'm curious how often everyone washed their hair between cycles of chemo? I have only washed once since the first treatment (48 hrs as recommended) ugh!!!
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I eased mine every 4 days.
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