Cold Caps Users Past and Present, to Save Hair
Comments
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Angiel, hope you're doing ok after surgery and you felt the prayers and good wishes from your cold cap friends. Come back and let us know when you feel up to it.
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Good luck Angiel!!! 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
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Hi Ladies, I'm home from BMX surgery & happily resting in my own bed. My pathology report also came back today and it was disappointing. After completing ACT neoadjuvent chemo, I guess I was hoping for a better clinical response. I had 3 out of 14 nodes positive as well as cancer still left in my breast tissue. - not much shrinkage. But at least the margins were all clear. So it's definitely radiation for me in another 8-9 weeks. Bummer.
Thank you all for your support and prayers! It helps more than you know :-)
Angie
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Angie, arghh for the pathology report, but hooray for clear margins. Heal quickly
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angie, glad you're home resting! Frustrating about the path report but yay for clear margins!
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Angiel - so sorry for the path report. But, it is what it is - chin up and press forward!
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Angiel - sorry to hear about your path report but so glad on the clear margins!!! Did your surgeon never do an ultrasound midway through chemo? I thought part of reason to do neoadjuvant was to check whether the chemo protocol was working. Makes me angry If they didn't do that for you.
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Ok ladies, my rollercoaster with capping continues! I washed my hair last night and this morning I lost SO much more, again. There was no way Toppik was going to cover everything so I threw on my full wig for the first time today. I'll save you guys from the pre-wig photos but it's like 10x worse than the last balding photo I posted here. Sitting here at my desk at work and I think I'm ok with my decision.
Will I keep capping? I honestly don't know. I have treatment tomorrow so when my dad gets into town tonight we'll decide if we go get the dry ice or not. I have 6 more treatments and since I'm already wearing the wig now, there's not much point to save the hair that's on my head. The long straggly hairs that are left won't do me any good since they're not covering much of anything. I see some grey whispys growing in but I don't know if it's enough to keep capping. Plus I have SO MUCH scalp showing that I'm petrified of frost bite. Plus sending the caps back saves me two more months of the monthly fee, which would be fabulous
And lots of money on dry ice. Love this group though so I'll be poking my head in and out to see how everyone is doing. Thank you ALL for all the help/support/recommendations/etc. I'm still really glad I capped this long and was able to keep my hair for an extra three months. I knew going in that the AC+T+Carbo combo was a crap shoot in terms of success but I'm glad I tried it. I would do it again in a heartbeat and would still recommend it to anyone that asks.
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Angiel I'm really sorry about your path report hoping things turn around for the better soon.
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Oh Stef -
I am so sorry to hear that you lost even more hair. If you are already wearing the wig, I am not sure I would continue capping. It is so much work, time and cost. You will be able to leave your Taxols so much quicker if you don't cap. I would be really worried about frost bite on your head too! I agree that at least you got to keep your haor for an extra 3 months that is something good!
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ok it's official, I made the decision to stop capping and just let the rest of treatment run its course.
If there's anyone in the Orlando area or if anyone hears of anyone that wants to start capping I'll give up all my supplies and stuff like the temperature gun and stuff.
After my decision to stop I immediately jumped in the shower with hot water and scrubbed my scalp for a good 10 mins. That might have been the best feeling since chemo started. Ha!
Thank you again ladies for all of the support! I'll keep popping in every once in awhile to say hi and see how everyone is doing!
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StefLove, so sorry the caps did not work for you, but I think you have a GREAT attitude about it all. How generous of you to offer your supplies up!
That dang adriamycin! Oh well, it is what it is - time to move forward. I think I would have made the same decision.
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StefLove, so sorry the caps didn't work. With six treatments to go, it didn't make any sense to keep going. You sound at peace with your difficult decision and I wish you all the best. I think it's important that new ACT cappers are aware in advance of the 50/50 success rate.
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StefLove, I'm sorry the caps didn't work for you but I love your attitude!! You are right in that you had extra time with your hair than if you had not capped and that is wonderful in itself. I bet it feels wonderful to take a warm shower and scrub you head!! Good luck with your remaining Taxols!
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Just finished my last chemo treatment day before yesterday!
I'm on day 65 from first TC treatment. Hair has thinned overall but no real bald spots so far. My hair is naturally thin and fine, and I had already mistreated it pre-diagnosis through overprocessing, ponytails, blow drying, and motorcycle riding, so I am really happy with the results so far. One big shed between first and second treatments, now I'm hoping for no weird curve balls due to post-chemo shedding :-o
Farewell to the Penguin cold caps! How I loved and loathed thee at the same time, hehe!
(to the tune of Leaving on a Jet Plane)
♫♪All my caps are packed
They're ready to go
The box is out by my front do'
I'm glad to tape them up and say goodbye…
….They're leaving by Fedex plane!
Don't know how I stood that cold brain!
Let's see if Penguins really flyyyyy….♫♪
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Hi 5 Wildflower2!
Singing along...
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Ha ha ha Wildflower! CONGRATS!!!!!!!!!!!!!!!!!!
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Getting through the 4th and final chemo was such a relief. The staff told me that I am the first person to try cold capping at my particular treatment facility so I was pretty much a curiosity for a while, I guess. But recently, I learned that a second capper had just joined the ranks! I was very pleased to hear this, and hoping somehow we'd meet up...well, guess what? About halfway through my final chemo session, I hear the familiar rumble of a cooler wheeling in, look up, and there she is! Woohoo! She is there for her treatment, too! The chair next to mine was empty, so we got to spend a nice half hour or so capping and chatting a bit! Talk about serendipity! I'm learning to expect nothing and anything with this "new normal"!
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Has anyone used arcticcoldcaps.com with any success? They seem to be fairly new to the market and don't have any testimonials on their website.
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051215,
I live in NYC and just went through chemo at Cornell, I did cold cap. I am happy to give you all my supplies, you can send me a private message.
Lucy
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there was a user on here that used them.
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Hi Ladies,
1st time posting here. My name is Melinda and I'm about to start neo adjuvant chemo for 3+ BC. I'm planning to use the penguin cold caps at UCSF in San Francisco where I am getting my treatment. Here's a question- I have really long hair (down the middle of my back) I was planning on cutting it off to a more manageable long bob since I won't be able to brush it much and use lots of conditioner. The info from Penguin Cold Caps says to not drastically cut your hair before. Anyone have advice?
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For those of you that are doing or did ACT chemo and kept your hair how much did you shed? I'm getting my 3rd AC today, but have been shedding a good amount everyday since day 22 after first chemo. I feel like I've lost a ton of hair already. It has thinned on the top, but no bald spots yet. I thought the shedding was supposed to slow down at some point. I had a lot of hair to start and hoping I can make it another 5 more rounds after today.
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Welcome Melinda! I'm glad you found this board. It's filled with wonderful and supportive women who are quick to jump in to answer questions and guide you as you go down this journey. That said, PCC doesn't recommend anything more than a trim within a few weeks of starting chemo. Reason being that the difference in weight can be a stressor on the hair follicles. I had long hair prior to starting and was going to to the same thing but I ended up just getting between 1-2 inches taken off.
Jbandkb, yes, the shedding is A LOT and it is constant! I think my posts from a few months back were similar. I was losing over 300 hairs per day during my morning comb- out. I used to think the same thing....no way would I have enough hair to make it to the end while losing so much every day....but I did and you will too. Yes, it will thin drastically but as long as you are not losing clumps, you are doing great! AC is so hard on the hair and it will continue to cause large amounts of shedding well into the Taxol portion of treatment. If your top begins thinning pretty bad, try changing your part. Just moving it slightly one way or the other will totally help. Also, have a bottle of Toppix on hand to fill in on the thinned areas. It blends so well with your own hair and really helps. Remember, the average head has around 100,000 hairs, so losing even 30% would be 30,000 - enough for you to lose an average of 300 hairs per day for 100 days.
I am now almost 9 weeks PFC and my shedding is maybe 10 hairs or so every morning for the last 10 days. I've started using my flat iron again and it didn't cause any additional shedding. Do you think I would be safe using heat on my blow dryer & a round brush? Maybe I should ask this question on the "life after cold cap" board but thought since I was already writing a post maybe one of the other veteran cold cappers might chime in.
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Angiel - I'm 10 1/2 weeks PFC, and I too just recently used my flat iron again. It was such a great feeling! I was wondering this morning about when I can start washing with warm water again. Have you started doing that yet?
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What shampoo are you ladies using??? I used unite through the capping process, and it was great..I just need a new "smell"!
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Whitney- I had my BMX last week and my surgeon said I couldn't shower until my drains were removed...anyway, my hair was pretty bad by day 5, so I walked into a salon and asked for a blow-out. I explained all of the cold-capping stuff...anyway, she used warm water for the wash & was very gentle when she scrubbed my scalp. She didn't didn't have a wide tooth comb, so she used a brush very gently. I think that part freaked me out more than the water. Anyway, she showed me the brush when finished and there were only 8-10 hairs on it, so I was pretty excited. I let her blow dry my hair on Medium heat using her fingers but then when it was almost dry, she switched to a round brush. No additional hair loss!! It's been 5 days since then and my hair shedding is still minimal. Fingers crossed, but I think my shedding has reached a point where I can return to warmer water and my heat tools. I still will be careful for the next month or so and practice infrequent washing as well as air dry but for those occasions when I want to look better, I will break out the brush, blower and iron. Yes, what a great feeling! I actually looked like my old self but with thinner hair - yay!
Alibeths - I am using the Oribe line of shampoo and conditioner and love the smell!
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Hi everyone,
VERY new to all this. I have my appointment with the BC on Friday. All my tests will be back in and I will go through my final diagnosis and talk about treatment. Since I'm triple positive, I'm going to have to do chemo so I've been reading up on cold caps and want to try them. How do you handle hair coloring if doing cold caps? I'm 43, but I'm probably 90% gray and I currently color my hair once per month. My hair grows quickly so by 3 weeks after coloring I have a visible gray part and the area above my ears. Do you have to stop coloring your hair? If so, what do you do? If I stop I'll look like a skunk by 40 days in. Thanks for any advice.
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edwsmom, yes you have to stop coloring your hair for the duration of chemo plus a period of time afterwards. I was in the same situation as you - color every 4 weeks and at least 90% gray/white; my natural color and the color I use is dark brown, so the gray growing out is very visible. I made it through - I did a color less than a week before starting chemo (a no-no, but didn't cause any harm), and when the gray started becoming more visible I used a cover-up color that you apply with what looks like a mascara wand, or a thick magic marker (two different kinds - can't remember the name). It helps, but as the gray gets longer it works less well. It only lasts until you shampoo. There are other products that others have used to cover gray - hope they will chime in. I did an all-over color with Clairol Beautiful (no peroxide, no ammonia) about 7 weeks after finishing chemo; I had my colorist apply it. I didn't sit under the dryer the first time - afraid of the heat. The second time, four weeks later, I did sit under the dryer and it worked much better. After that I went back to my regular color product at the salon. I had minimal shedding with my chemo regime - weekly taxol + Herceptin - so I used color much sooner than recommended by Penguin. I think each situation is different - depending on your level of shedding.
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Hi, I am starting my first round of Adriamycin next week. I will have 4 cycles of ac, followed by 12 cycles of taxol. I have been reading on the cold caps, and need advice? any advice? Is it worth the time and expense? I have seen where you can rent them, which is pretty expensive or purchase them through Cure Diva for a fraction of the cost??? Anyone who has had success, any tips?
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