Cold Caps Users Past and Present, to Save Hair
Comments
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Are there any products we can use on our hair to help with the dryness? Seems to be getting matted because of dryness. Help. Im.using Kenra leave in conditioner. ... not really working. Trying to stay positive.... these last few days have been tough. Didn't realize the chemo part would be so easy and PCC would give me so much stress
thnx ♡ Kim 0 -
goldenpaws - I used and still use Macadamia Nut Oil deep repair Masque on the length. After I wash and condition, I use Alterna Caviar Protein Cream and Josie Maran Argen Oil Hair Serum (onlyJosie Maran works for me. It's amazing) My hair never dried out or even got one single split end. I have long fine wavy hair. Hope that is helpful.
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I love Kenra but my hair tends to be oily so I didn't want anything too moisturizing. Especially because I can only wash it twice a week!!
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MIMomma1 - (((hugs))) to you. It is upsetting, to say the least, to be told you have breast cancer, but, it is not a death sentence. It is a disease that can be treated and life will go on. Please do not feel ashamed that you have it. You didn't cause it. It just happened to you. It can happen to anyone. Even men get it. My husband's best friend got it, much to the guy's surprise.
Like Goldenpaws, I found I was wiped out for a few days after each treatment, from about day three to day five or six. It got better by the middle of the second week, and by the third week I was able to do almost anything. I found that getting up and moving after a few days helped to get me back to feeling better.
Accept all of the help you are offered, and give people specific things that they can do for you when they do offer to help. Get friends to take your kids to Homework Club, Scouts, etc. Don't feel guilty. You can return the favors when you are well and healthy again. You are going to need to rest and to take care of yourself during and after chemo. Chemo's not easy and it takes a toll on your body.
Plan ahead. Stock up on regular items you would need for your household so that you won't have to go to the market as often. Lay in supplies of toilet paper, paper towels, toothpaste, shampoo, dish & laundry soap, pet food, canned goods, etc. That way you or whoever will do the shopping will have less to pick up. When I was going through chemo and radiation all my husband had to do was get fresh foods, and when I shopped, I didn't have to carry lots of heavy bags when I was feeling less than great.
Good luck!
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DaniellaD,
or anyone else out there that knows... hope you can help me with a bit of advice. Just had my first round of taxol herceptin, and am using the PCCs. My roots are turning silver very very fast. I've heard that one can use colormark on them as a concealer while doing the PCCs..or is something else better? I really need something up top fast!
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Hi Suladog - I ordered and just received my Toppik in the mail today. Will give it a try. I completely get it. If you thinned around your ears it seems the only hair that stays is gray. Lovely. I also thinned right at the back of my part. Hoping toppik will take care of that too. Color Mark has been recommended and seems to work w others. Haven't try it myself. I'm Day 27 and I've had a big shed. Seems to be letting up but who knows what will happen at my next wash. Maybe I won't wash until the Spring. Lol. Best of luck ♡ Kim
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Suladog - I used Colormark. It definitely helps, but doesn't cover completely. For me it just sort of toned down the gray. My salon color person used a spray color - I think it was a Bumble & Bumble spray - and it turned out awesome! That was actually after I finished chemo, though, and I never used the spray on my own because I had my hair colored only 7 weeks after chemo. (I wasn't shedding at all.) I do think Daniella had some other suggestions - she'll probably pop in soon.
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suladog - get Style Edit spray. Less messy than bumble and bumble and really covers a lot - also less expensive. Rita Hazan is another one but expensive. Toppiks will help blend grey and add volume. I used touchback concealer- which is like a magic marker for grey, around my hairline. It comes with a tiny comb so you don't mark your scalp. I still use it daily bc I can't color. I also use Wow powder root concealer and Joan Rivers fill in. Both work well. Colormark didnt work for me and was too messy. So it just depends on your Preference for styling and what or where you are Covering. I'm a beauty junkie- I tried them all. Order on Amazon
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here's a dilemma I am facing and wondering what you ladies would do. I used the penguin caps this past summer and kept most of my hair ( no one but I see the thinning) anyway recently found met to liver. So seems I am a stage IV. I want to use the penguin caps again but am getting the impression that people around me think its futile cuz they think I wont live long anyway. Maybe I will live a while yet, and I can tell you it was Worth it having my hair thru this ordeal..0 -
So sorry to hear of your new diagnosis, Mrygolds. If the new chemo regimen works with cold caps, go for it! I think that is what I would do. I feel so much better with my hair! Thoughts and Prayers are with you...
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Agree with JeneferE! If the caps work for you, and it is important to you - go for it!
Don't let anyone else's views change your mind - I mean talk about Debbie Downers? No one knows exactly the hand you've been dealt - makes me mad that people are responding like that.
Stage 4 Dx sucks that's for sure - but I don't think anyone should be planning for your immediate demise either!! So unhelpful!!
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There are so many women living with Stage 4--go ahead and save your hair! But since you know the Penguin Cold Cap routine, you may want to switch to Elastagels. Several women in this forum are having good results and the Elastagels are cheaper than Penguin.
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Leslienva;
elastogels can be purchased where? You are probably right. I will go that route unless penguin can give me a frequent flyer discount (LOL) I feel normal with hair JeniferE. Cant imagine being bald!
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RainDew For Sure! Debbie Downers Is right. How can you fight this if you don't look normal or "healthy"?I am a true advocate for ColdCaps! Tired of seeing the Bald Barbies etc. I made a comment last summer on having my hair after chemo on Breast cancer survivors on Facebook and someone Private messaged me not to mention it cuz it makes other women who lost their hair jealous. interesting huh..? I have NOT mentioned it since. I will post a pic...NO one would Ever Guess I am fighting cancer. Thanks to ALL who replied to my question. Blessings Mary
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You can find Elastagels on Amazon.
I think a lot of cancer patients don't even know about cold capping. But some say they're not concerned about their hair and think we're being vain. I've mentioned them at a few cancer-related functions, but I've kept it low key on our winter chemo FB page because no one else seemed to be using them
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I think some women truly do not wish to ever use cold caps - it just adds stress to the chemo for them, instead of making it better. One more thing to handle at an already stressful time. Or they just don't want to deal with the cold.
But for those who don't know about CC's until after the fact or even worse know about it but couldn't afford it - it has to be heart wrenching for them to hear of our ability to keep our hair. So I try to keep that in mind and am careful when I explain how I saved my hair.
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Dancetrancer,
so true. A friend of mine whos' daughter had treatment a year ago lost her long hair (she's 28) and was very devastated. Her doc never mentioned she could have used cold caps. It'll take her 3 years to get her hair back to the length it once was and my friend asked me to please not mention the cold caps to her as it would upset her. I certainly won't mention it cause I can only imagine how I'd feel. I remember how I felt when I found out I could have had my eggs frozen 25 years ago but no one mentioned it to me back then. I got cancer while we were trying to get pregnant, the chemo made me sterile. When I found out that others had harvested and frozen their eggs I was pissed to say the least that no one had suggested it to me. Of course back then I was given a poor prognosis so getting pregnant was the last thing anyone expected me to do. Just looking at the path report on me the other day and the opening sentence starts with, they suspect that my cancer 25 years ago was triple negative. Amazing that I'm still here and have had 25 years of perfect health..until this little glitch.
I'm having me 2nd taxol herceptin treatment tomorrow with the PCCs I washed my hair today so far so good. Fingers crossed. Itl;s the only thing I really hate about the chemo this time...those cold ass hats!
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Hey Myrgolds, We're here and we'll support you. I remember first asking my oncologist about cold caps and her response was "If it's important to you, then why not?" I loved her then and I still love her. If keeping your hair allows you to feel more normal while you fight this next cancer battle, then why not?
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I am new to this blog, but read through pages and pages prior to treatment and was encouraged to move forward with cold caps, so thank you! I had my first TC treatment last week. I thought my forehead was well covered, but there were small gaps between my hairline and forehead. Now I have dark marks in that area (resembles a bruise or burn but doesn't hurt). Has anyone else experienced? Thanks
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Welcome Dakjo,
That happened to me once. I believe it is frostbite. I moisturized mine, it turned more brown and became kinda dry and wrinkled as time went on - then it flaked off and I had normal skin underneath. Probably about 2 weeks or so before it all looked normal again. It's hard to get that moleskin close enough without it sticking to your hairline. Some women on here remove the sticky part of the the moleskin but only up to a 1/4 inch or so from the edge near the hairline. That lets you get the moleskin right up to the hairline without sticking to it. Wish I had known that prior to capping!
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Thanks Dancetrancer. I was beginning to wonder if it would go away at all, as I've seen no changes. I have been moisturizing the area every day. Good to know the marks will go away, but may take a few weeks. Great advice. I will definitely apply the moleskin that way next time around.
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I put folded towel paper on my forehead also the nurse told me to change my hair direction every time so you don't have burn in your scalp I have a very painful area in my scalp cause i wasn't change direction .
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hi ladies,
I have a very painful area on my scalp I looked to it now and it is light brown I think it is from the cold cap because I felt it yesterday when my husband put the cap what should I do I am afraid this affect the hair focillies any advice ??
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Dancetrancer,
I used the moleskin trick with the extra piece and no sticky stuff on the back. Worked great. I had a bright red it above it but next week I'll move it closer. Neat trick
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Hi, Mrygolds13.
I am so sorry to read of your diagnosis. Cancer truly SUCKS!!!!!!!!!!!!
I have talked to people that have been stage 4 for a while, so I say you
do what you feel is best and will make you feel better.
I wish you luck. I will say a prayer for you.
Good night.
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hi, my name is Lucy, I was dx 2 weeks ago with stage II TBN. I am 32, just got married last year, no kids, living in NYC. Beside all the fertiity worries, my #1 concern is the hair loss as being TNB, chemo is my only treatment. I think I def want to do PCC, however after meeting with my MO and found out my treatment will include 4 round of AC and 4 round of Taxol, my MO said the chance of saving my hair is 50/50. I want to see any women on this board had any success with cold cap with similar treatment plan. Thank you in advance
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hi Lucy, I'm so sorry for your Dx. It sucks. I too was given 50/50 odds for keeping my hair with AC and taxol by my female breast surgeon. My male onco said its a waste of time. I was so disheartened, I almost shaved it all in advance. But my husband said what do we have to lose, and we tried it, and i did not lose any hair. No thinning or anything through AC. Lost body hair, eyelashes thinned, but have all my head hair, and I only have four taxols to go. One caveat, I was pregnant during most of my chemo, so that may have an affect, but try it. I was sure to follow all directions, and left those caps on for the full 4.5 hours after tx. Good luck!
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I hope some of the other A/C gals can help with information. Anyone? AC is much harsher but some girls have had success keeping enough hair for coverage with the caps and this chemo.0 -
*Update on my hair loss
Mrygolds 13, Have hope...I know a stage IV friend who went through it 10 years ago, was told the worst & is a survivor...I truly wish the best for you
Lucy, I honestly feel like a rare case of AC on this thread. I too am in my 30's dealing with 4 rounds AC & 12 weekly taxol. I have 4 taxol left...My dr said I'd lose it for sure on AC, but my chemo nurses said taxol is not as bad. I started the caps in October was doing fine with the 8 weeks of A/C, slowly losing hair, yet had SO much long wavy/curly hair to start with. I really noticed in late Dec/ early Jan that my hair had REALLY thinned while starting weekly taxol....losing hair worse each week (strands, not clumps though)...I truly wish I had better news, but my hair is almost gone in length. Like 90% is gone & I just started wearing clip in extensions a few weeks ago & ordered a hair topper to make it not look so obvious...it hasn't come yet, so we'll see how it looks. STRANGELY, & luckily I guess, though I did not lose it at the scalp...therefore I'm not really bald (only in a few spots that are coverable) I lost it around two inches from the scalp...so I have short one & two inch hair everywhere else, SO I do have coverage (dark brown hair) all over my head. PLEASE KNOW THAT I FEEL I'M AN EXCEPTION, So many wonderful ladies here have had AWESOME luck on AC & PLEASE don't let this discourage you...I will still refer cold caps (& continue CC for 4 more weeks to prevent full balding) because though, it's not been too successful for me, it is an option to feel a little normal through this battle...
Ladies, I did post pictures in mid Jan & I'll keep you updated on what's to come...Looks like I'm gonna have a short haircut soon after chemo is done, but hope to avoid a full wig...Geralyn even said I could cut my sad little long strands I have left now If I want...scared to though & think it may help prevent frost bite. What I DO have left is all in the front/crown area, so I part it & tuck behind my ears along with the clip in extensions that I wear on the underside a few inches above my neckline....or a funky side braid with the extensions....the one & two inch pieces of hair luckily help keep those clip ins in place...I've also just started using Toppik. I have read that the recent stress over my hair could have made the hair loss worse & the fact that I sweat a lot at night? but other than that, at least the good news is I had NO Side effects on AC or taxol, I have felt fine this entire time...not a single "bad day/down day" & have a lot of energy...
Now if I could only get a partial refund? I don't think Penguin does that though???....been trying to research that aspect...If anyone has advice I'm all ears!
I wish all of you the best....Keep on fighting!Lori
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Curly, thanks for the update. It's helpful for those considering cold caps with AC chemo to hear your experience. Unfortunately, you are not the exception. The success rate on ACT seems to be about 50%. That's just my estimate from following this thread for two years. There are plenty of women who have done extremely well but there have been others like yourself who lost most of their hair despite doing everything right. Those women don't tend to stick around and continue posting. I don't want to discourage anyone from using cold caps, just think those receiving ACT should be aware of the odds.
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