Cold Caps Users Past and Present, to Save Hair
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wpmoon - you may or may not. Some of us (myself included) never had that big shed. During chemo I'd estimate I lost less than 10% of my hair. On the flip side, I shed (not super heavily, but consistently) for nearly 5 months after chemo ended. Seems like there are two paradigms, both end up in more or less the same place (I'd guess I lost more like 25% of my hair in the end in total) but different patterns.
Welcome Carol
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Okay freaking out a bit!!! After reading through the message boards searching for posts on Nioxin4, I finally decided to go ahead and use it tonight, 8 weeks post final cap. I used the shampoo and then conditioner. As I was in the shower, I was getting A LOT of strands of hair coming out....which hasn't happened before to me while using my old shampoo. I had asked my Cold Cap rep if I could use this and she said maybe wait another few weeks until my shedding stopped- but shedding wasn't terrible so I went ahead and used it anyway. Now I'm really nervous. Has anyone else had this happen????
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wpmoom--I had a big shed from day 18 through about day 25. And when it came it fell like rain! I was sure every last hair was going to fall out. I was freaking out big timer. But the wonderful women here reassured me that all was fine and that it would end soon and no, all my hair wasn't going to leave the building. And they were right! I'm up for round 3 of TC tomorrow and ever since that first big shed I've only had normal/minimal shedding. So if you do start a big shed in the next few days, don't panic ( I know, I know, easier said than done!). It will stop. You may get some thin spots, but with some creative styling and product usage, only you will notice. Good luck and keep us all posted. Everyone here will be more than willing to help. --Bethany
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Okay, so 30 min later....I combed my wet hair and it's air drying now. Now that it's more dry, I'm running my hands through it and not getting any hairs anymore. Wondering if maybe it was just some dead hair that was clogged in my scalp and came out when I washed my hair. Still would love your thoughts....0 -
morning update – my hair is definitely shedding a lot more than normal. However, my hair looks and feels amazing and clean!
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Hey Jenn - when was your last treatment? My hair is horrible and can't wait to do SOMETHING with it. I'm only a week out from final treatment . I'm starting to shed again. I guess this is expected. Always shed a bit around treatment time. Hopefully, it starts to slow down as I get further out. Like there's not enough stress in our life and then we have to worry about shedding. I guess it's better than being bald... Still stressful though
glad to hear your hair feels wonderful but not happy to hear you're still shedding. This too shall pass . ... good luck ♡Kim0 -
my last treatment was 8.5 weeks ago. The shedding was getting better, but after I used that shampoo last night, it's quite a lot today.
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HI! I was just diagnosed with a recurrence in my aux node....Surgery monday, but I a will most likely have to do chemo. : (
PET scan showed no where else. I cannot lose my hair! AGAIN! where do i even start? Is it only Penguin CC? my hair is thin, is it even worth it? Thanks ladies.
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alibeths I was in exactly your situation six months ago. I just finished my last radiation today, which had followed 4 rounds of chemo. I used the penguin cold caps, even had financial assistance so I ended up paying nothing, and I kept all of my hair!
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Hi, everyone. I am soon starting chemo and I'm not sure yet which regimen (TC or AC) I will do - we're waiting on oncotype testing. Although I had a double mastectomy with no recon, the most horrifying thought to me is hair loss. Someone posted here about how it's the lack of privacy as well as vanity, and that hits the nail on the head. Everyone keeps telling me my hair will grow back, and offers lovely ideas about scarves (not for me- it's like a flag saying cancer, and my sense of privacy can not bear that) and wigs, but as all of you know, keeping your own hair feels like getting some measure of control over this crappy situation. I don't think anyone can understand it unless they experience it. I have a head of thick long hair, and I just want to cry thinking about it all going away for months. I really want to try cold caps, though my oncologist sort of waved it off and said they don't work. It looks to me like you are examples that disprove her point. So is the consensus that you should cut your hair shorter so that the caps can get to the scalp more easily? I don't want to cut but I'm worried about how thick my hair is. I'm also confused about pricing for Penguin and Chemo Cold Caps. It seems really expensive ($1600 for 3 months of Penguin, from what I see- and does that mean for just one cap? What if your chemo is longer and you need more? It sounds like you have to rotate use), but I'm not sure we'd qualify for aid. TIA for any advice. It helps just to write it all out for people who "get it".
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4.5 years ago I had a double mastectomy and 16 rounds of chemo and lost my hair. The hair loss was wayyy worse to me than the mastectomy. It took me 2 years to look like my old self again. This fall, 4 years after my original cancer diagnosis, I had a new primary cancer occur and I was DEVESTATED to think I might lose my hair again. That's when I found out about cold caps. I'm telling you...they work! I'm proof and so is everyone else on this board. The caps are $600 to rent each month....or $300 to get the ones with the "defects". The ones that have defects are things like ink spots or small tears. Nothing that would impact the functionality of the caps. I got the defected ones and they were covered 100% by the financial aid dept. Our family does pretty well financially and we still got the caps covered, so you should at least try. Contact Patsy Graham patsy@ccaps.org. You have nothing to lose and everything to gain!!!
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Welcome Kri239.....I felt the same way upon hearing my diagnosis. I couldn't imagine how much time it would take to regrow my hair and each day would be a reminder of this ugly cancer. Ironically the first gift I got in the mail from a friend after my diagnosis was a beautiful scarf. I just cried. Then I heard about the caps and figured that I should give a shot. Initially, I wasn't too hopeful as I have the dose dense AC treatment followed by 12 weekly taxols; however, I am 4 days away from AC treatment #4 and I couldn't be happier! Yes, I know I've got another 3 months of treatment to go but having hair helps me daily with my attitude and sanity. If it ends up going away, I will still be happy that I had this extra time - I'm sure that's easier said than done ;-) but you know what I mean. My hair, too, is long & pretty thick. I was advised not to cut it very drastically prior to starting the cold caps since the weight change can stress the hair follicles, so I did a one inch trim 2 weeks before starting. You can see from my pic below that I still have a full head of hair & no one would guess I am a cancer patient. Please pm me if you have any other questions and I'd be happy to answer them. Sorry you have to join this club but glad you found this wonderful support group of ladies!
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angiel...great results so far! I'm two weeks final PFC, had four rounds of AC and 12 weekly taxols. I didn't lose any hair with either, and have not seen a lot of shedding post chemo. I'm still being really gentle, and washing only weekly w lukewarm water, but I'm hopeful that it will stick around. Good luck to you
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Gatomal, you just made my day hearing that you're done & didn't see much loss!!! I'm so happy for you! As every day arrives, I think "is this the day it's gonna start shedding heavily?" Other than the cold caps, what do you think caused you to have such great results?
Strange thing is that I still have to shave my legs. I feel like it's growing even more - even though I had laser hair removal on my legs 6 years ago - weird!! It would lead me to believe that the chemo isn't working; however, my tumor is shrinking.
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angiel...I was pregnant during most of chemo, so that may have contributed, but I delivered twins ten weeks ago, and haven't shed postpartum either. Weird.
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Kri239 and Alibeths -- Another option with the cold caps is a brand called Elasto-gel. They can bought online from Amazon and EBay (which also occassionly has used ones for sale as well). They run about $80 a cap new, $40-60 used. Most people recommend purchasing six total. They are a different design than the Penguins, but many people have had success with them and the protocol is pretty much the same. So far they have worked well for me (just finished round 3), but I'm doing TC which seems to have a good track record with cold capping in general. I bought four used and two new and spent about $350 total. And they are mine, no monthly rental fees. Of course there is also the cost of the dry ice each treatment but I would have paid that with Penguin as well since we have clinics with freezers in our area. If you have time, do some online research on elasto-gel and see what you think.
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GoldenpawsKim! Congratulations on being finished and you look fantastic!
For the new ladies, I am 4 months PFC and booking a haircolor appointment to bring back the blonde! Cold-capping was sometimes very stressful; days the caps weren't getting cold enough, moleskin stuck to my hair, being afraid to shampoo and then the months of shedding afterwards. It was SO WORTH IT!
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Kri239 & Alibeths, Welcome!... there is loads of info here on this thread, you just have to be able to have a little time to look back on these past pages, these ladies are very knowledgeable! Best of luck to you & if you can get assistance, go for it...I wish I had know about that back in the fall when I began.
Angiel, You look amazeballs!!! I can't believe how fast time has flown & you already are almost done with A/C...that's awesome, It seems like you just started....I'm really happy for you! Do you have to give yourself those damn nupagen shots? Those got old, really fast...no fun
Gatomal, It's so good to know you have no shedding 2 weeks out! I don't either, but I assume it's because there was hardly any left to shed!
JennJ, Congrats on you last radiation! I just went in today for my simulation scan & got my lil dots put on...I need 6 weeks
just as I thought....I head back to work on Monday, but at least they will start me on radiation the following Monday so I have a week to adjust....I was wondering...Does Pasty Graham work w/ PCC? or is she the lady in Texas that does/helps with assistance? 0 -
Harrysmom, are you using regular hair color or the non peroxide kind? I'm waiting until the four month mark to get my hair highlighted but my salon doesn't use the organic products so I'm wondering if I can just use what I've always used, which contains peroxide.
Ailsbeth and Krie239, I think you can tell from the photos on here that cold caps work! Don't let your oncologist talk you out of them! They do work best on TC but many ladies have had success on ACT as well. I see it as a way of managing a side effect. You take medication to prevent nausea, why not something to prevent hair loss? As one woman on here said, it's not vanity it's my sanity! When I went back to work and told one of my coworkers that I had been on chemo, she said she had thought that was the reason I was out, but when she saw I had hair, she figured it must've been something else. SO it does help if you're not the type to be the poster child for chemo!
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Hello. I am joining your group. I have been reading all this wonderful information since November. It has helped me get through a very difficult time. Without this group I never would have done the cold caps because my doctors did not mention them, and I had never heard of them. Thank God I found this site. The caps make me feel so much better about chemo. I just finished chemo #2 The doctor started me on Perjeta during #2. What do you know about Perjeta?
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Welcome to the group Sonya....sorry you have to be here. Not sure about perjeta.....hopefully someone will weigh in. Good luck!
Thanks to all of those that have recently shared photos.....I know that in order for people to believe the caps work - they want to see the results. I know I was looking for that when I was deciding on doing caps or not. Caps work! Congrats to all the additional successes!!!
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Welcome Sonya. It was my PS that will be doing my reconstruction, that mention the cold caps. When I discussed it with MO he apologized for not mentioning. He had seen them work but he feels that the cost can be prohibitive for so many, and he doesn't want to make assumptions of their financial status when talking to patients. He is very supportive and told me yesterday how good I looked and that was because at TC#2, I still have my hair, with a bit of shedding. I'm not sure how the others feel, but cold capping is worse than the infusion, in the short term. I just keep watching that clock. We do look like a bit of a circus with everyone watching. I'm sure they are curious. The nurses treat us well but clearly aren't excited to see us arrive with the coolers of ice and caps😄. So far, it is worth every minute of my frozen head. Lol I agree with Sonja, all of you ladies are an inspiration and I'm so happy I have found this site. So many questions have been answered, so it is easier to know what to expect. Thank you everyone!!!!!
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By the way, my name is Cindy. I keep forgetting to say. It sounds much better than the initials of my 5 children when posting👍
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Hello! This is my first time posting after reading through the many posts since I was diagnosed. I think it is absolutely fabulous that so many women on this site have successfully kept their hair throughout their treatments. I chose to do cold-capping despite the fact that both my oncologist as well as her nurse told me that it was their experience that post-menopausal women aren't as successful as younger women at keeping their hair. They didn't discourage me: They just told me to be prepared to lose about 50% of my hair. I have baby fine hair and, according to my hairstylist, an average amount of hair on my head. Today is day 14 after my first my chemo cocktail of TC and I am noticing that I am starting to shed quite a bit more than my normal amount of hair loss. I am using Penguin Caps and am using an experienced "capper." If there are any post-menopausal women who have been successful with cold caps I would greatly appreciate hearing about your success. From what I have read it is hard to predict what shedding actually mean as it seems shedding is as variable as how each of us experiences side effects in general. Anyway, thank you for reading!
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Katchincolor, I have finished my second round of TC yesterday, but so far just some shedding. I'm post menopausal, but maybe to early to tell. I hadn't heard that post- menopausal women have a more difficult time keeping their hair. Ugh, if that is true. Welcome to cold capping. Cindy
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I have been in menopause for over a year now, since getting my ovaries out. I'm only 37 though. But I had no problem with the cold caps. I have all of my hair!
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Hi kachincolor. I see you're from Minneapolis - I'm from Eden Prairie and had my chemo at Minnesota Oncology at Abbott. Is Susan doing your capping? She trained my helpers, and filled in a couple times when one of my helpers couldn't be there. I'm post-menopausal and had great success with cold capping, but I had the less harsh weekly taxol/Herceptin. I barely even shed more than usual during treatment, although I lost hair elsewhere. I guess I hadn't heard there was a difference in hair retention between younger women and post-menopausal women.
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welcome Sonya,
As other have said sorry you have to be on this group but it and the info everyone shares is invaluable!! I wouldn't have known about how to keep my roots covered during this cold capping without everyone here... And yes it works. 25 yrs ago the first time I did this there were no cold caps!! So glad there are now. I'm in number #8 of 12 TC and here's my hair
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Hello everyone I'm just checking in. I did use the Nioxin 4 as well and my hair feels so darn clean. I already have the really thin area on the top so I didn't notice anymore thinning. I can say, I will NOT use it until after my last treatment in 2 weeks. I read the ingredients and it does have sulfate in it. I can tell you it felt really good to get my hair clean though.
Welcome to everyone just beginning to cap! I have lost a good bit of my hair. I have a large amount of thinning right in the top center. Almost like female patterned baldness. I can tell you, that hair fibers cover it beautifully. No one even knows that I have lost any. I do have some pretty good sheds, usually day 18 or 19 after treatment. It sheds for a good week. I had fine hair to begin with and I think that is why I may have lost more than most. If you look back at the thread you will see my pictures. My hair is thin, that is hard for me to get used to. I had very thick hair, even though it was fine. So styling it has been challenging for me. Here I am today, sorry about the light. You can see though I do have enough hair to style. I have one treatment left.
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Kathincolor, I'm post menopausal and the cold caps worked great for me. I did four cycles of taxotere and cytoxan.
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