Cold Caps Users Past and Present, to Save Hair
Comments
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Mishyp, Mamacath and Marybe: I also used the caps with Adriamycin and I kept my hair. I had A/C every 2 weeks for 8 wks and Taxotere every 3wks for 12 wks. I am now 3 wks PFC and have retained about 70% of my hair. My onc also told me the caps didn't work well with Adriamycin. I'm glad I went ahead and tried it anyway. It's worth it. My recommendation is to make sure you wear the caps 4 hours after chemo on infusion days and follow the PCC protocol as close as possible. Also, have a positive attitude and believe that it will work. I spent a lot of time praying for my hair :-)
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ckk, seems like you've had a very smooth experience with the caps. I'm glad it worked so well for you. Especially having had very little post chemo shedding.
I am 3 wks PFC and so far very little shedding. I hope it stays that way. I shed enough during chemo that I'm hoping it's smooth sailing from here.
Dancetrancer, thanks for the tip. That would not work for me. My hair was easier to comb out when it was wet. In fact, when I had any tangles or knots in my hair, combing would usually result in the hair coming out....eek!
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Victorious2012: I know exactly what you mean when it comes to praying for your hair. I have probably spent more time worrying about my hair then other things. It was a good distraction for me. I actually left my caps on for 4 1/2 hours after chemo since I felt like I was really shedding with the Adriamycin. It's working though!! I am also so happy that I decided to use the caps and stuck with it.
Mamacath, let me know if I can help you with anything else, since I think we probably live fairly close to each other. We also found a dry ice supplier in Elk Grove Village that gave us a really good price since we are coming so often. Just let me know if you'd like any more information,
Take care0 -
victorious, I did have very good success with the caps, and I think that it's due to the fact that I have very fine hair and a smallish head. I had a moderate amount of shedding after the first tx, and really none after. In the past few days, I have noticed new growth on my scalp interspersed with my other hair.I also just started using Bumble & Bumble's shampoo & conditioner for damaged hair. It seems to really help to moisturize my still very dry PFC hair.
Just want to remind all of you past cap users that there is a thread started to help new users of the caps, "Cold Cap Usage Tips" . Please chime in and help the the gals just starting out to use the caps!
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Thanks luckynjmom and essex123, the hair thing is really scary, that has me more stressed than anything else..........go figure. I guess only time will tell, it just isn't going quick enough. What vegetable hair coloring are you guys using? Thanks
Lisa0 -
THanks Lmflynn & KCD!
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Hi,
I just wanted to check in and see how everyone is doing. I am 2 months PFC and do not seem to be shedding too much. I always shed some after a hair wash but used to wash it every day or every other day so trying to compare with now waiting 3-4 days and it seems pretty normal. I actually cheated and tried a natural hair color (Palette by Nature) about 5 weeks PFC. It was awful and did not work at all. However, the instructions called for heat during the process which I did not do. If I had known I had to apply constant heat for the 30 minutes I would not have bought it. Just recently I tried Clairol Beautiful Collection, a peroxide and amonia free color, in my normal hair color-med. brown. It did not do much, even after leaving the color on an extra 15-20 minutes. I went back and got another peroxide and amonia free color from Color Brilliance. They suggested I try a darker shade. It turned the greys/whites blond but not a blond I would have chosen for highlights. It looks better than nothing though. Afer all this time I am not feeling as picky about walking around with greys and will wait a couple weeks to try something else.
Good luck to all the new cap users.
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Hi all, I colored my hair today! I am 11 weeks PFC. My hairdresser used an ammonia and PPD-free semi permament color on me (very low peroxide), no heat, and it looks great. She & I figured that, since I only wash my hair 2x/week, it would not wash out quickly.
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My hairdresser is going to get Henna from Whole Foods. She also ordered me a real gentle brush. I cannot wait to be able to brush my hair. i have been using a comb since 12/23/11. But, I am thankful I kept my hair. I had many sleepless nights worrying about it--however, I kept 80% of it. Also, the hair I loss came back right away. I am a little nervous about getting my hair dyed, but Geralyn from Hope For Hair seems to think I will be fine. I have not put direct water on my hair since 12/23/11, but the hairdresser will have to tomorrow. I will be doing a lot of praying tonight.
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Essex123, good for you. Best of luck tomorrow. Let me know how it comes out.
my mom always using henna as she is allergic to ammonia And peroxide. It covers well, I am sure my mom is much grayer than you.
Ckk, what coloring product did you use?
Thanks,
Lisa0 -
Hi
Im
on day 21 after 2 AC treatments and taught I was doing fine. The last couple of
days my hair is starting to fall out, it's not clumps but starting to patch
round ears and sides. Im so scared as still have 2 more AC and taxol x4 to go. I
can live with the roots as i have blonde hair and brown roots now. Constantly
checking my hair even during the night, my nerves are shattered. Don't know if
it will hold out till the end. Does the shedding slow down or continue right
through? My doctor told me not to do caps as he doesn't think they work, I was looking forward to going to my 3rd treatment with my hair to prove him wrong, but the way its going now I dont know if it take any more. :-(
Read more: http://penguin-cold-caps.proboards.com/index.cgi?board=prouctsupport&action=display&thread=43&page=2#ixzz1uN3vkIfq0 -
Hang in there. I lost hair above my ears and thought this is it--I am going to lose everything. However, it never happened. Also, the hair above my ears came right back after my last chemo.
It is easier said than done, but don't worry--this works.
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Lisa, my hair salon uses a line called YoColor from Kemon. It contains no ammonia or PPDs, and my hair stylist used the lowest concentration activator (aka hydrogen peroxide) to set the color, equivalent to a semi permanent strength. It did not require heat, and she washed my hair out with cold water. The greys were covered enough to make my hair look highlighted a lighter brown (I have very dark brown hair). It's actually very pretty, and I got lots of compliments on it. I plan to redo in about 6-8 weeks.
That being said, it does contain resorcinol (a suspected cancer-causing agent), which I am trying to avoid. The only other option in my area is a "green" salon that carries the Organic Color systems line. It is also ammonia and ppd free, as well as resorcinol free.However, that color line requires a heat set, and I do not feel comfortable with heat on my head until the 6 month mark. I realize that I am taking a risk with the low level of hydrogen peroxide, but I was willing to try it because I have had no shedding PFC (I am about 11 weeks). So far, so good. It's been 24 hours and no shedding.
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Thanks ckk, good luck to you. I will keep that color brand in mind when I get to that point. Keep up updated on your progress......
Lilster, as essex123 said hang in there, I have the same issue as my regiment is tc x4 but I am still loosing hair, not to mention its gray and greasy, but I only have one more treatment to go and I still have hair. It keeps me up at night to. It's very hard but one day at a time is all I can say.
Lisa0 -
Just hang on lilster, keep following the protocol and you will keep your hair.
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essex123, Laura5, Lisa
Thank you for you're comments. Its good to hear from someone who is having the same probs with the patches. Everyday I see the hair allover the place I think surely there can't be much more left. Does anyone know if the AC is harder on the hair than Taxol? I'm not getting great info from the nurse or my onc as they are dismissive about the caps. Hard to belive that my hair will stick another 6 treatments. AC x2, Tax x4. Alot of praying and fingers crossed it does.
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Hi Lilster. I am on Taxol treatment 9 of 12 and have already completed 4 AC. The AC is harder on the hair then the Taxol, for sure. I shed (strands) quite a bit on AC, but am finding much less shedding with Taxol. I have 4 more to go and still lots of hair! You'll be ok, just hang on! I remember having your same feelings.
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Lilster,
Is the hair coming out in patches all over your head or just around the ears? AC is a tougher regiment and harder on the hair. Are you wearing the caps 50 mins before, during and 4 hours after chemo? That is important. Some people may wear them a bit longer before and after the infusion for extra measure. Also, use a wide tooth comb to comb your hair. I combed once a day and that's it. You don't want to pull the hair too much. You really have to baby your hair.
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Finished chemo and no hair on top but everywhere else. Can't wait for it to grow again I hope it is soon.
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Hi
Mishyp- Thanks for you're reply Its good to hear you're doing well with the AC & Taxol, hopefuly when im done with the AC the shedding will slow down too, Its nerve wrecking but also takes mind off treatment on the day been so busy with the caps.
Victorious2012- Thanks for you're reply, yes its just patches around my ears so far, ALOT of shedding daily and after washing, Im following protocal 50mins before, 30mins each cap and 4hrs afte, 1-2 wash, big comb etc, Im in Ireland and frank has not heard of anyone using the caps here, they have some machines in hospitals but they think with most meds they dont work, also too many people, time etc. So winging it at the moment with the help of these boards and PCC boards. I really do hope it works so I can show other women at the hospital that they have a choice to try and save there hair, rather than be told to cut or shave my hair off!! fingers crossed
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Hang in there lilster! I'm on cold caps, too - 10 days after my 2nd TCH, still have hair! Shedding, but I STILL HAVE HAIR! LOL
I have faith that this is going to work for me. My fingers, toes, and cat's paws are crossed for us.
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Ali68, Congrats on your last chemo!! It's hard to be patient but the hair will grow!
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Sitting here reflecting on how I still have hair. I am so happy about it. It really is looking better every day. I'm almost 4 wks PFC and it is so easy transitioning back to day to day life because I have hair. Sometimes I feel like chemo never happenned (I know, delusional) but having hair and doing normal things again can give you that feeling. And I know if I didn't do the caps, the hair regrowth process would be long and frustrating.
That being said, why do I feel somewhat self conscience or almost guilty that I have hair when I run into people who expect me not to have any hair. People who know I've been going through BC but haven't seen me are shocked to see me with hair. They actually seem disappointed that I do have hair :-) And when I meet survivors and tell them that I just finished up chemo, I feel like they look at me like I'm an alien because I'm not bald. I know it's crazy to have these feelings. But I must admit that I do. Anyone else have the same feelings when dealing with others?
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I'm three months PFC, still shedding. I have long hair and would like to cut about 5-6 inches off. How long should I wait? Until I'm no longer shedding?
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LeesaAnn .... I personally would do it in stages.... I shed for a long time.... 5 1/2 months .... I trimmed a little at a time 1-2 inches as I went because even though I was shedding I was seeing hairs growing ....I can't completely remember but something about the weight of the hair changing could weaken hair follicle.....I don't know if it's fact but I know that was why we weren't supposed to cut our hair prior to chemo.....
Good luck....you are almost there!!!0 -
Victorious, thank you for your post. Yeah, I have the similar feelings - kinda guilty that I'm keeping my hair and others aren't...there is a financial component here, and not everyone can afford the cap rentals...so I try to be as sensitive as I can. Many times I do not bring it up for that reason.
I've not had anyone who hasn't had cancer seem disappointed that I didn't lose my hair yet, though...that is an odd reaction...I would brush it off - that is their issue - a weird one - THEIR issue, not yours. Be happy!!!! You deserve to enjoy your hair. The cold caps are tons of work and a big investment. Congrats on your success, hope to join you in a few months with the same story!
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Victorious, Thanks for your post! I have had similar experiences and I am just starting the chemo process (but this is my second time going through this maddness & I did the whole bald thing the first time). I think people are just confused because its not "the norm." It IS weird going thru chemo and still having hair but dancetrance is right...we just need to brush it off and be happy for ourselves! Celebrating any victory in this battle is important! : )
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Victorious, I think I am going through something similar. My thing is that because I don't look sick (i.e. bald, pale, sunken eyes, tripping over myself), people 'forget' that I am not 100% and expect more of me than I can deliver. Just because I'm not throwing up every 10 minutes does not mean I have the energy to clean the house from top to bottom or stay at work late. My biggest SE is fatigue but others may not always be able to tell. However, some of it is my fault as I have told very few people. It's a catch-22 for me - I don't want people to know and treat me different but then, since people don't know, they don't treat me different. Did that make sense???
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tc9876, that makes total sense to me. I have a caring bridge page that all my friends and family follow, so they hear all of my complaints and issues and are well aware that I'm far from 100%. They also see my cold cap pics and know all about trying to save my hair. Those who don't know, though, have absolutely no clue, b/c I still look like me. That's fine by me. I guess if you want people to understand and not push you like you are "normal", you'd have to tell them what is going on. The beauty is, with cold caps, it's all in your control to choose how you'd like to handle it!
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Omg, don't anyone feel guilty for having hair after all the pain and crap from chemo and cold cap. I cried with pain from both everytime and even though it didn't work very well for me I'm glad I have 40% of my hair. I had to wear a wig from 2nd chemo but I couldn't face not having any hair. My onco said at least you have some and it will be easier to grow back.
What we had to go through to keep our hair was mad, people can have the machines where I live free but don't want too.0
