Cold Caps Users Past and Present, to Save Hair
Comments
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PatinMN,
Thanks for the info!!! If I was staying home I wouldn't care and I'd wait it out. But I'm getting ready to travel home to Boston for 6 weeks and I don't want to go with the grey. Yes, I'm grateful for having hair and for being a survivor (again) but I don't want to go home and have to repeat the cancer story to everyone I see. I'd like to be able to have other conversations then about chemo and how I'm feeling. LOL! Thus my need to cover it up to the best of my ability in about 2 weeks. I will do what you did, but I wonder if there is any other stuff that won't run if I sweat. The chemo, TC, caused horrible night sweats. They are getting better with the help of my lymphatic drainage massage therapist.... but I still get them. Argh.
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Has anyone ever tried or heard of this product for hair color?
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Alibeths, ships girl is using cold caps right now with ACT chemo. Hopefully she will check in and respond to you soon, or you could try sending her a PM. Ships girl is supposed to be all one word, but my dang iPad puts in a space and won't let me fix it. Grrr!
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Amrdbit, I think mdg has mentioned a product that she likes, you might PM her.
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ugh - this Taxotere is kicking my butt. I did amazingly well on the FEC portion. Started Taxotere on Thurs. Spent yesterday morning at emerg with a fever. Thankfully they sent me home; white cells are fine. Excruciating bone pain for 3 days now. My tongue is like fur and i won't explain what it tastes like! I have a nasty rash under my arms and feel overall extremely crappy. Phew....never felt this bad on FEC. If i could just have some pain relief. Even the codeine doesn't help.
I guess the one very bright side - my mother went with me to emerg (i am separated) and kept saying how my ponytail looks so normal. the er doctor asked me if i shaved my armpits (talking about the rash i have) - i say "no, no need to"...he says "why? because of the chemo?" Silly question, but I'm guessing he got thrown off by the hair on my head.
When do the taxotere side effects ease up? i couldn't even do my daily comb yesterday, let alone the wash i was supposed to do post chemo.
ugh
curly0 -
Curly - sorry you are feeling crappy. My worst days after taxotere were days 3-5 after chemo. After that I felt a lot better. I did get a rash after my 3rd chemo and it was miserable! I hope you can get some relief.
The color I now use on my hair is Naturtint. YOu can get it from the health food store. It has hardly any chemicals in it like regular color does. Once you decide on a color you like, then order it from Amazon. I order about 6 boxes at a time and wait until I see a good price. It is less expensive this way than buying it from the health food stores. I usually pay about $11 per kit through Amazon.
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I did not want to be premature, but I am day 14 and still have my hair!!
I am cautiously optimistic that cold caps worked for me- at least the first treatment. I have had some shedding, but that is normal for me. I am the type that always has hair in her comb. Just wanted to share the news. Will keep everyone posted.
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SusieQ,
Thank you so much! I was wondering on the size. We have two friends who are lending us their coolers but I wanted to double check that the size would work. I spoke with a cold cap rep and she said 75 gallon. I thought she might be mistaken because that's just absolutely HUGE!
What did you use to prevent frost-bite? I've heard others say they used moleskin, also gauze. I want whatever seems to be the most effective with saving her hair, but also keeping her scalp healthy.
Thank you!
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ChelseaAshley,
I used moleskin on my forehead and the tips of my ears. May bring some gauze too next time.
I also want to report that I do think I am loosing my eyelashes
. I can live with that.0 -
Chelsea, don't put anything between the cold cap and the hair, unless and until there is a bald spot. Be sure to change the part with every cap change, or pull the hair on top of the head straight back - the part is an area that could develop frostbite if it is exposed to the cold all day long. I used moleskin on my forehead - get it as close as you can to the hairline without covering any hair. Then I stuck pieces of cut-up pantiliner onto the moleskin to extend up to insulate the "baby hairs". I never had to use anything to cover my ears - the hair itself covered my ears and I never had a problem (and I have fairly short hair).
Tmb - I'm glad you are having success so far. A cautionary note, though - my Penguin rep said I could feel safe if I hadn't lost my hair by day 24. What chemo are you getting?
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I am only cautiosly optimistic- I know I am not out of the danger zone yet- but I am encouraged.
I am 1 round into 4 rounds of TC.
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Hi girls
I am due to start chemo in mud June, my docotor will confirm date tomorrow and the drug regime I will be on ( s##ting myself but I have to be as brave as you girls).
I hope to be using the cold cap. My question is I have curly hair which I straighten its past my sholders. With the cap have you girls cut your hair? Or is it ok to keep my hair as it is? I want to give myself the best chance and if you girls recommend cutting it how short should I go?
Good luck girls with the remainder of your treatment , I pray for each of you that god continues to give you strength to get through this journey. Xx
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Yay tmb!
When I hit day 14 I was happy as I knew others started losing their hair at that time. When I hit day 21 I really breathed a sigh of relief. Now I am 2 days away from my final treatment and my worst complaint is the gray roots from my hair that keeps growing!!
Keep the faith and best of luck to you and everyone else. At the beginning I thought the end date seemed sooooo far away but it went by much faster than I ever imagined.
Fab1 I was completely terrified of chemo but it really is doable! Maybe I am fortunate but it hasn't been nearly as awful as I thought it would be.0 -
Well I'm back after recovering from my third TC treatment. I agree, days 3-5 are my worst (and thankfully today's day 5!). Curly, I've never ended up in the hospital, hope you're feeling ok now. Just did my post chemo hair wash, and not too much shedding.
tmb- It's good to see new people starting caps, it makes me feel like an old timer. Congrats on day 14. I found the time between day 14 and 21 to be the most nerve wracking, waiting to see if the caps will work. Keep the faith. The caps have worked extremely well for me so far and there's no reason to think you won't have similar results.
Chesea- definitely use moleskin on your forehead. Use wax paper to trace the outline of your hairline and then trace that outline onto the moleskin and cut it out. Only cut a thin amount off the backing of the moleskin before putting it on your forehead or it will hurt when you pull it off. Cut just enough of the backing so it will stick. I did not need anything on my ears- just pulled my hair down straight over them. We mess up my hair each time so there is no defined part and it seems to work. No frostbite so far.
fab- PCC's recommends that you do not cut your hair prior to starting the caps. You will definitely have to stop straightening your hair since you want to treat it as gently as possible.
SusieQ- so happy you're that close to finishing!
Best of luck to all the new ladies starting. Use this board for tips and encouragement, it's been invaluable to me. You will get through this rotten chemo and keep your hair.
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Yay jc! Congrats on emerging from the day 3-5 fog AND "not too much shedding". Love it! Looks like you're not too far behind me so hopefully you're nearing the end of this chemo stuff soon as well.
I agree that this board has been my lifeline through chemo and caps. Thanks to all for your encouragement and support!0 -
Hello all,
Just wanted to check in. Had my first infusion/cold caps this week and hoping that everything went well. A little bit of a bumpy start but I think we had the routine down by the third cap.
Fab 1 -
I have relatively thick curly hair too so was really worried about it insulating my head and making the caps less effective. I am African-American and was advised to NOT color, relax, cut, or apply heat to it. I followed the first two suggestions and stayed away from the chemicals - but I did cut several inches and thinned it out about four weeks before treatment #1. So I guess I'm doing my own little experiment. And I also got it blow-dried straight a couple of days before treatment #1. I don't plan to cut or use heat from here on out.
tmb - YAY! so far so good. Sending many good vibes your way. You and your mom are rock stars!
curly- i'm bracing myself for the taxotere slump. i'm so sorry you had a rough time but glad your white cell check was ok. hang in there.
jc - how long after chemo do you wash your hair? are you a 3-day post treatment person or a 1-weeker?
Best of luck to everyone here and thank you so much for sharing.
Kay
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Way to go Kay! Congratulations on making it through the first round!
My start was a little bumpy too as we figured everything out- it was much different then our practice day because the caps were cold, but we felt like we had it down by about the 3rd cap. I waited about 5 days post treatment before washing my hair, and have stayed on that schedule. Will stretch it a day to get the "3 days before chemo" wash. Am using a very mild clear shampoo and leave on, detangling, spray conditioner both of which I got at Whole Foods. I have always used a wide tooth comb, but managed to find an "extra wide tooth" comb on Amazon. No heat- using the cold setting on my blowdryer, and wearing simple headbands during the day- I got them at CVS. My plan is, if I keep most of my hair, I may buy a few nicer ones for going out.
Sending good vibes
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jc - glad you've recovered! thanks for the kind words. So glad to hear your shedding is controlled - that's wonderful news! And does this mean you only have 1 to go? Sooo awesome! You are in the home stretch!!!
kaydee - how are you feeling? Glad you got #1 under your belt. How many left?
mdg - thanks. when did the rash go away for you? they gave me a cortisone cream. i seemed to feel better the day i started it, but got worse again last night.
as for me - well - stillll leg pain and the rash under the arms is horrendous. Now developing cold sores outside my mouth and the tongue is still gross but getting a bit better, as i got prescrip for mouthwash to help it, but really gross. I am stunned at the difference between the drugs from rounds 1 through 3 vs. Taxotere. I honestly felt like death the last few days, but at least today I don't feel that awful, despite the pain. I will talk to my oncologist to see if there are options. She did say at the beginning that some people just can't tolerate Tax and end up switching to another drug. Brutal. My whole family is so sad for me. I'm sad for myself, but i hate putting them through all this upset also. Parents are older and having a tough time coping with my situation. Nice thing is on my really bad days, I call my Mom to come over. She has a knack for cheering me up even at age 38!
To the curlies - please be careful with your hair instructions. I hear that some ladies were told to comb through their thick curly hair before washing. I'm here to tell you - DON'T do that!!!! I have (had) thick curly hair. Still have decent coverage but is much thinner. I never comb through prior to washing because you have to comb through after washing anyway and it seems to me that you will lose even more hair if you comb through twice. For me, combing after a wash is when i lose the most hair usually.
I am not sure how the shedding will be now that i am on taxotere. Hoping it won't get worse as it did calm down after a few big sheds. I find sometimes there are knots at the bottom; i just cut them off, as it's not worth my while to comb through the ones near the bottom because i will end up pulling out more hair than what's in the knot. Be gentle on your curly hair, but follow your gut on how to deal with it. Curly hair has it's own mind and you kind of have to go with it.
thanks for the support ladies. Hoping i am coming out of the fog and this pain dissipates soon. 2 more to go.
shipsgirl - how are you?
xo
curly0 -
curly -
So sorry you're having such a tough time on the tax but glad you're feeling a little bit better. I have 3 more rounds to go and hoping I can't get through them ok. Feeling sluggish and a little queasy today - went for acupuncture and hoping it can work with the anti-nausea meds to keep some of the se's in check.
Hold tight - I'm with you and everyone here in spirit.
Kay
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I'll have my 4th round of TC next Tuesday and during my blood draw yesterday asked one of my favorite nurses to make sure all the cold caps are in the freezer at least 24 hours before my visit. Last time only 4 were frozen to the proper temp and I had to make due with the remaining 11 at -20 degrees. Fortunately my hair does not seem to have suffered from the mistake. But I don't want to take any more chances.
Just a funny observation being on TC - the hair on my chin and both legs are gone but I have my eyebrows, eyelashes and elsewhere. Just missing it in these two locations...well NOT really 'missing' it, but it's not there!
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Curly - I had some issues with the rash for a few months. I think what happened is I became allergic to the laundry soap I was using before chemo. A few months later when I cut it out the rash went away. I visited my sister and slept in sheets washed in that same laundry soap and the rash came back. When I went to the dermatologist they said that it is not uncommon to get allergies to things after chemo or as you get older. I have always had skin allergies. I was on several rounds of steroids - oral and topical to try to make it go away. I hope your rash is nothing like what I had to deal with!!!
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Well, every day is an adventure. Still have the hair on my head- some more shedding today but definately holding steady- but I did get a major loss of other hair. Let's just say I won't need a bikini wax. I have to feel encouraged though that I am getting major hair loss, but not on my head. It was a very weird to see though. Just another reminder- like you really need one- that loosing your hair must be beyond traumatic. Definately keeping fingers crossed after seeing that. Today is day 16 for me, so I think I am almost out of the woods. It was my understanding that by day 21 you could be confident that the caps had worked for you.
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Hi. I took a "break" from cancer for a few days. I apologize to those that might be waiting for ACT information/experiences.
I am now halfway through. woohoo! Infusion 4 (the last of AC) was last Thursday and I feel I've gotten to the "other side" of it. Interestingly, round 4 has been the easiest on me. The hit-by-a-truck phase hasn't been as exhausting. I have actually been able to go out for a couple of hours each day, which I wasn't able to do during the first 3 rounds.
My WB counts were up last infusion so I only needed to do 6 days of neupogen injections instead of 8. I hate injecting myself, even though it doesn't hurt.
And my hair? Well it's still there. Round 3 was tough for shedding. My scalp tingled and even "hurt" all the time. This round, it hasn't happened and the shedding has eased up quite a bit. It is noticeably thinner to me, but even my mother says it doesn't look thinner. Most of my shedding is in the back. I don't have any bald spots that I've noticed.
I don't know if it made any difference, but I did end up wearing the caps a bit longer pre-infusion (about 15 minutes extra) and after (about 30 minutes extra). I fell asleep after changing the last cap. lol
Sorry for the long message. Just wanted to share the latest in case it's useful to anyone.
Have a fabulous day...WITH hair!!
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tmb - I'm trying to brace myself for the "chemo Brazilian". So much of this BC ordeal has been traumatic and losing hair can be another big shock to the system. Congrats on your day 16 hair. Fingers crossed that it holds tight!
shipsgirl - yay for making it through the last of the AC! I know
that must be such a relief. I've been feeling crappy for the last couple of days and can't wait to feel semi normal again. Glad you are getting the full time with your caps and seeing good results. I'm a little worried that I didn't get my last cap in because of a scheduling snafu. But from reading other posts I'm hoping that the ones I had we're enough.0 -
I am done!! Had my 4th and final TC today. I cried tears of joy walking out of the clinic. More tears of joy when that final cap came off.
For those of you still on the chemo journey, it goes faster than you think. I'll be sending you all my good vibes for a smooth treatment with all your hair! Speaking of which I think I still have 95-98% of my hair - amazing! Never even lost it all down south but more of a Brazilian. Still have lashes and brows but know I'm not out of the woods yet.
This board has been so encouraging and positive. Thank you all! Here's to our health!0 -
SusieQ, those words, "I am done" are magic!!! I know we call look forward to the day we can say the same. Good on you, girl. You made it! My heart rejoices for you.
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You will get there shipsgirl, and we will be with you every step of the way!!!
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SusieQ, congratulations on your final treatment. You made it through- with hair! I'm two weeks behind you and can imagine I will shed those same tears of relief and joy. Speaking of other hair loss, I had to shave my legs yesterday!
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I had my treatments from Nov to Jan and never shaved my legs as the hair was gone. I shaved again I think in April! It is strange with the hair regrowth. My shedding stopped about 8 weeks after final chemo. I have some sections where the regrowth is about 3 inches and others where it is about an inch. I guess it depends when it fell out in the process. The most annoying is the frizz. Houston humidity does not help!
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Kay
I'm on weekly taxol and every three weeks carboplatin. The taxol is about an hour and the carbo is about 35 minutes.
Deb0
