Cold Caps Users Past and Present, to Save Hair
Comments
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DebRox: you will do great! I'll bet you are out and about a lot more than you think! I know I was. It was the most active summer I've had, and it was nice to have time to spend on me and projects I'd always wanted to undertake. You'll probably have a few scattered days where you don't feel 100%, so make the most of the many, many more where you do!
Susan
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Hi everyone! I haven't posted here in a really long time. I'm almost a year PFC - my last herceptin will be on Tuesday. I'll definitely be happy to be done although I have no side effects. I would say I kept 90% - 95% of my hair with the PCCs. I had a decent amount of hair but it wasn't particularly thick. The only complete hair loss I had was my sideburns. I had tons of gray hair so I started coloring it with organic stuff 2-1/2 mo. PFC and then 2-1/2 months after that I started dying it with the old stuff. My hair does not feel dry but it's REALLY frizzy. I know the weather has been terrible here (rainy and humid) but still. Not sure what's going on. Makes me think I should have waited longer to color it or I need to go back to organic because this other stuff is too harsh.
As far as eyebrows and lashes, my brows fell out a couple of weeks PFC but came back right away. I didn't use anything to help them grow. The eyelashes fell out a few weeks PFC, came back pretty quickly but they were short so I started to use Rapid Lash. They have since fallen out 2 more times - most recently a few weeks ago. Hopefully that will be the last time. I still use Rapid Lash but want to switch to Latisse.
It's so great to see so many people have found this thread and have successfully completed chemo with caps!
Susan - I love that you posted a picture you look great.
Chey - So great to hear from you. How great that you are working for Frank now. He's a lucky guy. You will do a great job for sure. Your picture looks beautiful. I hope you are doing well.
Nancy - how are you doing?
mdg - that picture with your son is fantastic. Who would ever know you went through anything! Congrats on being all done.
....and congratulations to all who have recently finished or are about to finish.
Ditah
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I DEFINITELY don't want to be a downer, but I have a very important question to ask. Yesterday at my onc's office, I asked the chemo nurse about cold caps and she immediately got a funny look on her face. I assumed it was because of the inconvenience some of you have mentioned and the unwillingness of some staff to cooperate. But when I asked her what the problem is, she said there is info out there that suggests the caps inhibit the effectiveness of the treatment. And here I was all set to use the caps when the time comes....... Please....has anyone been told this? Or is this nurse just saying that so I decide not to use them.
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Hi Baseball fan,
There is NO evidence in the studies indicating that the caps diminish the effectiveness of the chemo. Your doctor can (and should) do a simple PubMed search and will quickly find many papers in European Oncological journals (where caps have been used for a couple of decades, and are part of the regular chemo regime, with the cap switches done by the nurses). Some of the larger studies are actually done with late-stage cancer patients (stage III, IV). If you send me your email address, I can send you some info on this. I researched this thoroughly before deciding to use the caps.
Your nurse is uninformed, that's all. That can be a red flag, though. I would absolutely press your nurse for studies -- facts -- to back up her statement, about this or any other matter. You want the most knowledgeable care team available!
Best,
Susan
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Congratulations Drim! I will be thinking about you on Tuesday, and celebrating for you here on the left coast!
xo
Susan
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BaseballFan -I'd ask her to show me the proof! And I can never figure out why icing our head is a problem but icing hands and toes, is not.
Colleen
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Drim: Congratulations on finally completing herceptin. Thanks for being such an inspiration in all of you posts...I have read this whole thread! It's nice to hear from people a year out.....best of luck to you! Like you I lost some around the sideburns. I am nervous to even think about coloring hair but am in desperate need of a color job!
Baseball Fan: Most offices are uniformed. My doc's office has a freezer and caps and they almost discouraged my use trying to tell me they don't work well....I posted my photo a few pages back and I have my hair and completed chemo 2 weeks ago. I would read the studies so you can make the decision that is right for you. Best of luck! If you have questions, you can PM any of us...we are happy to support you and share our experiences.
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Hi Drim
Congratulations on finishing your treatment! That is a huge accomplishment.
Did you experience continued shedding PFC ?
Did you ask your Dr if it was expected that you would lose your eyelashes more than once?
I look forward to hearing from you
Sashette0 -
Baseball fan- Before I decided on cold caps, I asked my oncologist if people ever got cancer in scalp/hair. She said it was very very rare, scalp mets almost non existent. She was neutral about cold caps, not sure if they worked but went along with my deisre to use them. So I have had 3 TCH infusions and 3 more to go and still have my hair. I am going to ask her about having only 4 TCH instead of 6. I am unsure how the oncologists decide on 4 TCH vs 6 but I sure would rather have 4 if that is appropriate. Good luck with your treatment
Drim- Congrats on completing the treatment. I need herceptin for a year as well. Your information was very valuable Thank you
Question on roots showing- First of all I am glad I have roots (about an inch and half of blackish grey roots after 3 treatments, means my hair is growing while I am getting chemo. . What about using hair mascara on the roots? I saw 3 different products in Beauty store that supposedly cover the roots and wash out at each shampoo. One was applied with a mascara type wand and other prouduct used a brush. Have people used Masc-A Gray mascara or Mimic Color make up on their roots.? If we don't actually touch the follicle/ area where hair comes out of the scalp, will it be ok for the hair?
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Hi Arlene glad you are out of the dark period. Fingers crossed for you and the 4 TX and Herceptin. Next Monday is my 4th TX. I am going TX by TX but the SE are getting worse each time and I am worried about the long term SE. Anxious to hear your outcome.
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Drim, congrats on thre herceptin completion!! I am still trying to hang on --day 57 PFC--lashes and brows gone--using false eyelashes--they actually look great---real worried about how much hair I lose daily--getting trim today to even out the mess---I need color so bad!!!!!
Hang in ther all! Keep Well!
Sharon
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Hey Ladies - Am I crazy? I am planning on a vegetable dye (Naturtint) next week when I am 4 weeks PFC.....
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Annie: I don't think you are nuts. I personally think you will be fine. Last washing I actually washed my hair in warm (not hot) water and rinsed with cold. I think it was better as I think it helps wash off any of the residual chemo coming out of the scalp that the cold can't contain...that is just me and my shedding less than after chemo #2...could just be what would have happened anyhow.
Let us know what happens and how it comes out. You'll be beautiful, I am sure.
Arlene
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A little article for reading this morning. We have *it will be had very soon' these bulbs in our headboard. Scary stuff.
http://www.naturalnews.com/032451_CFLs_cancer.html#ixzz1MqDbcpPk
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Good morning ladies and thanks for the kind words. You have really made this thread what it is today. I recommend it to everyone who asks me about the cold caps. The wealth of information contained here is second to none.
Sashette - I definitely experienced shedding PFC. I think it was for over 2 months. I waiting until shedding was back to normal before I colored my hair with the organic stuff. I think that's when I started using warm water too. If I remember correctly the shedding was a little worse PFC then it had been throughout. I didn't ask my doctor about the eyelashes however I did do a ton of reading on this website and others had mentioned that their eyelashes fell out 3 times so I knew it wasn't unheard of. If they fall out again - well then I won't know what to think.
SerenityWisdom - I used 3 different products on my roots but my hair at the crown is about 90% gray so by 2 months PFC it was impossible to make it look good. I was terrified of the wind blowing because I only covered the part of the style I was wearing so if the wind created another part you could see all the gray. The 3 I used were Oscar Blandi (best coverage but it never dries so it's messy), Colormark (decent coverage, faded after a day or 2, easy to apply but ran out really quickly due to the amount of gray I needed to cover), and Cover Your Gray (which looks like a lipstick and actually works great for short roots. When they got longer it was difficult plus appying that one seemed the harshest in terms of pulling the roots).
Sharon - hang in there, you are still under 2 months PFC. Hopefully it's just another couple of weeks of shedding to go.
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Serenity- I use Colormark for roots.
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Annie~ I used Clariol, no peroxide, no ammonia at 4 weeks PFC, then again at 9 weeks, and 13 weeks....no ill effects. Used the old stuff at 17 weeks PFC.... Now at 18 and no extra shedding and someone said to me Wed...my hair looked thicker!
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Drim~ forgot to say it was so great to see your post and hear you are almost done!!! You know how much you helped me when I was freaking out! Talked me off the ledge a few times!
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Lmflynn - thanks to you, as well. You have talked me off the ledge a number of times. It does take a village on this crazy journey....thank you!
Annie
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I am 5 weeks PFC. Any tips on covering dark roots?
I, too, have noticed a little more shedding post chemo than during. So thankful that you who have gone before us continue to participate in this discussion. We need and appreciate you!0 -
It sounds so nice to think that maybe in 2 weeks I could use the no peroxide/no amonia color! Sounds like Christmas to a five year old! It does take a village to keep some hair, doesn't it??? Too funny!
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Hi Everyone:
Just got back from my 2 week vacation in Florida. I didn't stay in direct sun and all seemed okay as far as that was concerned-no sun for hair and chemo. I have also noticed more shedding after chemo than during chemo. I am 4 weeks since last chemo. 2 weeks since first Herceptin alone.
I iced fingers and toes during chemo and still got neuropothy, it got worse each time, and is still bad. I also got the bad taste back. It usually lasted 2 to 21/2 weeks and then went away and came back after the next chemo. This time it stayed till 3 weeks after my very last chemo and came back after 4weeks. Nurse said it will probably continue for a few more months, until all poisons leave my body. She said nueropothy will lessen in time. Its really annoying in my feet-they tingle and feel like pins and needles all the time, sometimes stronger than others and sometimes a bit of numbness too. My eyes also tear, especially in the wind. My nose runs too--gee I sound like a mess, but really I'm not. Everyone says I look great-they are full of you know what-my hair looks like a messy, dry, frizzy, multi colored pile of crap!!! When I wash it I try to style it with a soft brush, loosly holding it under a COOL hair dryer. It looks okay for about a day. Sometimes in the middle of the week I put spay-on, leave-in organic conditioner on and COOL blow dry it again. It is very dry and that makes it more fly away and I think adds to the shedding, because dry hair is more brittle.
I had lost 35 pounds before stating chemo--on purpose, not due to illness, but gained 20 pounds back since chemo--I thought it was because I ate anything I could stand because of the horrible taste and that was mostly candy and mints/chocolate/ice cream/ices and anything sweet. Well, I'm back to watching what I eat, bad taste and all, because I don't want this extra weight and I want to eat right for my overall health and well being. I actually enjoyed eating right, I don't really like too much sugar, except for chocolate-in any form(ice cream/candy/cake/ cookies,etc.).
My hair is actually much longer than normal, which proves that I not only didn't go bald, but that my hair grew DURING Chemo. I try to tell everyone I can about cold caps, because eveyone can tell someone else and so on and so on.
We really are on a journey and this is our village. You who have completed this journey before us have helped us on ours and we in turn will help the others who follow us. As they say, "Pay It Forward!"
Two of my friends called me to get info about the caps for friends of theirs who were recently diagnosed with BC and one with Ovarian Cancer. So glad to be able to pass the info on.
By the way the 4 versus 6 TX is NOT for TCH, but for TC, a different treatment. I asked my ONC. about it and she said it is true, but it is not TCH.
To Drim: So glad to hear you are thru with Herceptin, congratulations and stay well!! Thanks for asking about me.
To all of you who are finished with chemo or close to it---HOORAY for you!!
To all of you starting out, keep a positive attitude and you will do well, if you are doing the cold caps, fear not--Thy Work!! You will keep your Hair!!! I have found it a very empowering experience. We have no real control over what we are going thru and doing the caps let's us control something. I also feel that when I look in the mirror and see myself with my hair on my head, instead of a bald head, I feel like a conquerer, not a victim!! I also think others see us differently as well!
Keep Laughing/Keep Positive!!!
Nancy
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Hi Everyone:
Just got back from my 2 week vacation in Florida. I didn't stay in direct sun and all seemed okay as far as that was concerned-no sun for hair and chemo. I have also noticed more shedding after chemo than during chemo. I am 4 weeks since last chemo. 2 weeks since first Herceptin alone.
I iced fingers and toes during chemo and still got neuropothy, it got worse each time, and is still bad. I also got the bad taste back. It usually lasted 2 to 21/2 weeks and then went away and came back after the next chemo. This time it stayed till 3 weeks after my very last chemo and came back after 4weeks. Nurse said it will probably continue for a few more months, until all poisons leave my body. She said nueropothy will lessen in time. Its really annoying in my feet-they tingle and feel like pins and needles all the time, sometimes stronger than others and sometimes a bit of numbness too. My eyes also tear, especially in the wind. My nose runs too--gee I sound like a mess, but really I'm not. Everyone says I look great-they are full of you know what-my hair looks like a messy, dry, frizzy, multi colored pile of crap!!! When I wash it I try to style it with a soft brush, loosly holding it under a COOL hair dryer. It looks okay for about a day. Sometimes in the middle of the week I put spay-on, leave-in organic conditioner on and COOL blow dry it again. It is very dry and that makes it more fly away and I think adds to the shedding, because dry hair is more brittle.
I had lost 35 pounds before stating chemo--on purpose, not due to illness, but gained 20 pounds back since chemo--I thought it was because I ate anything I could stand because of the horrible taste and that was mostly candy and mints/chocolate/ice cream/ices and anything sweet. Well, I'm back to watching what I eat, bad taste and all, because I don't want this extra weight and I want to eat right for my overall health and well being. I actually enjoyed eating right, I don't really like too much sugar, except for chocolate-in any form(ice cream/candy/cake/ cookies,etc.).
My hair is actually much longer than normal, which proves that I not only didn't go bald, but that my hair grew DURING Chemo. I try to tell everyone I can about cold caps, because eveyone can tell someone else and so on and so on.
We really are on a journey and this is our village. You who have completed this journey before us have helped us on ours and we in turn will help the others who follow us. As they say, "Pay It Forward!"
Two of my friends called me to get info about the caps for friends of theirs who were recently diagnosed with BC and one with Ovarian Cancer. So glad to be able to pass the info on.
By the way the 4 versus 6 TX is NOT for TCH, but for TC, a different treatment. I asked my ONC. about it and she said it is true, but it is not TCH.
To Drim: So glad to hear you are thru with Herceptin, congratulations and stay well!! Thanks for asking about me.
To all of you who are finished with chemo or close to it---HOORAY for you!!
To all of you starting out, keep a positive attitude and you will do well, if you are doing the cold caps, fear not--Thy Work!! You will keep your Hair!!! I have found it a very empowering experience. We have no real control over what we are going thru and doing the caps let's us control something. I also feel that when I look in the mirror and see myself with my hair on my head, instead of a bald head, I feel like a conquerer, not a victim!! I also think others see us differently as well!
Keep Laughing/Keep Positive!!!
Nancy
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Hi again:
I just wanted to ask what is the name of the mascara from Physians Formula? I went to CVS and looked for it, but only found eyeliner and lash Booster and something else, but no mascara. Also what are some of the hair colorings I can start to use in about a month more. I want to be sure to find them for when the time comes. (I really need a color and a cut.) I would like to get a cut on Sunday--it is 4 weeks post chemo, I think Frank said a trim would be alright, just not to do a drastic cut, because the follicles don't like it.
BTW I will start Rads on the Tues after Memorial Day. Probably for 6 weeks, 5X a week. A new journey!!
Again, Keep Positive!
Nancy
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Nancy nicely put--so many transitions!--I'll finish my 34 radiation appts this thursday---pieace ofcake--just show up! (use your creams) You will be done before you know it! I had my hair trimmed yesterday--at lest now it is even---can't wait for the big color day! Wish it would settle down and stop doing the extra post chemo shed---
Have a Great Weekend!
Sharon
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Keep positive. Congratulations it sounds like you have have achieved keeping your experience positive despite the challenges. Yay You!
1 am 12 weeks PFC. The only hair color I could find no ammonia no peroxide is Clairol 'beautiful collection'. The only place I found it was beauty supply stores. I called around and found a store where no beauticians-license was required to purchase. On the advice of the owner I purchased two different colors and mixed them, the darker colors tend to cover the grey better and the red added highlights. I am pleased with the result. The color seems to be staying. My sideburns seems to be growing faster than my other hair and it could use a touch up there.... Seriously I don't think it is possible some hair on head grows faster than other but, ...seeing is believing.
I too seem to be experience more shedding PFC. I am not sure it has stopped yet.0 -
Congratulations for finishing Sashesz3! That is huge!!
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KeepPositive: The mascara is Organic Wear and it has a green lid - kind of an odd shaped lid with a point on the end. I have seen it at CVS, Walmart, Rite Aid, and a few other places. They have a lot of other Physician's Formula stuff that is not organic and very few organic wear items. Some stores carry more than others. I had to go to a few stores to get a different variety of things to buy because they all did not carry the same stuff. In each store I notice that the mascara is not located down by the other organic wear stuff (bronzer, tinded moisterizier, powder, blush)....it is located up at the top on the left side among the other non-organic items. They must all display their stuff the same way as it is like this in every store I go to. I did just find it at my local CVS as I just bought one the other day to replace the old one.
I am sad to hear that everone has had more shedding PFC. I am 2 1/2 weeks PFC and am freaking that the shedding could increase. I want to color my hair soon...my roots are out of control! Did you all test and area first or just go for it with the non-amonia/non-peroxide color? I already have a color kit - got it at Walmart....just waiting to do it.
I have to wash my hair today...trying to mentally prepare for that. Do you find you have to psych yourself up to wash your hair due to the cold water and shedding???? I do......."OK, it won't shed that bad....it will be OK"...etc....etc..... I will let you know how it goes.
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OK ladies - i need feedback. I remember reading Arlene's early posts when she first started shedding. So i'm trying not to worry. I made it to Frank's 21 day mark, then it started! wow. I had my first hair wash since the shedding started this morning. The shedding is unbelievable. i nearly filled the sink. it'll keep shedding if i keep combing, so i stopped. Does it really keep falling out like this??? oh man ...
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The shedding slows down--I think the biggest key factor is --try not to over groom! Easy on the combing and handling of the hair--don't tug on it to see how much comes out---I was guilty of all the formentioned issues--and quickly quit---after washing seems the worst --hold your hair whenever you comb--I am 58 days out and still hold my hair---hope this helps---just be as gentle as possible--you can't be too gentle here--your little folicles are holding on for dear life---help them!!
Sharon
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