Cold Caps Users Past and Present, to Save Hair
Comments
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Hey Golfergirl, Great to hear how well you are doing! My hair has also come in even better than before (and I liked it before chemo!) and I'm looking forward to how it might look in another couple of months.
I'm glad my "penguista" has caught on! :-) It sounds a little bit revolutionary, which we are!
Cheers to everyone,
Susan
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Hi All - new to chemo - starting on Monday, January 10. Need some help! I did a trial run with my new hair products on my thick hair. I washed with my organic and super gentle shampoo. Then I used the Kenra spray on conditioner. My hair was a disaster. I could not get my fingers through the hair, much less a thick tooth comb. I am sure I pulled hair out. Does this hair wash and spray on conditioner really work???? Or does it cause more damage? I am clueless.
Also, ordered the SeaChi shampoo...does that work better?
Also, I am planning on getting a few inches cut off on Wednesday...thinking about a hair color/foil. My stylist had colored my normally blond hair a "darker, richer color for fall" and now I have a definite gray zebra stripe that will only get worse over the next few months. Help! What are my options? i am not normally vain about my hari. In fact, my DH said that he has never heard me talk so much about this mop that sits on my head! I am 43 with three kids and am not ready for this ordeal...
Help, sisters!!!!
Annie (6 days and counting)
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Hi Ladies~ So much to catch-up -- thanks to all the brave Penguinistas that went before us and continue to share their experiences.... it really helps!! And how wonderful to hear the PFC successes!!
Day 53 for me... going to post a picture .. please know I only do this b/c I know how much I wanted to see and take inspiration from others pictures... I have lost a lot of hair -- shedding FINALLY slowed today... I asked my good friend today if she could tell .. and she said no -- your hair actually looks better.... GO FIGURE... I keep hoping it will hang on through one more treatment. I seem to shed the most Day 5-12 after infusion...I really did not shed anything between #1 and #2.
anniemom of three~ I have really thin hair as you can see... so I don't have the issues with combing... I did use Kenra LeaveIn Conditioner this time and it did help me... I think others will respond to you re: thick hair. I would not color my hair this close to chemo... you could probably "tint" it with and organic color -- no ammonium or peroxide... welcome to our little club... that seems to grow every single day!!
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Dear Friends,
I was going to post some photos, but can't seem to manage. I took lots of photos on my journey, so I was going to share. Help Me!
One of those life events arrived yesterday in the mail. In California you can renew your driver's license by mail a few times and then have to go in maybe every eight to ten years. Guess what- I got a renewal notice that I have to go in and have a new photo. Could have been worse with a bald photo instead of a thin hair photo. California won't let you wear a cap in photos. Not sure about wigs. Praise again for the caps.
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Is there anyone on here that has used Cold Cap Therapy in San Antonio, TX?
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Has anyone tried using a curling iron on just the ends. I have a formal work event about 3 treatments in and I'm wondering how I'm going to style my hair. I see some have had success with the cool setting on the blow dryer - did you do any styling while drying?
I'm suppose to start chemo tomorrow so I'm going to try to post before and after pictures of all my treatments, as soon as I figure out how.
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Wow, this trying to post a photo thing is really complicated and I work on websites for a living. This is my attempt let me know if you can see it.
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Hello everyone,
To Anniemomofthree: I was told not to cut my hair 2 weeks before chemo and no color either. You can use Colormark touch up. I'm starting on Jan. 7th and my hair needed a cut and especially a color job 2 ago. My roots are all grey (my color is very dark brown, so you really see the roots! At least we'll have hair, even if it looks lousy for a while.
To Steph 42: Couldn't see your picture.
I'm going to try the cold caps at home tonight and thru Thursday to see if we get the hang of it and if I can stand it, It won't be as cold from my regular freezer, but it will give me an idea of what it will be like,
Good luck to you all. Keep positive.
Nancy
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- Any body lose some little spots due to freezer burn? How long did it take for the bare spot to grow back. I have two spots one about 1/2 inch square and one z shaped like an extra wide part.
Thanks for your ideas for next treatment. I do my next chemo on monday0 -
Hi - the pictures of the hair are so lovely. Thank you! Someone referred to other pictures....is there a place to see more pics for motivational purposes?
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Steph42- I blow dryed on cool, using my usual round brush. I did not use any product besides the leave in conditioner, though. I have thin, straight hair, so using the round brush didn't pull much on my hair, I used it more to lift. I didn't use a curling iron, my hair won't hold a curl without product, so there was no point in curling it! I got bolder with the round brush as the treatments went by and my hair seemed to tolerate it well. Based on how my hair did, I would think some curls at the ends for a big night out would be ok. Like Ang7 said, there is some tolerance, I don't think you have to do everything perfect for the caps to still work. I know Frank would prefer we just baby our hair during treatment, but I just couldn't quit all my bad habits! Thankfully, it worked for me, but you have to go with what makes you comfortable.
Susan, so glad you are having good hair results, too! And, yes, we Penguistas are revolutionary!
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Anniemomofthree~
If you look on page 35 of this thread there are some before & after photos...
Hugs to you!
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Well, I have finally admitted that the Kenra shampoo and leave in conditioner does NOT work on my hair. I had a massive matted knot that took 3 hours to comb out today and yes I lost a LOT of hair in the process. I'm in the process of re-evaluating my commitment to the entire process but I don't want to discourage anyone else. I think we just have to do what is right for each one of us. Wishing everyone success and good health in 2011!!!
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Steph42 - Between my 2nd and 3rd TC treatments I had an event to attend that required I do something with my hair (other than wear it in a ponytail with a scruggee). At that time my hair was trimmed to collar-length and I used the blow dryer and curling iron on the cool settings to do a a basic page boy style.
Colleen
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Littlepenguin - so sorry about the conditioner problem. I begin chemo on January 10. Not sure if you read my post, i did a trial run with Kenra spray on BEFORE chemo last week. I had a nightmare of tangles - in my normal, non-chemo hair. I could not believe how bad it was and how much hair I lost (WITH NO CHEMO) so I can relate! I start on Monday and am getting ready to go get a haircut and color today. Not sure what I will do for product....
Any ideas????? I have shoulder length thick hair that tangles....
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Morning Ladies....
JanetMoy~ I am in Houston -- you are welcome to call me -- just PM me and I'll give you my cell phone. If you are in need of caps I'm done with chemo 1/14. If you want to know other info hopefully I'd be able to help.
littlepenguin60~ Please don't give up! This journery can get so hard. I find it really hard to not just get so angry I want to scream or cry at moments...you could try a non-sulfate, non-paraben heavier conditioner that you could use on your hair. SeaChi has one, Aveda has one, Loreal makes one you can buy at a CVS or Walgreens ...you could take this risk rather than using Kenra and getting the tangles .. but maybe try to continue to use the caps... if you can... only you can decide what is best for you... I wish you the very best and peace in any decision you make.
To those of you trying to post pictures ~ it took me forever to figure it out... I used Flickr.com to upload photos and then when you pick "share" it has choices -- you pick the HTML and then copy and paste the "link" into BC.org. in your reply message box. Also, choose size "small" in Flickr when sharing. It posts two pictures when you do this (when you paste this HTML into your reply by using the icon next to the smiley face in the tool bar) -- it will put in two pictures for some reason and you can just delete one) I hope that helps -- it should be easier!
To all ~ I do, when I want to feel like my old self -- on hairwash day -- curl the ends of my hair with a large barrel curling iron being very very careful not to pull and not to get too close to my scalp -- I also use Velcro rollers on my bangs and they work really well and you are able to be very gentle.
Day 55!
- shedding finally back to "normal" and hoping it stays at least unitl next and final treatment!!!!0 -
Re Hair products: use conditioner after you shampoo, just a dab to make rinse -out easy. Pure Results shampoo AND conditioner are both very good products for this.
Then use spray in stuff after towel drying:the spray in conditioner (leave-in type) that i liked was Alterna. Available at salons,is also sulfate-free, good stuff. This should make comb-outs less stressful.
I also used hairdryer (albeit at cooler temp) AND flatiron (yes.. on lowest heat, and NOT on the roots, obviously!) to style hair all during treatments.
The hair color products that are designed as temporary "Level 1" such as Loving Care, are options for roots regrowth. It can be painted only on at the roots regrowth zone with an applicator brush. Since hairwashing is less frequent during our "process", this stuff actually hangs on and does a good job when the coverage needed is beyond what Colormark can provide.
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Hi everyone,
Just want to encourage those of you having PCC-induced hair issues. Do not despair.
Anniemomofthree, yes, you will have to adjust some new hair habits during chemo, but keep in mind you hair texture will change; it will adjust to the lack of shampooing and will get easier to manage.
I had massive of amounts of hair to start with (my hairdresser would joke - before chemo - that I had enough hair to make 3 wigs) and as a result I lost a lot more than those with thin hair, but no one can really tell except me.
Littlepenguin, I too had massive knots in my hair. I experienced the most knots during my first 2 chemo sessions, then it pretty much dyed down. I now attribute these knots to the shedding hair that tangled itself up with the hair that was still attached to my head. Are you knots situated on the side of your hair? What I did was use massive amounts of leave-in conditionner to "soak" my hair and then a wide tooth comb to separate. I used Aveda's leave-in conditionner
that the girl at the salon said worked wonders on knots. She told me their line is 99% organic. I took a chance and my hair is still there.Steph42, I used both a curling iron on the ends and velcro rollers, but felt that velcro rollers pulled a bit more on the hair.
I know this process is a lot of work, but when you think about the alternative, there is no comparison. In 6 months time, you will be SO glad you did this.
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Oh shoot, lost my post. Ok, so we can use natural haircoloring during the chemo process if we have to? What I have left of hair is thin, dry, gray, fuzzy, and scary. I'm heading out to see if I can get some other products to turn it back in to hair. I'm the one that thinks Kenra products are a scam -- sorry! My chemo was postponed this week due to a nasty cold that I have so I have some time to decide if I want to continue. I do thank all of you so much for your encouraging words and I can appreciate having some 'cover' even though I have to wear a wig out. This all can kind of stink, right? But we are lucky to have choices and to live in a country where we can be treated and beat this disease! So I'm keeping my priorities straight! Ok, so I'll say it -- I had the greatest hair -- everybody always talked about my hair. But you know what, it's just hair and someday hopefully it will return and still be pretty. (Tears here.) Don't worry, I'll get my chin up again. 0
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Thanks for the advice MRTI and Bridetobe. It is really, really helpful! I ended up getting my hair cut, colored and foiled back to my normal shade instead of the brown...to help with the major gray and grow out problem. My hair stylist could not believe that I was so worried about this, since i have not been a hair person in the past. Ughh! So, now I wait until Monday to begin!
It makes sense to me to bath my thick hair in a gentle/organic/non-toxic conditioner instead of the spray on. Did anyone do anything special with the SeaCHi? Mine just arrived in the mail today...
How often do we wash that hair with cold caps? i heard to avoid three days before and three days after chemo. Do we wash once a week thereafter? can we do it more often?
Sorry for all the questions! Oh, and i did buy three hats today...just in case.
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Hi everyone! IM DONE!!!!!!!!!!!!!!!!!!!!! yay! and i have ALL MY HAIR!! 12 weeks of weekly taxol , 144 cold caps and all my hair!!! thank you thank you thank you everyone for all your support and love! i was a mess thinking i couldnt do it but every week it became our routine and the final result is the best!! i wish everyone much love and luck as they continue and start the cold caps!!! i am now a graduated penguinista! i will be sure o come back and reassure newbies! lots of love!
Jen
i will post a picture if i can ever figure out how to do it!!!!! anyone wnat to PM me and tell me how? i looked on the cyber sisters thing and still cant figure it out!
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Hi Everyone,
I have a question: I noticed that a lot of you have had mastectomies, even though your tumors were Stage 1, less than 2 centimeters in size, with 0 nodes involved and HER2 +. That was my diagnosis and pathology report and neither of the 2 surgeons I saw ever mentioned anything but a "lumpectomy". Noone mentioned mastectomy. Do you think that the women who have had mastectomies were very young?
Nancy
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Hi Nancy -
I am 43 with three young kids. Diagnosed in November, BMX in December. I have a mom and sister with BC as well. I did a BMX because it was always a matter of "when" I would go through this....and I knew from early on that this would be the best solution for me emotionally. My surgeon did not guide me on this one, but my geneticist did.
Hope this helps!
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Way to go jpmercy!!!!!
I knew you could do it.
I also used Pure Results shampoo and conditioner and did not have many tangles.
Nancy~
I was advised to have mastectomy due to the fact that it was close to the chest wall and in 1 node...
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jpmercy - Congratulations!!! You were fabulous the whole way through. Such a relief to be done!
Nancy - it's hard to tell someone's complete diagnosis, family history, etc. from the diagnosis line. There are many reasons to get a mastectomy. Some people have high risk due to family history and other findings in their breasts over the years. Also, sometimes the diagnosis may indicate a small tumor but it could be 2 small tumors far apart or there could be a lot of DCIS in addition to a small IDC tumor.I think age plays a role in that if you are very young you have many more years to develop BC again so a mastectomy is a way to lower the risk of that. I'm sure there are lots more reasons that I'm not even thinking of but the bottom line is that I'm sure your doctors did not think you needed a mastectomy in your particular situation.
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jpmercy - Congratulations! It it time for the penguin graduation walk!!!
Colleen
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jpmercy: Congratulations!!! woo hoo!! You did it!
Susan
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thanks for the congrats! i am so glad to be done..although ill have herceptin til October but that is not that bad, did everyone leave their port in the whole time? im leaning towards trying my veins and getting it out in spring when i have my nipples put on my PS can take it out...i just wnat to be able to wear a bathing suit and strapless dress without seeing my port! i know its vanity playing a role here but what the heck if my veins work for every three weeks then why not right? just wondering what others did! also, i treated myself and my mom to the penguin charm for the pandora bracelet! its the cutest little thing and the perfect gift for my mom to thank her for all her hard work!!
Nancy- Drim is exactly right there are lots of different reasons for me it was age im 30 and family history altough im BRAC negative my doctor felt that it had too many years ahead of me to develop this again. i have a year old baby and i that played a role for me too its really a personal decision and your comfort level!
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Congratulations and thank you for the inspiration...It is great to read and re-read your post!!!
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hi
i am new here and hope I am posting correctly. I am in Seattle Wa and just heard of the cold cap yesterday. I start chemo tomorrow but could push it out a few days. What is the fastest way to get the caps? I have contacted the co. gee I am considering even flying to California to get them. I visited the wig maker yesterday. But honestly. The hair thing just tips me right over the edge. I would rather committ to the cold cap. anyone have any info for me? I look forward to hearing from you
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