Cold Caps Users Past and Present, to Save Hair
Comments
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In response to those that asked how soon they can treat their hair normally, I am now 12 weeks PFC and tomorrow am having my first overall oraganic color!! I am so happy because while I have been able to keep the top of my hair looking O.K., if you lift it up all you see is 3 inches of gray hair.
I started washing my hair again in the shower after 6 weeks (using only warm water and a lighter spray setting) and I started using the warm setting on my drier after 6 weeks, but never aimed it at my rorots. I also used the Clairol Beautiful Collection color 4 weeks after my last treatment and it worked incredibly good. Before that I was using the various crayon or color sticks you can get at Sally's beauty - but they come off if you touch your hair.
It all depends on how much you shed and while mine continued for a while PFC it has now stopped - eye lashes and eyebrows are growing back, and I pray that I am on the road back to normal. For those at the beginning of this trail - there is an end.
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Shipsgirl - I have worn acrylic nails for over 20 years and kept them on throughout chemo - 6 rounds of taxotere and carboplatin - with no side effects. I kept getting them done as I had previously and had no change. My suggestion is to keep them going and if you notice something then you can stop then.
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Just wanted to share an updated picture from Easter yesterday...for those of you still working the caps, keep the faith! This is only 2 weeks PFC, so once I can get back to my normal styling routine and highlights someday, watch out! LOL
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Hope49 - you look fantastic! Congratulations on a successful trip through Cold Cap land!
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Hope, you look incredible! Congratulations! What a wonderful success story!!!!
xo
curly
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Thanks, ladies! Just hoping I can inspire others to put in the effort and hang in there, you will have some hair to work with...I had to do some creative work to get this look yesterday but it turned out pretty good.
Curly, so happy to see you posting...I hope that means you are feeling well today. Let us know if you have any questions for the next time around!
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Hope you look stunning!!! We need to meet for lunch girl!!
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Hope, You look fantastic!!
Your posts are always so upbeat - I am sure they have helped many a capper and I hope you will continue to chime in and keep inspiring newbies.
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Dear Hope,
Congratulations! You look wonderful and it looks like you have the majority of your hair. For some unknown reason, I lost this board and just now got it back. I still have two more treatments to go and then I'm going to do a happy dance that chemo is over. I'll also be happy to send back these wonderful caps that have allowed us to keep our hair. I can't say that I will miss them, but so happy they were available for me to use. I want others who read this to know that I not only have hair, but my hair continues to grow.
Keep capping everyone,
Rhonda0 -
hope49, you look beautiful. this site has given me great encouragement, I am determined to do what it takes to keep my hair.
Thank you all, for posting pictures and info.
It helps more than you know...
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YAY, Rhonda! I've been wondering how you were doing, glad to hear it's going well! I agree about the hair growing...my bangs are no longer bangs and my blond highlights now have dark (but happily not gray) roots...I told my family I am adopting the 'ombre' look that's in now...if its good enough for the Kardashians...:)
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Welcome Sissy! Oh we know-we have all been there. Hearing those shocking words is the hardest part. It will get better. Keeping your hair will help your mental health more than you can imagine.
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Does anyone know the secret to getting a reply from Penguin? I have emailed twice and left messages for both the call numbers on the website but I just can get a response. Is there another address or phone number I should use?
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Shipsgirl, I am sorry you are having difficulty. I found Geralyn very quick at answering emails. What email addy do you have? PM me and I will send her email addy to you.
curly
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Thank you Curly, I have PM'd you.
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Hi my name is Millie and I just started TCH, I've had 2 treatments so far. I cut my hair really short, a buzz, but it just keeps falling out, it looks like its raining in the sink when I wash up. It's truly upsetting and I'm wondering if I should just shave it off...
Never heard of coldl caps, wondering what those are all about, please respond..0 -
Hi Millie/arc911. Cold caps are used to save hair during chemo. Basically you wear very cold gel-filled caps before, during and after chemo infusions to freeze the hair follicles and keep them from ingesting the chemo drugs. Unfortunately they would be of no use to you at this point - you have to start using them with your first chemo treatment. There is a forum called something like "hair hair hair" where you might find others in your situation. Also there are usually forums for the particular month of starting chemo - so if your first treatment was in March, look for a March 2013 chemo forum. Good luck!
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Hi all - well finished last chemo ( TCX4) last Friday ( on Good Friday - how symbolic!) Yay! Had a rough go of it this week - but hopefully am done with this portion of the program forever. Next step is surgery , April 30. My chemo was neo, for shrinkage, and it worked, so I'll be having breast conservation surgery ( tumor/tissue removal and a reduction on both sides) . Nervous, but glad to have avoided a mastectomy.
About my hair: well, I've lost about 50% , maybe more. Brittle, thin, scraggly, curly, shorter, gray at roots. but NOT BALD! Yay for Cold Caps!
Thank you all for the tips on how to treat it -I have not done anything different yet as I am only 6 days PFC. Hoping no more shedding. Seems to have slowed but will it continue?
Hortense -your instructions are very helpful!!! One question: how long PFC did you apply the glaze? I desperately need that.
Also has anyone used clip-in extensions in the interim? - my formerly thick hair is so thin now you can see right through it....
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P.S.
hope49 - you look fantastic! Congratulations!
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Hope49 - You do look fantastic, but I urge you to keep up with these discussion boards because everyone reacts differently, even post-chemo. I am now 13 weeks PFC, but around 5 weeks out I began to shed horribly and lost my eye lashes and some of my eyebrows. The only reason I wasn't freaked out is because others on this discussion board had talked about those reactions and so I knew they were a possibility and could handle them better. I lost about 35-40% of my hair (most post-chemo). Yesterday I had extensions (not clip-ins) put in to give it back the thickness I enjoyed throughout chemo and before. Once you feel your hair has stabilized, there are more options to "getting back to normal."
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Hope - you look awesome! So happy for you - woo-hoo!
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ecarol - It is too early for you to glaze or color your hair, try to wait a while longer. From Penguin's Instructions:
"AFTER CHEMO - Continue the hair regimen for at least 1 -3 months after your last treatment and see what condition your hair is in."
I do suggest that you try using a different shampoo for a while to really cleanse your hair and scalp now that you are finished with chemo. I believe you will find that your hair will have more volume and that you actually have more hair than you think you have. I found that my organic shampoo combined with the gentle patting method recommended by Penguin simply wasn't getting my hair and scalp completely clean during chemo and my hair looked a bit lanky and limp. I hadn't dared use my fingers to massage my scalp and the result was I had a build up of oil and dirt that wasn't being washed away.I did some online research for shampoos for thinning hair as well as for shampoos that removed residue. I read good things about Nioxin #4 for "chemically treated and noticeably thinning hair" shampoo and conditioner so that's what I got, although I am sure there are other products that might work well too. They are not organic, but I felt I needed to get my scalp and hair really clean without scrubbing. I started a week after chemo ended and it only took about two shampoos to make a big difference. I have since gone back to using organic now that I can shampoo normally.
I used cold water to wet my hair as per Penguin protocol, then put a heap of shampoo on, patted it in and let it sit about five minutes to allow it to work on the build up before gently rinsing it out. I could see a marked improvement, so the second time I started the same way then very gently ran my fingers through my hair by the roots to help loosen whatever might be clinging to my scalp and hair before rinsing. I was careful not to massage. I was scared I'd accidentally tear out my hair, but that didn't happen. Everything was fine.
I cannot tell you how nice it was to feel really clean again and to discover that I had more hair than I realized. I also began to blow it dry on cool which helped to add volume, and I used a bit of warm on the longer ends which polished them and let me give them a bit of a curl.
My roots looked awful - they were long and healthy and several shades of gray, but I decided to live with them until I dared do something. Your hair may be healthier than mine was so perhaps you can put a glaze or semi-permanent color on earlier than I did. I waited until three months PFC. I was experiencing a lot of breakage at the point between my natural colored roots and my bleached hair because I had foolishly done my roots six days before starting chemo and the chemo definitely reacted with the newly bleached hair at scalp level. There was a visible knot at the juncture where the natural hair met the bleached and that knot easily broke off. I didn't want to do anything to lose any more hair, as you can imagine.
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ecarol, I think mdg used some type of hair extensions after treatment. You might PM her.
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I used extensions. I went to a beauty supply store and bought human hair extensions. They can get pricey. I think mine were $90 but when I told her why I was using them the owner gave me a discount! I didn't know how to use extensions so I google videos on you tube and there were some. I was lucky to find some that matched my hair color.
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Hi all, I just started with the cold caps on AC x 4. I had the caps for a total of 8 h - I kept them 5 hours after infusion. My neck was finished from the weight of the caps but overall the experience was hackable. I can definitely do this 3 more times. However, after AC, I have 12 weeks of Taxol. I don't know if I'll be able to pull off 12 weeks of cold caps. What has your experience been with Taxol? I spoke to two nurses; one told me I would lose all my hair; and the other said that some patients remove the wigs during taxol because their hair started growing.
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modavie - Congratulations on your first session! Hope you are doing well chemo side-effect wise. I am sure a taxol girl will check in soon to give you an answer.
Best wishes!
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Ok I hate to sound totally ignorant, but what are these cold caps? Should it have been used since chemo day 1, or can I start using it now? I had very long hair but recently cut it very short in the event of total fallout. Even bought turbans and scarves (a wig will be too hot for me!) I would like to keep my hair, naturally, but I've noticed since I started Remicade/Methotrexate over a year ago (since discovery of BC discontinued that treatment), that my hair's been thinning out, no bald spots, just thinner than thin. I heard after chemo when your hair grows back it grows back fuller? I wouldn't mind that, but then again, I wouldn't mind saving my hair. Next week beginning treatment #2 of A/C.
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Had dinner last night with my woman that put on my cold caps - hadn't seen her since my last treatment on January 2 - and found out that a segment on penguin cold caps is going to be on the morning talk show "The Doctors" sometime in the coming weeks. I was told that the woman that coordinates the penguin cold caps in California will be on the show and will demonstrate how they are put on on and how they work. This is the kind of publicity the cold caps need to get the word out there. I tell everyone I meet about them and it is amazing how little the medical community, let along the public knows. The Karmanos Cancer Center here in Michigan has only recently let women use them, and even then it is not consistent. I understand their focus is on curing cancer, but it seems like the medical community doesn't understand that treating the whole peron (hair included) has to be part of that process.
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Thanks, everyone, for the kind comments! Happyfollicles, I am definitley aware of the potential for additonal shedding and am prepared for that...I will be keeping up with this board as well, to share what may come and help others along.
eCarol - YAY for you being done with chemo! And glad the caps worked for you...with a little creativity you'll be able to rock a 'full' looking style
mdavie - great job on round 1! I did not have Taxol but I'm sure someone will weigh in...maybe you could search 'cold cap users taxol' and see what comes up? I know I read about an early user on this board who did all 16 rounds of capping by herself! I jsut remember that being so inspiring and I figured if she could do that alone, I could make it through my treatment with helpers. If I can find the name, I'll share it.
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Yay Modavie! So glad for you to get the first one done. Sounds like you handled it like a star!
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