Cold Caps Users Past and Present, to Save Hair
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Here is my extensions! Well half! Half are going on tomorrow! I'm so excited0 -
Daisy, I don't have any helpful hints on products for you, but I wanted to say how much I admire you for doing cold caps for so long. Your success on taxotere is pretty amazing. I hope it's doing the job on your cancer.
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Today is 6 days after my second TCH chemo and I'm shedding... a lot. When I run my fingers through my hair, I pull out 10-15 strands each time. They're not all coming from the same spot; it seems to be consistent all over my head. Is this normal? Will it slow down? Aaaagh! I'm slightly freaking out and need to stop touching my hair!
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Good evening cold cap users!
Boy this is a long thread! I've been reading back for many pages trying to find the answers to some of the following questions and I thought I would just go ahead and ask them here and see if anyone is available to provide some answers or guidance (& I did read the main cold cap info thread first to see if my answers were already addressed there-- thank you to whomever put that resource together!) I numbered the questions so it would be easy to respond I simply addressing any answers you wish and using that number in your response. Please feel free to PM me if you prefer.Thank you so much for your help!
1-- I have hair about 4 inches past my shoulders and was about to go get it cut to chin length in preparation for cold caps, assuming it would be better to have shorter hair, but I have read some people say it is better to leave hair longer-- maybe my shoulders. My hair is brown and very thick -- if that matters.
2-- I will be receiving the chemo cocktail of Cytoxan & Taxotere for 6 treatments. I have been reading good results for those receiving 4 treatments, and I was wondering if anyone has used caps through 6 with success.
3-- Has anyone seeked partial or full payment of their cold caps through their insurance with any luck? Or perhaps negotiate with any of the companies?
4-- I have read about people using a topper with no clips – – how does such stay on the head?
5--lastly, please simply report which cap system you used, type/duration of treatment, level of success and any special tip to share--i.e.: PCC, CTx6, lost 50%; light French braids helped with holding hair in place and covering patches.
Love to all!! 😘😘😘😘
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I can answer #2 for you -- no need to cut your hair unless you want too? - Go to this topic and check out sherry -
Forum: Managing Side Effects of Breast Cancer and Its Treatment → Topic: Cold Cap Before and After PhotosI can answer #4 for you -- it has a headband -- go to this utube video -- from thinhairthick dot com
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Toughcookie -- you will shed, it is normal - STOP TOUCHING YOUR HAIR ..
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Toughcookie -- you will shed, it is normal - STOP TOUCHING YOUR HAIR ..
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Hi MamaFelice, I just finished 4 rounds of taxotere/cytoxan friday and mailed my penguin cold caps back today .....WOOHOOO!!!!!! I had fine shoulder length hair that had thinned somewhat before chemo due to menopause, so keep that in mind as I answer your questions.
. 1. I cut my hair from shoulder length to slightly below chin bob about 3 weeks before chemo. It was great in the beginning because there wasn't as much length to untangle, and the Kenra leave in conditioner was wonderful for helping my waves dry in a nice beach look, so I felt "styled" without having to do any of the "not allowed" thing to my hair. HOWEVER, as I started to shed more, I really wanted to put my hair in a soft ribbon pony tail so I didn't have to deal with the falling piece (which really bothers me), and found my hair wasn't really long enough to do it easily. Penguin says not to significantly change your hair right before chemo, and i think that would be especially true if you have thick/heavy hair (they say your follicles are used to a certain weight, and "lightening the load" by cutting significantly is actually harmful to the capping process.
2 i only had 4 rounds of TC, and would say I have kept 2/3 of my hair so far(will try to post photos tomorrow). I'm only on day 4 of the last round, so have some shedding coming up in the next 2 weeks, and it sounds like shedding continues for a fair amount of time after treatment is finished.... i am hoping that I will have half my hair stay, plus the new growth, but we'll see. I capped mainly out of fear (terror!) of permanent hair loss with taxotere, but having my hair throughout treatment has been a wonderful bonus!!!!
3. My insurance only covers "prostheses" for mobility purposes, so does not cover wigs or capping. I have read that others have gotten some coverage though, so it's worth checking into.
MORE IMPORTANTLY, someone recently posted here that they rented "used" caps from penguin for $300 per month, as opposed to the $495 "discount rate" offered when I ordered in July. The caps can easily be cleaned between patients, and I would've been all over that option if I had seen it before I ordered!!!!
4. No clue
5. PCC, TC x 4, so far have lost about 1/3 of my hair, but no bald spots or wide part showing yet. PFC x 4 days, so still have shedding to go though.
Since you have a lot of hair, I would recommend you talk with the different companies about success rates. Penguin is more expensive, but their caps chill to a colder temp and you don't have to keep your hair wet under a shower cap to get your scalp to the correct temp.... seems like that would be really important if you have thick/loads of hair..
Hope this helps,
Willow0 -
MJPow, your eyelashes and brows look amazing! What regrows shampoo do you use?
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I was on that regimen of 6 treatments. I used penguin and i lost half of my hair because it got detangled after the 21 day of the first chemo. I rented used penguin cold caps and are exactly the same so i saved some money, ask them they don't offer it to you. Don't cut your hair. Don't comb it everyday, just the day of the wash. I had long hair but it got short because the detangled pony tails that i had to cut. See my posts and you will see the way i have it now. Short but not bald spots. I wear a pony tail everyday and i bought a halo extension that i wear only to go out. Nobody notice i was dealing with chemos at my work. So my advise is do it. It is really worth it. I just finished the 6 chemo last week and i am happy with the results. Good luck.!
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Also, if you go with Penguin caps, just buy the recommended size igloo wheeled cooler rather than pay the extra in shipping costs both direction... I bought the size in an awesome Seahawk style for $40 at costco, but walmart has a plain white one for $25 or so and I'm sure you can find it on amazon too. Using fedex express 3 day saver shipping to delivery the caps before my chemo start date, it would've cost about $50 more to include the cooler - and the same when the caps are returned.0
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Brightness, update on the coconut oil for dry scalp --it seems to be helping. I use it twice a week, and it looks better. Getting ready for taxol # 8 on Thursday. The people at my infusion center are starting to notice that I still have hair. No one there had seen anyone use cold caps before. Hopefully I will be their first success story!
MamaFelice, I cut my hair to chin length mainly because it has enough curl so I don't have to do anything to it, where I had to straighten it when it was long. I am on 8 of 12 weekly taxol treatments and get herceptin every 3 weeks. I use arctic cold caps so have to use dry ice and a cooler, and change caps every 20 minutes. The good thing about it is when chemo is done I go home and continue with the caps, I don't have to stay at the infusion center any longer. It's much easier to do than you might think. I have someone help me at the infusion center but do the changing st home by myself. It sounds much more complicated than it is. Have not lost anymore hair than I normally would so far. Good luck
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Good morning ladies!
Thank you so much for your help here and your private messages! We ordered PCCs yesterday now that they have the discount option available....I don't mind a scuff or mark. Thank you so much Willow for suggesting that option as well as purchasing the cooler just for the savings in shipping cost!
Another question I meant to put out there is regarding your pillow case.... did you all use a silk or satin case and find it helpful?
Heading to chemo 101 class today. Since I received chemo for lymphoma 24 years ago, my brother joked "shouldn't you be taking chemo 202 ?" We all try to make the best out of this situation! 😘😘
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vivianlu8 - where did you buy your halo extension? I have curly hair the same as you. What type of halo extension do you have?
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Hi Ykh the name is mulberry you can find it online and they ship it worldwide. It cost me around 300 and they gave me a receipt for a wig. The insurance paid it.
It is the only brand that i found of human hair and curly. It looks very natural and they match your color perfectly.
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Here is the extension the only thing is i cannot dye my hair so it looks weird but in 2 months i will dye it darker as well as i can dye the extension too. Like this is the way i was before the chemos. So i feel pretty normal. I guess i will use it for 6 months at least until it grows back. I had eyelashes extensions. And i have make up in in eyebrows. And for the newbies after 6 treatments of FEC, taxotere tha it is pretty tough with the hair i dont have bald spots. So for me cold capping with Penguin it was a success.
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vivianlu8- do you have 12 or 14 inches extension?
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i bought 14 inches and they cut it, it is better when you have it on to see the way you like it.
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newgammy, I'll keep the coconut oil in mind. For now my scalp isn't as itchy as it was at first thank goodness. It still flakes, but mostly right after washing. My hair feels more dried out than before chemo. That has me a little worried.
Mama Felice, I use a satin pillow case. It feels so good I think I'll use them even after chemo is over. I don't know if it really helps, but it does help me to feel like I'm being proactive.
Treatment 4 tomorrow. Everything about this scares me
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Brightness, It is really scary, I agree. I try to be positive and not to dwell on how bad this all sucks, but sometimes I can't help it. Then, I take my anti anxiety meds and keep going. One day at a time is about all I can usually handle. Then, I look at my husband, children, and my beautiful grandson, who will be 1 month old tomorrow, and I remember why it's worth all of the crap I've had to go through.
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I use a silk pillow case and I think it helps with dryness -- also Dignicap gave me another tip that I will start today -- they said that some people use a cool mist humidifier at night -- I live in a dry climate, so adding humidity is suppose to help with dryness of hair (dry = breakage).
So half way in I am adding that to my long list of things of very special hair care. I work from home right now, so I will probably add it to my office routine as well.
#3 cycles of TC down -- 1 more to go - I still have hair - thin yes - still have it and it makes me better able to mentally deal with all this. Let's keep going ladies!!
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Ordered silk pillow case on Amazon today, and already have a satin one. So many little details to take care of before it all begins.
Good luck Brightness with 4th chemo tomorrow! Only 2 more after that for you!! Yay!!!
Congrats Travel Girl on 3 down and 1 to go!
I'll be starting my 1 of 6 on 10-16. I look forward to counting down and reporting cap results here.
Night everyone
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MamaFelice - good luck with everything. I think you made the right choice with PCC. I also have a silk pillowcase and love it! Bought it off amazon too. I will be using a silk pillowcase forever. It keeps my hair from tangling and drying out.
Please feel free to call me if you have any questions about anything. I put my phone number in a private message to you. I also wrote out instructions for my cold cap helpers that I would be glad to email you. Just private message your email to me.
So sorry you’re having to go through this again after 20+ years.
Pa
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Thanks Pambc for the helpful PM!
I feel blessed to have so many of you ladies helping me pave this path-- I truly feel like I am part of a science experiment that will benefit so many more women moving forward!
I know Vivian has talked about her low, light ponytail that she has used as a hair style through the thinning process. I was wondering what other styling tools you all have used with luck-- i.e.: large hair clips, small clips, headbands, French braids, etc. I know I have to be careful regarding pulling on the follicles, so that is why I thought to ask you all if you have had any success.
Thank you!!😍🦋
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MamaFelice - I really tried to let my hair hang down as much as possible but washing the face was a real challenge. I purchased this loose terry cloth headband called Tassi head wrap. It is a great tool. I did use a soft elastic cloth tie for a loose ponytail once in a while.
I also used a shower cap so I could take warm to hot showers. After my shower, I would let my hair hang down and let a soft spray of tepid water over my hair to wash. Gently massaging shampoo into hair and then rinse, repeat. I used Pureology hydrate shampoo and conditioner. I found washing my long hair in the shower with it hanging down straight caused less tangles. The Pureology hydrate conditioner (light purple bottle) is great for preventing tangles.
Good Luck
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Here is a photo taken in July of the back of my head while dancing at a banquet with my son. I chose to let it air dry naturally that day and this pic really shows the result of such....big and wavy/curly. My challenge with my natural air-dried hair and cold capping is that after a couple of days with it simply hanging down as well as sleeping on it, it will become quite frizzy & tangled. This is why I was asking in a previous post about using clips, ponytails and headbands to help with daily wear on my type of hair..... OR if I would be better of slightly blowing it out with a cool air setting in an effort to straighten it a wee and avoid the frizz and tangles that will be waiting for me at my next wash, and certainly lead to a lot of shedding.
I'm also sending this pic to PCC to see what they recommend and I'll let you all know what I learn. And now I have posted the before pic of my hair....let's see what PCC can do through my 6 treatments of TC!!
And meant to say thank you to Pam for recommending the Pureology spray-- it is just what I am looking for!!
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I washed my hair this morning. I probably didn't lose anymore than normal, but each hair strand seems so precious now. I've finished my 4th taxol treatment. Is it safe to say cold capping is working?
When we finish chemo, do we still have to keep doing cold water washes for months after? I know I know this stuff. I did a lot of research, but my brain seems so foggy these days that I want to be sure andmhinestly don't have the energy to look it up so I'm hoping someone will just tell me.
Mama felice, I've accepted that my hair will just look rough for a while, but at least it will (hopefully) still be on my head. Also, I used pureology in my pre BC life and I thought it had either parabens or sulfate in it so I packed it away for the time being. I could be mistaken, but double check before you use it.
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MamaFelice -
I was told by PCC to start using Shampoo and conditioner without paraben and sulfate prior to chemo treatment. Fortunately, I've used Pureology hydrate (which PCC said was good) for at least a year prior to my diagnosis. I love your beautiful hair and it reminds me a lot of a the same curly and thick hair my friend has. I suggested to her the Pureology hydrate conditioner and the leave in conditioner to spray. She was amazed how well it reduced her tangles. I'm not a Pureology rep at all! My hair dresser suggested it for my hair because she said it literally changes the texture of people's hair. It may be expensive but just use a dime or quarter size of conditioner with your thick hair in the shower, massage it gently into your hair from the scalp down, and rinse. It smells great too.
Good luck! You've got this!
Pa
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Brightness456 - I think I was drafting my post about the same time you posted!. Pureology hydrate is all natural, no parabens or sulfate. In addition, PCC recommended it to me because I have long thick hair. P helped a lot with my tangles. I could not comb it out with Acure alone. Pureology is more expensive so they also recommend less expensive alternatives like Acure clarifying shampoo, I don't like Acure conditioner but I do shampoo once with Acure because it seems to clean my scalp, and then a second time with Pureology hydrate. There are several different types of Pureology products so make sure it is hydrate in light purple bottle.
I'm 3 months post chemo and I still use tepid, not freezing cold, water in the shower on my hair. I will continue until 6 months, as PCC suggested. I have kept at least 75-80% of my hair. No one can tell except I cannot color my gray roots for another 3 months. I do use lots of L’Oréal temporary hair color spray!
Good luck and it sounds like you’re doing well with cold capping! Attached are the ingredients for Pureology hydrate.
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Pambc, thanks for the tip and the positive thought. I'm having yet another blue day so every kind word makes a difference.
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