Cold Caps Users Past and Present, to Save Hair
Comments
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I was one of those who inquired about hair coloring and will keep the vegetable based coloring product in mind when I finally do venture out into that terrority. In the meantime, having my first haircut tomorrow since mid-Feb. I'm a little nervous and will make sure my stylist treats my hair with TLC.
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It is so fabulous to check in and see everyone doing so great. Yay! Keep it up girls,we will get the word out to other women who are facing this diagnosis, slowly but surely!!!!
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DanceTrancer: I went to ULTA to buy the JOICO reconstructor but the hairdresser said it has alcohol in it and would further dry my hair. I don't know what to do! I want a product that will detangle and strengthen my hair. Some shine and body would be nice too. It's so hard to know what risks are OK to take and what won't. Can anyone enlighten me - I freak out every time I wash or try to style my now dull frizzy, straggly hair that could have some cute scrunchy curls if I could just figure out the perfect product. Should i try the JOICO anyway? Shedding happening every day but still maybe 30-50 strands per day.. is that typical for rest of you after 2 treatments?
Thanks for understanding my fear and confusion!!
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I colored about 4 weeks after last chemo but used Naturtint (sp) found at Whole Foods. Chemo only stays in your body for about 5 days. Hair starts to grow back about 2-3 weeks after chemo. The reason many of us didn't see that is because we would start our next treatment when it was time for our hair to start growing. The hair that you are shedding is in part due to the caps not being tight enough in some areas as well as the normal shedding of old hair. The hair looks thinner in those parts because your hair is not growing essentially during chemo. My friend was one of the first users of the caps in Georgia about 3 years ago. At the time, the caps did not have velcro straps and she used panty hose and other homemade products to make the caps as tight as possible. She also washed her hair with regular shampoo and colored her hair twice during chemo, much to the dismay of Frank. She was in constant contact with Frank since she was basically trying it out for him here. She went through 6 rounds of TC and kept the marjority of her hair. While I was not as amibitious as she when it came to the type of shampoo and coloring during chemo, I went back to my normal routine about 4 weeks after and have been fine. Everyone is different and reacts different, but I'm just putting it out there that I think 6 months is ridiculous. Also, I just had my roots touched up about 2 weeks ago (this was after I colored myself around the 6 week mark - had my hair cut around that time too). Just for reference, my last round of chemo was 5/8/13
Side note: I put the caps on 50 minutes before the start of infusion and only wore them for 2 hours after.
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Thanks for the reality check, JLow! Sometimes it does seem like the protocol is a bit extreme. Last time I had to quit 3 hrs post treatment - I just couldn't take any more. I'm shedding but no bald patches...yet. But I need to go wash my hair and the combing it out freaks me every time. It also adds another hour to my getting ready. But better than bald!!! I have to keep reminding myself of that. Although half way through treatment so much remains to be seen. Thanks for all the insight..it's helping more than you know!
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Portland lady - I didn't think it had alcohol in it, but nonetheless, it did NOT dry my hair out, quite the contrary. It healed it. YMMV. It is an off-protocol thing I did...was scared...but it definitely made my hair easier to comb out and less dry and frizzy. So it is up to you whether to take the risk or not. Not everyone uses a detangler, but I tangle terribly - had to do something!
P.S. If you get it, make sure it is the liquid reconstructor (check the link I sent you to verify). I once bought one of their other products called reconstructor by accident - it came out as a a foam instead of a nice liquid spray...the foam stuff is far inferior, IMO.
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P.S. There is some other detangler/leave-in conditioner Penguin recommends, but I couldn't find it locally and needed it immediately. I can't recall the name. Someone on here probably knows what it is.
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I don't know what Penguin recommends but I use the spray on conditioner/detangler made by Joan Carter (you can get at Whole Foods). I use it everyday to comb and after washing. You have to look at the protocol and then adjust to your situtation, IMO. I can't comb my hair without a detangler if I'm not using heat- end of story. I would rip out everything I saved capping. I aslo think 6 months is a bit too long. The hair I saved is pretty tough and I only have a few thin patches by my temples. I plan to wait about a month and go back to my old shampoo/conditioner. 6 weeks for low heat on a blow dryer, and 3 months to relax. Subject to change, but that is my plan.
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Another side note: I used shampoo and conditioner (not a leave in kind) during chemo. It was a keratin type product that I found at CVS that had no alcohol or parabens, etc... Again, everyone is different and I TOTALLY get the fear of going against protocol. I even used luke warm water in the shower when I washed my hair. But I did only wash it twice a week and never 3 days before or 5 days after chemo. Worked out fine because I usually didn't get out of bed on day 4 or 5 anyway. I always freaked when I washed or combed my hair after showering. One day, I screamed in the shower because I thought a TON had come out in my hand. My daughter ran into my bathroom expecting me to be half bald. When I showed her the hair, she started laughing out of relief and said "Mom, I lose THAT on a daily basis. That's all you lost after not washing your hair for 3 days!" It was nice to have her bring me back down from the chandelier!
Stay strong ladies! The caps work if you have them cold enough and wear them before and at least 2 hours after infusion. We can all tell how much hair we've lost because we live with it daily and now live with the daily fear of losing it, but no one else will notice.
I will say this. I am much kinder to my hair than I was before cancer and appreciate it a whole lot more!
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Portland, I used California Baby spray detangler in the early days and it was very mild and worked well. After I got about halp way through I started using the DermOrganic spray or mousse with cool blow dry and scrunching. I was just careful to keep product on the shaft/ends and away from the roots. I tried a few shampoo/cond brands until I settles on DermOrganic, which I'm still using the shampoo. For conditioning, I would bend over so my wet hair hung down, pump some conditioner into my hands and rub it in my palms then 'apply' it to all the shafts and gently work it and kind of comb through with my fingers - I found that also made it a lot easier to comb out after my shower. I agree with JLow, i definitley treat my hair a lot more thoughtfully and it feels a lot healthier than before.
I started cutting one month pfc and have cut each month since. I used to get highlights and base color so I am planning to wait until probably October to be that brave, which will be 7 months. I really don't have much gray so am not feeling an urgent need to color.
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For the first time in months, I feel like my scalp is really clean. Because I am not shedding, I decided to "work" away the dead skin. I was gentle but it felt good to get in there instead of patting in shampoo. I didn't lose any hair in the process, I'm grateful to say.
Then I used a hair mask my mother gave me. It seemed a little silly since my hair is so short and there isn't much of it, but I wanted to get rid of the the frizz. It definitely helped and my hair looks a little fuller.
AND I SAW A FEW TINY BABY HAIRS. My mother has been telling me they're there, but I hadn't been able to see them. Yay.
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Gorgeous photo. Thanks for posting.
There is too much info in too many places re: use of the caps. Even the info from Penguin is fragmented and incomplete. Its frustrating. I left the caps on for 2 hours after treatment, since that is what Frank said in the video. Hope it works....
Today, first shampoo, conditioning, and attempt at styling after first use of caps earlier this week. What an ordeal! It feels like there is so much at stake every time I touch my hair. My hands just want to do what they are used to doing!
And the side effects from the nuelasta injection-- its been quite a day. I am glad I have this space to share in.
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tmb and jlow- i agree with you. all of our hair is so different. imo it is unlikely that a single protocol is going to work for everyone. i tried several shampoos/conditioners during the capping and found that some that were recommended by cappers on the penguin site did not work well at all for my curly, porous african-american hair. i had to adjust the washing schedule as well. shampooing too frequently can be damaging to some hair types and you can end up with breakage on top of the chemo shedding. i ended up shampooing roughly every 5 days... depending on how my scalp felt.. (and whether the neulasta was kicking my behind)
all that said - different people process the chemo drugs differently so there's also that variable. we're all on pins and needles and don't want to mess this up after investing so much time, energy, hope and $$$. but i think the key is to be gentle, pay attention to what your hair and your body are telling you and adjust accordingly.
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shipsgirl - doing a dance for those new hairs!!!! can't wait until i see some new growth too
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aef - I totally agree on the fragmented and incomplete information. I too watched the video and heard Frank say to leave the caps on for 2 hours after chemo. But then when I talked with my local Penguin rep she looked at me like I was nuts and said "oh no, it's 4 hours!". So I did the 4 hours, but it sure would be nice to have a real answer to this question!
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The video provided by the Penguin company is 6 years old! They've since modified the post chemo time. I've seen the 'instructions' they email to new users-they're terrible and unnecessarily complicated. Fragmented and incomplete are also good descriptions...They claim to have been in use for 15-20 years. I think if that were actually the case the company would have figured out better instructions, and also resolved their marketing and management issues.
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Thanks for the reinforcement on straying safely from the protocol. Someone needs to take over this company and market, revise instructions better. I will get the liquid reconstructor, DanceTrancer as it sounds wonderful and use it sparingly at first. I also used for the first time Pure Performance sulfate free shampoo and conditioner from EO. Ahhhhhh, my hair felt and looked so much better! No rats nests, not as dead looking, almost like my hair! It has lots of natural ingredients so some of you might want to consider trying it. I'm still looking for healthy looking hair and styling products that will help add some bounce without damage. I've NEVER spent so much, time, energy, $ on my hair but I'm not going down without a fight and can't keep looking like a mess.
In other news, I saw my SO yesterday and tumors are shrinking! Surgery is scheduled for Oct 16 with preop on Sept 16 after my last chemo to determine how much surgery will be necessary. At least with neo-adjuvant there is clear evidence that the chemo is doing it's job.
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Awesome PortlandLady! Some sweet news on the chemo working, too - what a great feeling that has to be!
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http://s13.postimg.org/xot5ee77r/IMG_7847.jpg
Hi ladies...just wanted to share a pic of me appx 6 weeks PFC WITH HAIR!!!!!! (pic was taken about 4 months ago) I honestly did not think I would have the amount of hair I did because I was constantly shedding throughout the whole process (and still am shedding @ 5 mth pfc). I also had 6 cycles of taxotere and cytoxan which I was worried that the caps wouldn't be as effective compared to other women who only have 4 sessions of TC.
I want to apologize for the pic because the photo isn't all that great but I'm hoping I can be some living proof that the caps work! I doubted the whole system over and over, only thinking that the caps would delay the inevitable. But i am almost at my 6 month post chemo anniversary and I have a full head of hair. Is it thinner? absolutely! But I have full coverage and no one could ever tell I went through chemo. That is empowerment.
I promised myself that I would come back to this forum to share my success so that other's can gain faith through my experience. Pay it forward ladies! Wishing you all the best in your journey...you are all far more stronger than you think and more beautiful than you'll ever know.
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ndmk - that is a beautiful photo! Your hair is fabulously long and shiny! I am so thrilled for you that the process worked. Thank you for coming back and sharing with us. It surely helps inspire the newbies who are in the "unknown outcome" phase.
Best,
DT
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Wow, ndmk! That is incredible! Thank you for sharing your picture. You are right - no one would guess you went through chemo.
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ndmk - You are a beautiful girl, and your hair is lovely too! It was definitely worth all of your efforts to prevent losing it. It would have taken at least four years for you to regrow that luxurious mane of yours. Thank you for posting your picture. It is nice to see each other after all we have been through. I wish you well as you go forward.
aef - Are you taking Claratin for Neulasta? I was told to take it the day before and for several days afterwards to ward off side effects. I was fortunate and had none, perhaps due to Claratin.
Congratualtions to all of you brave ladies who have just made it through chemo! Things do get better, you will feel stronger and side effects do go away. Life does return to normal.
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I am certain that posting photos of hair saved by using cold caps is very helpful to see for those who are facing chemo and trying to decide if cold caps really work and are worth the trouble. I would have loved to have seen quite a few of them when I first found this thread. I was tight on time so I only read snatches of this thread before taking a leap of faith and ordering them. I just hoped for the best because I REALLY didn't want to be forced to go bald.
Now, a year after chemo, my hair is healthier than it has been in ages and I have a mass of long new hair filling in all over my head - replacements of all the hairs I shed during and after chemo. My hairdresser and the salon owner have been so impressed.
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I am so grateful to all of you ladies on this thread. I have been reading and reading for the past ten days trying to decide if I'm up for cold caps. It sounds awful, but the thought of losing my hair is worse to me than losing my breast! To me, I know there is cancer in my breast and I just want it GONE! But what has my hair ever done to me?!?! I have just below shoulder-length dark, naturally curly hair and I haven't had it short since I was 5! I can't imagine going bald and starting over, waiting months for it to grow back and then YEARS for it to get this long. <sigh> I know there's no guarantee that the caps will work for me, but I'm willing to try. Thankfully my hubby is willing to go along with what I want and will be a great helper.
Unfortunately the first MO I saw wants me to do 4 AC and 12 T.... ugh. Not sure I'm up for 16 treatments anyway, let alone with cold caps! I know that regimen is hardest on the hair, and I also have a minor heart issue that makes me concerned about the toxicity of ACT, so I am getting a second opinion next week. The dr I'm seeing is the same one my sister-in-law used and she was on TC, so at least I know he uses that regimen. Obviously I want what will get rid of the cancer best, first and foremost, but I don't want to cause heart problems down the line either!
Anyway, I know this has been mentioned dozens of times, but I'm trying to get everything in order for what I need and thought maybe I could just ask. What shampoo & conditioner is best? Can you use a leave-in conditioner, or any type of detangler or hairspray during treatment? My hair has a mind of its own on a good day, so I can't imagine not being able to use anything for six months!Thanks a bunch and I'm amazed at the strength you ladies have shown, and the support you give to everyone else.
I'm so glad I found you.Michelle
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Hi Lighthouselady, All the women here have felt like you do know losing our hair is devistating. I don't know what kind of cancer you have but I was DX with a 5 cm tumor and IDC (invasive 3+) very agressive and her2nue positive. Her2NUE is also treated with a gene targeted drug called Herceptin. My onc also recommended the same treatment 4 AC and 12 T. I did some research and found out AC was really hard on the heart and not the best choice with herceptin, and that taxotere/carboplatin for 12 weeks = was only 1% diff in survival rates. I suggest you talk to your ONC and ask about this as ONC will always recommend the most aggressive because they want to make sure they have done everything to save you. My treatment is being done at the #2 cancer center in the US and I all things considered I have had excellent treatment. I talked with my surgeon and she said not doing AC was totally fine. as things turned out the taxotere /carbo combo was too hard on my body and I ended up just doing 12 weeks of Taxol which was "doeable" I kept all my hair too barley shed at all! I did my last round last week and should get the MRI results this week. My point- talk to your docs, it's your body YOU can say yes or no to treatments but get a second or 3rd pinion and do your research. You should be able to change if something is not working for you if you have a good onc. Be strong sister! 12 weeks went by faster than i thought. Docs can give you VALIUM or ADIVAN for the cold caps and you wont even feel them. My doc gave me OCYCODONE at first cause I was so afraid of the cold
The treatment recomended depends on the size of the tumor, nodes involved and the type of cancer you have. Cold caps havve been used succesfully over a decade in Europe and other countries and they sure made me feel like I wasn't a victim. I'm here if you need someone to chat with just add me as a friend if you like. Lots of love and support to you! 0 -
I have 2 IDC tumors, one is 2.2cm and one is 1cm - grade 3. There's some question about staging, because my lump(s) feels bigger than the imaging indicates. SO thinks the cancer is bigger. MO thinks I have a hematoma (breast VERY bruised from biopsy) and that's what we're feeling. So tomorrow I am having MRI, bone scan and CT scan which will hopefully tell us more of what's going on. Mammogram only showed "Subtle findings", so I guess I'm in the 50% of those with dense breasts where cancer isn't detected.
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The moderators here removed my post, guess they didn't like my opinions.
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Lighthouse - I am so glad you found us!
I was offered and considered ACT, but after discussion and due to several factors, including my oncotype test score, grade and stage of my tumor, and several health considerations, my doctors felt I could go with T/C which is what I did. I got a second opinion also and opted to stay with the second doctor. Like you, I have dense breasts and had to have all of those tests.
T/C is a less harsh regimine and hair seems to fare better with cold caps on it. But, of course, keeping hair should not be the primary reason to pick it. Listen to your doctors and then make the best decision for you.
Good luck!
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How long after chemo ends does the hot flashing stop? Its killin me at night. Also can't seem to find analuminum free deodorant that works..suggestions welome! I can't wait to color my hair again... counting the days!
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LeslieVilla - I think how long the hot flashes continue really varies. Chemo put me into instant menopause and the hot flashes I had were HORRIBLE. I was miserable. They made me feel physically ill. I finished chemo in June 2012, and I remember still being miserable until this past spring (maybe Feb/March 2013?) when they started gradually diminishing for me. I no longer have them at all, and consider myself very, very lucky for that. I hope yours go away, too!
I had no luck on the aluminum free deodorant search. Went back to antiperspirant with aluminum. Couldn't take being sweaty and stinky.
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