Cold Caps Users Past and Present, to Save Hair
Comments
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I'm 6 months PFC now and pretty much back to my normal hair care routine as well. I've colored twice and had about 5 inches cut off in increments. I continue to use a wide tooth comb because I find I prefer it over a brush although I never used a comb before cold caps. The hairline around my face is sprouting lots of new baby hairs and they are a constant reminder (in a good way) of how well cold caps worked for me. I couldn't imagine that I would ever be finished when going through treatment, but here I am feeling and looking like my normal self. Happy holidays everyone.
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I'm 6 months PFC now and pretty much back to my normal hair care routine as well. I've colored twice and had about 5 inches cut off in increments. I continue to use a wide tooth comb because I find I prefer it over a brush although I never used a comb before cold caps. The hairline around my face is sprouting lots of new baby hairs and they are a constant reminder (in a good way) of how well cold caps worked for me. I couldn't imagine that I would ever be finished when going through treatment, but here I am feeling and looking like my normal self. Happy holidays everyone.
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Today was day 17 since my chemo. This evening there is a spot on the top of head that is very tender. It feels like it sometimes does when you've taken your hair down after you've had it up or in a clip. I am very nervous. On the other boards, I always see posters talking about tender scalp right before the hair goes.
We got a late start getting the caps on ice and I know the first caps probably weren't cold enough. So nervous.....
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One Texas. I had those feelings like you are talking about, like you pulled your hair in a different direction with a pony tail or something. They came and went and I had shedding. BUT I kept more than I lost! It's the nail biting stage for you, but hang in there!
I am a little over 4 months PFC and I colored for real today! It felt and looks so much better. The new growth is over 1 1/2 inches as well. Chemo just seems like a bad dream now! It really went by fast and I can't believe it has been over 4 months.
You new gals are going to be on the other side of this in no time!
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Hi Everyone - May I ask a favor. I am overwhelmed with the information and will meet with my Oncologist on Christmas Eve as my family is eating dinner to go over the Oncotype report. It appears that cold caps work well for certain chemo drugs, fair for some and poorly for others. Can you give me a break down of which chemo drugs the cold caps work for and which they don't? I'm trying to prepare myself with information in advance. Thank you.
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Warrior woman - According to my oncologist at NY Hospital's breast center, who has had over 50 women use cold caps and who is currently part of a clinical trial using Dignicaps, scalp cooling works better with Taxotere/Cytoxan than with ACT which is a harsher chemo regimen. With luck, your oncotype report will not indicate that you would benefit from chemo, but if it does, as mine did, maybe you will not need the big gun in the form of ACT. I was actually given a choice and mine was T/C as the percentage rate for long term survival was not worth the extra strength and side effects.
Should it turn out that you need chemo, at the very least, please ice your nails to protect them from damage - your toenails also.
Good luck!
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Hello Warrior Woman,
I've compiled the research on effectiveness of cold caps. According to the latest (2011) review article, the authors note that results are excellent for those being treated
with taxanes (docetaxel [taxotere] and paclitaxel [taxol]), and anthracyclines
(doxorubicin [adriamycin]) but poor for those being treated with the two types
of drugs simultaneously in combination with cyclophosphamide (cytoxan). Results
are somewhat better when the drugs are given sequentially – doxorubicin and cyclophosphamide
followed by docetaxel (Breed, 2011).Here's hoping your Oncotype is low so you don't need this info.
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Texas, I also experienced tender spots on my scalp during cold caps and I remember other women saying the same thing. It doesn't necessarily mean they're not working. You'll feel much better mentally when you get to your next chemo with hair intact.
Warrior Woman, wow results on Christmas Eve?!! Just know that if chemo is recommended it is not as bad as you might think. My chemo regimen was taxotere and cytoxan (TC) every three weeks. Women on this regimen generally have very good results with cold caps.
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Daye, you and I are only 4 days apart for our treatments.
So far so good as well. I am very happy with the results so far. Hard to get to used to not washing my hair as often and with cold water but I will take it if when this is over and I have my hair. I have found very little shedding as I would shed beforehand. I have ALOT of hair.
Texas, I have had tender spots as well both times I did the caps. I think it is some kind of frost bite. Even though I flipped my each time a new cap was placed. I also would have flaking about 10-12 days after my treatment. It has not affected the hair. But again I will take it if my hair remains.
My daughters Bat Mitzvah is in February so I will be thrilled to have my hair.
I am amazed at how well it works and how many people are unaware of what cold caps are. Thanks for everyone's support on these boards.
Happy Holidays and here is to a healthier 2014!!
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I had a sore scalp too- like the flu. Kept the hair- most of it anyway, the old hairs do fall out.
GOOD LUCK!!!!
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Thank you everyone. I've been reading through the threads and your synopsis brings it all together.
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For newbies...
I had the tender spots...felt like my ponytail had been too tight or something. I kept my hair....lots of us had this feeling so it's normal! Hang in there......Also many gals had the dry/flakey scalp - that's normal too. If you are in the beginning phases - yes the hair is greasy now, but in a few weeks it won't get as greasy. It changes and quite honestly if you don't go back to washing it daily after you are PFC it will not get greasy much anymore (I am almost 3 years PFC and only have to wash my hair twice a week....it doesn't get greasy! Crazy!) The waiting and wondering with cold caps is enough to drive anyone crazy. That is normal too. Have faith...the caps work. So many women have had success......you CAN do this!Happy holidays to all!
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LisaM, my daughter's out of state college graduation was about 16 days after my first chemo infusion. I remember being a nervous wreck that the caps wouldn't work and my hair would be falling out in clumps during graduation weekend. I had never met the parents of her roommates and certainly didn't want to be cancer mom during the graduation if you know what I mean. I'm happy to say that my hair stayed put. You will be just fine for your daughter's Bat Mitzvah.
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Thanks JC!
I am actually not as nervous as I was when I first started. If all goes well I will be done with my treatments about a month before the bat mitzvah.
Going through all of this and planning our first "big" event has been interesting but makes the time fly by. At least it is all good things and with the holidays makes the time go by quickly.
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I am now 11 months PFC. Happy Holidays to all where ever you are in your journey.
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Congratulations schoolmom! Ten months PFC for me. SO great to be through it all as if it was a bad dream.
Current cappers, you will get there- have faith in the caps! I hope your side effects are minmal and that your follicles stay happy through the holidays.
Merry Christmas to all,
Hugs
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I had the sore scalp feeling too. Since I've lost hair in my first tx I knew how it felt before coming our but it didn't happen this time and I kept my hair.
I'm 8 weeks PFC and my hair looks great. Still shedding when I wash 2x per week but no one would notice it. I don't know if I will ever go back to daily washes. I really want to do permanent hair color but I can't complain.
Brows and lashes are coming back. Yay!
Merry Christmas cold cappers.
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Merry Christmas, Happy Hanukkah and Holidays to all you brave pioneers! Blessings and warm wishes for a wonderful season to you all!
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Merry Christmas fellow cold cappers!!!!
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Marsha you look great- congrats!
Merry Christmas fellow cappers!
Holiday hugs
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Hi Everyone and Merry Christmas,
I am new to this forum but I have to say all the info regarding cold caps have been extremely helpful! I will be starting chemotherapy on 1/6/2014 and I am pretty sure I will also use the PCC's. I do have some concerns that maybe you all could help me out with...
My hair is thick and super long (to about my lower back). Should I cut my hair shorter? I am not sure if length matters with cold cap therapy, but I figure shoulder length hair maybe more manageable than my long hair.
I know I have to baby my hair, and I will not be able to wash my hair for a few days prior and a few days after chemo. I know my hair will get pretty greasy during this time but I am concerned about looking a little grubby at work. Any tips? Thanks in advance and have a happy holiday!
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hi Jwood,
They say to not cut your hair prior to capping, it puts different stress on the follicles from the changed weight. My hair was long and did okay.
I also worked full time through chemo and could not let anyone know what I was going through. I had the same concerns about my hair not being groomed as usual. I didn't need a headcover due to hair loss but I did wear some wide soft headbands, and silky scarves over the crown tied in the back, at the nape of the neck, to cover the "non-brushing". Matched to my outfits, they looked okay.
Your hair will not get as greasy, mine is still pretty dry 10 months PFC. I and many of the other girls wash hair 2-3x a week now and it is plenty.
GOOD LUCK with your planning. I am so sorry you have to be here with us, but it is sure a great group of girls.
Hugs
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Hi Jwood,
I have very long, thick hair and I am 2 treatments in with minimal hair loss. Although they say you should not cut your hair prior to treatment I trimmed mine about 2 inches a few weeks before my 1st treatment because of the split ends. So far so good. Yes you are supposed to wash your hair 3 days before treatment and then 3 days after. It is not so bad and my hair has not been that greasy. Definitely get a wide tooth comb to "brush" your hair. It is amazing how well the PCC works.
GL with everything and happy holidays to you too.
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First chemo was 12/5.... I am shedding like crazy, but have pretty think hair Most of my shedding is from the crown area and thT area is also still sore. I am a nervous wreck that at this rate, there will be nothing left by Spring.
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@ Sciencegal and LisaM,
Thanks so much for the advice! Do you ladies have any recommendations for shampoo? The closer it gets to start chemo, the more nervous I get. I was thinking about going through whole foods to see what they have. I hope PCC works just as well on my as it did for you all. I'm planning on taking some before and after pictures. I will share with you all
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Based on recommendations here, I have been using the following which I got from Amazon. I believe Ulta also carries it in a travel size if you want to try it out first.DermOrganic Sulfate-Free Conditioning Shampoo with Argan Oil
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I have been using Jason's brand of shampoo. I got it at Whole Foods. I also bought the conditioner but have only used it once just on the ends of my hair. It is completely normal to be nervous. It is the unknown. You will be fine.
@texas...when is your next treatment? Don't panic yet. I am sure that you are fine. Maybe if it is shedding by the crown your cap was not on tight enough? Do you have the 2 straps and a gel band?0 -
Texas you are right in the worst part of it- day 14-21 is when most people on chemo would completely lose their hair. the shedding should slow down - all of your "oldest hairs" are coming out now. PCC keeps the newer hairs in place.
Remember to keep kneading your caps- it also helps reduce neuropathy in the fingers! As well as making sure there is great contact all over your head.
For shampoos, I got mine at whole foods- it must be sulphate free and gentle/organic.
GOOD LUCK!
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Jwood and Texas, stick with the protocol and you should be fine. I am 6 weeks PFC. Just had my first hair cut yesterday. I look totally normal. Only my hairdresser could tell that my hair had thinned. I used Avalon Organic Shampoo. I switched to another shampoo and hated how my hair felt so I went back to it. I'm sorry its winter because washing with cool/tepid water is a must and a bit chilly this time of year. But you can do it. Also, use a ketchup squeeze bottle to rinse out the shampoo and conditioner if you want to really baby the hair. That really made a difference for me. Remember to have your helper knead those caps every 10 minutes. I shed so much less after we paid attention to kneading.
Ask any question. There are a lot of us who are happy to answer. And happy to have our hair!! Good luck!!
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I still have hair. I do have what looks like a second part under my hair which is wider at some points than others .... You could call them bald patches but luckily they are under where I part my hair over so hopefully all will still turn out OK. I am also lucky enough to have tons of hair even after losing quite a bit last Spring after another surgery, performed prior to my DX.
I am one of those with a big head so I am thinking these spots are in places we are just not getting the cap tight enough.
My hardwoods are starting to look like shag carpet.... Which I am blaming on our golden doodle, Remington.
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