Cold Caps Users Past and Present, to Save Hair
Comments
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Hey LeesaAnn~
I don't know if you feel like eating during chemo but we would bring a thermos of hot soup and it really helped me.
(I also drank hot Ginger Tea, but I cannot drink that anymore now that I seem to associate it with chemo...)
Hang in there!
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I'm not allowed to bring hot foods in the chemo area, but I bet I could have hot tea. That would be an excellent thing, definitely! Thanks for the suggestion!
I'm tired and ready for bed, thank you everyone for your support, its invaluable, and means so much!
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Hi all and especially the new ladies. You are going to make it through all this and it won't be long that you'll be laughing (and grumbling at times) with the new wings of hair that are all over the place. They are out of control most days.
I thought I'd never get through this either and still doing my Herceptin! Passed the halfway mark with it though so there is an end there too. Have my 3 month MUGA next week. Did a half marathon on Sunday so I'm assuming my MUGA will be just fine.
Good luck and hang in there everyone!
Arlene
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LeesaAnn: I hope you feel OK in the coming days. Get some rest girl! I also wanted to say I could not have done the cold caps without the electric blanket. I wore it the whole time and was not cold at all. I also dressed in layers. The ativan didn't make me tired...the benedryl did though. I am glad you got one under your belt. Only a few more to go!
Also for those of you coloring hair PFC...Tiki suggested Naturtint hair color because it has less chemicals than many other products. I tried it today and it covered my grays really good. My hair feels great other than being a little thin. I will definately use it again...loved the results. I think I am ready for a new hair style....going to get my hair cut. I am calling tomorrow to schedule an appointment. I am 7 mo's PFC. I will post a photo after I get my new dew!
For those of you just starting out...it's a long road but worth it. Hang in there....you will get through it with hair!! Hugs!
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LeesaAnn: Congratulations, one down and now you are a pro! Hydrate like crazy for the next three days and stay as active as you can, detox that stuff out of your system to minimize SEs. Congratulations to your fantastic helpers. They really *are* helping you kick cancer's ass!
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LeesaAnn, That first time really is quite an experience, overwhelming for all! Don't worry though, it really does get so much easier, I promise.0
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Ditto....first one is the worst..IMHO it's the unknown that causes so much anxiety...after that it does get easier... After TX#2...with hair....you sort of know "the program".... Ditto also tons of water...helps so much....also in this giving season...so much appreciation goes out to our helpers.. I could not have survived without mine.....they will and do hold such a special place in my heart. I sometimes forget how truly thankful I am to be here and have such a great circle....WITH hair....smiles
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hair update: I called my colorist and he said he coud test highlights by placing a few underneath my hair and see how the hair responds. Ladies who are not sure if they are ready for professional color, ask your colorist to do this. I am done shedding but not convinced I i am back to normal. I will put in a few at a time and see how it turns out. I will do this 3 months mark.
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Hi all! I am done with my chemo!!! Yay!!! I will be calling Frank Fronda to return 8 caps ... 4 AC and 12 Taxol are a very long road!!! I followed protocol to a "T" during AC and I lost 85% of my hair after AC. During AC I shed everyday the whole time. By then I hated the Cold Caps, so during Taxol I created my own "protocol" in order to survive:
- 1. I wore the caps just during infusion. No more than 3 hrs,
- 2. During AC, I literally looked like a Cabbage Path...The caps where so tight and cold. During 12 weeks on Taxol I never tightened the caps under my chin again and I stopped using the black and yellow velcro straps. The caps were barely touching my scalp (I also wore a silk scarf between my hair and the caps). The caps were just -28 C, because by then the excruciating pain was not worth it anymore.
- 3. Cold water gave me headaches, so I washed my hair with water at room temperature (sometimes a little warmer).
- 4. Since I developed crusts in my scalp, I added 2 drops of vinegar to my shampoo and I gave a good wash once a week to my scalp (I massaged it truly twice). Problem solved.
- 5. I wore a hair extension with clips to cover the bald spots and give my head more bulk.
Well, after my 2nd Taxol I stopped shedding and my hair started growing back. I have not shed hair since then and my head has been completely covered since my 6th Taxol with a lot of straight hair. Not fuzzy, not curly, not thin... just weird looking... weird (better than starting bald). I will post some photos later.
I need to remember that I was on hard core chemo and prolonged, a total of 16 treatments, so I feel lucky to be able to have some hair so no complaining from me, but I still wonder if the Cold Caps made the difference, because as I said I did not follow protocol during Taxol AT ALL and my results are pretty much the same (or better) than most woman on Taxol which normally keep shedding after treatment. I am planning to cut my hair (to match the regrowth) and color it in 15 days, so I will let you know what happens. By now, I am still in "trial" stage with my own "protocol". Good luck to all!!!
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Way to go Ralston!!
I will write more later as my 6 year old is home sick today...
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Congrats Ralston. Glad you are finished and found your own routine for the caps. Time to start living again.
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Also, I figured out what the build up on the scalp is from. We are instructed to use sulfate free shampoo during chemo and for a period of time after. We are allowed to use leave-in conditioner. Most leave in conditioners have silicones in them. For example, dimethicone is one. Sulfate free shampoos are not strong enough to wash out the silicones in the hair products. If you are going through chemo and having a heavy build up on the scalp, try to find products w/out silicones in them. Naturallycurly.com will let you search to find good products.
Vinegar can clarify your scalp naturally. It is a good idea to add it your shampoo if you are having scalp issues. Trader Joes has a clarifying shampoo that is sulfate free and paraben free. It might be a good to use two different shampoos to avoid the heavy build up on the scalp.
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Soccergirl, thanks for the info about Sulfate and Paraben free products. I get to have my first wash tomorrow. I went out to day in search of products. WOW! Expensive! I went to Ulta 3, which may of been my mistake. The 'Professional' lines were upwards of $35 per bottle. A marketing gimick to be sure to leave out sulfate and parabens, to create a higher price point. I will go to Trader Joes and search for the clarifying shampoo you mentioned, surely its less expensive.
Does anyone make their own shampoo? I'm thinking of doing this.
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The Traders Joes is much cheaper! I have a half bottle of the Pure Results by Regis shampoo and conditioner left. If you want, I can send you the products. They are expensive but are highly recommended from past users.
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Day 15 post first Taxotere/carboplatin/Herceptin.
The hair that is sort of in front of the top of my ear is falling out and some along different parts of my hairline, but so far the rest seems firmly anchored.
I about threw up when I unconsciously scratched or something and came away with a handful of hair. You can't FEEL it when it separates from the scalp. Freak out time.
Hopefully that means that the majority of the rest of the hair is sticking around.
Next treatment Monday. The stress of this never ends. I guess if nothing dramatic happens hair wise between now and then I can have some confidence in the caps and that may help the anxiety. I dunno....EVERYTHING about this has been worse than I was led to believe. I'm scared to be hopeful.0 -
LeesaAnn, You will be amazed at how long a bottle of shampoo lasts when you are limiting your hair washing. Even if you spend a lot, you probably won't have to buy anymore.
TheLadyGrey,The stress will lessen considerably as you go. Cap changing will go much more smoothly and your anxiety will start to fade as you see that you are keeping your hair. Hang in there
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Today was my first hair wash, oh how wonderful to have clean hair again!! I used a sulfate, paraben free product. Ended up 'washing' twice because my hair was SO oily. Don't know if this is against the rules, but I was determined to have fully clean hair again, lol. I was gentle, no hard scrubbing and used temped water. Used cold air setting on hair dryer to dry the hair around my face, left the rest to air dry. Doesn't look half bad, I'm pleased to find.
Is it safe for me to wash at least twice a week?
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GreyILady and LeesaAnn: I know it doesn't seem like it, but you'll get through this. I probably LOST 70% of my hair but never went bald, never needed wigs or scarves and months after chemo (last TX was 6/6/11) and in early October, I chopped my hair off short to get rid of all the different lengths and I love it and may not go back to long hair.
It is stressing though but you'll keep your hair and do fine. I've only seen a few here completely lose their hair.
You'll do fine!
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Arlene: congrats on completing your half marathon! I have a question about the new growth. I am 10 weeks post pcc. I cut three plus inches off the length because it didn't look healthy. I am not shedding any more and wash hair three times a week in warm water and condition everyday. I am noticing new growth on my head especially on the sides where I lost most of the hair. My hair line is filling in. Also, I love my natural color which haven't seen for years! I am shaving my legs every other day but have no armpit hair yet. Hair down south is back, but it is fine. I am assuming the hair is not roaring back yet because I have no armpit hair?
How fast is your hair growing and how long is it now?
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Ralston: congrats!!!!!
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Soccergirl: I understand from others here that it takes nearly a year for the underarm hair, especially the side you had nodes removed. My hair is back on the non-node side but the side I had nodes removed still hasn't started coming back. Everyone grows at a different rate. I wouldn't say my hair is roaring back but it is coming back at a normal rate and like you around the ears and the nape of the neck where the caps didn't reach is all new hair and has my old reddish color and the chemo curl (my hair is kinky) so I'm really liking the chemo curl as everyone loves it and talks about my cute curls. It does look pretty cute. If I can figure out how to post pics, I'll try to get some.
I'm thinking since I'm triple positive and on the nasty old hormone pill for 5 years that it might be impacting the growth and also I'm on Herceptin for another 6 months so I think that slows things down too.
Arlene
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Thanks Arlene! It is such new and uncharted territory. I am so glad you are liking your hair short and the chemo curls. Was your hair curly before? You have so much hair in your picture! I can't tell if your hair was curly before chemo.
I can't tell if my new hair is curly because it is so short. My hair before chemo was fine and curly, not frizzy. The color is pretty but Half my hair is dark golden blond and the other half is light light blond. I wear cute hats until I color. I am so grateful to have hair, but find myself obsessed with it!
I have herceptin too. I finish radiation Tuesday. Almost done!
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Soccergirl: What am I missing? You are Her- so why are you doing Herceptin? I don't know much about all this but thought only Her positive get Herceptin.
Yes, my hair was very frizzy before chemo but was living in the west back then and the drier climate helped straighten it.
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My pathology changed after I was diagnosed. The biopsy and the lumpectomy results were different. I didn't update my info. I am estrogen positive, progesterone negative, and her-2 equivocal. I had a hard time finding the right oncologist to treat my cancer! Luckily, I found the best!!!
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My pathology changed after I was diagnosed. The biopsy and the lumpectomy results were different. I didn't update my info. I am estrogen positive, progesterone negative, and her-2 equivocal. I had a hard time finding the right oncologist to treat my cancer! Luckily, I found the best!!!
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Hey ladies. This coming week will be 1 year since I was diagnosed. It will be 7 months since I finished chemo too. I am finishing out the year of BC crap with my last surgery this coming Friday too! ( I am getting nipples for Christmas this year
. I wanted to post a photo of my new hair! I finanlly bit the bullet and went to a salon and asked for a miracle from my new hair stylist! I found a great organic salon and the hair stylist was awesome. She helped me figure out what to do with my hair since it is about 40% thinner than pre chemo and I have about 2 inches of growth all around my hairline, temples, nape of neck and side burns. I got it chopped off to a bob cut. She blended some bangs to mix with my new growth in the front. The good news is that it no longer looks thin and I don't have to wear hair extensions anymore! I have not had hair this short in years, but I think I like it. I am missing my pony tail though a little. Here is a photo.
For those of you just starting out....Cold Caps do work for a lot of people. Here I am with my hair
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Maria...you look great.... I feel like I've gone on your journey with you...I'm 11 months PFC....my year is next month!
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I love it Maria and I think even better than the long photos. Beautiful. Mine is WAY shorter than yours but I have hair and for that I am thankful. I'll be a year end of December since diagnosis and have my mamo and ultrasound next week and am really nervous about that and wondering if it will hurt since my breast is still very sensitive.
Soccergirl: Now I understand.
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Maria: I *love* your new cut! It is very becoming on you, looks just great. I hope you are getting lots of compliments on it!
I am 1.5 years PFC and my hair this weekend looked almost normal, chemo-curl wise. For those tracking the PFC regrowth, here's how mine worked (everybody is different):
During chemo with PCCs I lost hair at nape and a little above ears and along hairline (but not noticeable so much) and a little thinning all over. I lost 10% of my hair max including PFC shedding. The hairline/nape actually began regrowing while I was still going through chemo. It came roaring back around the time my shedding stopped, seemed to grow a good inch every few weeks. I had some pretty hilarious wings around Dec. 2010 -- kind of a pipi longstocking look if left untended :-) -- and got lots of super-kinky curls with the new regrowth. I kept my hair long throughout regrowth, and had the new growth layered in as it reached various stages. It is now about where it was when I was first DXd 2 years ago.
Leg hair began growing back pretty quickly after chemo ended, unfortunately. Underarms took longer, and treatment underarm took about 7-8 months post-rads. Now I have to shave my legs EVERY day, sometimes more, but it seems like it's normalizing. Down south came back better than ever. Brows fell out about 3 weeks PFC but came back within 2 weeks, only had a bit of thinning with lashes and they didn't regrow totally but I never did without. I wear mascara now whereas I didn't before.
During chemo it was mostly my grey hair that fell out, which was nice -- I just have a couple of strands now. I usually have lots of natural highlights and maybe it was my eyes but it looked like they went away during chemo, but now have come back. Maybe I'm imagining, or maybe certain colors (red, blond, copper) in my brown fell out more than others? Not sure.
My hair has been incredibly curly and quite cute PFC, and continues to grow quickly. Now the new hair coming in is my regular wavy hair, rather than chemo-curls. Yesterday I looked in the mirror and the curls had grown out enough with my normal-wavy hair behind them, so just the ends are curly.
The exciting thing for me is that all my hair is long enough that I can wear my hair in a pony tail. I get to attend the Nobel Prize ceremonies this year, and at two events ball gowns are required, and I will be able to wear my hair in an up-do. I am so grateful to have my hair for this amazing once-in-a-lifetime event.
ArleneA: I still have soreness and tenderness but the techs have been fantastic. And hearing the "all clear" is well worth it.
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Maria: I love the look! Nipples for xmas sounds very exciting!
Susan: Thanks for the detailed update about the regrowth. I am 10 weeks post pcc and everyday I notice more growth! It is very wonderful. Question: does the old hair grow as fast as the new hair? How exciting to attened the Nobel Peace Prize cermonies!
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