Cold Caps Users Past and Present, to Save Hair
Comments
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Here's another product line: www.yumskincare.com
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Here's another product line: www.yumskincare.com
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Hi All,
I haven't posted for many months. I did chemo summer 2010 with caps, then lumpectomy in Sept and radiation Oct-Dec. Today I had my 6 month mamo/3 month onc visit and I'm still dancing with NED.
My hair has really filled in. People are amazed. I had great support at USC/Norris for using the caps.
Colleen
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just checking in I'm 9 weeks PFC- hair shedding is almost normal, maybe 8-10 a day. I don't have much "real" hair left, but the new hair is finally growing and my hope is that i will have full coverage by Dec 15th. I have 4 more rounds of radiation then will be done. I spoke with my RO and she said i could do a mammo in a couple months if I wanted but that waiting till May would be just fine. Waiting?? after all of this? Who can have peace of mind waiting
Just trying to take each day at a time. I've suffered lots of foot pain in the last couple months so I can not workout or walk. Standing at work just wears me out. One of these days all these side effects will be gone and I'll be 100% again, just with shorter hair 0 -
Maria - i'm looking for information on how Beaumont runs their cold cap program. What they have? how much they charge? if they promote it? What their guidelines are? which patients can use them, etc? Would you consider emailing me directly? pbmady@cogeco.ca. Thanks!!0
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After months of dealing with cold caps, here are my two cents. Penguin Cold caps helped me save about 20% of my long hair on Adriamycin/Cytoxan. Not enough to keep me from having to cut it dramatically shorter, and I definitely had to wear a hat. I finally chopped it all to about an inch long to match the regrowth. That regrowth came in much more quickly than "normal" and it was thick, glossy, and curly like normal hair, never fuzzy or frizzy. (My normal hair is thick, glossy, and straight.) I never had the horror of seeing my bare scalp or going through that awkward "duckling fuzz" phase people describe.
Now, several months later, those same cold caps have saved 100% of my now 3" hair through four rounds of Taxotere. Definitely worth the money and excruciating pain (!) for the Taxotere. If I had to do it over, I would have skipped them for the A/C though.
Good luck to all my beautiful sisters - with or without hair!
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Livcar: I will email you.
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Windlass: While I never lost my hair completely, it thinned a lot and I got it chopped off a few weeks ago. It is getting nice and thick again and I actually really love my new bob. It is so easy...wash and wear hair that used to take 90 minutes just to dry. May not go back to long hair!
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My Penguin caps have arrived. So far all I have done is kick the box every time I go by which pleases me for some reason. It seems every day there is a new physical reminder of my BC.
I'm doing TCH X 4 starting next Wednesday. My oncologist and the Penguin rep have both told me they have had good outcomes using the caps with that treatment protocol. I have a friend lined up to practice with me and help me the day of.
Couple of questions:
1. Is there a way to goof this up? What are the things I need to be most worried about? I don't understand the timing issues which I guess depend on whether the "chemo girls" get the drugs to you at the right time? PLEASE HELP.
2. Is there a certain shampoo or kind of shampoo I should use?
3. I gather I should plan on NOT coloring my hair during treatment (3 months) and for some time afterwards (how long?). I color my mousy brown and grey hair to a medium blond. Since the poitn of this is to feel somewhat normal, I don't think 2 inch mousy brown and grey roots are going to work. I have an appointment with my colorist on Tuesday and am thinking of having it died a lightish brown or something approaching the real color although I don't know what that is! Any ideas?
I know a lot of that info is on this thread somewhere but I'm too paniced to read through the whole thing so if anyone could help me I'll be so grateful!
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LadyGrey~
I seem to remember Frank told me not to color my hair before treatment? Maybe some of the others can chime in on this since I used them about 2 years ago...
I did TCH X 6 and they worked great for me.
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TheLadyGrey, You should have received a booklet of instructions on the caps, maybe they are inside the box? I think mine were included in an email. The main thing is to get the cap on quickly each time. Make sure it is as cold as they told you to have it. Make sure the bands keep the cap down on your head with no spots not touching your head. Talk with the nurse to make sure she can start your chemo drugs 50 minutes after the first cap and that there won't be any gaps in between the T and the C, as you only have enough caps to last throughout the pre-cool, actual chemo, and the 4 hours after. I am using DermOrganic shampoo and conditioner, recommended by other PCC users. I am not sure you should color right before starting chemo. Hopefully someone else will advise you on this. If you can line up at least 2 people to help with the caps, it really helps, but I know that a lot of people only have 1 helper and do fine. Good luck!
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LadyGray: I told my chemo nurse when I needed her to start the drip and my DH gave her a 5 min warning. They were really good about working with us and the timing.
I can't recommend a specific kind of shampoo as the PCC people know best but I used an organic chemical free shampoo with no sulfates or parabens. I also used a conditioner and avoided getting it on my roots.
I colored my hair about 11 days before my first chemo....which was probably not what PCC's would recommend. I did not color again until about 5 weeks PFC. During chemo I used Colormark on my roots. Having your hair colored similar to your natural color will make the roots less noticeable I would think. I wished I had done that. The colormark is not the best but it does the trick. I also invested in a few cute hats for days where I just didn't want to deal with my roots.
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TheLadyGrey: If you send me your email address, I'll send you my write-up about using the caps, the dry ice method, hair care protocol, etc.
Best,
Susan
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Anyone know of an organic color depositing shampoo- no parabens, sulfates? Safe to use during chemo and PCC? The dark, grey streaked roots are not a good look!
Also - any tips for having hair trimmed? Can't have hair washed normally, can't style or blow dry.
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rik: I think you are just going to have to tough it out like the rest of us did...it will be worth it; however, others might have color suggestions that might be ok but since I don't color, I don't have any input there.
I'm 5-1/2 months PFC and loving the new shorter hair. I get so many compliments on it from folks who didn't know me before chemo and don't know I went through chemo and it is so nice and thick. The caps were SO worth it. I don't wash in ice cold water any longer but still rinse in ice cold water but I did that before chemo too.
Hang in there newbies...you'll get through this and be thankful you suffered through all the cold washes, scraggley hair, etc.
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RIk Aveda has a color deposit shampoo. Each person is so different, if you don't shed a lot and hair feels secure a small trim seems ok.
I wish I used a better conditioner during chemo. I kept almost 90% of my hair. I did condition the ends each day but only washed once a week. I did not do anything to pull on my hair nor did I use a hair dryer during chemo. This Thursday I will be 8 weeks post PCC. My shedding is normal now! I have had my hair trimmed three times since my last chemo 9/22 and today I cut a little more. It feels so much better.
I recommend a few products that have brought my hair back to life: Carole's Daughter Hair Repair, Paul Mitchel Keratin Shampoo and Conditioner and Maxi Hair Vitamines from Country Life. These products are sulfate free and paraben free. I am blow drying and flat ironing my bangs and using a diffuser to dry the rest. My hair is a little past my shoulders. I am deep conditioning my hair everyday for 30 minutes to an hour. I leave it in a shower cap with the treatment on it. I am hoping to color hair in Decemeber. I have dark blond hair but have lightened it three shades blonder. I think I will go a little darker but if my hair is damaged when I color it, it will look really dark. I have not noticed new growth yet, but know that the hair I lost will soon make a comeback.
These caps do work! I am so grateful! Ladies just starting out, you will be on the other side soon.
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Not to be a downer, but I'm not sure I'd say they worked for me. At least not with A/C. (Adriamycin/Cytoxan)
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So sorry Windlass. Guess everyone doesn't have success with the caps. The saving grave is that the hair does grow back quickly.
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It's working like a charm with Taxotere. I just didn't want to give false hope to people about using them with AC. And yes, it is growing back very fast, and thick, too.
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windlass, Did you use Penguin Cold Caps?0
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Windlass: i am sorry the caps didn't work well with AC. There needs to more disclosure about cold caps sucess rate and AC.
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Yes, I used Penguin Cold Caps. They are 100% awesome with Taxotere. Didn't lose even one hair (not even normal "shedding"). But AC was another matter. I had long straight thick hair halfway down my back, and when I was done, I looked like these guys:
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It has been a long time since I used the PCC's but I used them with A/C and I only lost about 30-35% of my hair and the hair I did lose was along the hairline so it was not that noticeable. My treatments were from Dec. 09 to April 10 and I didn't tell anyone (minus a select few) at work that I was going through chemo. I worked throughout the treatments and at the end when I needed to be out for about a month for the surgery, I announced it and everybody could not believe how good my hair looked for going through what I went through. I realize that it doesn't work for everyone, but I am so glad I tried them!
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Windlass: at least you've maintained your sense of humor.
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For those of you that had dryer/frizzy hair, what hair care products are you using PFC and post shedding? I finished chemo in May and my hair is super frizzy and dryer than it was before chemo now. The new growth is about 2 inches long and out of control a bit....standing up and curling odd. I am trying to avoid bad chemicals on my hair and use shampoo, conditioner and styling products that don't have any bad stuff in them. Does anyone have any styling products they can recommend for the frizzy hair with crazy chemo curls coming in too? I need something to tame this mane! I am ready to get my long hair chopped off...feeling so ugly these days. Ick! I am glad to have hair but sick of it looking like crap! Now because of the chemo curls growing in it even looks like crap when I wear it in a ponytail.
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Maria: I have the chemo curls too but they don't look so bad and I get a lot of good comments on them...but they are mainly in the back by the base of my neck where the caps didn't reach and I did chop my hair to this length and I'm actually loving it. It is so, so easy and my hair is healthy...even the 'old' hair. I'm NOT suggesting you chop yours because from all your pictures, your hair looks wonderful!
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Maria: the Carol's Daughter Hair Repair is amazing! My hair felt so weird after chemo I had to cut a couple of inches. The Paul Mitchel Awapuhi Keratin Conditioner and shampoo are excellent! All of these products are paraben, sulfate free and environmentally safe, but not certified organic. Nauturalycurly.com ranks all products and you can search for organic. I am currently deep conditioning my hair while I write this message. I put the conditioner in my hair and sit with on for 30 min to an hour and put shower cap on. I use Argan oil on the ends when I go the sleep. Now that I have cut the dead ends off, my hair is responding to the treatments. I don't have new growth that I have noticed. I will be 8 weeks post pcc this Thursday. I plan to trim the ends every month to get rid of the old hair, just a little next time because my hair is a little past my shoulders.
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Products for styling: Ojon Dry Recovery Moisture Mist( leave in cond) and Jane Carter Curling Cream( organic) and Paul Mitchel Shine Spray
I am wearing my hair curly and avoiding heat for a little longer except for my bangs.
These products are pricey and I would call to get samples. I bet if you call and tell them your situation they will hook you up.
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Arlene: How long did it take the old hair to feel healthy again? My hair feels much better since cutting it and treating it. I am going through raditation and get herceptin every three weeks. Did this affect your hair at all? How long did it take before you noticed new growth and is it the same color?
Eyelash report: I have lost more lashes on left side. The ones I have are super long because of the latisse. It looks very funny!
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Soccergirl: Lets see, I'm almost 6 months PFC and my new hair started growing back during chemo. The old hair never really got too bad and the new hair is just weird, weird with all the chemo curls but healthy. I'm going to get either the Paul Mitchell or Aveda products too. I do notice that my hair seems to get greasier now than before and I could almost wash every day but I hold off for at least 3 days. Color is darker (used to be strawberry blonde) and appears a reddish brown.
Radiation didn't seem to impact anything and neither is the Herceptin. Now I've heard darn hormone killer pills can affect the hair but thus far not nothing too much from that either. But those pills are tough on the skin!
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