Cold Caps Users Past and Present, to Save Hair
Comments
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Howard I too am having more stiffness and muscle pain..I am approx 13 weeks PFC. I exercised through out. It seems like I pull muscles easier and they take longer to heal. I cut back on working out to be more gentle with my body. It is perplexing.... I am glad you brought it up. I am experiencing more shedding after chemo than during.
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Hi Ladies: Just an update 5 mo PFC. My hair is doing great. I've been using Loving Care every 3 weeks, graduated from cold to lukewarm wash water, and I lose maybe 10 hairs in the whole wash/comb out process. I still only wash every 5-6 days but my hair was dry to begin with. My hairdresser says every time my hair feels thicker and softer. The new hair seems curlier than before. Still using gentle shampoo but next color will be semi-permanent and then permanent before I travel this summer. My nails are fine, no issues there.
Howard, Sashette and others--not to be a downer but I too started getting bad joints and muscle pain about the second month AFTER chemo. On a joint supplement (Move Free) that helps a little but still enough pain and stiffness that I have to take a lot of Advil. It got worse on Tamoxifen so I had to stop that, but it's still with me. My onc seems perplexed although looking at the boards it seems some lucky people get this, sometimes it gets better but sometimes not. Hoping that time will take care of it and it's not the "new normal"! I'm not the most patient person, but at least...I have hair!
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Lucky60. Congratulations it sounds like you are doing great with your hair!! I am losing closer to 100 hairs a day. I do know 40 to 100 strands is considered 'normal' but, it is heavy for my normal. I like hearing you are only losing 10 a day. Re the joint pain and sore muscles...my oncologist said the 6 month mark is when the chemo side effects that are going to be gone will be gone. Have you heard different.?
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I am so bummed to hear most of you have more shedding after chemo. I was hoping it would settle down....I am still shedding more than pre-chemo by a lot. Pre-chemo I would comb and only lose 4-5 hairs each morning (without washing - just combing it). Now I lose way more. I was hoping to color soon but if it keeps shedding like this I will be scared to even try it. I start Tamoxifen tonight...hoping I have no side effects.....oh joy I can hardly wait! When did you all use the amonia free/peroxide free color post chemo? Was your shedding still going on like mine or back to pre-chemo like shedding? Don't know when to color....
Annie - let me know how the color went....please!
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Mdg. I colored end of week 10 PFC. It was scary. I used the no ammonia no peroxide. My shedding seems fairly consistent. Consistently heavy. It has not gone back to prechemo shedding. I am glad I colored and the color so far has stayed, it has been almost a month.
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In this months June issue of Allure magazine
http://www.allure.com/beauty-trends/health/2011/healthier-hair
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Hi ladies,
Can you believe it's June already?
Re: PFC shedding: yes, be prepared, it lasts quite a while. Much longer than I anticipated -- I think since my chemo was on a 3-week cycle I thought somehow that hair shedding would be on a 3-week cycle too. It's not! It continues, but it WILL slow down. It was obvious to me, PFC, why Frank had a 6-month hair care protocol including many months PFC. Your hair will still be trying to hang on. I did do a light trim of the ends,but no color or harsh hair cut, kept the infrequent cool/tepid hairwashing and gentle combing. I did this routine for about 5 months PFC, thinning, before shedding finally stopped.
Leg/muscle stiffness/soreness/pain: I had this too, as did another PCC user at the time. My doctor was perplexed by it, but my friend and I compared notes and realized what was going on. We had the stiffness in our quads (top of legs) most pronounced. That is one of the largest muscles in the body, and the stiffness/soreness/pain is the expression of the red blood cells not being oxygenated. It's counter-intuitive, but the more you move that muscle the better it will feel. The movement and exercise oxygenates it so it feels better; it feels sore/painful when it lacks oxygen. So, I forced myself to do my daily walk. At the worst, I couldn't hike hills and would be breathless hiking up the 3 flights of stairs to my apartment. It lasted 2-3 weeks, but then I could feel it getting better. It did take a few months to fully recover, but now I only remember that 2-3 weeks, and barely. *It will get better!!!* Just take it one day at a time, one step at a time, and keep positive.
That's why I always push people to keep as active as possible even pre-chemo; it will really help your muscles stay as strong as possible towards the end. They will recover, but you can help the muscles along by gently moving/exercising/walking as appropriate for you. Push your comfort level ever so slightly on a daily basis, then reward yourself with a big ole power nap.
mdg: pm me about tamoxifen if you like, I can give you some pointers on that journey too!
Cheers all,
Susan
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Good morning ladies! Quick update on the color.
I did purchase a couple colors in the Naturtint at Whole Foods (I have blond with ALOT of gray). I also have consulted with an organic hair salon, who has been ready and waiting to color. But they also wanted to highlight, which made me nervous.
Based on this discussion board, I was also obsessed with finding the Clairol Loving Care. For those not aware, Clairol took this off the market a few years ago. It is a temporary hair color and last 6-12 washes. The problem is that it is no longer on the shelves...though I found one lonely box on the shelf of an old family owned drugstore. I bought it, even though it was for "beige blonds" and I am more ash. Anyway, that is what I used yesterday and it looks great. My hair looks more evenly colored, smoother, etc. I had a typical shedding that I would have when I washed my hair. By the way, it is simply one bottle that you put in your hair, wash out and condition with a little pack of conditioner that they provide. It goes on 20-40 minutes, I went 25 minutes.
So, today I woke up. I still have hair. Normal shedding - I am now brushing with a normal (pre-chemo brush). All is well. Sooo glad I did it. I did get compliments from my family and close friends, so I guess it was a noticeable change.
Gotta run to have a MUGA - heart scan. Email me if you have any questions!
Best wishes to all of you!
Annie
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Yeh Annie: Glad the color went so well. You must feel great.
Ah, the fun of the MUGA. Good luck.
Arlene
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Annie: So glad the color worked out so well....I am jealous! I just washed and the shed was bad today. UGH. It took forever to try to cover the roots with colormark to try and look presentable. I can't wait to color......sigh
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Wow, ladies, if my shed after chemo is bad, I'll be wig bound. I still have plenty on the top but the back is pretty darn thin. Oh, well, it is what it is.
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ArleneA: when will you be finished treatment? I wish you all the best! I'm sure your hair will do fine! I completely understand the worry. I'm nervously waiting days 18-24 after my first tx for major shed. I did wash my hair early this week and it did shed quite a lot.
Fyi Cold Cap Users, when I spoke with frank prior to starting tx, he wanted me to start taking silica to help the follicles. I have been using in the way of drop form. I add it to my drink containing l glutamine daily. Another supplement I add to the drink is msm in powder form, it also helps hair, skin and nails. It apparently keeps the hair in the angen phase longer which is the growing phase.0 -
Hi DebRox:
I'll know Monday if the onc ends me at 4 or 6. If 4, then I'll be finished on Monday. My onc told me if I could go back on Herceptin then she'd stop me at 4 and I'll begin the Herceptin again on Monday's treatment but I have a feeling she will now question her decision.
Chemo #1 was by far the worst shed I had and I filled a gallon bag with hair during that washing and haven't had any major shedding since that time but definitely shedding. That shedding is the one that took so much from the back.
You seem to be doing great DebRox.
I'll have to pick up some silica and start taking it. Thanks for the suggestion.
Arlene
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Hey Arlene: Don't give up hope--I lost a lot of hair like you during chemo, and I'm guessing my shedding ending earlier than some (2-3 mo out) because most of the weak follicles and ones that didn't get cold had already given up. The strong ones and those that had the best cap coverage survived! So, hoping you're in that boat and your shedding will slow after chemo. I waited to use the Loving Care til the shedding slowed down about 2 months out. At 5 mo out, I find a hair on my clothes more like once a week instead of once a minute it seemed during chemo! :-)
I think some have colored successfully with Naturtint but it DOES have peroxide, as does Clairol's Natural Instincts. Don't be fooled by "ammonia free" or the "natural" word! There are still a few places online to find the Clairol Loving Care (Amazon for one), and Sally's Beauty Supply has a Clairol product w/o peroxide as well--it's called Clairol Beautiful. Try to keep it off your roots just in case--I had my hairdresser put it on w/ foils to make sure nothing got on my scalp. Good luck!
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Thanks Lucky for the pep talk. Fortunately, I don't have to worry about the coloring but I really want to trim my hair and might do that a month or so after I finish chemo.
Arlene
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I used the Clairol Beautiful. Easy to apply. My color has stayed surprisingly well and it covered the grey.
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Hi all,
For all you past cold cap users, I am 4 weeks out of final chemo, shedding is still heavy, I have a huge bald spot on top and very thin every where else, I was wondering if even though you shed after chemo does your hair still grow and fill in while it is still shedding, especially if shedding can go on for 5 months?
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Hi LeeAnn:
If I remember right, you were using the caps and quit? I hate to say it but in so many ways, it would have been easier to have just shaved early on; although, I am happy that I still have hair and will be having #4 on Monday. I have a friend who didn't use the caps and her hair started growing back during chemo and she no longer needs a wig. Seems those girls do ok BUT I am happy I used the caps and believe it or not but I have new peach fuzz in the areas where the caps weren't cold enough.
Anxious to see what responses you receive.
Arlene
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Leeann56- I am five months out of chemo. I think I lost about 2/3 of my hair. It was thin, but doable. I continued to shed for a little over three months post chemo. I thought it looked quite thin right after chemo, but I don't think, in the end, it ever looked any thinner than that even though I continued to shed for a few more months.
Just a side note- before chemo I had some natural curl, but just enough that gave it body and thickness when blown dry. The suprise at this point is that the hair that stayed in is quite curly and the new stuff coming in is even curlier. There is no style other than to go curly, which is a whole new experience for me. Not sure if I like it, but it's all mine.
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howard-
What should the letter say that we send to insurance company? Are we pleading our case for using these cold caps? Are we coming from just an explanation of what they are? I am wondering which way to go on mine. A sample would be great, if you don't mind- maybe PM me if you prefer.
Thanks anyone else, also, if anyone else might know what would be the best approach. Also, what am I asking Frank for? Just the bills? The write up of his experience/research with development of them? Also, Where do we put the code. My doctor actually wrote a prescription (finally) so do I write it one that?
More questions:
Do we also include the other expenses, such as buying the ice chests, thermometers, etc, and the ice? Would that help, complicate, or hinder our cause? Do we send before and after pictures of our hair to prove it worked - or is that relevant?
I have more questions but cannot remember them at present....ANything would be helpful~
thanks, Elizabeth
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Hi everyone. I was diagnosed on May 4th and had a double mastectomy w/ reconstruction on May 16. I start chemo this coming Thursday and plan to use the Penguin Cold Caps. I have long thick hair and am desperate to save it. My sister is going to be my helper but I'm very nervous about the whole thing. Having to work with dry ice and two big coolers is a bit overwhelming. I'm also feeling like the nurses are going to be judging me as nobody believes that the caps will actually work.
I'm wondering if I should take prenatal vitamins as those are supposed to help your hair grow. Also, did anyone use Nioxin as their shampoo? I have a friend that is a hairstylist that is willing to wash my hair every 4 days. Would that be better than washing it myself in the shower?
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swright: I just sent you a PM. I can send you my write-up. Very important to stop using deodorant with aluminum right away (when it is absorbed it creates a bonding agent at the hair follicle and can actually trap chemo there). Also, begin hydrating now -- drink lots of water -- to help get your liver in shape. And cut caffeine and alcohol as much as you can (you'll be cutting those once you begin chemo anyway). Check with your nurses on vitamin dos/don'ts during chemo. Silica is what Frank recommends.
Julia1969: That curl happened to my hair also. It was already curly/wavy, but now it is super-curly (the existing hair) and the incoming is ringlets! Even though it's growing out and I've had a couple of cuts and trims, it's getting curlier and curlier. And because the curls are so tight, they're kind of dense and make my head hot! I'm not complaining!
Susan
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Swright: Hey neighbor! (I am in metro Detroit!). I too have long brown hair. I finished 4 rounds of Taxotere and Cytoxan May 4th. Posted photos several pages back around that time here on the thread (so you can look back if you want and see my hair). I have been complaining of the shedding bur quite honestly NO ONE notices a difference in my hair. My BFF lives out of state. She was here after my MX to take care of me in Jan. She came back for my last chemo on 5/4 and could not notice a difference in my hair at all. She helped me with the caps that day so she saw everything (including my roots and could not believe my hair grew that much during chemo!). She came back this weekend and said Friday night "It's amazing you kept all your hair...I have been studying it all night and can't tell you lost anything". She's super honest so she would tell me the truth....she said it looks great. I notice that the day I was and day after it looks pretty good (a little frizzy since I can't style exactly how I use to) but then after day 2 it gets kind of clumpy/scraggly looking. At that point I ususally put in some hair extensions to thicken the bottom up as it just looks a little thin to ME. I desperately need a trim as my hair has grown at least 1 1/2 inches since I started chemo and I think because my hair is long (down to my bra in the back) those ends are what makes it look scraggly. Once I get those trimmed I am confident it will look much better. I plan to call my hair dresser and see if I can get in this coming week to get a trim. I am not going to get too much off because it is not recommeneded at this time, but at least an inch to neaten it up. As far as washing....I washed once a week since the week before chemo. I thought I would just wash twice a week too but once it started shedding I got too nervous as it seems more hair comes out when I wash. I would rather have dirty hair and more hair than clean hair and less hair.....so I still wash once a week. I exercise 5 days a week and sweat. It seems like you hair really adjusts because it is not as greasy as it was the first few weeks at all. The first few days after a wash I can wear it down in a thin, soft, elastic headband. By day 3 or 4 it look scraggly so I put it back in a loose pony tail. By the end of the week I may have it clipped up loosely with a pincher like hair clip. I make due. I have even sported a stylish lightweight hat the last day or two only when I run out for errands if I don't feel like dealing with it. I have been OK with it. Just know that people in my med onc office were also skeptical. The odd thing is my office actually has a freezer and supplies the caps onsight. I was told by the chemo nurse when I told her I was doing the caps "just be prepared...they don't work for everyone and many patients just give up during chemo and lose their hair anyway". When I mentioned them to my doc she said "they work on about 50% of people" which is not accurate if they are done properly. I thought I would find more support in their office since they have the caps.....but didn't. Don't worry about those negative people. They will work if you follow the protocol! I am really happy I did it and love having hair. I feel completely normal and no one knows I have BC or did chemo. I saw my internist a few weeks ago and she has had 3 other patients use them with success...she knew about them and thought my hair looked great. Be positive. You can do this and you will do this!!! How many chemo's do you have and what kind?
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Leeann56: Mine started growing in where I first lost it (around ears) about a week after my last chemo, even though I was still shedding. Then the back underneath layer. I had a thin spot on top too and that started growing in a little later. With me, the hair I lost first, grew in first. Makes sense I guess. I still (5 mo PFC) have new hairs coming in along my front hairline that I didn't know I even lost. And it's curlier in some spots. I think I'm gonna be a Yeti soon, but I'll never complain about my thick hair again! Lucky
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Lucky: You crack me up with the Yeti comment but I bet you are so happy to have the hair coming back in.
Today is steroid day in preparation for #4 tomorrow.
Hair has been shedding a lot the past few days but I am at Day 24 post #3. My schedule was changed to so I'm more than the 21 days.
Arlene
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In the Sunday paper and on the news tonight they were talking about using aromatase inhibitors like Arimidex, Femara and Aromasin to prevent recurrences in breast cancer patients who are past menopause. This would be used as a replacement for tamoxifen and raloxifene because those have more side effects and therefore the new drug may be safer. There is also a mention of giving radiation to the armpit, not just the breast, after surgery in women who have had their cancer spread to the lymph nodes.
I have a new sense of calm since my doctors have me on that newer after treatment drug and I did have my lymph nodes radiated. Yeah!
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Thanks for the information Julia. I'll be on the Arimidex too. I have a friend who is post-menopausal and they are putting her on Tamoxifen which I find odd but this is all so new to me. She wasn't IDC and didn't go through chemo but just radiation so that could be why the Tamoxifen.
Arlene
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Hi all,
I too am post chemo-61/2 weeks. I also have curly hair now, it used to have a little wave. I'm not sure the change in hair is because of chemo or cancer. I know of 2 or 3 people who did not have chemo, but had cancer and their hair changed from straight to curly too!! I wonder if we could check that out?
I have had a trim, but not done color yet. I think i will do color in 1-1/2 more weeks, that will put me at 8 weeks or 2 months past chemo. What is the best not chemical color to use? I washed my hair yesterday--am still doing once a week washing and really don't need more, my hair is very dry-it used to be oilier, but chemo dried it out.
I showed my sister-in-law what I shed after washing and she said she sheds much more when she washes her hair. I think we just obsess a bit about our hair shedding.
I have had 4 radiation treatments last week. Really it takes a few seconds to do the treatment. The total time from arrival to leaving is about 15 minutes, and that includes undressing and dressing time as well. A real "walk in the park" after chemo and cold caps!!!
Keep Positive and Keep Laughing!
Nancy
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So are all of you a month or longer PFC still shedding a lot? I swear I feel hair hanging on my arms all the time and it's hair falling out. I swear multiple times a day I lose several strands just hanging down tickling my arms. Ugh! I thought after chemo it would settle...kind of seems worse. I am still to afraid to color it but am in desperate need of color.
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HI Maria - I am 6 weeks PFC. I do not feel like I am shedding much at all...now. I think the type of chemo you had made you shed at about day 25+, right? So, maybe you are still seeing that post chemo shed, whereas I shed at day 14-18 and am now 42 days out. It may be stretched out a little more for you based on your chemo type. Just thinking....
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