Cold Caps Users Past and Present, to Save Hair
Comments
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I just finished #3 and continue to shed. No bald spots but lots of thinning.....I think those of us with thick hair shed significantly and it for sure freaks me out. I considered a wig but do not need it to go back to work. Just purchased a halo piece off of the cancer wig website. I have hair on top but thinned alot underneath. I figured I could try it....maybe put it under where all my thinning has occurred and pull my hair over and blend in. The top is open but the top of my head is ok. For $34 I thought I would give it a try going back to work in Jan. 2 days after #4.
Loafer, sorry you continue to struggle. It is so frustrating. I too wonder how long it will take to regrow the thickness back....I guess at least a year. My girlfriend keeps telling me to count the hairs I have, not the ones I have lost......
Hugs
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It sounds like some doctors want us to lose our hair! I'm baffled at the attitude of some of them! Thankfully, I've not encountered this.
Sorry you're not having great success loafer. Just think that at least you've lasted longer with hair than you otherwise would have and that hopefully it will grow back quicker if you continue to use the caps. I had my 3rd treatment yesterday and am worried that the hair on top won't last till the end of treatment but at least I can still go out looking normal for now. Even if I lose it all by the end, I still won't regret scalp cooling. Any extra hair for even a short time is a bonus.
Schoolmom - that's what I tell myself when I see my thin hair on top - that at least it's still just thin hair and not a bald patch!0 -
My heart goes out to you Loafer. I wish you had better success with the caps.
As far as long thinning hair - for a while I wore some clip in human hair extensions I bought at a beauty supply shop. It just thicken up the back a little. I wore them and then finally got a lot of the length cut off as it seemed dry and thin. I went to my shoulders. I have kept is shoulder length since last November until a few months ago I was missing my long hair and started growing it back out. It is so thick, healthy and still does not get greasy. I can tell you this is the best shape my hair has been in years! Have faith even if your hair thins and you have to get some cut, it will come in nice. All the areas I did lose around face/hairline/nape of neck have grown all the way out and have caught up to the other hair length. Hang in there girls........it will get better.
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I concur with some of your experirences -- I didn't get a lot of negativity about the cold caps from my medical team, but I had a hard time getting any of them to admit that I'd have lost all my hair otherwise. Well, I probably wouldn't have lost all my hair, actually. I had about 15% of my original eyelashes, about 15% of my original eyebrows, and about 5% of my hair ... down there ... PFC. But if I had that ratio of hair on my head, I would unquestionably need a wig, whereas my hair at this point looks thinner than I'm used to but well within normal range. I estimate I have probably lost about 35% at this point, around 6 weeks PFC. (My hair was VERY thick to start with -- I probably would have lost percentage wise had I started out with less. )
So anyway the upshot is that they are mostly in denial about it. MO said, "well, you were very disciplined about it." Like that was the reason.
I think they underestimate how much this impacts your physical health as well as your mental health -- there are so many times where, if I had had to deal with a wig or going commando, I would just not have gone out, gone for a walk, gone for a hike, gone for a swim, gone to the store .... And who needs a disincentive for any of that when you're on chemo? I think the fact that I exercised during chemo helped my experience be not nearly as bad as I feared, and having my hair really helped me exercise.
Someone asked about TC -- I did taxotere/carboplatin, not sure if you're refering to taxol /cytoxan. Dancetrance and I both did that regimen and kept our hair, others as well.
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Hope everyone had a Merry Christmas...4 days, no posts!?
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I guess all of us have been very busy, and that's a good thing!
My hair is beginning to look better. It had thinned out about 30% through shedding and then I had a lot of breakage of my bleach damaged hair which left the section down to my shoulders whispy. I refuse to cut it short to make it look thicker as I do not look well with shorter hair, so have been blowing it dry carefully on cool to make it look as full and normal as possible.
I can see, and finally so can others, that I have a lot of new hair coming in which is about an inch and a half long now. It's filling in between the hair I kept (thanks to Cold Caps) and sometimes pushes it up in amusing ways. I often look like "Alfalfa" with a cowlick on top, but I would rather struggle with taming a cowlick than be bald as an egg.
Hope everyone is doing well.
Happy New Year!
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Hi all! Happy holidays....it is definitely good to see everyone has been busy the past few days.
Hortense- I also have a lot of hair that seems to have broken half way down....it's not a good look but far better than the alternative.
Question...is anyone shedding on a daily basis? I am about 2 1/2 weeks out from my 2nd chemo session and it seems that I shed at least 50 hairs per day. I'm trying not to freak out about it but at this rate with 4 more sessions, it's challenging to stay positive.
Happy Holidays to everyone!
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Good morning all. Finally got my taste back yesterday, 10 days after #3. One more to go!
ndmk: My worst shedding was between #2 and #3. It started 5 days after chemo and lasted at least two weeks . I probably was losing 100s of hairs daily. I know that is when I lost tons of hair. Mostly underneath, behind my ears, along the nape. Then it slowed down for a few days before and after #3. It started up again after I washed on day 5 and has been 50-100 daily this past week. This time I notice underneath on the sides of my head.
My hair was shoulder length and layered. The longest layer is thinned out alot. The shorter layer is hanging in there. My parts have widened but not horrible.
Just waiting for #4 in ten days and then hopefully won't shed too much after that last one and I can wait for it all to start coming back.
Greatful to have hair. I realize it is thinner, but like you said, the alternative is so much worse. Hang in there. By now, it would all be gone.
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I agree with schoolmom. My experience was similar to hers though I don't think I lost any extra underneath. Also, losing 50 - 100 strands of hair a day is not that bad in the great scheme of things, considering that we have 100,000 or more on our heads normally. It's just very hard to watch all of them trail out and drop everywhere. Shedding will taper off and stop even though it seems as if it will never end while it is happening.
You both are doing very well! Hang in there.
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Hi nmdk-my shedding was worst after the second chemo, as you are experiencing, then it really slowed down. I am at day 52 now since my first chemo and have minimal shedding (yay and knock on wood). i hope your shedding will slow too- i think you are at the worst point where the oldest hairs come out. I had sheets falling out right after chemo 2 and I cried. but I got through it and still i need no head cover- it was lost fairly evenly all over. a few thin patches but they can be covered ok by parting differently.
I get chemo every three weeks-TCH. i am taking the silicone pills daily (and turmeric pills - great for anti-inflammation), washing hair in tub with light drizzle to rinse twice a week and trying to not even touch the hair on my days off work. It just hangs. The holidays have been great to stay home with no combing. i work in a science biology lab and my crew is not critical about my coming to work uncombed. luckily i dont have to see customers or anything like that for my job.
I am sure wishing you luck, and everyone else going through this. All i can say is, for me the caps are sure worth the effort. People see me, not my cancer. And thanks hugely to my penguin cap crew! My gals are the best.
Hang in there! even if we do/will need to wear a scarf or soft headband for awhile, our hair follicles will be so much better off than if we werent doing the caps. and that means quicker regrowth/regeneration.
Happy new year to all and thanks for your posts0 -
Hey ladies. I washed my hair for the first time in a week today and was shocked at how much I lost. I'm 9 days after chemo #3 and am hoping it's not all going to go wrong now. I've been lazing around all week feeling rubbish so not been combing much either so I guess today I saw a whole week's worth of shedding in one day? I don't know but it was scary to see it coming out in clumps rather than odd strands.
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I knwo I've asked this before, but when does it start growing back? I'm starting to get hair growth back ... elsewhere, but haven't noticed any hair stubble on my head. Hair growth elsewhere is pretty slow. Last chemo was the day after the election, so I am almost at 2 mos PFC. I have lost quite a lot of hair on my head. I don't notice so much shedding lately, but I am seeing a lot of breakage. I still have full coverage -- I started out with VERY thick hair so I am still well within normal range, but quite thin for me.
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I asked the same question at about the same time and can now assure you that it is already regrowing although you might not be able to see it.
My last chemo was July 19th, so 5 1/2 months ago, and I have about two inches of dense new growth filling in between the hair I kept by using cold caps - I measured it just now. If half an inch a month, is normal hair growth, then my new hair has been growing above my scalp level for four months and must have started below it before that.
I couldn't spot it coming up no matter how I looked or felt for it, so I worried that nothing was happening, but once it was an inch long I could see it clearly.
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Hortense, thank you so much for keeping those of us going through the caps on track. It helps so much to know even with the shedding that in a few months the bare spots are going to have a few inches of growth and basically we will start replenishing our thinned out hair. I have one more treatment next week and look forward to the last of the loss of hair and the growing back.
I know my dark, gray streaked roots are about an inch or more since the end of Oct, so 2 months. And the good thing is that the hair has continued to grow through all of this......which makes trimming a month or so down the road easier.
I read the protocal and we can trim no more than an inch 1 month post chemo.....that will help with the stringy thinned out longer layer for me. I guess we can trim every month or so to keep evening it out. It may be shorter but it will gradually get fuller.
Thanks again for the support.
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I trimmed the ends of mine myself about 1/2" every three weeks, starting right after my last chemo, as they were looking so ratty. I figured it wouldn't hurt to take off a little bit of what my head had been so actively regrowing - considering the length of my natural colored roots, and I don't think it did.
Congratulations on your upcoming final chemo!
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Schoolmarm - You and I must be on the same chemo schedule. My final treatment is Friday - can't wait to get this phase behind me. My hair continues to shed daily with larger amount when I wash and comb it. So I'm washing only once or twice a week. I'm not getting cradle cap or anything like that.
I am experiencing nightly night sweats, every couple of hours, which are awful. My helper seems to think the perspiring from the head is not helping my hair situation. I do have a lot of grey growing in and hoping I can still hold onto hair beyond final treatment.
I am self conscious about the bald patches on top and wondering if a hair piece, hat or scarf is advisable after last treatment?
Happy new year!!0 -
I had a hair dream last night! In it, hair was 'raining' off my head. Very scary. In reality, I'm almost 4 weeks PFC. Some shedding but nothing like the dream. Thanks to all for the info and support!
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301724- I've just noticed how similar our diagnoses, surgeries and treatments are! You're about a month ahead of me though. Did you have four chemos? I'm half way through 6 x TC. Have you started on any hormone treatments?
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Hi Michelle,
Yes, I had four chemo treatments. My last one was on 12/5. I'll be starting my hormone therapy - Aromasin - on January 30. My oncologist told me that it was usual to wait 6-12 weeks after finishing chemo to start.
I hope you're feeling good. I'm glad to be finished and am feeling better - mostly less tired - every day!
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Happy New Year to all my fellow cold cap users. May we never have any need to use cold caps again!
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Here, here!!!!
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I second that! Hoping for a healthy 2013 and end to treatments for all! Just read the article which validated chemo brain. While i was stressed early on about the diagnosis of breast cancer, i have not experienced the symptoms of chemo brain. Has anyone going through cold cap treatments experienced this? I know everyone's chemo cocktail is different which is a factor. But it made me wonder if there may be an additional benefit to cold caps.....
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Interesting theory, Loafer. I never had chemo brain, but just attributed it to my "chemo-lite" weekly taxol. Hopefully others will chime in.
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What article on Chemo- brain? Did I miss it? I have definitely experienced it. Just typing on the computer is a problem as I keep hitting wrong letters and working with numbers has been a problem. It's getting better, but it's frustating. I saw posters for several meetings about it at my radiation center, but didn't go to them as their timing didn't work for me.
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Hortense - here is a link. https://mail-attachment.googleusercontent.com/attachment/u/0/s/?view=att&th=13b72440a914bdc7&attid=0.0&disp=attd&safe=1&zw&saduie=AG9B_P-SA0x9YOrPiBdoe4sTVrUA&sadet=1354833399292&sads=slpYdHGCeIn7o9fJU-lmNziEyvg
Says up to 25% of chemo patients experience chemo brain.0 -
I think I had it during chemo and shortly thereafter - mild - word finding trouble. I seem to be back to normal now (whatever that is, lol).
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I feel like I've had some chemo brain, but also I wouldn't want to be spared that SE based on the cold caps b/c that would suggest that the PCCs were preventing the chemo getting to my BRAIN, rather than my scalp. I'm glad I have my hair, but i wouldn't trade it for an increased risk of brain mets if I thought that were a concern! So Loafer, let's just say you are lucky that you haven't noticed any deficits in cognitive functioning.
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@ Loafer-I had also wondered if the caps helped to prevent chemo brain. After much pondering I developed a theory, I shared it with a well known oncologist who supported it. I believe chemo brain isn't directly caused by the chemotherapy drugs. It is a symptom of the effect that the drugs have on the hormone levels. We've all heard how as we age we lose our cognitive abilities. This is a direct result of hormone levels.
@cypher-Not to worry, chemotherapy is NOT effective at treating brain cancer. There is something called the blood brain barrier. Radiation is used instead.
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Hi everyone, I've been on holiday for a spell, so apologies to those who PMd me for info. I've now replied, and for anyone who PMd me their email, I sent my writeup. To anybody new who is starting caps, or anybody considering using them, feel free to PM me with your email address and I'll email you my extensive writeup.
Hard to believe, but I am approaching my 3-year anniversary of being cancer free! My "chemo curl" is now about 1 trim from being history. I think I'll save the last super-curls in a bag alongside the sandwich ziploc which has the total of my hair loss. It felt like a ton at the time, but looking at my pictures, I remain quite amazed.
Most of all, I remain in awe that by managing and taking control of this major, major side effect of chemo, I was able to overpower my cancer -- and reshape, reclaim, and own my full life. Cancer has profoundly changed me of course, but discovering and successfully using PCCs changed me manyfold more.
Here's to a healthy, happy, hairy, peaceful new year!
Susan
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I also asked my oncologist about the cold caps and preventing drugs from reaching the brain. He told me these drugs do not even go to the brain so that it is not an issue.
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