Cold Caps Users Past and Present, to Save Hair
Comments
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Mdg - I'm so glad to hear you used color so quickly. I'm about 6-1/2 weeks PFC and my roots are atrocious! I've had very little shedding so I think I'm ready for some color. Unfortunately my eyelashes are on the way out - was hoping to avoid that.
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JUST HAVE TO SHARE THIS...... TAKE YOUR SHEDDED HAIR AND PUT OUTSIDE FOR BIRDS TO MAKE NESTS.
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I also colored with Clariol beautiful collection a month PFC, because I was only washing every 4-5 days it lasted about 5 weeks... I did shed for months PFC ... But coloring made all the difference to how I felt...I went back to my "normal" coloring at 6 months but the semi-permanent helped me bridge the gap.. My two year mark just passed.. Have to say so happy I used PCCs and loved the results....
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Thanks ladies - appreciate all the advice on semi-perm color!! I have so much grey now, I need my hubby to color the back of my head. Will definitely have my stylist use a similar product in two weeks.
Reading Mdg's post about lashes falling out.
I was also hoping to avoid losing lashes and brows. How many weeks past treatment does this typically happen?0 -
I used henna hair colour for the first six months and did it once a month.
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My lashes slowly shed out during chemo as did my brows. I think I ended up with about seven lashes for both eyes. My brows came back quickly, starting even before chemo ended, but my lashes took a bit longer and itched a lot before they grew. They are now about half as long as they were and I am six months post chemo. I can use mascara again which is nice.
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My eyes were very itchy around the end of December/beginning of January. thats when I first noticed the lashes were going - between 3 and 4 weeks PFC. I have some stubby eyelashes coming in, and some are white! Ugh. I still have regular top lashes from the middle to the outer edge - hope I don't lose those.
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My lashes fell out around 6 or 7 weeks PFC but I started using latisse and they were back in about 2 weeks. Hang in there Loafer!
LM Flynn - glad to hear it's been 2 years!!! Good for you!
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Hi Ladies,
Just catching up as I've been away from the forums for a couple days. Reading about the eye lashes and brows falling out and it reminds me about the first time I went through this all, 18 years ago for Hodgkins. I was only 27 and married for less then a year. My husband was wonderful and even offered to shave his head with me when my hair fell out. LOL! I told him no, b/c one of us had to have hair.
That time around I lost all of my hair, but kept my eye brows and eye lashes. (Brows thinned a bit, but it wasn't noticable to anyone other then me.... but if I didn't have to wax them, then it was all ok with me.) I have 3-5 days till I hit the mark when I'll start the shedding period. Hopefully all I'll have is shedding. The cold caps weren;t any big deal to use, and it definitely made chemo go by so fast. My center doesn't have the coolers, so my husband gets the dry ice the day before and he wheels in 2 huge coolers that hold the dry ice and caps. It's really no big deal..... minus the part where I look like I've escaped from the psych ward. Ha ha ha!
Anyway, except for my Patriots tanking this game, it's been a great weekend. Hope y'all are doing well and feeling great. Hugs and love to everyone!!
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Hi all, sorry I didn't post for awhile, but i got mouth sores which became infected under the gums and then I got septic due to low blood counts. On the road to recovery now. That has been my scariest SE yet on this journey.
For the new girls who are contemplating the caps, I just want to say that for me the cost and trouble is sure worth it! I have long hair and amazingly it is still here. I wake up grateful to the penguin company, and my awesome cap helpers, every morning that I look in the mirror and still look like me.
I have had some thinnning, for me that means my part got a little wider/thinner hair there, but I sprinkle on the medium brown toppik and no one can tell. It has been really important to me to be able to maintain my privacy through my treatment, and the caps have sure let me do that. I am between treatment 4 and 5 of six total and the thinning has really slowed down (knock on wood).
Good luck and cyberhugs to all and I sure hope your SEs are mild and manageable! Please remember to take care of yourselves, it is by far your most important mission right now.0 -
Hi all,
Starting chemo and cold caps on thursday (TC x4) - I've read so many great posts and am very optomistic- but will be sooo grey -If I go 3 months without color, I'll look like a skunk!! I have used organic PPD free veg based color for years at my salon, but worried may still be too much- anyone with good ideas just for covering the part and temples to at least get me to the 3 month mark- I've read about henna- is there a brand/product specifically?
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bernac, welcome to the cold caps club! I am very gray too, and haven't had a color since mid-September. My roots are gross, although actually my hair growth has really slowed down since I finished cold caps on December 7(!) What I and others on this board have used to touch up the gray during treatments (and after) is something called Colormark. There are two kinds (found at Ulta) - one has an applicator like a very small mascara wand; the other (more expensive) has an applicator more like a large magic marker. They wash out whenever you rinse or wash your hair. For me they help to tone down the gray, but don't cover it completely. I'm just so glad to still have my hair that I don't worry too much what it looks like. However, I'm about to take the plunge and color my hair (earlier than recommended) - will consult my color person and let her pick what to use. Good luck with the cold caps!
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Did my 2nd hair washing yesterday, and it was a much better experience! I bought a handheld sprayer model and connected it to the guest bath shower...while even the 'slow trickle' setting I thought was too hard, I was able to just kink up the hose to get a nice slower stream. And I went with the recommended tepid water this time and finished with a cool rinse. I find it's still hard to get the shampoo into everywhere I need it to, just hoping that by kind of patting it all over it will do it's job when I rinse. Dabbed some conditioner on the ends and it was pretty easy to comb out this time. I think I lost a few more hairs than last time, but still not what I would have seen during one of my old hair washing sessions - trying to hold on to every last one! This week I'll be 2 weeks post x1, so keep your fingers crossed. I've told myself I won't panic as I know there will be shedding, yet I still get a little anxious with each hair I find on my shirt. I've put a post it on my mirror to remind me that we have nearly 100,000 hairs and losing 100 a day is within the norm.
Keep the tips and encouragement coming - I think us newbies need to get past that first 3 week point to really feel we're in a good place, and to be able to show our MOs and nurses that this can work!!! 0 -
Bernac,
I'm starting this Thursday and my cocktail will be TCH x6. I have not colored my hair for over two months and I have the skunk stripe right in the middle of the head, and it does not blend with my blond hair. Haha, kinda funny to see people look at me when I go out. I get the feeling they want to tell me to color or weave my hair. I also washed my hair with Nourish shampoo from Trader Joes and got Kendra spray leave in conditioner, which also helps with tangles. I did blow dry my hair for the last time knowing that I won't be able to for the next 8 to 9 months. I used cool water to rinse my hair in the shower and I had less shedding today then I normally do so I think I will always use cool water for now on. I remember my hair stylist tell me a long time ago to rinse in cool water and never did it until today! My imagination I'm sure, but it feels thicker than usual.
Hope49,
Glad you are doing well. Nice to hear that you are hanging onto your hair. I plan on keeping as much as possible too.
Hugs to everyone,
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Ronda2 - I suggest that you keep whatever hair comes out in your last shampoo or two before starting chemo, just to have it as a reference. I found doing so very helpful. Looking at it reminded me that I generally had hair loss during shampoos and helped me not to get too upset when extra came out after I started chemo. The worst losses probably will be between the second and third chemos. It lets up after that.
Good for you to have been so clever not to have touched your roots with lighteners for the past two months. You should not have any of the breakage I had due to coloring mine shortly before chemo. I thought "What harm could it do?" and learned exactly "what" the hard way.
Best of luck!
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To all those whose MOs are reluctant to use cold caps because of scalp mets, feel free to PM me. I have a list of 70+ research articles on the effectiveness of cold caps, including studies looking at the likelihood of scalp mets. I'm happy to share it. As others know, I've been asked by my MO and BS to present this info to the Tumor Board at my institution (since I'm the first there to use cold caps). I'm giving the talk on January 30.
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That is great, 301724!
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301724-That's great! Not sure if you've read this one. You might want to include it, it's the best article I've read yet! Very comprehensive.
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For anyone in the UK, here's a petition to make cold caps more widely offered in UK cancer centres: http://epetitions.direct.gov.uk/petitions/41247
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Michelle - Good for you! Great idea.
For everyone's information:
I submitted my cold caps bill to United Healthcare, my provider, along with my prescription for a "cranial prothesis" and was just turned down. I plan to appeal as long and as high up as I can simply because I want it to start to know about scalp cooling therapy and Cold Caps, not because I think I will get anywhere. I will have to print out information to send along with my letter.
What may have put it on alert to look at my claim more carefully was that the invoice Gerayln sent me, and which I submitted, was in British pounds. I think I will contact her as well as Penguin in England to ask if future final invoices could be sent to customers in US dollars. I have a feeling United Healthcare thinks I imported something from the UK to use here when in fact I simply rented something here to use here. If I had bought a wig there and sent the bill in pounds I am not sure how it would have felt either, though I plan on asking.
I was somewhat amused to see that, according to their Note F7, United carefully converted each month's cold cap bill "to US dollars using the exchange rate on the actual date of service". Their estimate of the cost for two and a half months was $1,467.33, a bit less than I had figured.
Note EE states: "Your plan does not cover this medical supply, prosthetic, orthotic appliance, or durable medical equipment, or the repair, modification or customization of any of these non-covered items."
I think we should all be sending in our bills with information on hair saving by using cold caps. Perhaps we could come up with a uniform logic along the lines of Michelle's petition that can be used by each of us as we submit our claims. Ideas anyone?
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I didn't set up the petition. I came across it via the 'Cool Head Warm Heart' Facebook page - an awareness campaign.
http://www.facebook.com/CHWHCampaign?ref=ts&fref=ts
The website: http://www.coolheadwarmheart.co.uk
Please 'like' and share!
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Hi Forest,
I used the cold cap with 4 AC and 4 TAX. It thinned alot and i did resort to wearing thick hairbands and mini headscarves but the thin/bald patches filled in really quickly so i see it as a success. Pics of my hair one month post chemo here:
http://chemoforbeginners.com/2012/11/20/keeping-hair-cold-capping
I hope it works out for you.
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Michelle- I assumed using cold caps was 'standard practice' in the UK. Do they most often use the Paxman or Digitana machine?
Hortense- I wondered the same thing myself...Why must it be billed in British pounds? It makes an already stressful event that much more so. First you have to contact your credit card company and ensure that the credit card is set up to be charged in British pounds. This is prior to any order of caps. I thought it was possibly a means to avoid some type of tax but have no knowledge in this area. Any ideas? It makes no sense to make it anymore difficult than necessary to rent the caps.
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Michelle - have also signed the petition. It's such a lottery in the UK as to whether the hospital can even offer it, which seems unfair. And it seems that the hospitals who don't offer it palm it off saying it leads to brain mets (NOT accurate, NOT true!) so that it puts their patients off wanting it in the first place! The number of women who've said how 'brave' I was (in a disapproving way!) to use the cold cap all had the heebie-jeebies put up them by their consultants.
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I don't think it is 'standard practice' in that it is routinely offered. I doubt I'd have been offered it had I not asked. I was told 'you will lose your hair', although to be fair, this came from my oncologist's registrar who was a complete idiot and told me I would be getting a chemo regimen that was inappropriate for me, followed by radiation for my radiation-induced BC.
I'm lucky to be treated at a large teaching hospital since I don't think it would be available everywhere.
Makingway - do you mean Dignicap? My hospital uses the Paxman machine and from what I've read online these last few months, that is the one mostly used in the UK.
Skibunny - I asked my onc about scalp mets and she said there was no evidence of scalp cooling being the cause. Someone on this board (don't remember who) has posted once or twice that they didn't do scalp cooling because their "onc didn't want them to get scalp mets". I thought that was so insensitive to say to a forum full of women using cold caps, suggesting that those whose doctors allowed them to use them were somehow being negligent or allowing their patients to put their health at risk.
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Michelle-Yes-the Dignicap is made by Digitana Systems in Sweden. Wow, I'm surprised that cold caps are not the standrad in Europe! I was told by Frank Fronda of Penguin cold caps that they were. Sorry to hear that they're not... I've heard the 'scalp mets' scare time and again. I really wish people would do the research before continuing to propagate such misleading information.
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You might be surprised. I expected to have 4 inches of mousy brown/grey roots before I could color my naturally blond hair back to its natural color but my hair grew very little during chemo and only slightly faster with Herceptin.
I waited the whole six months plus a week because having gone through the cap experience there was no way I was going to risk even a single remaining strand by jumping the gun on coloring. I had it colored mid July then again mid November, about the time I finished Herceptin. I had to have it colored again this week, a mere two months later.
My eyelashes fell out a few weeks PFC. Lost a lot of brow in that same time frame. They grew back fast, then fell out again in early December, almost a year PFC.
Leg hair has never really come back -- Yea!
I had no shedding during chemo but it started a few weeks PFC and I shed at a steady pace for 5 months.
Whatever your experience, DON'T PANIC! The caps WORK, and you are not a special snowflake -- they will work for you too!
We are beyond lucky to have had this option to save our hair -- you must tell everyone! In particular, I tell all medical people, regardless of specialty. When they look skeptical, I grab a handful of my shoulder length hair, look them in the eye and say, "do you seriously think I'm lying to you -- like I made up going through chemo?"
Maybe a little aggressive, but it infuriates me that women don't even know this is an option.0 -
Michelle - it is so insensitive! And you're right - makes it look like they're making our consultants (and maybe the hospital) out to be negligent and also as though it hadn't crossed our minds. I read a few studies on it and a very, very tiny amount DID get scalp mets - but so did women NOT using the cold cap PLUS it was accompanied by other mets - so it wasn't restricted to the scalp, suggesting they would have got metastatic BC regardless.
I would say that the vast majority of hospitals here don't offer it - but I would love to see that change. We obviously have a free healthcare system - so maybe that's the problem - they could spend hundreds of thousands on cold cap machines...or on life-saving treatments. Maybe they could do a rental system like it sounds like some of you have been talking about in the States - but I guess you run the risk of people who couldn't afford it being up in arms about it. Lots of people find the time around a cancer diagnosis rather difficult.
TheLadyGrey - super jealous of your leg hairs! All of my hair is back with a vengence...apart from my eyelashes and eyebrows that keep falling out! I assumes it's because they grew back at the same time and just reach the end of their natural life cycle...
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Yep, the scalp mets scare tactic is annoying b/c it is a "half truth" told by uneducated people who use it as a defense for why cold caps should not be done. It's a "half truth" b/c:
1) yes, if you keep chemo from going to the scalp, IF you were to metastasize there, you could theoretically get scalp mets
2) but no, studies have not shown those who do cold caps have any higher risk of mets there than women who don't do cold caps (at least no studies I've seen)
3) the risk of scalp mets with or without cold caps is incredibly low in either case. It is about 1% from what I recall. And as said above, the risk that mets will go to scalp as the primary place for mets to first show up is incredibly low. Breast cancer prefers to metastasize first to the bones, lungs, liver, and brain. Not the scalp. Compare this to the risk of permanent hair loss from Taxotere (about 3%) and Adriamycin (up to 6%). People are quick to point out the risk of scalp mets (1%), but not the risk of permanent hair loss from chemo (3 to 6%). Both are very low risks, indeed. A woman should be allowed to choose what she wants to risk. And she can't be allowed to choose if she is given misinformation.
BTW, welcome newbies! This does work! It was so worth the effort for me.
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Thanks, LadyGrey for your encouragement! I am just 14 days past my first treatment today, and so far so good...I love your comment about not panicking when the shedding comes...I will make 'I am not a special snowflake' my mantra during that time!
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