Cold Caps Users Past and Present, to Save Hair
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Thanks guys for the tips!!!
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soltantio - I don't know if there is a general rule of 16 weeks, but it seems most here have posted shedding slowed down by then. I think there may have been one who went out to 6 months shedding, but I'm not sure if I am recalling correctly.
Thanks for the compliment, YES, they DO work, dang it!
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I stopped shedding at 5 weeks and never had a problem after. I took sillica throughout chemo--maybe that made a difference for me??? I stopped the sillica for the radiation and have not taken it since.
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I've been taking biotin. Definitely made my nails stronger, so I'm sure it's helping my hair.
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Leveled - Thanks for posting what your tricologist told you. I think I will start shampooing more often.
I have been using a keratin conditioner ocassionally as my hair has been so dry and damaged, but keeping it off my scalp. My shampoo, DermOrganic, was recommeneded by PCC and has Argan oil in it, which is the same as Moroccan oil. According to Wikipedia: Argan oil is a plant oil produced from the kernels of the argan tree (Argania SpinosaL.), endemic to Morocco, that is valued for its nutritive, cosmetic and numerous medicinal properties. The oil is marketed for cosmetic use as Moroccan oil.[1]
I can't say that it has improved the condition of my hair as my poor hair is very dry and damaged looking, but maybe it would have been worse without it.
Dance - While I was unable to see your pictures as the server said it was busy - darn it, your avatar is fabulous!
Soltantio - I do the same math thing. I tell myself that I started with over 100,000 hairs on my head and that even though I have been shedding, I will keep enough to cover my head. I am two months past my last chemo and as you say, it's like a slow drizzle. Looking down at my t-shirt right now I have just plucked off five hairs, several of which look to have broken off rather than fallen out. Goodness knows how many more I have lost all day long. I find them everywhere.
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Dance - I just was able to see your pictures now and your hair looks wonderful! I am so impressed. You are also very pretty. Thank you for posting the pictures as they show how you really were able to save your hair.
I think you have more hair than I do. It certainly looks thicker. Mine has thinned. It's especially apparent as the hair gets longer, from below my ears to below my shoulders. I am seeing a lot of breakage which seems to be happening at the point between my lightened blonde hair and the new dark hair. I think that breakage is caused by my having bleached my roots just before starting chemo. I sure wish I hadn't now.
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Hortense - mine has thinned quite a bit, but the most recent pics I was able to make it look fuller by blowing it almost dry (lowest heat possible) upside down, and then putting 4 velcro rollers from the crown to my forehead - blew dry, then let cool, hairsprayed, then combed out carefully and sprayed again. My hair has always been thin, it's thinner now, but this is my "tried and true" technique for giving it more body on top.
I haven't trimmed it yet since before chemo! Reluctant to! Lots of split ends, I know I probably should, just keep putting it off.
I haven't highlighted my hair since a year ago. When I was diagnosed last year at this time, I had them put a demiperm brunette color on my hair. I just didn't want to have to deal with dark roots and going to the salon on top of surgery, etc., etc. I didn't know at the time that I'd need chemo. I am lucky that I did that, I do think it helps that it has been a while since I highlighted it. I am contemplating if I will ever go back to blonde. Love being blonde, but wow...highlights every 6 to 8 weeks is expensive and time consuming. We'll see! I'm glad that I have that decision to even worry about right now, LOL. So thankful I saved my hair, it is making the transition back to normal life so much easier. Sometimes, when I'm with people who don't know, and they don't ask how I'm feeling, I think "Wow, no one has asked me about my cancer, how insensitive." And then I realize...they don't know, b/c they can't tell what I just went through. It's good for me to be around people who don't know...makes me get back to "real" life, if that makes any sense, instead of obsessing so much about cancer.
Thank you so much for the compliments! I really wanted to show the process throughout chemo as much as I could, so people could see I wasn't making it up...the caps do indeed work!
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Hello this is my first post I am new and will be starting chemo in early Oct. I have been told tc 4 rounds, I am so thankful that I have found this information about cold caps, I found a company out of Atlanta called advanced cold cap services, the cost is 289.00 per treatment and they deliver it to the infusion center in a cooler at the perfect temp. There are 6 caps and they re-freeze as I have been told 8 is what you need. I have yet to get approval from my oncologist I am nervous that they wont be very supportive I have Kaiser so im not sure but I am doing it no matter what. I don't feel sick, I had a wide lumpectomy with clear margins and no node involvement. I have ILC and my tumor was big 4.5 cm that is why they are insisting on chemo and until I found out about the caps I was really upset, now I feel I have hope that I can do this and still look like me, im 44 and have a very active and wonderful life that I want to continue to enjoy, I also know that it is going to be tough but being able to look in the mirror and not look sick I think it will help so very much. Has anyone used the cold slippers or gloves that are suppose to help as well? please any information would truly help. Thank you
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Hi there,
Yes I used Penguin Cold Caps. I had 6 chemos Taxotere and Carboplatin. I did research Advance cold caps, and on looking at the forums it is clear that they don't work. Advance use the elastogel caps, the same ones that were around in the 1980's that didn't work well and gave cold cap therapy a bad name. Penguin Cold Caps have a 95% success rate, and I have met many women at my hospital who all had great success with Penguin. If you look at the comments on this forum, they are all users of the PCC's. Penguin Cold Caps work differently than other cold caps, the crylon gel inside the caps conducts coldness to the scalp evenly and Frank Fronda the owner and inventor has devoted the past 25 years to the science of chemo induced hair loss, and has perfected the protocol behind the success of this product. If you Google Advance Cold Cap reviews you will see the feedback from the users, here is the link! Good luck and let me know how you get on!
http://community.breastcancer.org/forum/6/topic/735873?page=91#post_2337407
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Hi Arlene,
I am curious to know which cold cap company did you use?
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I used Penguin Cold Caps this past May, June and July and kept most of my hair. I am definitely pleased that I did. I had 14 caps. The first two were worn about 30 minutes each, the others were 20 minutes each, plus I had some cold gel straps to go around just below the caps to chill the hairline as I have a large head and the caps alone did not completely cover my hairline. The straps are usually used to chill eyebrows, but my helper who has assisted other cold cap users knew to use them to keep the hairline hair, especially around the back of the head. I had four of them. They were refrozen between uses each chemo day.
If you use another company, be sure you have enough caps and that they do chill down to the temperature you need. Mine was minus 32º Centigrade. If you have thick hair it might need to be colder. Be sure you have two infared thermometers, one as a back up if the other fails, plus extra batteries. Bring two kitchen timers. One for timing each cap and the other for either back up or timing the chilling of other caps.
PCC warned me not to color or treat my hair during the month beforehand, but vanity and stupidity prevailed and I did anyway, so I am having extra shedding and thinning as my penalty. A warning to the wise, don't use any chemical treatments on your hair in the month before chemotherapy. Covering roots is not worth losing a lot of hair over.
Icing nails - I used crushed ice or frozen peas in ziplock bags to keep my fingernails cold while I was given Taxotere, and I used frozen gel pads to chill my feet and toenails during it also. Both worked beautifully. I have had no problems at all. I had been warned by my original oncologist at a major NY cancer hospital that I would probably have neuropathy caused by the 4 dose T/C treatment. The same oncologist also told me I could not use cold caps. I opted to change doctors and hospitals - luckily for me NYC has lots of excellent doctors and hospitals. I went to where I was able to ice both my hands and my feet as well as my head. I must have looked ridiculous, but it was worth it.
Get a twin size electric blanket to sit in during your treatments. It makes wearing cold caps easier. The caps are very cold, no doubt about it. When the first one was put on I was surprised, shocked really, by how cold it was and almost chickened out, then decided I'd be dumb to do that after all the trouble I had gone through to get the caps. It gets better to the point of being bearable very quickly as your body adjusts to the sensation. Also wear many layers of clothes. I always wore two pairs of long underwear and comfy gym pants or sweatpants on the bottom and a long sleeved T-shirt, a waffle weave long sleeve shirt that matched my long underwear, a cotton turtleneck sweater and a zipfront fleece jacket on top. Then I got into my electric blanket. I was never too warm. Sometimes I shivered through the Taxotere as so much of me was iced. I'd stop shivering as soon as I stopped icing my hands and feet.
I also took two Tylenol about 30 minutes before the first cap. My nurse, who had worked with many cold caps users before me, suggested it.
I met a number of women there of various ages who had also used cold caps and successfully kept their hair. It really does work. They, like me, felt keeping their hair made dealing with their cancer easier. Some of the younger ones didn't want their kids seeing them as "sick Mommy". They wanted to stay looking as much like they always had as possible. I have to say, they looked great. I had a hard time believing they had just gone through chemo, but they had. All had used Penguin Cold Caps.
Try contacting : Geralyn M. Pewarchie
Agent for The Penguin Cold Caps
Phone: 810-359-5257Good luck!
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I would go with Penguin Cold Caps. Others have tried other caps but it seems like there is less success. Most of us that used PCC's still had some shedding and our hair was thinner post chemo, but we still had a normal looking head of hair and did not need a wig or anything. I did TCx4 and used PCC's and did well with my results. I have photos on my blog. Link below.
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cagirl67: run, run, run from the Advance caps. They are used Elasto-gel caps, and the people that founded the company were booted from breastcancer.org (and are also wanted for having stolen funds due to Katrina victims).
The caps that work are the Penguins; if you send or PM me your email, I'll send you my writeup on my experience with PCCs (I am one of the early US users of caps and kept my hair).
Which Kaiser are you at? My awesome MO is now at Kaiser and recommends the caps; she's in Oakland.
Best,
Susan
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Hmmm. The Penguin Cold Cap site speaks of having an 80% success rate. That's a good rate but it's not 95%.
The Clinical Trials shown break down the effectiveness according to which chemotherapy regimen was given. And there is a note that the chemo regimen with the highest pcc failure rate has been addressed by the company since that trial was conducted.
Still it is important to not spread false information. Even these caps do not work for everyone - even those who follow all the directions, protocols, and have the required number of caps and the sub-zero freezers. If PCC has no problem stating this on its website then this thread should have no problem acknowledging the same.
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dltnhm~
Did you try the Penguin Cold Caps and have them not work?
I ask because I used them with 6 treatments of Taxotere/Carboplatin and I only lost hair right by my ears.
They worked very well for me and I will continue to recommend them.
I do not think this thread or the website are providing false information.
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I haven't heard of PCC not working entirely. I have heard that they are better with T/C than ACT which is a tough chemo, but there are women on this site who have had ACT and used Cold caps successfully.
Cagirl67 is having T/C so should be fine with cold caps if she follows protocol strictly. I know nothing about the company she mentions. I hope she does some research first before committing to it. She might be better off buying new Elastogel caps on Amazon as some women have done.
I do know that Penguin Cold Caps worked for me and for other women I have met who had used them successfully. She can get a freezer for cold caps donated to her hospital by the Rapunzel Project. My hospital has one that was donated. Also, if she finds another woman who wants to use cold caps and they share a set, Penguin gives them a price break.
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dltnhm -
I'm not afraid to state the facts as I see them:
- PCC's are not foolproof - some women lose quite a bit of hair - but they are not in the majority. Most are able to save their hair successfully. And yes it does vary by regimen, as I have heard that regimens with adriamycin are tougher to keep your hair with the caps. I do believe some here on AC have saved their hair, though.
- the majority of women on this thread have saved their hair with PCC's - not all of it, b/c you do shed, but enough that most maintain enough for decent coverage. I am one of those women. I would guess I have lost maybe 30% of my hair - not enough that others can tell. My pictures evidencing my hair being saved by PCC's are here: my cold cap photos
- other brands such as Elastogels are cheaper and according to some who have posted on this thread, they work, albeit it appears you may shed more b/c they do not stay as cold for as long. If you follow the PCC protocol for keeping these caps cold and switch them sooner than 30 minutes, you may very well have success with these cheaper caps. However, I cannot personally recommend that brand b/c it is not what I used.
The caps are very expensive, time consuming, and well, yeah, cold. LOL. However, I am very glad I did them - it was all worth it to me. It would not be worth it to other women. To each his own.
I am glad I had a choice, and I try to educate others that this option exists and that the majority of the time, it DOES work.
Namaste.
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I've read of others on this board who used Elastogel with success. I used the PCC machine and lost 50% of my hair. I don't consider that failure but I don't exactly consider it success. I think the protocol/method that is followed is most important and not necessarily the cap. My opinion.
dltnhm: Well said.
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I can't speak for the success of the PCC machine...I used caps and the caps worked for me. I still had my hair thin and I lost a little at sideburns, temples and nape of neck, but it was not noticeable to anyone but me. I could still go out and have a full head of hair and look normal. I guess if you are considering other caps, I would try to talk to women that have used them. I just feel bad when people try other caps and don't get the results they expected because a majority of us posting here used PCC's. This is not about bashing other company's caps....it's about sharing our experiences. Unfortunately some of the gals that have used other caps have posted they have not had great results, but at the same time there are some women that have not had good results with PCC's. In my opinion, you get what you pay for. The other caps may be less expensive, but cost should not be the only factor. I wanted to spend my money on the caps that offered the best chances of success for me...I knew there was no guarantee with PCC's, but since a majority of people posting her had success, that was meaningful to me in making my decision.
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cagirl67,
I am using the Elasto Gels. I am on my third of four treatments and have lost maybe 30% of my hair. That may not be as good as with the PCC's, but I am pleased. I purchased mine outright for around $80 each at www.hpms.com. For my 2 hour treatment span, I have 4 caps. 5 would have been better. I obviously refreeze throughout the day in dry ice. If you choose the Elasto Gels, wear them for only 15-20 minutes before re-freezing. Otherwise they will not be cold enough. I am following the PCC protocol. From reading the reviews here, it does seem that the PCCs are probably better (less hair loss). I was in a time crunch though, and had to get something fast.
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Stayinhappy - that's a pretty impressive result for only $320...especially since I think I lost around 30% with PCC's and spent far more. It sounds like the other brands DO work if you switch them out faster as you said, and follow the PCC protocol w/dry ice.
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stayinhappy - that's awesome! I am glad to hear that you are having success with them. It seems like most of the posters here have used PCC's so it's good to have more feedback to share with others considering the caps. Keep us posted!!!
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cagirl67, All of us here know where you are coming from, and you're right, keeping your hair will help you tremendously. I used Penguin with 6 rounds of TCH and only lost a tiny strip of hair above my ears where the cap didn't quite reach. I did not ice my nails and luckily, had no problems with them.
Good luck!
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I'm new to this site and a bit confused! What are cold caps and how can they help save your hair? I've been reading the posts back and forth. I will be starting chemo on 9/26/12, once every three weeks with Taxotere and Cytoxan. I read that both will make you lose your hair. I finally got my hair to where I wanted it, all one length to my chin and it is silver white in front and a little darker at back, am 65 yrs old and thought this would never happen to me? as everyone probably says. Since I did have lymph involvement and according to my age and diagnosis, statistics led to a chemo txtmt followed by radiation, undetermined as yet. Would help any input. Also, are steroids always given during chemo? Aren't they the cause of weight gain??
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knitterkjv: Please send me or PM me your email address and I'll send you my writeup of my PCC experience. Penguin Cold Caps work by freezing your hair follicles during your infusion, thus putting the follicle to sleep so that it doesn't absorb the chemo. The caps are most effective with TC treatments, less certain with ACT, and there are many many variables including hair condition and quality, liver function, overall health, etc. Results are very individual but most women on TC have excellent results, success being measured by not needing a scarf, cap, or wig. You will shed hair, but likely will have pretty complete coverage of your head (and what you shed will regrow).
There is a 5% chance of permanent hair loss with TC, which the pharmaceutical co. does a great job of covering up. (I think they ought to cover the expense of caps outright.) PCCs have been used in England and Europe for many many years and are a routine part of the cancer centers and treatment; they are just being used in the US over the last few years and are on their way to FDA approval. I am one of the early users of PCCs and my doctors were skeptical but supportive, they now ALL recommend caps to their patients.
I'm sorry you are on this journey but I'm very glad you found out about PCCs; it remains a minor miracle that folks find out about the caps, since their use remains a very patient-driven movement at this time.
Best,
Susan
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Had the first chemo (TC x 6) yesterday and used Penguin Cold Caps. Unfortunately, each change of the cold cap brought on nausea and vomiting. I am not sure if it was helped or made worse by the Atavan. Has anyone else had this experience?? Is there anything that might make it better?
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I vomited several times the first day I used the caps, but I think it was all the Powerade and popsicles I had consumed - too much sugar for my system. I was trying to stay hydrated with electrolytes and had read that popsicles were good to suck on to avoid mouth sores.
I avoided anything sugary the next times and had no problem.
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hI SQUMPKIN! I, unfortunately, had the same problem but only really with the first round of chemo/using the caps. I think nerves played a big part for me and i think Ativan can only help. I also started using an electric blanket after that first session and that seemed to help too. Sorry I dont have better answers but know that you are not alone! Good luck & let us know how the next round goes! : )
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The PCC machine doesn't work nearly as well as the cold caps in my opinion. I'm interested to hear the success rate with the dignicap machine. Does anyone know?
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The PCC machine doesn't work nearly as well as the cold caps in my opinion. I'm interested to hear the success rate with the dignicap machine. Does anyone know?
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