Cold Caps Users Past and Present, to Save Hair
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Here's a question for you ladies who know their way around this site: Is there anyway to give the women who join the main discussion board a heads up that cooling caps and the possiblity of saving their hair exists ?
It really bothers me that each and every month a new thread is started for the next group of women who will be undergoing this ordeal and the vast majority of them have no clue that there's an alternative to going bald ! (My case was actually the opposite- I found BreastCancer. org because I was googling Cold Caps and boy am I glad to have found all of you ! It's a weath of information !)
Someone who doesn't know they exist wont google "Cold Caps". And we've got important info here. Do others agree that if more women here knew this was even a remote possibilty, they'd be very, very interested ? What do we do ?
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MTG: I actually hadn't thought about what the other chemo patients will think when I start wearing these funny looking caps while undergoing treatment. My onc is supportive, but I haven't run it by the ITA nurses. On the other hand, they are all friendly there so hopefully I won't get flack. Unfortunately cold caps are not really mentioned at my Cancer Center not because the docs and nurses aren't familiar, but because they aren't easy to get and use since my facility doesn't provide the resources (such as a freezer). For someone undergoing chemo treatment this is one extra effort that many care providers probably think is unnecessary. Hopefully, we users will can change that. I get my caps Thurs, and my 2nd chemo on Friday. Hopefully, I won't lose much hair. I'd be interested in reading the greek study.
M
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MTG - I just keep "bumping" the thread - I expect everyone on the Board thinks ~I am nuts!
My chief reason for keeping this in focus is that I really rather resent that resigned attitude I see where docs/nurses and even us patients think we cannot do anyting to save some hair. Granted, there are no gaurantees, but if we can do something we should.
IT is not good enough to just sigh and put up with looking less than lovely for months. Lets just give it a go girls!
If anyone can do a little bit of lobbying at their hospitals, attitudes can change.
And as far as I can tell, in the US if it makes money for a doc/hospital whatever, they are all to keen to to do a procedure. This to me seems an issue of patient power.
In the UK it might be the case that soe hospitals won't have the budget for the equipment (though it is very simple) which is a bit different.
Everyone is welcome to do as they wish. For me, I just don't like the scarf wearing ra-ra thing. That is just me (and not meant to offend anyone).
Everyone can laugh at me if this doesn't work, but I am reasonably happy that I will get some upside out of it.
So, I'll try to keep bumping the thread.
warmest regards-
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Hello Girls-- I just wanted you's to be aware that the PCC 's are widly used in other countries around the world. But not here in the great USA!! It takes a long time to get things FDA approved where everyone can use them. Most doctors and nurses are not knowledgable about the caps and are very skeptical until they see it works and then become interested. (As mine has!!) They just don't know about them. There use to be other caps years ago (not PCC's) that didn't work and they have that stuck in there head. They also worry about scalp mets (which they never read the trials on that either) and since they don't know they tell there patients not to use them. Which a few women I Pm'd on this site to tell them about them- their docs said no. Just because they don't know! Also nurse's aren't excited about it because it is more work for them and they are busy enough already. I felt like a pain in the _ _ _ for them when I was doing the PCC's but I didn't care because I was on a mission to save my hair!! They are not the ones going bald and if they were in our positions they would use them too! Women are skeptical too if their doctors don't tell them to do it!
The good news is-right now trials are being done in Michigan and Florida and soon other states to gather data to get them FDA approved and soon it will be approved and in all hospitals! It might take 3 years but eventually we will not be a secret society anymore!! For now you can try a let people know about them and they can order them thru MSC unless they live by a clinic who is in the program. Iam confident that the more women who use them in the USA and talk to their onc about these trials and want to use them the faster they will get approved because more oncs will be learning and hearing about them with every success story!
Hope everyone is doing well and hang in there and share your success with others. Word of mouth spreads like wildfire! Take Care-Geri
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Geri - very interesting post. Nonsense about hair mets of course!! Obviously the FDA approval is in terms of perceiving this as a Medical Device. Which it isn't really.
I happen to be at probably the top cancer hospital in England and believe me, if there were any danger, there would not be three available machines plus the hats that live in the fridge. They just like to ensure you understand that they just can't promise how much hair you may reatin. Fair enough after all.
I'm afraid that perhaps in the Staates this is a situation where medics fear litigation. I can understand that given the system but if this was all about something to do with men's willies or similar, ya think it might have been sortede? I think it might have been... We are only women. It is only hair. And we happen to be living in an era when any form of physical imperfection is used like a weapon against people. In part, this is why I am sort of lobbying a bit - why do women still accept second best so often? In my journey to date, I had a lot of troubles with doctors and surgeons etc to start with, because I am jsut not used to be ing treated like a rather thick non-[achiever. I happen to have been a cheese, but cconsider that irrelevant as we are all of us the same on this unwanted journey. After a lot of classic assertiveness stuff and shere bloody mindedness I seem to have found a tolerable spot now.
Life is a long song - lets make sure we each call our tune loudly.
Now, I am glad you're there - have you got any hints for eyebrow saving? If I try to paint some on I'll end up like Graucho Marx!!
warm hugs
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Hello London-Virginia! Glad your there and writing on here! Iam not sure where you are in your tx. I finished mine 3 1/2 weeks ago and my eyebrows were almost gone (thin before I started) and lashes very thin. MSC does have eyebrow bands but they don't promote them because they can cause frostburn on forehead. Can-D used them and said it was very cold and uncomfortable but Iam pretty sure she saved her brows. I didn't use them.
When I finished my tx I started using Latisse (I got mine from my PS) It is suppose to help your lashes grow thicker, longer and faster. Iam using it on my brows too. Heard that from a gal on here. My lashesthat are left are holding on and I see a few new ones starting to grow but my brows are really growing back nicely! I use the brow powder to fill in the bare spots, I like the powder better than pencil! It blends nicer. The nurse said to wait to start using Latisse until after chemo since chemo is making them fall out and Latisse is trying to make them grow and they work against each other and it is expensive (100.00 for a small bottle) and you don't want to waste it. But now I spoke to a girl who used it thru chemo and never lost her brows or lashes! And they are really long and thick now. Now I wished I used it all along!
Try the powder to fill in you brows, I think you'll like it and you won't look like Graucho Marx!!
Take Care---Geri
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Michele RS and others - Here are a couple of links to articles I've found. The second one is an abstract only; if you'd like to see the full article, please pm me and provide an email address and I will send you the aricle on a pdf file. (Sorry, I can't figure out how to attach it to a PM.) Also, you might try googling: Prevention of chemotherapy induced alopecia and also: Prevention of chemotherapy induced hair loss, since many references seem to come up. You can never be too well informed.
1) http://annonc.oxfordjournals.org/cgi/content/full/16/3/352
From the Annals of Oncology Advance Access originally published online on January 10, 2005, "Prevention of chemotherapy-induced hair loss by scalp cooling", E. G. Grevelman and W. P. M. Breed
2) http://www.ncbi.nlm.nih.gov/pubmed/10762750
European Journal of Cancer 2000 Apr;36(6):766-71, "Prevention of chemotherapy-induced alopecia using an effective scalp cooling system", Katsimbri, Bamias, Pavlidis
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Met woman at my hospital this morning who has a ptretty decent head of hair after 8 rounds of chemo, using cold cap.
I hope I will be that lucky!
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Hello, I am new to your site, have lost my hair once last year after initial surgery/chemo, presently not responding to chemo with recurrence, about to change to new drug. Still have most of my hair, and would like to get the cold caps before starting another chemo regime in one week. I have not rec'd call back from message I left for Penguin Cold Cap Co. Does anyone know how I can get prices for them, info on shipping time, efficacy with my chemo drug? I have read your discussions, watched the MSC video, read the articles Geri kindly posted about the caps. Any help you can give me would be very much appreciated. The chemo nurse I spoke to said they don't work, so I am in this pretty much on my own in the Midwest USA. Thank you!
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Beth I just sent you a PM
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Thanks Can-D, I just sent you a PM.
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Hi,
I am having a mastectomy in September, possible chemo. in December? The medical onc. that I spoke with (I did not really like her) said she "does not believe in the cold caps because the cancer can go to the head." Since I did not really care for her in the first place, should I find another oncologist?
Ang
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Just dropping in to wish all of you wearing the PCC all the best, and hoping they will soon be approved here in North America.
And for those of you on Taxotere or Taxol -- try keeping your fingers and toes cold too, because those taxanes can really do a number on the nails. I lost both thumbnails and my other fingernails looked awful, but since my feet in sandals were always cold (air conditioning in the chemo room!) I never had a problem with my toenails.
Oh, and THANK YOU for serving as unofficial research subjects in the unofficial cold cap trial!!!
Hugs to you all! Linda
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Ang - I don't think it is a good enough reason on its own to change oncs, but if you don't like your doctors perhaps you should consider changing? I don't know which country you are in so perhaps this is not an option. If it helps, I attend a research instiutute and one of the best cancer hospitals in England, and they have no issues at all with cold cap treatment.
good luck -
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I am in Fairfax, Virginia. I will research the doctors here and see if I can find some that do not have issues with the cold cap treatment.
Thanks!
Ang
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Just checking in as I complete cycle 2 of TC -- will have my 3rd infusion on Fri, 9/4. I still have enough hair that most people would never suspect I have had any hair loss. I had substantial loss at the nape of my neck following the first infusion due to the caps not cooling that area sufficiently. I also experienced a loss in my temples and around my ears for the same reason.
However, I had very little hair loss in this 2nd cycle, just some minor thinning. It seems that the areas that don't get cold enough fell out during the first cycle and were already gone for the second. I'm hopeful that most of my remaining hair will last thru the next 4 cycles of TC.
The really great news is that I had a phenomenal clinical response to the first two cycles. I am getting neo-adjuvant (before surgery) chemo and had an MRI on Mon 8/24 to assess the effect. My two smaller masses were no longer seen and the primary tumor had shrunk to only 35% of it's original volume. I was told that it was very unusual to have such a strong response this early with the TC regimine (although it is seen in the TCH regimine for her2 + patients).
The chemo is working (actually kicking my cancer's butt) and the cold caps don't seem to have had any adverse impact on its efficacy since my clinical response this early was much better than is typically seen with my type of tumor and the TC regimine.
My onc and his staff, all of whom had been skeptical about the caps working, were very surprised to see me show up with a full head of hair at my appointment on Wed, 8/26. The staff call me the "cap lady."
It is indeed quite an ordeal for those of us using the caps on our own. I am so very thankful to my new friend "makingway" whom I met via the breastcancer.org forums. She is very diligent in helping me with the caps on the day of my chemo, which is a major undertaking. She has to pick the caps that are at the best temperature for each 30-minute change. With the dry ice and picnic cooler method, some caps are too cold and some aren't cold enough. I drive to her house and we put a cap on before driving to the onc's office and we go back to her house after chemo where we use the caps for an additional 3 hours. She is amazing!
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thanks for the update and congrats on your treatment success both the caps and the chemo! good luck
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Lori - what excellent all round news - congratulations! Being a childish creature, I get an extra sense of pleasure from saying to the cancer - 2pah - you didn't even get my hair!".
By the way, if you are in Northern California www.armyofwomen.org are looking for ladies to participate in some research concerning stress/sleeping patterns and cancer. The details are on their website.
May your hair sing!
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NewportLori..,
Hello this is Geri and I spoke to you on the phone before you started your chemo. Iam glad to hear about your success. I used the caps too and it is very important to put them on right. Center the square on the top of your head. When you put the straps on, the ones in the back go right to the edge of the cap and pulls up along your hair line to the top. Make sure your hair line is covered. I stuffed tissue paper in mine by my temple (it was cold) and pushed it in to far and lost thair there! Plus you want them to be on tight. I know they work but they have to be put on properly- and the right temp. I had a few goofs too but I managed to keep 90% of my hair.
Good Luck with the rest of your tx--Geri
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I've been reading some about these cold caps, where do you get them? My oncologists nurse said that they do not work, so I'm thinking that they won't make them available. Are all oncologists suppose to provide them if asked or is this just an individual thing that each oncologists will do for their patients?
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Hello cabmom,
I f you read back on some of thes posts it will give you alot of information. But basically you have to order them and go to the Penguin Cold Cap website. They are common in the UK and just starting trials here in the USA so not many oncs know about them. Some where around before that didn't work but they were different. Like I said read all the posts here and you will find out more info or you can PM me. Good Luck-Geri
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Replies to multiple posts:
London-Virginia: Yes, it feels really good to have the chemo killing my cancer according to MRI results and still keeping most of my hair. In the battle of Lori vs. cancer Lori is winning!!!
Geri: You were the first woman I talked to who was using the caps. Your good response and encouragement caused me to move forward with trying to use them. Thank you. I later spoke to 3 other women who used the caps to whom Frank referred me. I was reluctant to ask friends to help me with the caps on chemo day, but God provided another woman who lives 15 minutes from me who was also considering using them if she choses chemotherapy. She still hasn't chosen to undergo chemo but has helped me with the application of my caps on my chemo days. Proper fit is important but each head is different. I have a larger than normal head and the caps did not cool the nape of my neck very well. Therefore, I lost a signigcant amount of hair in that region in my first TC chemo cycle. I also lost some hair in my temples and around my ears, but nowhere near as substantial as the hair I lost at my neckline. Happily, I still have what would be considered a full head covering -- enough hair to not need a wig.
cabmom: My onc and his staff were also very skeptical about whether the caps would work, but my onc had no objection to me using them. One staff nurse who had experience with earlier versions of cold caps several years ago was extremely negative about the PCC's ability to save my hair. However, they have all now seen that I still have a full head covering going into my 3rd TC tx tomorrow. When I was there for an office visit on 8/26, I was waiting in the in the main staff area while my onc made me a copy of my MRI report. I saw the nurse who had been most negative and said, "See, I still have hair." She and other nurses came to view my hair and admitted that they had been referring to me as the "cap lady," almost as if it was some perjorative term. They all also admitted that I had retained a lot more hair than they had ever seen with the TC regimen.
Unfortuantely, the PCC are not yet approved by the FDA in the USA so very few onoclogists would even know about them to discuss them with patients. There are some US clinical trials going on but there are women like me who heard about the caps on the Internet. I rent the PCC from the UK company, keep them in my freezer and cool them further with dry ice in picnic coolers on the day of my chemo. It's not an optimal situation, but it has worked pretty well for me. My mantra is "I still have hair!"
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I had no idea that Penguin is a British company - I haven't researched into Penguin because at my hospital, it is already fully supplied with plenty of hats for all.
It does seem pretty ludicrous that this has to go through a full FDA approval, it not really fitting the "template" of a medical device.
Anyway, just to report that I am still not even getting extra hairs in my brush. Fingers crossed girls!
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Best wishes London-Virginia! Being that your caps aren't relying on a makeshift cooling system like dry ice and picnic coolers, I'm thinking you may have even better hair retention than I and the PCC have worked well for me. Keep us posted!
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Lori - thanks for your kind thoughts. The only thing that I think might be a slight shortcoming on the machine thingy I am connected to, is that I keep the attached hat on for a slightly lesser length of time, and lets face it, with the "mobile" hats you could drive home in one and keep one on at home for longer if you wanted to.
The major thing that I feel though is that at my hospital, no-one makes any kind of fuss about doing the process - it is just taken as read that it is part of what I have chosen to do. I don't mean to say that all hospital in the UK are the same - I am sure they aren't, but in any Unit of any size, this is nothing unusual. I am slightly puzzled why some women don't choose to do this as the ver y same ones previously bemoaned their hair loss fate. PErhaps they are more home based than myself, I don't know. As I have just started putting on weight from chemo (which means I really must get back into the gym instanto) I think I would just be more miserable than I want to be if my hair does still go. IT is quite long and looks really healthy at the mo.
By the way - I am using olive oil on about 5 inches of my "ends" regularly as a conditioner - it really makes one's hair shine. Rub in Greek organic olive oil (preferably!), put plastic bag over hair and leave to soak in for maybe an hour. Wash off with shampoo. See the shine!
Anyway, good luck to all pioneering penguin girls -
xxxxxxx
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bump for info
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Update 1
Have had two chemo treatments so far. I have asked around on the board and not gotten many responses about when I should expect to lose hair on my regimen (Taxol weekly/Carboplatin every three weeks with the taxol and Herceptin weekly)
The way I figure it, I have had two treatments that were exactly one week apart. So far I haven't lost any hair, but am reserving judgement/excitement until next week which will mark 2 weeks from the start of treatment and I've had 3 of them...in case the medication levels mean anything.
I wear my hair naturally and it is quite thick...so I worry about whether my scalp is being cold sufficiently.
I put it in braids on one side the second time to see whether it would be better (like as if I were getting a weave sewn in...) and felt that that side of my head actually felt colder than the other.
Again ....so far I have lost absolutely no hair. not on the edges, and not on the nape where a lot of ppl say they lose hair.
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malaika: I'm glad you haven't experienced any hair loss yet, but it may be too early to tell. I'm on a different regimen (TC), and the hair loss usually takes two or more weeks to begin. I started losing hair at the nape of my neck on day 14. However, as I have stated, I have an unusally large head and could tell the caps weren't cooling that area very well. Most of what fell out in that area happened in my first (3-week) cycle with very little loss there in the following cycles. I also lost some in the temple region, but I would call it minor.
These Penguin Cold Caps can be effective in preventing hair loss and it's sad that so few women in the US are aware of them. Given my experience thus far, I would like to spread the word so that other women realize they have a choice and can do the research and make an informed decision as to whether to use them.
Please keep us informed of your experience. Since you seem to be the first black woman to comment here, your experience could be helpful to others.
Best wishes.
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