You can keep your hair!
Take heart! You don't have to lose your hair to chemotherapy. It is NOT a given, in spite of what you may have been told. Many of us have been able to save our hair by using Cold Cap therapy. I just finished four treatments of T/C chemo three weeks ago using them during each infusion and I have kept most of my hair. Without using the cold caps, I would have lost all of it. To say I am thrilled is an understatement.
I had never heard about cold caps and had no idea keeping my hair might be possible until I accidentally ran across a chemo thread on this website that mentioned saving hair. Intrigued, I read as much as I could and followed a link in it to another thread here titled "Cold Cap Users Past and Present - to Save Hair", which fascinated me and gave me a bit of hope. Almost afraid to believe keeping my hair could be true, I followed other links to two outside websites, The Rapunzel Project, and the oddly named British company, Penguin Cold Caps. After reading through them both and seeing the video clips of news stories about them and that they had been written about in Oprah magazine recently, I began to realize saving my hair might be possible. I decided to try them. I am so glad I did.
Cold Caps may not be for everyone. They are COLD, so not a lot of fun, but I kept reminding myself why I was using them - to keep my hair - and the extra time necessary to wear them each infusion day passed. They also are costly. In Britain they are so commonly used that National Health Insurance pays for them, if someone wants them. Unfortunately, they are not so well known here so they have to be rented or bought, depending on which company they come from, and insurance does not cover them. They also require at least one dedicated, responsible helper to change them on a precise time schedule and to check that they are at specified temperatures or they don't work.
Use the search feature to find these two threads:
"Cold Cap Users past and Present - to Save Hair"
"Cold Cap Usage Tips"
For more information and to see news clips about saving hair go to:
www.rapunzelproject.org
To find out about penguin cold caps go to:
www.msc-worldwide.com
Comments
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Just wanted to chime in...
I used Penguin Cold Caps in 2009. I kept most of my hair. The Cold Caps helped me to deal with my cancer diagnosis and helped my children deal with the situation. They made me feel more like myself when everything seemed out of control. My oncologist researched them thoroughly while also speaking with the inventor of the Caps in England. I hope that they become a regular choice that one can make when having chemo.
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I used Penguin Cold Caps in 2010. I had a lowish oncotype and almost did not go through chemo, because the thought of losing my hair -- possibly permanently -- was devastating (there is a 5% risk of permanent hair loss on the taxane drugs). I had no idea whether it would work, but was determined to throw everything I could at my cancer. The idea is very simple: the caps freeze your hair follicles during the infusion (and four hours after) so that your hair does not absorb the chemo and does not fall out. It's exactly the same concept as sucking on ice cubes to prevent mouth sores (which you should do) and icing your fingers/toes with bags of peas to prevent neuropathy. They are very cold -- and for the first five minutes of the treatment you have a "brain freeze" sensation like after you drink a milkshake too fast -- but after that the nerve endings are frozen and you have a general sensation of cold, but not a brain freeze.
I was the first PCC user at my cancer center, and very few women in the US had heard about this treatment though it has been used in Europe for decades and is built into the cancer centers and the treatment protocol. I researched the possible SEs thoroughly (I work at a hospital so had access to PubMed research) and was surprised to find studies going back to 1973 on the efficacy of cold cap therapy, as well as proving that there is no risk of scalp mets -- in fact, one large study showed there is reduced risk of scalp mets with cold cap therapy. [The actual incidence of scalp mets is about 1000 times less than of developing leukemia as a SE of going through chemo.] The caps have been studied in clinical study at UCSF and the paper is forthcoming. They are en route to FDA approval.
I shed maybe 10% of my hair while going through TCx4@3; I should have been bald as Buddha by about day 14 otherwise. I never needed a wig, scarf, or cap; in fact, nobody knew I was going through chemo unless I told them. I maintained my regular activities -- even swam every single day, which I always do. Nobody knew I had cancer, was going through chemo. Nobody treated me like a sick or dying person. More importantly, I have observed that women who do caps have far fewer, less severe SEs in general. I am happy to send a writeup of my experience to anyone who is considering using Penguin Cold Caps, just PM me with your email address. Even if people choose not to use them, just knowing there is a choice in the matter is *huge* IMO. I have coached thousands of women in the last 2 years, because I think this is an incredibly important tool in managing one of the most devastating SEs of chemo, and in managing cancer. I have no stake or interest in the PCC company; I am passionate about spreading word so that women know about this option.
Btw, all of my physicians -- even my dentist -- now recommend PCCs to patients they see, and all of the MOs in my doctor's team also recommend them (it's the largest oncology team in the East Bay). My obgyn even sent her best friend to me to find out about the caps -- now that is a recommendation.
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I used Penguin Cold Caps too and kept my long hair. I have photos and details in my blog if you want to see the proof. Link below. You DO have a choice about your hair!!!! For me the best part was keeping a sense of normalcy through chemo when nothing else in my world seemed "normal". Because I kept my hair, my 4 year old son never saw "sick Mommy". He saw me the same as always and he just turned 6 today. At this point he still does not know I had BC or chemo. I will tell him when the time is right and at that point he will know I am doing great. I was also able to maintain my privacy through treatment by having hair. I took a leave from teaching aerobics while going through treatment and returned to teach my class a few weeks after finishing chemo -with my long hair in a pony tail. My class never knew I had BC or did chemo. It allowed me to tell whom I wanted to tell but not broadcast to the world I was a cancer patient. I am SO GLAD I used PCC's!!!
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I used Penguin Cold Caps two years ago. Lost my hair in one spot where I had a frost bite. After chemo it was covered with a scab and my dermatologist diagnosed it as a cradle cap. I have used special shampoos and prescription oils but nothing works and the spot itches like crazy. About a month ago I was on a beach and got hit with a beach umbrella. There was no blood but that spot is also covered with a scab now that doesn't seem to go away. Has anybody had a similar experience. Would appreciate any advise you can give me.
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Maarika - I had frost bite in two spots from having my caps too cold the first time (I should have followed protocol better) and ended up with a kind of thick cradle cap on each. The larger one itched from underneath I think because it had not healed completely and was a bit oozy.
I got rid of both by soaking the areas a while with shampoo and water while I showered, just to soften the thick scales, then I gently massaged the areas to help break up the softened cradle cap a bit before shampooing my hair. It took several times to loosen and remove it all. I have new hair growing in both spots.
Many moms use olive oil to soften cradle cap and they work on it gently with a soft brush or their fingers to break it up and remove it once it's softened.
You said you have a scab on the same spot that doesn't heal. I find that healing from scrapes is taking me longer than it used to, but a month seems pretty long. Have you gone to your regular doctor or asked your oncologist about that? Perhaps one can suggest something you could use to help the scab heal, once it has, you can work on softening and getting rid of the cradle cap whch should end the itching. They might have suggestions for getting rid of it also.
Good luck!
Dx 1/24/2012, IDC, 1cm, Stage II, Grade 2, 2/2 nodes, ER+/PR+, HER2-Surgery 02/29/2012 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 05/08/2012 Cytoxan, Taxotere
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Hi, I just had my first round of chemo on Aug 1st (A/C); next one due Aug 16th. Do you think I can still try to keep my hair?
Does anyone have any suggestion on how to quickly get this cold cup, before my next round of chemo?
I leave in Ontario, about an hour from Toronto.
Please, let me know! -
Maggs09,
Email Geralyn geralyn@talkamerica.net ASAP. Even if it is too late, your hair will start growing back immediately with the caps. Good luck!
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Thank you Hortense. I feel much better knowing someone else had the same experience. Tried olive oil/long shower and shampoo today. Will repeat tomorrow.
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Maarika - It should do the trick. Work on it gently when it feels as if it is softing in the water. It may take several shampoos. I even worked on on the front one gently right after I got out of the shower as I could see what I was doing in the mirror. Don't do too much at a time or you might irritate it. It will come off.
Judging by my roots, the rest of my hair has grown about 3/4" since my first chemo treatment, which means it has been growing right through all my treatments. I find that amazing. Cold caps really do work.
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I found out about cold caps on this forum. Although I ended up not having chemotherapy after a favorable oncotype score, while I was waiting for the test results it was comforting to me to know I had an option, and that I might be able to keep my hair.
It is a shame that this information is not given to every person who needs chemotherapy. We should know this option is out there and be able to choose whether or not we want to try it.
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SusansGarden, That is how we all feel. I gave my onc brochures and told him he could give anyone my number. I also asked him to please just tell patients, not to wait until they asked about hair loss. Everyone should have the right to know they can keep their hair.
Glad you dodged the chemo bullet!
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I'm glad that there are more and more of you successfully keeping your hair and letting your onc's know so maybe the word can get out there. My onc had heard about them and would have let me use them, but he was skeptical and thinking back to what they tried many years ago. He didnt seem to know anybody that had used them. I wonder if they talk about it at the San Antonio conferences?
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Bump, because people have been looking for this information in Cold Cap Users - Past and Present.
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I just want you to know that I admire all you women who have done your cold caps and achieved the result you wanted, keeping your hair. I remember the very lst comment out of my mouth when I was lst diagnosed with BC in 1990 was Will I lose my hair. Actually, I can never forget it because the friend who went with me is constantly reminding me of it. That's what things are for, eh?
As for me, I was very fortunate in that I did not actually lose my hair the lst time until many years later, think it was at least 10, but forget. So I had a long time to get used to it and it really did not seem like such a big deal since I certainly have dealt with some SEs that were much worse than losing my hair. But you have to understand, I am old and my looks are going down the tubes anyway....but the main thing is that since I am Stage lV and my liver is full of cancer, I just think I have a lot more to worry about than my hair. Plus, I HATE being cold....HATE IT, HATE IT.....can take sweating like a pig, but being cold is just awful for me. Today when they were telling me about Doxil at the oncos they were telling me how they can pack my feet in ice if I get it and I am sure I must have gotten the most awful look of horror on my face because the one nurse broke out laughing and said We don't have to do it! So I do not think cold caps would be for me....maybe when I was lst diagnosed and only 40 if they had decided to do chemo on me then and there since it was a big deal then....I just did not want physical evidence of any sort....I looked normal and that was how I wanted people to think of me. Heck, I resisted a port for a long time just because I did not want to have to see it. So I do not think of any of you who do the caps as vain, I think you just want to stay normal.
Me, I am way past caring about that part of it. I just want to keep on going so I can do things I really still want to do. I am growing hair back for the third time and must admit I am always happy when it comes back. It's always a little different, usually a little more white, and I feel certain people are BSing me, but I get lots of compliments on it when it is super short...always say Why thank you, but I did not do this on purpose.
Anyway, I just want to let you know that I am not knocking your cold caps and admire you for using them. Me, I think I would have to be knocked out to tolerate them....sucking on ice when I get I get my Adriamycin makes me let out little groans. And face it, at this stage of the game ( no pun intended) I am not worrying about hair....although I will say I was very plesed to keep my eyebrows this time. They do know about them here in OH. I know I saw them on the tv news and someone was taling about them and I said Oh, those are not new, read about them on the breast cancer message boards a long time ago. So I do agree they need to publicize them more, especially for young newly diagnosed women.
More power to you. I think it is good you are starting new threads about them because not everyone reads the cold cap user threads and I am sure there are many who would welcome the information. The more they are used, the more likely that one day insurance companies will pay for them.....sort of like dental sealants for children's teeth. Maybe a poor comparison, but one that I know about with my profession. I would for sure put your info on the newly diagnosed threads.
I wish you all the very best. Marybe
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Hi Everyone. I live in UK and used a cold cap for my chemo last year. Yes, it is almost unbearably cold for the first 3-4 minutes, then it gets more bearable. But it works. As all the scalp has to be in contact with the cap, this is very difficult to achieve, but carefully fitted, you don't get any bald patches. I did lose quite a lot of individual hairs, however, so it did look thinner. But, the important thing is that you don't look or feel like a cancer patient, and this has a huge effect on morale. With regard to comments that I've heard on skull mets being more likely, I'm at one of the top cancer clinics in London, and all the oncologists there are happy about their use. If I need more chemo, I will use them again. Anne
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Marybe - You sound like such a nice person! Thank you for posting. You have been going through a lot and I admire your attitude. Yes, the caps are indeed cold. I couldn't bring myself to use them, or even touch them, between chemo treatments, so I can understand. However, I am glad I used them as I have kept most of my hair and I do feel normal. I needed to, not just for my own sake, but because I am the rock for my extended family and I need to be there for them, and not be feeling sorry for myself as I would have been had I lost my hair.
I also iced my fingers and feet during Taxotere. Yes, I shivered for about an hours as I wore my electric blanket, but I have had no neuropathy and no nail damage at all. My radiation oncologist examined my finger nails a few days ago and was impressed.
Lemonsoda - Lucky, lucky you to have been at a great clinic that supported you! I was at the top cancer hospital in NYC and discovered that it didn't allow cold caps, so I switched doctors and hospitals in order to use them. I did get two bald patches because my caps were too cold the first time. I should have been more careful about the temperature used. They are both growing back now.
You said you used "a cap". Did you use a machine with one cap? Or did you use multiple caps? If a machine, how was it? What was it like? I hope one day everyone will have the choice to use a cold cap machine to save their hair. It would make chemo so much easier to undergo.
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Thanks Marybe for being so caring.
I love reading your posts.
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Bump, in the hope that women looking to save their hair might find this thread before starting chemo.
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Hi Hortense,
Are you at Cornell? I met with Dr. Cigler at Cornell about 2 months ago, and she mentioned that they were instituting a pilot cold cap program. Is that the one you are in?
I'm glad to hear it is working for you. I would love to be able to do it, but I decided to use a local hospital for my chemo treatment. Of course, the hospital, (Valley, in Ridgewood, NJ) doesn't do a cold cap program--i already asked my onc. I start on a TCH protocol for 18 weeks shortly. (Getting port put in this week). The thought of travelling into NY and dealing with NYC traffic and parking while not feeling well convinced me to do this.
Do you mind letting me know how much this is costing? I have oxford/united healthcare insurance, and its unlikely they will cover it. If you prefer, you can pm me with this info.
Thanks for sharing your story.
Cheryl
PS You wouldn't happen to know of a hospital in northern NJ that does the cold cap program??
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cgesq, I didn't know there were any hospitals in the US that supplied the caps, although there are several that supply a biomed freezer.
Penguin cold caps rent for around $500 per month for the first 3 months, then somewhere around $75 after that. They work very well with TCH. There are also caps you can purchase (Elastogel) for around $100 per cap, not sure how many you would need. These are not as good as Penguin, but a few women on these boards had good luck with them.
Good luck!
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cgesq - Yes. I went to New York Hospital's Weill Cornell Breast Center - phew, that's some title! I met with Dr Anne Moore who heads it, but had chemo through Dr Cigler because she takes insurance and Dr. Moore does not. Both are very nice and were extremely supportive of my wish to use cold caps. They told me 38 women had used them there and I know other women were starting after I finished using the caps in mid July, so the number must be in the forties or higher now.
I live 90 miles away but decided I wanted to go to the best possible doctors and where I could try to save my hair at the same time. I switched to them from Memorial Sloan Kettering which would not allow me to use cold caps, though not for any medical reason. It just didn't want extra people and the whole big "proceedure" of changing the caps all day long. I could have brought a brass band and a group of chorus girls to Cornell, if I had wanted to. It was that welcoming.
I'd had my surgery done at MSK though, before I met the oncologists at Cornell. I would come in with my husband and we would stay at a hotel, usually the Helmsley Medical Tower at 70th and York.
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Starting TC X 4 cycles on Oct. 4. Will be using cold caps!
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Good luck Vermont! The first time will seem a bit overwhelming, but then it's a piece of cake
"Cold Cap Users past and Present - to Save Hair" is a very active thread. Many women will be happy to answer your questions.
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