Cold Caps Users Past and Present, to Save Hair
Comments
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I like it LadyGrey. I had this argument with a friend who had breast cancer. She was mad at me for doing the caps. She thought I was stupid for doing it. I think in some way she wanted me to suffer like she did. She asks me constantly how my hair is holding up like she is waiting for me to tell her I'm bald. I feel like she's giving me the malocchio! But why does going bald have to be the right of passage for survivors? Why can't we keep our hair and still be hailed as survivors? I hate that my friend made me feel like I was being weak because I wanted to keep my hair, my dignity, my privacy. Good luck! When I get out of this chemo hell and keep my hair, I will follow suit. I think more people need to know there is an option and you're not stupid or weak if you choose to try it.
Btw- there are at least 3 other cappers at Sloan Basking Ridge. My oncologist said "we advise against them" as is their hospital policy but she is very curious. She wanted me to let her know if I got reimbursed from my insurance company which leads me to believe she personally doesn't have a problem with cold caps.
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"But why does going bald have to be the right of passage for survivors?"
Daniella, I couldn't agree more. Losing hair is not some badge of courage. It's just a rotten side effect of chemotherapy. We're all proving it's a side effect that can be managed effectively just like nausea and mouth sores.
I don't see anything weak about using cold caps. Instead, I see a group of strong women here who have decided to take control of their diagnosis and treatment and refuse to accept hair loss as inevitable despite frequent push back from the medical community.
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Hi, LadyGrey.
I completely agree with you!!! I talked to my family about this and they can not understand why I am so upset and bothered by this.
I haven't read the article, but wanted to make sure that someone has and we know for a fact that Joan did *not* mentioned cold caps.
(I have made assumptions before and gotten a pie in the face...lol)
I know that keeping ones hair may not be a concern for everyone, but people should at least know they do have a choice.
At one of my infusions an older woman sitting across from me mentioned that she would have considered using the cold caps, but learned about them after she had already lost her hair. This woman must have said this 2 or 3 times. I felt so bad because it was obvious she was very upset by it.
My breast surgeon mentioned them to me. Thank God!! Otherwise, I would have accepted what I thought was the inevitable.
Thank you so much LadyGrey.
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Hi, Daniella.
I am sorry that your friend is making you feel that way.
I am not trying to sound mean, but the joke is on her. It would be SO much easier to just buzz our heads!
It takes a whole lot of strength, and perserverance to use those caps.
The last thing you are is weak.
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One last post.
When I brought up the Joan Lunden article to my family, I was asked a question. Did I know for sure that Joan L. knew about the cold caps. Okay, no, I can not say for sure. I would certainly think so, though.
Well, today while searching online for cold cap success rates while on A/C, I stumbled upon a Good Morning
America video clip named Medical Marvels with Robin R. . The Medical Marvel was the Penquin cold caps.Granted, it was from 2010, but I can not imagine that this wasn't brought to the attention of Joan L..
Sorry, I am done now :-)
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www.today.com/id/10285339/ns/today/t/contact-nbc-news/
LadyGrey inspired me. The link above will take you to a page where you can suggest story ideas to the TODAY show. I just sent the following:
During this month of everything pink, why not do a story about using cold caps to save hair during chemotherapy? I am a breast cancer survivor who was able to successfully save my hair using cold cap technology. There are a lot of other women like me out there. I am not in any way associated with Penguin Cold Caps. I'm just a working mom who was unfortunate enough to be diagnosed with invasive breast cancer in 2012 and fortunate enough to find out about cold cap technology before I began chemotherapy. Too many women don't know this option exists. Please check out the cold cap discussion thread on breastcancer.org where you'll find posts (and pictures) from women who are currently using cold caps. They are supported and encouraged by past cold cap users. We're pioneers and I think it's a story that deserves telling. Thanks for listening.
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Hey JoeyJamesMom,
I was actually on a discussion board in 2010 after I had used the Cold Caps and this is where I heard that Robin Roberts had heard of them but "did not want to do anything that might keep the chemo from going where it was supposed to go." I tried to let them know that I had done the Cold Caps in 2009 and I had hair left but no one on that particular discussion board wanted to hear what I had to say.
I am plugging along with helping any ladies that call me with questions and/or ask for help. I took my kid to the doctor yesterday and the nurse said "wow, did you see the cover with Joan Lunden, isn't that great!" and I was like "oh no, she had such an opportunity to spread information about the Cold Caps." The same thing happened when the singer Kelly Pickler shaved her head "to support her friend that was going through breast cancer treatment." I sent her an email about the Cold Caps and she did not respond. Of course, she had already shaved her head by then!!!!
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LadyGrey,
Thank you for posting this. I was in an elevator leaving the treatment center at Dana Farber with a woman who asked about my odd headgear and said she would have done it if she had known. I feel inspired to write to GMA as well. Daniella, I'm so sorry your friend acted like that. It's unfair, it sounds like she wanted someone close that understood the awkwardness of being bald rather than being happy you didn't have to experience it.
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I think that when people hear you kept your hair they think you are vain. I don't know that it's really vanity. For me it was privacy, dignity and not having to explain "cancer" and "chemo" to my son (he was only 4 at the time). If the story does get out there about caps, people who have not walked in our shoes will say "it's just hair....chemo can save your life"....blah blah blah. My response is "if it doesn't matter, then shave your head right now!". I am sure people will bash cold cappers and think we are crazy for worrying about hair at a time like this.....NO ONE gets it unless they have lived it. The other thing that bothers me not related to the caps is when people ask what stage I was and I say "stage 1" they say "oh, you are lucky to have caught it early and be cured"......I have to bite my tongue! I still had a bilateral mastectomy and chemo and it was "only" stage 1. They act like it was nothing.........they think you don't really have hard treatment at stage 1. Well yes, it is easier perhaps than stage IV or something but a bilateral mastectomy and chemo was not fun at all. My other issue this week (because it is the beginning of PINKTOBER - which makes me want to barf!) is the huge pink bra statue here in Chicago. People are taking photos with it and posting them. Every time a photo is posted a dollar is donated. While I am happy money is being donated, I am also a bit offended. Do you think if they were talking publically about testicular cancer they would have a huge jock strap and cup out for people to take pictures with? Just curious..... That would be "offensive" and would never happen. If I hear one more person say "save the ta-tas" or see one more BC fundraising event with a cute name including "boobies" or "ta tas" I am gonna lose it! They make it sound "cutsie". There is NOTHING CUTE ABOUT BC! Does anyone feel this way or am I crazy?OK, back to your regular posts and programming. I am putting my soapbox away for the night
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Hey LadyGrey -
Love it. You and I were diagnosed and active on the boards at the same time in 2011. You encouraged me to do cold caps. It is because of you that I found this thread and saved my hair.
Glad to see you making a return post.
Here's to 3 years and more! 0 -
mdg...I totally agree. Especially about the "save the ta-ta's shirt". That one used to really get me. Hello. It is "save the life" not the ta-ta's people! But truly I am more mellow about it now than I was a few years ago. I realize that most people really just don't have a clue. They just want to help and don't realize how offensive that kind of statement is to those of us who could not save our breasts and went through the trauma of MX/BMX. There is no way they could ever truly understand unless they went through it. They are clueless, but not uncaring at all. I try to keep it in perspective.
BTW, sometimes I wonder if the big name people who get bc don't do cold caps primarily b/c they would suffer the backlash of people saying they are vain, have money and are privileged so they could afford it, etc. etc. Just something to think about. A shame if that is true. Are they going bald b/c it is better PR, b/c that is what most women suffer through, and they don't want to alienate their audience?
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Maria, a pink bra statue, really? I'm kind of horrified by the thought of it.
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Here is the bra sculpture.....0 -
Oh my gosh mdg...that is awful. I thought it was bad enough that the people in my grocery are whooping each time they get a donation for bc. I feel like I am at a football game. Even though a good amount of time has passed for me, October really makes me feel yucky.0 -
** TIP **
Hi ladies. I just came to a realization last night. I finished chemo 10 days ago and I was messing with my hair in the mirror. My part has got pretty thin over the past few months and I was trying to find ways to make it look less thin. I parted it on the opposite side, and to my surprise the other side didn't seem to be missing any hair at all. Apparently the only place on my scalp that looks like it's missing hair is the place where I ALWAYS part it. So here is my advice, when using the cold caps, DON'T part your hair where you usually do. I always kept it parted in the same spot, and that is where I lost the most. I'm glad all I needed to do was change my part to the other side to hide it, but I do wish I would have known this earlier.
Just a word of advice!0 -
FL Sunshine - yes! That should be part of Penguin's instructions. I was lucky to have a fantastic Penguin rep here in the Twin Cities who emphasized changing my part with every cap change. (Along with lots of other helpful hints.)
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I remember reading that you should change your part with every cap in order to prevent frost-bite. But I never had that problem, so I never changed my part. Guess I'll just have to get used to parting my hair on the other side for awhile.
By the way, I am from MN- I went to the U of MN
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I can't imagine why you left Minnesota, FL Sunshine! Today it's cloudy, windy and cold...but the leaves are brilliant! Everything's a trade-off I guess.
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Our cold cap angels told us to remember that you aren't going to get every single cap exactly right so don't panic.
Remember, you are not a special snowflake. The caps work because they work and there is no Alopecia God who is going to single you out for special treatment.
My husband told me the other night that he really admired me for going through the cold cap regime which I thought was weird. The cold caps were a big old nothing compared to how I would have been as a bald person. It is probably a good thing that he will (knock wood) never know what a raging weeping bitch I would have been......
I am always touchy during Pinktober, but for some reason this year I am really irked by what I see as the glorification of baldness, particularly the People magazine cover of Joan Lunden. I'm going to have to throw it away before I write her a strong letter.
Anyway, here is the email I sent to People at editor@people.com (hint, hint, you could send one too!).
Dear Editor:
Stop perpetuating the myth that hair loss is an inevitable side effect of breast cancer chemotherapy.
I had chemo for breast cancer in 2012, and saved my hair by use of cold cap technology. Hundreds of women have done the same and I have no doubt that thousands more would take advantage of cold caps if they were informed that there is a choice.
Your recent cover featuring the bald head of Joan Lunden and the article suggesting that hair loss is unavoidable perpetuate this misinformation. In the face of “inevitable” baldness, some women choose to forego chemo altogether when there is a medically approved option to save their hair. It is tragic that they don’t know there is a medically approved system to avoid baldness.
Breast cancer patients are entitled to information about all of their treatment options, including the options to avoid or diminish side effects, and that includes informing them of the option to use cold caps to save their hair.
It’s easy to say, “it’s just hair” until it is your hair.
I implore you to set the record straight on this matter.
Sincerely,
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I wouldn't have discovered cold caps if it weren't for this thread and a friend of mine tipping me off to a trailblazer local, mdg on this board. From here I went to google and discovered Penguin and was hooked up with Geralyn and got the ball rolling, as well as having other ladies in and around Chicago to offer support and guidance. I was devastated more about losing my hair than my breasts, and not for vanity.
‘That was the worst part about having cancer, sometimes: the physical evidence of disease separates you from other people.’ – Hazel Grace Lancaster [The fault in our stars]
Just wanted to thank you for this board, I wouldn't have discovered or heard about it without you sharing here.
I started my chemo Thursday Oct2 of TC 4x/3weeks. One down, 3 to go.
xx HollyD
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Anyone else besides DaniellaD fasting before using the cold caps? I did for my last infusion and can't tell if it helped with the shedding and other SEs.
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Good morning ladies. I just wanted to add my two cents as a non capper. I follow this thread since I like to keep up with the "Colds Cap' news so that I can inform others of this choice. It was not the choice for me, but I certainly feel that for others, it is the right choice and should be available.I chose not to go that route since I simply didn't care about being bald. I found some great wigs and my children were grown and could handle my new 'look'. My chemo time was a time for relaxation, meditation, and contemplation. I wanted it quiet and comfortable. Also, I went alone for most of the morning appointments and my husband met me for lunch during the infusion portion of the day. I didn't want to drag all of the supplies on the train to the medical center. I also did not want company other than my husband. To be honest, I think my 'route' was far easier than the cappers' day. I think you are so much more brave than I am. I can't imagine putting so much effort into it. For me, my wigs looked better than my old hair and I needed no preparation to go out. Pop on the wig and no one was the wiser. No sad looks or invasion of privacy.
Just a thought......I think that possibly celebrities might find the capping process too much work. As a person who is in the public eye, they might feel more comfortable wearing a wig and not worrying about how they can't color or style their hair. Their appearance is so important and often 'fake', that the thought of less than a perfect style might be too intimidating.
I wish everyone good luck! You are pioneers and a wonderful support for those looking to try the caps.
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LadyGrey, were you the originator of the "special snowflake" comment? I've seen that phrase many times here and I repeated it to myself during my cold caps days. It calmed my anxiety when I was was doubting whether the caps would work. Thanks!
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Holly, welcome and good luck. We're here to support and encourage when you need it.
Janet, I've seen quite a few comments from women who were very happy with their wigs and hair loss didn't seem to be a big deal for them. I think that's great, no need to go through the expense and aggravation of cold caps. My wish is that women know about the cold cap option before chemotherapy so they can make the decision that's right for them.
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I also agree that cold caps should be an option to patients. I think people should just be able to know they exist and then make a choice for what is right for them personally. There is no one right way to go just like so many other choices we have had to make in treatment. It just bothers me that there is NO information out there, misinformation out there and doctors that are negative and scaring patients out of considering cold caps because they have not looked at clinical studies and REAL facts. I don't think cold caps are right for everyone.....most of my friends did chemo and did not use caps. I felt they were braver than me because they did it. I know I made the right decision for me and my family (my young son has no memory of me bald or never saw me look sick). I just hope the more people that use them will share the word so that one day others can be informed and make a decision based real facts.0 -
Anyone catch the Diana Williams special on ABC NY channel 7? She did a piece on cold caps she focused on one lady who was in the dignicap trial but they showed a little bit of the PCC video. It was very positive. I found it online but cannot attach the link.
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Hi Guys- half way through chemo (day 39). Anyone have a balding spot of this size? thoughts? I'm panicking!!!!!
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hi barremom, sorry I don't have any tips about a localized area. You still have a lot of length all around. Others have talked about sprays and hair fiber thickening sprays, but I haven't used them. When did you start noticing the loss? How many treatments have you had so far? I'm on AC every three weeks. It sucks. I'm sorry. Hugs.
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Barremom, this is hard to say, but honestly that is not typical on TC chemotherapy. Usually, you might see bald spots around the ears or the nape of the neck where the caps don't provide good coverage but not on the top of the head. Did this happen all of a sudden or has it been gradual?
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Thanks for the feedback Gatomal & jc254- I just bought Toppiks to fill in (thanks Daniella for the tip!) I haven't tried it yet, but I'll post a pick when I do. This balding area has been gradual. I'd say I lost 50% of my overall volume BOOM days 20-26. I'm approaching treatment #3 of 4 this Thursday. Hope what I left holds on. I do see lots of grey coming in and baby hairs so I guess there is some growing continuing...she said hopefully:)
Just to remind everyone Im using the Paxman system not Penguin. The caps are sized small, medium, large & xlarge. I guess the cap was to big at crown or just didn't work there
I'm bummed for sure...
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