Cold Caps Users Past and Present, to Save Hair
Comments
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Well, as most of you I had "coverage" all thru AC, but as you can see AC is a "hair killer"...
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Hi Ralston- if it makes you feel better .. you have more hair than me!
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Happy Labor Day Everyone.
Ralston: Thanks for the pics. I have about the same amount of hair as you and today I am 14 (WOW) weeks PFC. Still shedding but definitely slowing down. I think in a few weeks, I will cut the straggly long ends. My daughter went through my hair last night and says it is coming in strong - no bald spots. The hair along the back, where the caps didn't reach, is about an inch long and coming in nice and thick again and the color is red and feels like my normal kinky hair. If I pull up my scrawney ponytail, it looks like I shaved my head and it is coming back. I'm so happy that I used the caps. Oh, lots of new hair around the ears and 'sideburns' too.
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LivCar - Dear, I still have 12 more weeks of Taxol.... Not sure if I will keep using the Cold Caps... They make me feel so sick
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Ralston you look beautiful! you have far more hair then I do. Thursday is my 4th TC. I know you have struggled and I get wanting to not do them, only you can make that choice and whatever you decide we will all be here for you. Sending hugs
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My scalp is really sore. I am not sure if it's a SE's of my last AC or it has to do with the "hair loss". It doesn't feel like a headache, it feels like when you put the cold cap for the first time. It's that pain that make you feel sick constantly. It's like my scalp got tired of releasing hair, like is overworked... Kind of the pain you felt when your mom realesed your ponytail when you where a child. Did anyine experience any kind of "painful/sore scalp" while shedding?
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Hi Ralston yes my scalp hurt during treatment. It was a tingling burning feeling. usually if I washed my hair it subsided. I used SLS free shampoo called Aubrey Organics from Whole Foods. good luck to you!
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No, it is not burning or tingling... It just hurts... and it not the head it the scalp.
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Sometimes mine hurt like I had a pony tail in too tight or something...is that the feeling?
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Mdg - Exactly!!!! That's the feeling.
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Ralston-mine felt like that a lot. especially after I lost a bunch of hair. I just took advil, my go to for every ache and pain
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Mine has gone away. I noticed it more during treatment and from time to time post treatment. I have not had it in a while...I hope it goes away for you soon! I have not had that pain in quite some time.....at least you know you are not alone!
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I too had that feeling and it went away. Like MDG, I haven't felt it in some time.
I had a visit with my BS and we discussed follow-up tests. She said that I won't have a mammo or anything on the affected breast for at least a year and probably longer...reason being that a mammo, etc. would show a tumor with all the 'stuff' that has been done to this breast. I asked how we'd know if the cancer has returned to that breast and didn't get a clear response. Is this what everyone else has heard? Note: I had a lumpectomy. Thanks, Arlene
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Hi everyone,
I am now almost 8 weeks PFC and just starting to see new hair along scalp next to ears that apparently caps didn't cover or get cold enough. It is growing back totally grey and fine but at least it is growing. For awhile, I was worried that chemo might prevent any new hair growth permanently but I guess that is very rare for that to happen. I still have my hair, albeit dry and needs a cut and color badly but it seems shedding is starting to slow down a little. I can now see fine 1/8 to 1/4 inch hair growing on arms. Wierd to be hairless everywhere else. I now wash my hair 2 times/wk still with cold water, but Head/scalp still itches a lot at times- any suggestions on how to alleviate itching??
San Francisco Bay cold cap users- we are planning a get together. I have had 4 people respond so far. Please PM me if you are interested in getting together with former or current cold cap users. Let me know if you have a preference for day or evening get together or weekends only.
Hugs to all Connie
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Arlene: I had a mamo 3 months after my lumpectomy. I felt this was way to soon but they only did the breast that had the lumpectomy. I am not sure what the protocol is.
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its a good question about testing. I had a friend ask me "so will they test you when you are done to make sure they got it" . I have no answer
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Connie - I added just 2 drops of apple vinegar to my shampoo (as Frank advised) dilute with cold water and it worked for me, but I also had crusts on my scalp. Are you itching because your hair is growing or because your scalp is too Alkaline?
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just back from meeting with the RO. Everyone was so shocked, "Is that your real Hair?"
proudly I said yes!
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I liked it Nancy!!!
I love the idea of pins!! Don't give it up!
Elizabeth
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I just purchased two t-shirts from CafePress. They have a little penguin doing a fist pump and under it says Penguin Power. I have made iron on t-shirts in the past but I like the design (I have a professional press). I plan to add some words maybe like "Ask me about keeping your hair during chemo". I 'll wear it to my medical appointments and when I help others with the caps. I might even mill around near the Koman Breast Cancer Walk if I can find a prominant place to be seen. I'll take a picture when I get it made. I've never been able to post pictures. If someone can help me or I can e-mail the photo and you can post, I'd be happy to do this or any other design for you all. Julia
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Hi all!
I just got denied by my insurance company for the cold caps. Any suggestions?
Elizabeth
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Hi Elizabeth~
I am working with Frank and BCBS to see if I can get money back. The international BCBS seems to think I will...we shall see.
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I am with BCBS as well. I will write to Frank, I guess.
Thank you!
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Elizabeth: Appeal the insurance's denial. It is typical to be denied three times before they approve things including with standard medical procedures -- since they are for-profit, they literally bank on people not having the stamina and wherewithal to continue advocating for themselves. If you can make contact with a human being in the pipeline somewhere, that might help. If you get your insurance through your employer, see if their HR rep can help walk the claim through. (I had to do this when my absolutely routine, run-of-the-mill radiation treatment was denied two times by Blue Cross! We got it approved within 48 hours of my window of opportunity running out. It was scary -- I had reached my million-dollar cost mark, and everything has been denied ever since. You know those "death panels" that were referred to in the last national election? They already exist -- at the insurance companies. End of editorial, sorry...)
dexxy: congratulations on surprising your care team and keeping them as positive as you! Your vibrant spirit is contagious.
Ralston: thank you so much for posting the pictures. Your hair is thinner than it previously was, but I have to say, I would *never* look at you and even wonder if you were a chemo patient! AC is really rough on the whole system -- liver function, hair -- and you still have more treatments to come, but ones that are gentler on your system than AC. If you decide not to continue with caps, please don't let it feel like a failure or anything -- you've got a lot of coverage still, just a couple of thin spots -- and, like I said, I would never meet you and think "cancer patient" or even someone who had lost hair somehow.
I got to go on the field at the Oakland A's baseball game this weekend, for Breast Cancer Awareness day. I confess I'm not much into the pink ribbon world, but I was invited for this, and being a baseball and A's fan, couldn't resist. Wow, was it ever powerful. 600 women (and men), many older than me, some younger than me, some just like me. We got pink jerseys to wear, had a tailgate party which was a blast, then took the field forming a human pink ribbon. They released three crates of doves, doves of hope, which circled around us and the stadium several times before flying off into the sky. Then, at the last word of the national anthem -- "brave" -- we released 600 pink balloons into the sky. Meeting and hearing the stories of women who are 5-year survivors, 12-year survivors, 20-year survivors...wow. It was inspiring. One woman speaker has been 3-years cancer free, and commented that her hair has finally grown back. I thought to myself, there is so much more work to do! So many women need to know about this option for many kinds of chemo. It reminded me of how lucky I have been through all of this.
It was also powerful to see the friends and family of the survivors. And as we came into the stadium we got a standing ovation from the crowd, and were saluted by ball players from both teams (who wore pink arm bands for the whole game)...I only cried about 5 times. Plus, we won the game :-)
Hugs to everyone,
Susan
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For those considering doing cold caps and want to see before and after photos....I just posted photos on my bcblog. Link is below - FYI.
As far as my hair's latest update, the shedding is slowing down (finally). I hope it just stops. I completed chemo the first week of May. My shedding has been worse post chemo than during chemo, but I still have a full head of hair. If the shedding stops I will be OK. No one can tell I had chemo....no bald spots or anything. I look normal. I am washing twice a week - still in cold water since my shedding is taking forever to stop. I would say I am shedding more than pre-chemo but less than the past two months so it's a step in the right direction.
Oh - I never tried to get cold caps reimbursed. I have AETNA and they said on their website they will not pay for them....bummer. Oh well. I hope BCBS pays for them for you gals. I never got a wig during chemo...I kind of wanted to anyway and just donate it for someone that could not afford a wig because they would not pay for cold caps but I never did it..... I am sure they would have paid a significant amount for a wig. Why can't they just pay that amount towards my cold caps??? Why should it matter to them how I have hair - real or wig??? They will only cover a wig...rediculous. I am appreciative of having good insurance but it's a bummer they don't approve cold caps.
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Hi All: Hope everyone had a great Labor Day Holiday! My party was great, everyone had a wonderful time, the food was fabulous and I thanked everyone for being there for me this past year.
Ralston: I hope you stick with the caps, because your hair looks good. Plenty of women have thinner hair and don't even have or haven't had cancer. I never paid attention to the pain of the cold or anything, I just concentrated on keeping my hair--which I did!!! You will too!!
Susan: Your day at the ballpark sounds wonderful!!
By the way I colored my hair last week with Clairol Beautiful Collection-no ammonia/no peroxide. I used dark brown-my natural color and it came out a lighter brown and where I had Very grey streaks it turned blond, so it looks like I have blond highlights. Looks good! I kinda got used to the grey and silver streaks, they did look good too! It was the way it streaked. It was very dark brown, almost black, which was always my natural color, with silver and some white streaks in very strategic spots. Even some men liked it and said I looked like a silver fox--and not the "animal" kind, the sexy kind!!
Keep Positive!!
Nancy
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Thank you! I realized that the photos don't really show my "chemo-patient look"
, so I decided to experiment with other people's reaction (just to make sure that I am not the only one who thinks my hair doesn't look that good in person). I went to Whole Foods and I though pretty much everybody could tell that I was wearing my "chemo-look", so finally I asked one of the ladies who keep staring at me if it was that obvious that I was sick, well, let's say that it was the wrong approach 
.... Anyway, I finally asked the cashier (who also was staring at me), "You know, as you can see I am losing my hair, would you know if someone can recommend a shampoo?" Her answer was, "Well, my mom had chemo...." Well, she told me everything that I need it to know by then.... I am okay, I bought a Jessica Simpson Fridge Hair Extension and it works pretty well.I think I will try to keep doing the PCC at least the first weeks that I am having Taxol, but please, all of you that do not have pain or feel sick while wearing them, keep in mind that anything that cause nausea drive us away from it in the future. For example, if you had food poisoning from green chili 30 years ago, probably today you still can't stand it, Similarly, it is easier to condition the body to associate pain with light and sound stimuli, as most pain producing events have distinctive visual or aural components. Well, I associate PCC's with nausea and pain. Funny, I have never feared my chemo treatments, but I am terrified to wear the PCC now. I suffer just thinking of the next day I have to wear them. Eeeeeackkkk!
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Oh Ralston~
There was another lady who had that same association with the PCC's when I was first starting all of this stuff. I cannot remember if she had any tips on that but I will try to scan the earlier posts and see if I find anything.
Hugs to you...
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Ralston, You are absolutely right about the long-term effects of the associations. It's a real thing, and significant to deal with. I didn't develop a physical reaction to the cold and had no nausea, but I did develop a reaction to the smell of the plastic, of all things. The pit of my stomach sank even when handling the caps on a non-infusion day. I have a sample cap which I use for coaching, and the first time I pulled it out this spring, it overwhelmed me.
If it's too much, don't worry about continuing! The point of the caps is to alleviate a particular side effect (hair loss), but if it's causing you other SEs (nausea, fear, panic, etc.) then it might not be the best choice for you. Big hugs to you.
Susan
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I also had severe nausea in reaction to the cold caps. My first infusion was delayed almost an hour because the cold caps made me so sick pretty much as soon as I put the first one on, and they didn't want to start chemo when I was already so nauseous. So I opted to stop the cold caps, and didn't use them for my second infusion. My hair is starting to fall out now, and I'm having some feelings of regret about stopping, but I just couldn't handle the nausea
I really admire all of you who have toughed it out, and wish you best of luck in keeping as much hair as possible!0
