Cold Caps Users Past and Present, to Save Hair
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I'm back after three long and very cold days without electricity because of an ice storm in the Philadelphia suburbs. Welcome to the new cappers. Sweetmom, make sure you allow enough time to practice before chemo starts. Watch the video, try it out and then come back here with questions. We'll help you through it.
Warrior, since you seem to have the big shed pattern, maybe you'll avoid a long shedding period after chemo ends. Just keep concentrating on the hair you still have on your head. It may not look very pretty right now, but the caps are working!
Schoolmom, we're here for you whenever you need to vent.
Happy weekend everyone
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Sarah - Thank you again! I am following the protocol with washing my hair and have the dirty hair to prove it. Little comes out when I shower but a ton comes out when I gingerly comb it afterwards. It takes a good 45 minutes to comb though it. Yesterday I filled an entire snack size baggie. It has thinned around my crown but my ears, nape and forehead all seem OK. Yuck. But the toppik fibers should arrive today and help me to get through this. As I see it, I still have hair on day 25. If this were not working I'd be bald, bald, bald by now. ~ Brina
JC - Welcome back among the electric people. PA really got hit hard as did many in my NJ area. I assume the caps have to be working or by now I'd have little left. Few people keep this much this long without the caps. I assume it's all my OLD hair and perhaps I just have a lot of OLD hair. I do hope it slows up and I don't get hit at the end as so many have. By that time, some new hair will hopefully be growing in.
Corrine - Welcome. I am a couple weeks ahead of you. It sounds like you're doing very well.
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Today was hairwashing day. It is such a production. And definitely pulled more hair out than usual. My mom found a great watering can-like nozzle that we put on an empty plastic bottle for rinsing since no faucet in my old house fits a spray attachment.
What do you do with your hair when you take a shower? Leave it down? Shower cap? Do you use the leave in protectant, like the Kenra, everyday before combing or just shower days? I'm such a hair product junkie that it is a daily struggle not to put something in my hair so it isn't so dry.
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Connie - I've read on here that many women use shower caps during regular showers and I have too. My hair is too long and it will get soapy if I don't put it in the cap. It has not been a problem for me. Hope gave a good suggestion of using men's tee shirts rather than towels for drying. It seems like the rule of thumb is that less is better. Some women have used products but you'll want to be careful of the ingredients. I've predetermined that my hair will look like crap for a while. This is the sacrifice for when the time comes that I can walk away from this mess. I plan to get my hair well cleaned up when all of this is over and have one less reminder of cancer.
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I am 12 days post 1st TCH and I am anxious about what the next few days will bring. Does anyone have suggestions for dandruff. I am noticing some flaking in the front.
Warrior Women- I am keeping fingers crossed for you. I think I will follow your lead and order the Toppik
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I'm 15 weeks PFC and I wanted to give an update. This picture on the left in the green sweater was taken at my son's birthday party today. My hair feels full and healthy, and while I still see hairs come out in my comb or brush, I'm not convinced I'm loosing any more hair regularly than before chemo. I can see 2-4" hairs filling out underneath. You can sort of see the shorter hairline under my bangs. For fun I calculated when I would have been 15 weeks PFC when I did chemo in 2007 without caps and found a photo from that time. My short hairs look very similar to this photo.
I still don't do use a flat iron or do a full blowout or use hairspray or products except a tiny bit of Moroccan oil. Today it was a frizzy because I just washed it. I continue to use DermOrganics Shampoo and Conditioner 2X a week. I started using warm water 2 weeks ago when I had my breast revision and had to switch from baths to showers. Not scalding hot, but warm enough to shower comfortably. I sometimes use the blow dryer on cool for my bangs and the curling iron, but mostly I air dry. I colored my hair last week with non-ammonia color. I don't miss the gray, but the color seems a bit to dark but my hairdresser says it will look more natural as it fades. It still feels weird to have brown hair since I had red hair for so many years.
15 wks PFC - using cold caps 2/7/2014
approximately 15 wks PFC - not using cold caps (lost hair) 12/2007
The reason I did cold caps was because it seemed to take so long to grow my hair back out to shoulder length. Years in fact. Everyone said my hair looked cute short and for that matter bald. I still don't identify with that photo on the left. It doesn't feel like me.
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atlbc - You may not need the Toppik fibers. Most people kept full coverage. I'm just lucky enough to see a bit of my scalp on the crown of my head which is such an obvious place. Heads up (no pun intended) it's pricey. You'll need the applicator tools along with the fibers. If you determine you need it, the shipping is quick. I received it in a couple of days.
Marsha - What great photos to post. They really show the difference capping makes. Should my hair fall out and someone say to me that I look cute bald I will slap them silly.
I have a party to go to today and I have to fix myself up. My right eyebrow is thinning but not my left so they're uneven as are my lashes. My skin looks like I've aged 20 years. My hair will get fixed with Color Mark and Toppik. Hopefully nobody says that I look cute undergoing chemo. That would be a huge mistake.
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This has nothing to do with CC, but I lost my eyelashes for a second time post chemo...the tape used to keep my eye closed during my last exchange surgery 3 weeks broke them off. I couldn't believe it when I went to put on mascara the next day, so now I'm back to false eyelashes until they regrow! Geez...who knew they'd be so fragile.
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hi guys. I just started chemo 2 weeks. Ago.and my hair is. Thinning now i dont know What To do.i am in the philippines and yes Options here on how to save my hair isnt that big.i JustDecided to cut it short now,can. You. Guys. Help me out or maybe explain waht cold caps is.please?
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onchemonow, Cold caps are used during chemo to constrict the vessels so the chemo can't reach the hair follicles. If you've already done chemo they can't help at this point. They could protect the follicles during subsequent treatments, but most people do not bother with them after they've lost their hair.
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Marsha, it really must be extra special for you to keep your hair since you lost it the first time. I'm glad the caps worked so well- your hair looks great! Thanks for posting the pictures, it really helps newbies to see results. I'm working on posting some of my own soon.
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girlwith - I used one of those turban type towels (you can get them in the drugstore) to keep my hair dry while I showered. Also, I got a ketchup squeeze bottle and used that to rinse. It got up close and direct. I am about 12 weeks PFC and still wash with cold water although I started using the shower nozzle the past few weeks (cold for the hair, then warm it up for the rest of me). I also use an organic leave in conditioner after every shampoo (along with the regular conditioner) to keep the hair from tangling. I am still shedding. I feel like I've lost more since chemo than during, but I still can't complain.
Warrior - Anastasia brow kit from Ulta is awesome. My brows finally came back in, but I used it all during the holidays and after when my brows were so thin as to barely be there.
Marsh - Your hair looks great. So glad you found the caps!
A friend told me today that she felt badly because she felt like she under appreciated what I was going through since i didn't look sick during the chemo and radiation. I feel like the caps allowed me to suffer through treatments privately and on my own terms. I didn't feel sick before my diagnosis. I didn't feel sick until a few days after that first drip in my arm. And I don't feel sick now, 12 weeks PFC. When you don't have hair, everyone thinks you are sick. Really sick. I just think that crosses over mentally and emotionally into your psyche and messes with you. Because of the caps, I don't feel or look sick. And I don't have to live life as though I am sick. Which is awesome.
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mfm48
I love your last few statements about not feeling sick and better yet, not looking sick! I agree completely!!!
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mfm48~
I agree. Before I began treatment a lady at church who did the same chemo as me, TCH, said I would be spending most of my time in bed. I know everyone is different but I did not want to be that person. Yes, I did spend the first 2 days after each chemo laying low but I was determined to be up and doing things with my kids if I was able. I believe the cold caps helped me in that process. As long as I was looking like myself I was going to try to act like myself.
On a side note, the phone rang the other day and the lady said she was collecting money for breast cancer. I said we could not afford to give at this time. She then said "Oh, if you only knew what these women have to go through on a regular basis."
I burst into tears. She was so apologetic when I told her that I DID know and that she should really not be saying those types of things to people on the phone when she has no idea who is on the other end and what they have gone through. I was surprised at my reaction as it has been over 4 years but I guess the emotions are still there under the surface.
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Amy - I'm using the Brian Joseph's brow and lash conditioner and one side of my face looks normal and the other side has one skinny brow and a set of lashes with a clump missing. I didn't think people lost brows and lashes this early as I'm only past my 2nd TC. I did hear many lose them several times over after chemo.
mfm - The Anastasia brow kit is on my list. Everyone raves about it.
On the flip side of this experience, because I look OK people don't realize how crappy I feel and I am not getting the sympathy I want from others. Last night I helped clean up at a friend's party while others sat around and handed me their dishes. Really? The chick getting the chemo is cleaning up your mess while you relax comfortably? I was asked what side effects I'm experiencing and after I ran through the list the response was, "Oh, that's not bad." I want sympathy, darn it! Keep those flowers and fruit baskets rolling in.
Ang - I've had that same experience of being asked to donate to breast cancer causes. This entire experience has led me to taking some rather strong positions about which organizations I wish to support and which ones I do not. Interestingly, I've been asked to give money and when I've inquired about where it's going the collector simply replies, "For breast cancer". Huh? That's not an organization. They don't even know what they're raising it for. BCO and the American Cancer Society are two BC organizations I am happy to support. Beyond all this, there is a quote on the wall of my cancer center that reads, "Be kind, for everyone you meet is fighting a hard battle” ~ Ian Maclaren It rings so true and I think of this often.
My daily hair update - I asked my husband to help me with the Toppik fibers and it turns out I really don't have any visible bald spots. I guess I'm looking too carefully.
Good news - My exchange surgery is scheduled for the end of April. Chemo will have been over for a month and I'll be getting my new boobs just in time for Spring! There is a light at the end of the tunnel!
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Warrior-I feel the same way about all these organizations profiting from breast cancer. Most of the $$ goes to Administrator's. There are a couple I would consider donating to:
Breast Cancer Action http://bcaction.org/
Breastcancer Fund http://breastcancerfund.org/
Rapunzel Project http://www.rapunzelproject.org/
Be sure to watch Pink Ribbon's Inc.. It's available on Netflix.
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Warrior Woman, I never lost my eyebrows and eyelashes until long after chemo ended. I was being so smug about it thinking HA I dodged a bullet and then boom - lost em all practically overnight about 8 weeks PFC. Good luck to you.
Amy
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Hello everyone,
My mother will be starting chemo soon. We are trying to prepare. She does want to use the Penguin Cold Caps. I wanted to know if it takes long to get the cold caps. There's so much that we didn't know. We have to get a thermometer. I knew about the dry ice. I guess we are going a little crazy.
I'm trying to find someone that she can talk to. I've been trying to read through this thread, but it's so long. I don't know where to begin.
Any suggestions would really help. We are both located in Wisconsin.
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Warrior, I know what you mean about the lack of sympathy. I worked fulltime during chemo. My boss insisted that I was able to travel for business during chemo because "I looked fine". He also complained that I was leaving at 5 o'clock. I was thrilled that I was able to make it until 5 o'clock. I'm sure if I was bald and looked like death warmed over he wouldn't have been so insensitive. ...and that's why I'm now looking for a new job.
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Marsha - great pix - you look wonderful. I like your hair both ways! But I know what you mean - when you're going through this process you just want to feel and look as much like yourself as possible. You feel at least a little bit normal when your hair is closer to the way it has always been.
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Hello All,
My last chemo was May 9, 2013 and last Herceptin January 16th. My hair was to the middle of my back when chemo ended and I had it cut to my shoulders about two months later. I have dyed my hair 3 times since then. I tell everyone I can about the success of the cold caps. I wish my eyelashes were doing as well. I've lost them three times since the last chemo and they grow slowly and thin. The hair on my head is the opposite...complete fullness. Here is what's my hair looks like now.
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deelightful-
I am not located in your area but I think all of us would talk you and your mom through the cold caps. Let us know...
It can be so crazy starting chemo.
Ang
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Rhonda - wow your hair looks great! Love hearing success stories. Same here with the lashes. Mine fell out near the end of chemo - then came back in relatively quickly. But I seem to be going through another round of lash-loss right now. Hope it stabilizes soon.
Kay
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Thanks Kay,
I have read previous posts where it happens with the eyelashes so I'm like you and hope that this is temporary. Good luck everyone.
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MakingWay - Yep! Rapunzel is another one I'm glad to help. Every year my students raise money for (cough cough) Komen. I look the other way as they are well intended and trying to do good. Next year I am going to suggest they do something locally such as secure a freezer for the local center and help Rapunzel. I'm looking at those organizations that have reached out to help me post diagnosis. Charity Navigator is one tool I use to determine my planned giving. Charity Navigator
Delightful - The process of getting ready feels overwhelming but it has to get done in order to make the caps work. I did it myself in a week. I recommend air shipping as the weather at this time of year can delay receipt of the caps. Once you have the supplies it is simply a matter of getting organized for each infusion. I get set up the day before chemo and then just do it on chemo day. It's a lot of work but it takes the focus off of all the other stuff chemo gives you to worry about. My capping friends have done a great job of actually making chemo fun. I love them for it. Post your questions here and I am sure people will give all sorts of helpful advice. You can also call PCC and talk with them directly.
Rhonda - Great pic! Your hair looks terrific and I cannot tell anything is going on with your brows and lashes. Everyone says Latisse works well for regrowth of lashes.
JC - It is my understanding that BC is covered by the ADA and your employer must make reasonable accommodations. I would think a simple note from your MO restricting your length of work day is more than reasonable. I'm not an attorney but I'd consider looking at this before putting yourself through the job hunt unless you just want out of there anyway. My MO will write anything I want him to write. I really ought to be more creative in my requests. I've taken off work because it's just too much. It isn't often that I go through this level of medical need and I don't want the added stress. Besides, I don't want my hair falling out at work. LOL
I'm heading out for the day and getting ready for my daily traumatic hair combing. EEeeheheheheeeee! Have a great cancer free day everyone!
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Well, I'm 12 days out from first round of TC using CCs. I have been anxiously following all of your convos regarding shedding and am growing more anxious each day. I haven't seen much hair loss yet but I know I'm getting close to the time when it will start. I noticed the hair on my arms fell out almost immediately after the first round - still have my eyelashes and brows but they've always been thin anyways and not something I ever bothered with. I am having dreams now of my long hair falling out in clumps in my hands. Sounds like this is pretty common though. I just wanted to check in and say thanks to ALL for your advice and help in getting started using CCs. This forum has been a life saver for me along with my CC rep. I was also lucky enough to TALK to a real person who lives near me who used the caps and kept most of her hair. So fingers crossed, I will remind myself each day to have faith in this process and trust all my CC sisters who have shared their stories and walked this terrible road before me.
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I cannot decide to try the caps or not. I am very cold natured and not sure I can stand the cold with the chemo. Was it bearable and worth it?
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2-boys mom, there has only been one woman on this board over the years who tried the caps and found them to be too cold to bear. The rest of us had varying amounts of discomfort, but I think we would all say it was worth it. I dressed warmly (long underwear, sweat pants, camisole, flannel shirt and zip-up fleece) and had both a heated recliner chemo chair and an electric blanket. None of that mitigates the painful cold sensation on your head, but once you get through the first couple of cap changes your scalp is pretty much frozen and you really don't feel it that much any more. Some women use tylenol or another over-the-counter pain reliever before the first cap of the day. Good luck making your decision.
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rhonda, you look beautiful!
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Yes, Rhonda - you look great! Thanks for posting your 'after' shot
2-boys mom, I HATE being cold, so I had the same concern. The first cap is very cold like you're getting a brain freeze, but I would just do deep breathing and kept talking with my cappers until the initial shock wore off - after that, the subsequent caps don't seem that cold and in fact as my team reminded me, every time I told them I didn't think the caps were cold enough. What helped me was taking 2 extra strength Tylenol and a Xanax an hour before treatment, kept me very relaxed. I think I also had Ativan in my IV. Icing my fingers and toes was harder than the caps! I wish you the best with whatever you decide, and if it's the caps, we'll be here to support you all along the way!
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