Cold Caps Users Past and Present, to Save Hair
Comments
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Chelsea - I think most of us had our heaviest sheds after our second treatment. It doesn't come out in bunches or from any one area. The oldest hairs simply give up as they are not as strong and are shed as SuzieQ described. They slowly slide down and constantly have to be picked off clothing. I found mine all over the house.
It's amazing how much hair we actually have on our heads, over 100,000, so losing a few hundred a day is not much, overall.
There will be one shampoo or possibly two during the peak of her shedding - right after the 2nd infusion - where it seems that a lot comes out, but tell your Mom to try to be brave and not worry. It's normal and she's not going to lose all of her hair.
I kept the hair I lost during shampoos in separate baggies as I was curious about what was going to happen. I started by keeping the hair from my last two shampoos before starting chemo so that I would have a reference to use to know what was normal. The first two weeks after my 1st chemo began were about the same as before chemo. The amount lost started to increase right around the 2nd chemo.
Between the second and third treatment was the heaviest, then it tapered off. Each shampoo session was somewhat nervewracking as I mourned every hair lost, but as I look back, I realize I was never in danger of going bald.
I did slowly lose hair on the rest of my body. It seemed to thin out then vanish from my arms, legs and underarms - and is still thin, meaning I do not have to shave much which is nice. I waited to lose everything down south, but while I ended up with a sort of chemo Brazilian, the hair in the creases of my legs remained. I lost my eyebrows and most of my eyelashes after my third treatment, which made me look so bland as I am pale with light blue eyes. It's surprising how important those are as facial features. My eyebrows started coming back right away which was nice. My eyelashes took longer.
Be sure she ices her fingers and toenails during Taxotere.
Your mom will be fine. Please give her my best. You are such a good daughter.
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Well ladies, 5 1/2 months post final chemo. I think we are all different on this journey is an understatement. It is reassuring though to hear the story of someone who seems to be similar to ours. I had thick long hair and shed from about the second infusion to about 6-8 weeks after final one. I thinned alot. Lost the hair at nape of neck , behind/over ears , temple and back of head. It continued to grow throughout treatment and over the months the regrowth varies I think as to when the hair shed. I have some places with almost 3 inches of regrowth and some with about 1 inch. It is definitely starting to feel more normal but through the panic that I had lost so much I kept reassuring myself that I do have hair, I do not have a wig and only me and close friends notice. I pretty much decided to give it a year after finishing to have normal hair again so I have 6 1/2 months to go. Maybe Christmas time. Plan to have a real haircut before going back to work in Aug when school starts up again. Jumping in and out of the pool a few times a week leaves my new curly locks as my grandaughter refers to as "crazy" . She is 4 and has straight hair and does not understand why my normal straight hair is now curly. For me the eyebrows and lashes thinned about a month or two after final chemo. I used latisse prescription and they grew back quickly. It was not covered by insurance and cost about $100 for a tiny bottle but it made it through when I needed it. If this helps anyone, that is great. Hope everyone does well.
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My experience has been pretty similar to SuzieQ's as far as hair loss. I continue to shave my legs but not as often and I still have the hair on my arms. My eyebrows have thinned but are still hanging on and my eyelashes look ok for now. I never really experienced an alarming big shed moment, just steady shedding with each hair comb and wash. The most shedding has occurred over the last few days, right after I finished my 4th (and final) treatment. This is the first time that I've noticed random hairs just kind of sliding down my arms. It's a little nervewracking, but I still have a lot of hair left so I figure I'll get through this without noticeable hair loss. Just hope the shedding doesn't continue for months...
I also did not ice my nails. It seemed like too much to be icing nails while also having the cold caps on my head so I took my chances. My nails were strong to begin with and they made it through treatment fine. Can't wait until my white blood cell counts come back up to normal levels so I can get a proper manicure and pedicure!
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Hortense, schoolmom and JC, great to hear from all of you!!!
Schoolmom we were going through the capping at the same time. JC a bit after I finished, and hortense your posts were an inspiration when I was panicking about the "big sheds", since you had just been through it. Thank you all.
I only lose 2-3 hairs in the tub strainer now so I think/hope the shedding is over. I start radiation tomorrow and hopefully the stress of it all won't make me lose hair! (and I wont tear it out).
Good luck to all cappers, we are rooting for you!0 -
sciencegal - radiation is easy, a breeze, compared to chemo. Just be careful with the creams you have to use as they can stain your clothing. I was told to use Aquafor and while it certainly worked, it also grease stained almost every shirt it touched. Not even Oxyclean in paste form, soaking overnight and hand scrubbing could get rid of the stains. So, be careful about what you wear right after slathering up. I would advise using your oldest t-shirts and be resigned to tossing them after you are done. Definitely wear something as protection, like a tank top, underneath any nice clothing.
I drove over an hour each way for my six week treatment and found I was able to do it by myself all the way through. By the end I did get tired, so I took it easy and would stop to wander through stores I was curious about or to get something to eat. My pale skin eventually turned a deep tan/brick color in a 12" x 12" square where the radiation hit. I developed some blisters along the lower edge and outside edge during the last week or so, but they were not too bad. I kept myself well moisturized after each treatment and did not wear a bra unless I absolutely had to do so. The nurse had me use long telfa type pads during the last two weeks to cover the area to prevent any chafing. They stuck nicely to the Aquafor
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Thanks Hortense- again you are an inspiration!!! I appreciate the positive post.
I definitely have some "disposable" clothes to wear, that I wont mind getting rid of after the staining.
I will tuck them into my radiation supplies bag today.
On to this next adventure (with hair - the rads techs find that so interesting) -thanks!0 -
I'm a little confused on the sheddng process I've had 5 rounds so far with our shedding. From reading the boards here it sound like people are shedding at diff times.. some shed after chemo is over? Some say big shed it after round 2?
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Round 6 tomorrow. This will be my second round of T (placlitaxel) and I hardly feel ready yet. I have only just started to feel "recovered" from the first round.
My onc doesn't want to reduce my chemo drugs because of the size the tumour had been, so she prescribed Hydromorphone (morphine) to help with the muscle pain. I guess that's one way to get through it. lol
Shedding has dwindled down to almost nothing. It will be interesting to see what happens in this next round. I've had the feeling that there's been less but I figured as the remaining hair thins, it will appear that there is less falling out - percentage might be the same. Does that make sense? And though it appeared that less was coming out, I did develop those very thin areas around my crown. Guess we'll see what the next round has to "offer".
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LeslieVilla, I had virtually no shedding at all either during or after chemo. Maybe just a tiny bit more than usual, but hard to tell because I wasn't washing my hair every day. I had 12 weekly taxol treatments. My hairdressers could not tell any difference at all in my hair (other than that it was very long and I had long gray roots!!!). So maybe we're just the lucky ones who get through this without losing much hair at all.
Maybe 3 - 4 months after finishing chemo, I did go through a period where I would run my hands through my hair and always get several hairs that came out. By this time I had re-started coloring my hair, and I could tell that the hairs that came out had stopped growing, because they had no gray growth at the root end. (Virtually all my hair is gray without my colorist's help.) But still, it was minimal and has stopped now.
Shipsgirl, I sure hope your 2nd round of taxol is easier than your first. As I said, I think the cold caps work extremely well for taxol, so hopefully your further shedding will be minimal!
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Hi everyone! I am new here. I do not have breast cancer but have been battling a rare form of cancer called sarcoma for two years. I found this board after doing some research on the penguin cold caps. I have been through chemo once already and losing my hair was devastating. Well recently I found out my cancer is back and I am heading back to chemo this week:( I will be trying the penguin cold caps this time around to save my hair. So happy that my onc agreed to the cold caps! so of course i have tons of questions! i was sent the white caps...has anyone on here used the white caps?? Are they the same as the blue caps?? As successful?? Geralyn assured me that they were. Also I have short curly hair...regrowth from my last bout with chemo. Anyone used the caps with short hair?? Recommendations for curly hair please!! Should I use the gel bands?? The caps seem to fit my head pretty well so I'm unsure if I need to use them. Sorry for the long winded message with tons of questions but everyone on here just seems so knowledgable:) thank you for any advice or guidance that you have for me!
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Hi Wbk79
I had the white caps and they were definitely a success. I finished 4 rounds of TC on June 6 and have probably 95% of my hair with most loss happening over my ears. You cannot see this unless I lift up my hair. You would never, ever know I had chemo. My worst complaint is gray roots in my dark brown hair. Not a bad complaint vs being completely bald by now. And my hair GREW during chemo (hence the roots that get harder to hide every day).
I got the gel bands but never used them. I had enough going on with the caps. As I mentioned though, I did lose hair over my ears.
I had a checkup with my surgeon today and she was STUNNED at my hair. She called out the office workers whose jaws dropped. She had never heard of cold caps and wanted to tell women about them as she is normally the first step before being referred to an oncologist. She asked for the website and is going to research it. I also told her of the recent UCSF study with Dignicap.
I told her I took up space and time at the clinic with my coolers and she said "I don't care! Allowing women to keep their hair through chemo is worth the effort!" Anyhow, she plans to do the research and hopefully refer other women to know they have an option. Awesome!
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Wbk79, I'm so sorry you have to go through chemo again. I have relatively short hair (not curly, though) and my only suggestions are these: cover your ears (some used pieces of pantiliners) if your hair isn't long enough to cover them (my hair though short was insulation enough). Also, at first my hair wasn't long enough in back and I needed to tuck a folded up hankie or my shirt collar into the cold cap to keep my neck from freezing. Soon enough my hair grew long enough to protect my neck and it wasn't a problem. I didn't need to use gel bands as the caps fit my head very well. Good luck! I'm glad your onc is supportive.
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SusieQ, that is a great story!! Love when people get the professional support. I hope all professionals will get behind us and help spread the word.
My onc was very dubious and each time we met, she refused to be impressed that I still have hair. Two weeks ago, I finally felt like we connected a little and she got my commitment. Yesterday when I saw her, she was a little warmer. I have about 60% of my hair now and she was sympathetic at the obvious thinning but also somewhat encouraging. She said that if anyone was going to keep their hair, it was me.
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I am having #5 of 6 TC next week and still have 75% of my hair. Although I am a little nervous as there's still fairly significant shedding but people who do not see me very often are always amazed at how good I look and at all my hair. I would say, PCC has been successful for me. I mentioned last month that the hair on my legs, underarms and chin (yippee) are gone so I know the TC would have caused hair loss on my head, however the puzzling part is I still have my eyebrows and lashes...mind you I am NOT complaining.
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Amy - I didn't lose my eyebrows until 4 weeks PFC...so don't be surprised if there is a delayed reaction. I never did lose them all at once, and my lashes only thinned, thankfully.
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Welcome wbk79! You are welcome to hang out with us BC gals! So sorry that you have to go through this again. I can't help with short hair at all, but all of my tips and photos are on my blog (link below). Good luck! I hope you have great success too!
Amy - I did not lose lashes until about 7 weeks PFC. With latisse on board, they grew back SUPER fast. My brows thinned and I had to connect the dots with make up, but I only lost about 50% of brows. I just avoided touching them.
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I'm starting chemo on Tuesday. So nervous. I received my cold caps yesterday - so weird to look into my freezer and not see any food - just caps. I'm glad the caps are around to help me try to control something during this process where I've not had any. I pray the caps work. I have long thick hair. I even got the brow bands. Anyone use those? Any further tips/suggestions would be appreciated. Thanks.
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Welcome Anniej. I recently finished chemo and was so glad to get the caps out of my freezer- more room now for ice cream : ) You found the right place to ask questions and get support while you use the caps. The women here are so positive, helpful and supportive. Most women who rent the brow bands use them to cover the area at the nape of the neck where the caps may not provide enough coverage. You may or may not need them depending on the size of your head (I did). I don't think many actually use them on their eyebrows. But I'm sure those that did will chime in. The most important advice I can give you is practice with your helpers using the caps right out of your freezer before you first treatment. They won't be as cold as when on dry ice, but you will get a better idea of how they work and fit. Good luck.
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But I don't think the brow bands are meant to keep your eyebrows. The cpas get very cold and I wouldn't reccommend putting them on bare skin.
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We bought a deep freeze just to have room for the caps, lol. I'm glad we have it now - great for all of our Costco frozen purchases!
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I feel like I should get a deep freezer too! It's just so strange to see that all in my freezer. The only room that's left is for my kids popsicles! Thanks for the help and support. Keep it coming ladies!
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anniej76, The non-profit www.rapunzelproject.com will donate a biomed freezer to your cancer center if your center will accept one. After much persuasion, my center accepted one. It was wonderful just leaving the caps at the center and not having to deal with dry ice and coolers each time. If you go the freezer route, Penguin will send 14 caps since you will not refreeze them per session.
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Good luck Annie!
It goes by pretty quickly if that is any consolation, so you will have room for more popsicles and ice cream before you know it.
We are here for you if you have questions. Lots of great girls on this thread, they helped me so much.
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Bumping to the top for Milly.
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I am almost 6 mos PFC and considering hair treatment. I know some have used Nioxin shampoo treatment. Does it work and which system number? They list 4 types for thickening. Also, what is a safe hair color that is not so damaging. The semi permanent Beautiful has been ok for some color but does not completely cover the gray. Thanks all.
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Congrats for making it to six months schoolmom! Yay for you!!
I am super interested in your post too- I am only at four months PFC but starting to research what I might use when I get to six. Can't wait.
I hope those who have "been there done that" will weigh in for us.0 -
schoolmom - I used Nioxin #4 for chemically treated and naturally thinning hair starting about a month PFC as my scalp was not feeling clean nor was my hair looking clean. It did a wonderful job of cleansing away everything I couldn't remove during chemo due to how gently we have to handle our hair.
My hairdresser started me out with a glaze to cover my awful looking roots as she said it was not as harsh as lightening my hair. While it didn't disguse my new hair growth completely, it made a huge difference in how it looked, sort of smoothed out the transition between the colors. Six weeks later she used something stronger to lift my color, six weeks after that she added some highlights. My hair looks completely back to normal now and is very healthy. I have shortened it to just below my shoulders as my old hair was dry and damaged.
I realize that I wanted to be blonde and that you are darker, but perhaps starting with a glaze might work for you also. Good luck!
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annie - all the best to you Tuesday! Not sure what type of treatment you are getting, but if you have any chemo questions or want tips, feel free to PM me and I'm happy to share. I did Cytoxin/Taxotere 4 rounds, followed by 6 weeks of radiation and really had no issues. I used a lot of tips and advice from others on the boards and felt more in control knowing what I could face and preparing for it. Keep your cold cap questions coming, too - we'll help you all the way!
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Hi ladies,
Today is day 19 and my mom has ALL of her hair. She has had shedding but it has been just as much as she would have had on a normal daily basis w/o having had chemo!
Just wanted to update all of you! She has round 2 of 4 on Wednesday. Hoping she has minimal shedding after this second one.
Good luck and lots of love to everyone0 -
Chelsea that is great! Thanks for updating us and good luck for next round. hugs to you and your mom.
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