Cold Caps Users Past and Present, to Save Hair
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SusanBP, Thank you! I just got dry ice for my caps. Ready for tomorrow's chemo. I am a week behind you. Hope it works! Good luck!
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hi everyone, I have good news! day 33, wash day, and the shedding was substantially less than last wash! granted I have less hair to begin with but Im hoping this is a constant now and im keeping my fingers crossed that the worst has passed
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Hi All! New to the boards here but I have been reading all of your experiences recently and thought I would jump into the fray!
I am heading into my second round of TC tomorrow and am cold capping with Penguin caps. Victoryak, I am just like you in that I have short hair, cut just to my ears and just to my neck in the back. I cut it short back in January, from below shoulder length, before I knew anything about Penguin caps, and have not had it cut since so I do have some length from the top layers and it is puffier, lol, than I would normally let it get while this short. I also have thick hair. Following all of the rules, even the ones like deodorant, caffeine...etc. that seem odd. So far lots of shedding in the back and along the sides but nothing noticeable to anyone but me as far as I can tell. Saw my plastic surgeon today and he was surprised and said "You still have all your hair". I am scared that at this rate I will be bald at the back of my head before I am done but we will see what happens. I fear I will end up with some odd looking flock of seagulls meets Donald Trump comb over look - we will see! Hopefully it can end up being something doable and I won't have to go the wig route!
I am hoping that since I hit day 21 tomorrow (not sure exactly how you count? If it's from day of or day after) and still have a good amount of hair the caps are working for me. DH is my rockstar capper and sink hair washer and has been really supportive. Fingers crossed all goes well tomorrow and sometime in the next few weeks all of this shedding slows down some!
Hi to everyone and thanks for sharing all of your experiences on the board - it is a lot of help to newbies like me!
I do have a silly bordering on stupid question - is wind a major concern? I live in a windy climate and wondered if covering my head lightly with a scarf when I have to be out on windy days would be preferable to letting it flap in the breeze?
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I haven't posted in this thread before, but wanted to share my success (knock on wood) with the Penguin Cold Caps. I am doing Taxotere, Perjeta, Herceptin every 3 weeks. I am two treatments in and over 10 days past my second treatment and my hair is still going strong. I would say my shedding is less than 20%. For sure there has been thinning, especially near my temples/front hairline. I have super thick, wavy hair, which I have heard can make it harder for the caps to make contact, so I wanted to let others know- they are working!
I am doing four rounds of AC after this, so I may have little or no hair left after that, we will see. But so far, so good!
I also use the travel version of the Wet Brush to brush my hair. It is very small, and the bristles are very far apart (much more so on the travel version than the full-size) and it allows me to brush just the smallest amount of hair and removes tangles with really minimal pulling. I tried a few of the recommendations of combs/brushes from Penguin and others, but this one works the best for me. I have been using California Baby shampoo, along with a spray detangler by the same line as needed. Washing hair not more than once a week.
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Hi Meg2016 and Amyabs-
Welcome to BCO! We're so glad you've joined our community, and thank you so much for sharing your stories! Success stories of all kinds are ALWAYS welcome here. We wish you both continued success with your treatment and Cold Caps, keep us posted!
The Mods
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hi not sure how current this is but I have been diagnosed with breast cancer m, her2 +ER & start chemo on Monday 16th May 2016 I am trying cold cap too I'm getting FEC-T X 6 3 of fec & 3 of t. How did u find it did it help was it worth it ? I'm terrified xxx
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Lynn, welcome. I don't think FEC-T is a very common chemo regimen here in the U.S., but I think it's similar to AC-T, which many cold-cappers get. There is a fair amount of success with AC-T, but it's tougher on the hair than some other chemos and some on AC-T try cold capping but don't keep on because of excessive hair loss. So I think you will just have to see how it goes. What type of cold caps will you be using? Most of us used Penguin cold caps, and followed their instructions on temperature (about -34 degrees centigrade) and timing (50 minutes prior to first chemo infusion, and 4 hours after completing chemo, changing caps every 20 minutes for the first two caps, and then every 30 minutes). Lately, though, a lot of women are using Elastogel caps because they are less expensive. A few have used/are using the Dignicap system which is not widely available here in the U.S. From what I've read here, it's harder to get a good cap fit with Elastogels and the Dignicap cap. As for being terrified - you are not alone. I think we all were terrified after being told we had breast cancer! For me, at least, the fear died down once I had a treatment plan and started treatment. The cold capping was a great distraction and having two friends with me each time to do the capping was wonderful.
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Hi everyone! Hooray, 2.5 weeks PFC and it was hair wash day today - always stressful to see all of the shedding still. Worried about another shed with my surgery at the end of the month.
Victoryak, I have shorter hair, too. I didn't get a haircut in time to make the window of no cut before starting, and then have cut it myself twice - intended to cut the bangs a little and then got carried away. I know it is really soon but I am going to my hairstylist tomorrow for the gentlest of trims because I cannot deal with how ugly the style is ( clearly I was not destined to cut hair!)
I had the gel bands but didn't use them, and lost the "sideburns" bit of my hair.
I am so glad to hear people are drinking coffee because my decaf tea is not cutting it!
Here is today's hair
Here is the missing sideburns bit
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zinny, is it 2.5 weeks past first chemo?
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aww Zinny, you look great!
Lynn, it IS a scary process-the whole bit of it. My attitude was I'll try cold capping and if it doesn't work I'll wear a wig. I just didn't want to regret not trying it. I'm really, really happy I did it! My last treatment is next week. The only obvious hair loss I have is a hideable bald spot I have on top (I'm still not sure the cause of that bald spot is!). I still have the 21 day shed from chemo 3 to get through and then the last one but I quit worrying about it a long time ago. I think once you get past the first 2 infusions, you start to trust the process and the nightmares of waking up bald eventually stop.
I don't follow all the rules but I do the best I can. I do rub my scalp a little when I wash my hair. I figure if the root is that fragile, the hair will fall out anyway. I drink caffeine too. Sometimes I blow dry my hair. I put de-frizz product in my hair. But I'm very careful when I comb it.
And just to warn you, 2 weeks after each infusion you'll notice your scalp feels sunburned. Don't worry about it. It doesn't mean your hair is all going to fall out. It's neuropathic pain from what I suspect is damaged nerves coming to the surface. It just happens to coincide with when hair loss starts for people who don't cold cap. So good luck to you!
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victoryak - PFC means "post final chemo". Zinny - you look great!
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Congratulations Zinny! Wow, I can't imagine how great it is going to be to say "PFC". I have been following your progress and only hope to have such an abundance of grace, positive attitude and a head of hair once I reach the end of A/C + T too. Thank you for your steadying ways over the past months. Coming up on my last A/C next week. Still have hair.
ILoveArt
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StarsAreStars, you look great! My hair is very similar in length/texture before and after. Just had first chemo today, hoping to look as good as yours in a few months!
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Congratulations Zinny! My thoughts are if even 1 out of 10 of us gets to keep her hair it's a good thing and will cheer each other on. I don't have as much as you after 2 infusions but I think capping helped me keep it longer than without and hopefully it will come back sooner. I am also getting away with baseball caps and hoop earrings so with makeup I think / feel somewhat normal. Its the damn bathroom mirror in the morning and night that make me want to scream. Oh well...30 more days and I am DONE with chemo.
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Zinny, you look great! Hope I have as much success with shorter hair!
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Feeling excited cus today I finished 6/12 so I'm officially half way done with Taxol. T has been so much easier for me than AC. With that said I've experienced the flowing SE's:
Significant thinning of eyebrows, lashes and loss of all nose hair
Runny noses, some bleeding when I blow
Horrendous night sweats...sometimes 3-4 night. I'm pre-menapause so MO blaming taxol
Significant hair shed in spite of cold capping. Think I'm at 50% loss so far...especially on crown.
I as surprised to find peach fuzz growing on my legs. First hair since feb. Still no bodyhair anywhere else tho.
Some weight gain and moodiness from steroid. Moodiness occurs on Fri after Tues infusion.
Chemo brain...hard time coming up with right words
I think that sums it up for now. Here's to hoping final six rounds are just as manageable with less hair shed.
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Zinny, your PFC hair looks great! I also lost all my sideburn hair during capping. It was the first hair that I noticed growing back! Now at 9 months PFC, it's grown about 4-5" and is well past my jawbone..
Starsarestars, wow, you look so cute and heathy in both the before and after pictures! No one could ever guess you had chemo from looking at your hair. And I just love the expression on your doggie's face!
Meg2016, amyabs, and LynWadland, welcome to our group! Wishing each of you the best as you continue through treatment and capping. Please keep us posted on your progress!
Trxie16, congrats on reaching the halfway mark! You ladies who are on the longer chemo regimens totally get my respect. Wishing you continued success and less shedding as you move through the downhill side of treatment!
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Zinny you look awesome! Would never be able to tell you lost some on the sides. I was super worried after surgery when I started shedding more, but my hair held on and I managed through it. You will too!!!
Thanks SacCat! You will make it through this! The 1st chemo is the hardest because of the fear of the unknown. You got this now!!!Where are you getting your treatment at?
Thx Wildflower. You definitely helped me with words of encouragement and hope.
To all the other ladies: I'll be thinking good thoughts for each of you. You are strong and can do this.
xxxxx Stars
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hi ladies, I am still about 10 days away from dreadfull shedding. Just finished yesterday 2nd round of weekly Taxol. 10 more to go. I hope we are doing cold capping right.I am doing Arctic caps and worried they might not work as good as more popular Pingin. For sure it's painfull process that last for me 6 hours. Is anyone here on only Taxol regiment? I see most of you do AC before Taxol and I heared it's much harder on hair. I wonder to get feedback from only Taxol ladies. I was told. CC work great with Taxol. But I am so worried...should I go buy a wig, wait? Did we not do all correct?
Also washing..we not suppose to wash under shower?
P.s. it's 2.33 am and can't sleep. Must be steroids from yesterday injection.
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Thanks ladies:) Stars, you look beautiful and healthy, and the only thing that hints at your story is your port!
Anniekaja, OMG that dog…..
IloveArt, thanks for your kind words.
7of9, sorry your hair has not held out, but it sounds like you are pretty fierce and rocking it anyhow
. Phalia, your comments crakc me up. Troll hair is the best!!!
What I find wonderful about these boards is seeing every person's strength and resilience come out in different ways. It makes such a difference to feel like you are going through this with a tribe.
So, I looked for pictures of Amazons. Sadly, most looked like porn ads or posters for teenaged boys' rooms. These ladies lack a little, joy, I'd say. Perhaps they would feel better if they visited with us on the boards….
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ok so heres my update Capping session 2 went ok. I lost a lot of hair after my first shed ALOT! MY hair is long and curly and I never comb it unless im in the shower after deep conditioning. I was only washing my hair twice a week. So with this last wash my hair was knoty very knotty in multiple places I could not get the knots out no matter how much leave in conditioner or detangling spray I used. And yes the knots were already tangled up in my regular hair it was a mess I had to cut one big knot out. The size of a bocce ball! its been shedding since. I still have hair but the knot did me in. Since then ive been shedding buckets. Ive made peace with losing my hair if it happens. It was traumatic I cried in the shower. I had curly hair past my shoulder down to my back. Now its up to my jaw line...........it sucks
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lydia Im sorry this happed to you, for me it has been very traumatic as well to loose so much hair, my shedding has diminished a lot sine the first shed, but i feel almost bald, i lost a third of my hair, I dont know if day 21 after the second treatment is going to be anything like the last, but like you I am trying to cope with the idea of loosing my hair. I really hope capping works for all of us
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I'm sorry that's happened to you guys. I wonder what makes some lose so much more hair than others. I find that the first big shed was by far the worse. There has been no comparison to the other sheds for me. I've still lost a lot of hair but yeah, that first shed was pretty awful. I thought it was deal over for me.
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Hi ladies- I am on day 17 past my first round of TC. My arms only have very fine hair, my underarm hair is gone, and my "private" hair is mostly gone. I'm afraid to jinx it (KNOCK ON WOOD!!!!), but my head is full and no shedding at all. When does it start? My DH thinks I'm crazy, but I'm counting the hairs that come out and I'm only at 30 for the past 17 days. My MO seemed surprised and told me to keep with the capping. Dreading round 2, but loving that I still have my hair.
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hi Sheri- it's all of a scary sudden on day 20
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Sheri day 20. It cut me off:
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Sheri- it's shedding, not clumps. If you can stop yourself from pulling at it you should be ok until you get home:) put a scrunch o
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My hair is better than it was before I had chemo! I lost it all (right when the nurse said I would) and then shaved it that night. Once it grew back, it was thicker and curly. 2.5 years later, it's still very curly and thick. So for me, the hair loss was traumatic but it actually turned out better. I considered the cold cap, but my oncologist did not recommend it. Good luck to all!!
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