Cold Caps Users Past and Present, to Save Hair
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Hi Ladies! Just checking in from the other side. 12 days from now will mark me as 1 year PFC - 4 AC followed by 12 weekly Taxols - chemo over 5 months last year. I would guess I lost about 40% (using Penguin Cold Caps) of my hair & it kept shedding for several months afterwards. I kept with the Penguin protocol for nearly 6 months PFC. At my last haircut & color about 3 weeks ago, my stylist commented that she thought my hair was finally strong again like it was before chemo. Yay! I still only wash my hair twice a week and that works for me.
For those of you who think you have lost too much & are contemplating quitting capping, only you can know what's right for you. That said, I had lunch with a friend last week who was diagnosed in September of last year. She finished chemo in December and did not cold cap. She has such little regrowth at this point - 5 months later - and is so frustrated. Her hair is also coming in solid gray (she's 45). Prior to chemo she had never colored her hair. Even though we may be discouraged at times with our shedding, it's important to reflect on what we do have. It's much easier to throw on a headband, hair topper, hat, Toppik, etc., to cover some loss or thinning areas than to rely on a wig, hat, scarf or even wait on regrowth for days that turn into months. Don't get me wrong, the cold capping doesn't always work, but I think if you come out with some hair, it's better than starting over. Just my 2 cents.
BBwithBC45 - so good to see you! You look fabulous! You would never know what you went through last year by looking at that hair!
Viktoryak - you asked about lashes & eyebrows.... I used Latisse throughout chemo. I ended up losing about 40% of my brows (mostly after chemo) & resorted to using a pencil/stencil/powderto fill them in. Today, they still aren't at 100% but at least I am saving in eyebrow waxing. My lashes fell out twice after chemo was over - bottoms totally gone with top about 75% gone. Today they still are pretty sparse. I've stopped using Latisse and get regular eyelash extensions which I love.
Dancetrancer - good to see you still active on this thread & maintaining the "success story" page. I can't believe how many people still have no idea about cold caps!
If I can be of help to anyone else on this journey, please don't hesitate to pm me. Wishing you ladies all the best!
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What is this "troll hair" that so many speak of? My hair is just super thin and oily & sticks to my scalp. Patchy on top. Looks awful! Is the troll hair the next stage when there is new growth?
Angiel - This encouragement is very helpful. I'm not giving up on cold caps (even though I lost about 45-50 percent of hair and have only done 2 TCs so far, yikes) for the reasons you mention about starting over. But this period is so hard for me, not looking like myself, having bald spots and stringy hair. I don't want to be in public at all now, and I used to be a very social, extroverted person! It's affecting me psychologically a lot. I would feel better if I could wear a scarf/hat/headband/topper, but aren't those against PCC protocol? I am trying to follow it very carefully and worry about any headwear causing damage to the scalp...
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I finished 8/12 of taxol yesterday. Don't want to jinx myself but have yet to lose ANY hair on head. No underarm or facial so bonus! Yesterday caps didn't feel as cold so not sure if will be a problem or Im just so use too that they don't bother me at all. Neck pillow and borrowed snuggie keep me comfortable. Tip for getting caps on tight I lean fwd on husbands chest as he's doing and the extra pressure helps. Also I think the gel headbands are great!!!I I hardly ever wash hair just occasional few drops of Berts bees and always conditioner. I rinse and then just scrunch and for some reason it always looks clean wavy and crazily better then it has in years!! Every day grateful I have been so lucky so far! Hospitals would be so smart to start ordering the digna caps system so we don't have to do this! I'm only second person at my hospital to ever do. When I walk in with my coolers they are right behind me with bags of popcorn taking drink orders and ready to draw blood etc. I didn't get port but my nurse is amazing drawing blood and doing my iv with one easy poke!!
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Elise - I ended up wearing a loose fitting hat on several occasions. I know it was against protocol but I did what I felt I needed to do. I also ended up buying a topper that I wore on special occasions after I had finished chemo but while I was still shedding. I also changed my part a lot! For a while, I did a very deep side part - almost in a "comb over" attempt to try and cover my wider areas of scalp. I also wore it braided & in a low pony tail using an 80s-type scrunchie a lot. I used a silk scarf & strategically placed it as a headband. I know that, too, is frowned upon but I only did it when I was going out. I honestly feel that the things I did that weren't acceptable per protocol didn't have much of an impact on my end results. I know it feels like "forever" to get through this but you will!
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Angiel - thanks! Great to hear from you - so appreciate the seasoned CC'rs popping back in to give the newbies hope!
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Kazclc, I am only 1 taxol behind you. Hope we will not start loosing hair after final chemo .. as some ladies saying here. It iwll be such a disappointment...after you think all over to start getting it..:( How are you eyebrows?
Btw, funny story about cold caps. We were asked yesterday by someone in a waiting room if we have in the cooler kidney or liver transplant.lol I said, NO and NO it is not its a cooler with 6pack
And now whenever someone stares at my cold cap I now say "Lobotomy" to. Yesterday we had to stay in hospital for extra 2.5 hrs after treatment just in a waiting room because traffic was so bad in NYC and we usually wait till it is shown by google map 40 min to home so we can only do 2 stops on the way at the places where we know where we can stop. When we driving there was again delay on FDR drive out of the city and stupid highway has no shoulders and next exit was so far. So my son (20yr old) clime from first sit to second where I was sitting while my husband drove and tried to change the cap. He is only a cold cap helper.. he never changed it himself. So my husband was giving directions from the drivers sit and I was helping and we changed.. But as soon as we crossed the GW bridge we stopped and changed it the right way. So,hope all will work and we didn't screw up. Sometimes btw, I also feel caps not to cold and i ask to change them.
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when did everyone's first big shed happen? I am on day 12 past my first treatment. So far no shedding- which terrifies me because I know it's coming, and I'm afraid it's going to happen all at once.
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icandoallthethings - My big shed has lasted from day 13-now (day 26) with no signs of stopping. Lots of hair is gone, up to 50 percent of it now. It happens the most when combing, but also just anytime I even touch my hair, change clothes, move around etc. No "clumps," but many strands together at once.
I did TC with PCC, and my results are apparently much worse than most women with my same regimen using Penguin. Good luck to you and I hope you have better (more typical) results!
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My shed started like clockwork on day 17 lasted til day 30 - 31. I got so mad and frustrated I came home and washed and combed/brushed my hair after second treatment. STUPID! We made adjustments from treatment 1 to 2 and with another cap in the rotation and more ice...shedding stayed light throughout sessions 2 - 4. Now I'm DONE.
I have troll hair, bald spot in back but enough bangs and hair back lower head that I get away with bandannas and baseball caps with earrings and I feel ok mostly in public. I also did not loose my eyelashes! wth? brows got thin but I was a blonde and used to drawing them in anyhow.. I could not do a wig this time given how bad my headaches were the first two rounds. Thought I was drinking enough...not. Much less worse sessions 3 and 4 though damn my colitis and fatigue were worse.
One week out and I cut all my grass tonight and went for a bike ride with my son. Screw you cancer...you hit me 2 x in 4 years....be gone for good and I'm taking my life back immediately after this recurrence. I know there is no time to be wasted and even with my scraggly troll hair, hoping regrowth fills in soon/faster than last time. No capping last time with 4 AC and 4 Taxol and it took 4 - 5 months going without my wig in public. Hold the line and for the nights you get down and want to quit or rip out your "quitter" hairs....take an ambien or attivan (make it a double) and go to sleep watching a comedy. Make up your mind to push through every one of these treatments and you may be lucky enough like Phalia and I and you can laugh when people stare at you leaving with your cold cap on and say "Lobotomy!"
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7of9- I am really sorry your cold capping didn't work as well as you (as all of us) had expected, and wished it would. I mean it really sucks! I'm still shedding and I hate it. I can't even wear hats because my head is as big (and shaped like) a bisons. So basically I'm a bison with troll hair! I need to get a pic of that image;)
I hope your hair grows back in super fast, which I have a feeling it will:)
Have a great time in California!
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victory- you should have said yes to the kidney question then "accidentally" kicked over the cooler! So funny:) Put a fake heart in there next time and pull it out and toss it in the air like "eh, no big whoop" 😜
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I tried a tennis support group yesterday in my area and at the chatting part of the meeting when was time to introduce myself ladies had tons of questions about cold cops. Most of them had no idea what is it. One lady said: or , i seen it. It looks like a car accident victim....
Here a new description instead of lobotomy victim we r promoted to beeing a car accident victim!!!
Btw during my 7 treatments in Sloan I only seen one more lady doing cold caps( but Pinguin) ...even though the staff very well educated about cold caps.
I am going to work today( I only go to the office once a week, work from home the rest) now I will be expecting starring at my hair...and people wondering if it's a wig..and say in..or you look good...why do I hate when they say it?
Have a great day, today!💋
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Phalia, lol! Fake organ in cooler! That would be the craziest thing ever! Can you imagine the look on their faces! 😵
I also liked the comment from the capper who got asked if she was tailgating! 😂
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I'm day 14 now pfc- and yesterday I noticed my pubic hair falling out. It was weird.
I've been losing a few strands on my head here and there, but I have long thick hair, and shed often anyways... So I'm not sure if this is different than befor
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KThielen: I am not sure if I am the Susan you are asking but yes, I do use some product. I have the same problem. Curly hair that just turns into a frizz ball if I don't.
I use all organic, very pure stuff. When I wash, I use conditioner on the ends, being careful to try to not get any on my scalp. I rinse like a mad woman. :-)
I put a combination of gel and cream styling products in a spray jar about half full. I fill the other half with water. I will use this to spray on my curls between washing, when needed. Also, trying to avoid getting any on my scalp.
I have gone through 8 taxol/herceptin and perjeta treatments and still have 99% of my hair. I do have a minor shed every morning but it is only about 20 hairs. What I would expect if I was just normally brushing.
I start a/c in 4 weeks. I hear that will be a little tougher.
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Quick question: How many people have experience with cold capping through A/C. I just found out I have to cap for 5 hours after with penguin? Are you kidding? I am going to have to order more caps. 14 is not going to get me through all that. Lord. I am glad it's only for 4 times.
Taxol report: I am shedding very lightly...not much more than when I would brush my hair. I would say I haven't really lost much at all. I am now through 8/12.
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HI susan - I used Penguin for AC and had 8 caps - using dry ice - and they were cold enough by the time they rotated through. However if you are using a freezer, you might want to bring along a cooler of dry ice for the last ones to gt cold enough - I would talk to the rep….
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I just had my weekly wash after Taxol# 7. And here I see so far the firts real shed since I started. It' s hair after I brashed..
And I still have hair coming out if I touch them. Now I let them air dry.Will see later on. I always had good hair they didn't shed after washing before.. Does it mean it's just finally Taxol cought up with me and caps don't work or is it normal....
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Susan, I did 4 A/C and am now onto my 3rd Taxol of 12. I am using penguin cold caps and cap for 4 1/2 hours after infusion ends. I have 14 caps and never need more. I am using the biomedical (Rapunzel) freezer at my hospital. We put the caps right back in after use. I wonder if the first cap would get cold enough by the end of the day for re-use. I bet it might be close enough because you only use the first one for 20 minutes. I am happy with results so far. I lost a considerable amount of hair (no idea what percentage to tell you) after A/C # 2 but have enough to feel pretty normal and no one who didn't know me would know that I am doing chemo. I am a little sparse above ears and along part and crown but still pretty darn good considering. My shedding seems to be pretty regular and what I would call "light". Have yet to see if I will have another significant shed during Taxol. I am a true believer in how much saving my hair has helped me psychologically get through this.
ILoveArt
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Hi all! I had my first chemo and cold capping yesterday. 3 to go! I found the first few to be uncomfortable but after that they were fine (thank you Ativan). I have a question:
I have read on here that some people cap even on non-chemo days. I am using Penguin caps. Do a lot of people do this? If so, how long and how many days post chemo is this recommended?
Thank you!!
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viktoryak - that looks like a very light amount of shedding compared to what I've been experiencing. It seems you are having great results so far. I'm jealous!
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bab- you couldn't pay me enough to cap on a non chemo day! That's about all I have to say about it. I don't know what the benefit would be. After 5 half lives, the drug is gone. I started dreading chemo not because of the chemo but because of having a frozen head for 7 hours. That said, I'd do it again in an instant!
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I really think that conditioner loosens the hair from its fragile follicles. I try not to condition but my hair is so dry and scraggly:( I've seen it happening a lot more lately... I HATE SEEING my hair still falling out after 5 weeks post chemo:( stupid chemo!
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Vik- I had that much shedding today and I am like 5 weeks past my last chemo!
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I'm still shedding a little but I got rid of my troll hair and had 3 inches cut off and my bangs cleaned up. It looks sooo much better. I'm kind of sad not to have long hair but my hairdresser said having it shorter will give more volume. She pretty much treated my hair like normal and nothing happened. And she looked at my bald spot and said new hair is coming in. I'm glad to hear that!
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Victoryak I lived in Ct for a few years and drove to Jfk for work so am of the mind if you can handle the traffic anywhere around NY/NJ you can do anything!!!! Only thinning of brows and lashes not bad so going to assume it won't get much worse. Only some neuropathy and really tired - have only told a few people - no one would ever know from looking at me. Thankfully can take time off work. Again feel lucky and hope everyone has such good results! Definitely don't want to waste any time hiding away because of looks!! I'm eating pretty healthy except for the coffee and wine!
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Thats great news, Runner, how many weeks PFC are you?
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Elise, I'm about 4 1/2. My last one was May 19.
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is anyone else that finished chemo recently having some pretty significant muscular pain still? I'm scared this is never going to go away. It's hard to walk when I get out of bed and my arms are extremely painful and week. I'm very active with biking and running (well, walking right now) and I can still do those things and they relieve the pain but as soon as I stop, the muscles all tighten up worse than they were. I really hope this goes away soon
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Runner, you had so much trouble with swelling and now this - I wonder about your electrolytes - have they checked your potassium and magnesium? Just a thought….
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