Cold Caps Users Past and Present, to Save Hair
Comments
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sorry but I'm a horrific photo taker...here is my hair on day 17. I've been shedding all day and I'm kind of flipping out:(
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Phalia- I think it looks great!!
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phallia you gave great hair! And you have a lot! I really think it would be coming out in clumps right now if you were going to lose it all after round 1.
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Phaila: your hair looks great! I don't know how much you had before but you still look like you have a ton of beautiful hair! I'm trying to take milestone pics to post because those were helpful to me when considering whether to do this but I haven't gotten brave enough to post quite yet.
(it's only day 24 and I'm afraid my part might be widening but will reserve judgment until I wash and it's not a greasy mess!).0 -
I'm on the same start day as Cassie. I didn't think I had lost much hair but today I noticed a bald patch on my crown. It freaked me out. It's probably not as bad as it looks because my hair needs to be washed but now I'm afraid to wash it! Right now the bald spot is under some other hair but I sure hope this shedding slows down!
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ok I know I've kind of asked before but exactly how did everyone's shedding happen who are on TC? Like what day did it start and does it EVER stop? so much of my hair is falling out that I can feel the difference in thickness:( I'm pooping my pants with fret! Will I shed this much every treatment? If this cold capping is for nothing I'm going for be so dang depressed:((
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phaila - I felt the same way as you! Honestly....I shed a TON and it felt like it didn't stop until 4 mo's after I was done with chemo. I did keep my hair though.....have faith
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Stay strong ladies!!! I almost shaved my head a few times because the shedding was driving me crazy. I'm doing Taxotere and the shedding slowed down a lot for me, right before my 3rd round. However, everyone is different and has had different experiences.
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Hi Ladies, I am entering round 4 of TCHP this Thursday. Below are my pictures from day 60 of cold capping! While I have definitely had a lot of shedding and the shedding does give me anxiety (mostly on hair washing days) I wanted to share these pictures with you all. Even despite the shedding and thinning I am still able to wake up in the mornings look in the mirror and see my normal old self, this helps me be motivated and confident to take on the day! Remember you notice your thinning more than anyone else
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Here is another picture from day 60 where I am not lifting up my hair, this is what others see...no one would even know I am more than 1/2 day done with chemo treatments!
Also, please feel free to follow along on my blog: www.mypinklife.org I only have 1 post up about cold capping, but plan to add more.
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Stay strong, ladies! I had most of my shedding after round 1 and round 2. And then it slowed down lot. I was really worried after the first round, but it really did slow down. Now it's just a little shedding with each hair wash (about every 3 days). No one can tell that I've lost any hair. I can only tell just a tiny bit right around my hairline in the front.
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can anyone explain why penguin caps don't have you wet your hair? I know mine would be having such a better cold reach if my hair was wet. My hair is totally insulating my scalp😡
The other cold cap companies have you condition your hair and wet it...
I feel I would not have shredded even close to this amount had my head not been so protected by my thick hair (guess my hair did its job:)
My head is shedding gobs and gobs today. Worried I'm waking up bald tomorrow...
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mypinklife - you look great!!!
JCS28 - Passed, round 5 tomorrow. We are almost there.
phaila - I had shed to day 28 then it slowed down a lot for me.
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phallia, hang in there! If I have to, so do you! Honestly, I played with the idea of shaving my head today or borrowing my cat's Furminatorbecause all these strands falling out is driving my crazy. Then I kinda laughed at myself for thinking that when I still have a full head of hair. The bald spot is still there but it's not as noticeable since I washed my hair this morning. i can hide most of it with other hair.
It seems kind of rude for my hair to fall out near the top where there's less and you can't hide it!
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I'm glad you're sticking with it. I will too but it's just so fretful. My next chemo is Thursday 😬
But seriously, do you know anything about why penguin caps don't wet or condition hair before use? It just seems like it would work so much better
Vicki
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I do not know why. I'm not using penguin caps though. The company I'm using uses elastagel caps and the instructions for me were to wet the hair at the scalp. Is there a customer service number you can call and ask?
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EstelaLorca -- Great! Glad you passed. Yes, #5 of 6 tomorrow! I'm kind of excited because it's the next to last. But then I get kind of depressed when I realize I have only had 2/3 of the drug and I still have 1/3 more to put in my body. Ugh ugh ugh. But WE CAN DO IT.
I'll be at mine at 7:15 AM for blood draw, doctor at 8:20, and infusion starting around 9 AM.
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Ready set...almost go. Just talked to my dry ice supplier and we are hooked up. Also I talked to a lady who did successful cold capping and she recommends do get a short hair cut (as you dare) and to start cold capping 20 minutes each first 2 caps, then go to thirty each. Don't start chemo until 10 minutes into the 30 minute one. Also cold cap (get this) FOUR hours after! Ugh. Well I rationed out my oxy and attivan so we are going to give it a hell of a shot. I have an electric blanket and hand warmers for my right arm where all 4 doses of chemo have to go through - going to be like an arctic tern I guess trying to keep the core warm while head hands and feet freeze...
Where did you guys get moleskin from? Any other suggestions to prevent freezer burn on ears and forehead???
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7 of 9 - Penguin (the type of cold caps many of us used) does not recommend cutting hair prior to starting chemo and cold capping. (Or during, for that matter.) Are you using Penguin or Elastogel? The timing for your capping is correct - most of us did the 4 hours after chemo. I think I ordered my moleskin from Amazon - the thicker stuff, not the thin moleskin that you find in stores. When you stick your moleskin on your forehead, don't pull the backing off the entire piece - just enough so that it will stick on. Otherwise it hurts when you pull it off! Trim it to fit your hairline, but not too close. Make sure not to get hair stuck to the moleskin - you don't want to pull hair out when you remove the moleskin. I actually never used any covering over my ears (other than my hair) and didn't have any problems. Some use panty liners. Good luck and keep us posted.
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7 of 9, you can also use panty liners for ears. Cut them in half and the fit right over your ears and stick on. I also cut the moleskin to match my forehead hairline as I have a bit of a widow's peak. Also, don't cut your hair. I did and regretted it, mostly because it looked terrible with my puffy steroid face! You'll be glad u kept the hair you have. It did make maintenance and lack of washing easier, but looked terrible Good luck!
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Yes, that's exactly the timing I use for my Penguin Cold Caps. I only take Ativan once with my premeds. Then I'm good all day. The first cap is really the only one that bothers me. I do have an electric blanket and a scarf. I also use a travel neck pillow. The caps are heavy!
I just get the regular moleskin that comes in a roll. I found it at Target as Target brand. And I've ordered the Dr. Scholl's brand from Amazon. I do cute moleskin both for my forehead and my ears. Good tip about not pulling the backing all the way off! I have lost a few hairs to the moleskin.
I did not cut my hair short, but I did get a fresh cut within the week before I started capping. And I've been fine! And it really helped with the dirty hair days. Having a good cut that has a little style to it helped with not washing as often.
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7of9- you may not need pain meds or anything for the cold cap. It would be a shame to waste the good drugs if you don't need them! I didn't think they seemed very cold and I didn't get a headache. I quit taking my electric blanket because I didn't need it the first time, I just wore a jacket and was fine. I have long hair and I didn't cut it before I started. It seems like it worked fine.
I THINK my shedding has finally slowed down today (day 26). It seems less today but it could be wishful thinking. It sure is thin in places on top but so far I can comb over it and it looks better than Donald Trump's combover. I went ahead and ordered some Toppix. I could hide it completely if we were allowed to use hair clips but I think those are off limits. Despite all my complaining of hair loss, this beats being bald! I can't tell I've lost hair anywhere else so I'm wondering if my scalp didn't have good contact with the cap in that spot. Oh well. Hopefully it will grow back normal.
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I'm Shedding so much it's just like the most depressing thing ever. Seems like such a waste of money to order our dry ice for tomorrow night:( I guess I saved my hair for 2 weeks longer then if I had not used these caps:( If I just touch my hair I pull out tons. It's been like this for 3 days. I'm at day 20 only....
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Phalia,
I know it's discouraging, but you are probably just going through the big major shed that happened to a lot of us, including me. I think there may be a lucky few who didn't lose much hair at all, but many of us started shedding right on time between days 18 and 30. As it was explained to me, all hair on our heads goes through a growth, rest, and shedding cycle. The cycles are not synchronized with every hair, else we'd all go bald periodically. What the caps do is save the youngest and "middle-aged" hair. The hair that sheds is the oldest, having the weakest follicles, which may not be able to withstand chemo even with capping. What you're shedding may just be the oldest hairs giving up. I know I lost a lot of hair between days 18 and 28, then it slowed down. I lost enough where I got thin on top and definitely lost volume during the first 30 days.It was depressing and scary, but throughout the rest of chemo and afterward, the shedding was never as bad as that first time.
From your picture, it looks like you have a lot of nice, thick hair. You can lose a lot more and still look normal :-) I think you ought to consider at least sticking with the capping through another treatment before deciding to quit. You may not end up with the same hair,volume-wise, that you had before chemo, but if you end up with a full head of hair, and don't need to use a wig or hat, then the caps have done the job they were supposed to do. And your lost hair will start growing back before you know it.
Hang in there and wait and see if the shedding slows down within the next week!
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Was anyone able to save their hair with the TCHP Regimen 6x. I am so afraid that maybe this won't be successful with Penguin Cold Caps and it will be make me even more sad and discouraged if it doesn't work. Especially after spending so much money on them and hiring a capper. Anybody successful?????
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MyPinkLife- lookin good!! Can't tell at all that you have lost...especially when your hair is down.
Phaila- I've heard the thicker the hair, the more it sheds...but if you have so much to start with, then the shedding shouldn't be as noticeable. Do you see any bald spots
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hey ladies it is ok to set the bar low,even if we loose most or close to all, I have it on good authority that the cold capping is drastically cutting regrowth time even for the meaner AC treatment. I am doing tacotere x 4 and just scared to crap about the 6percent permanent loss numbers. Thanks for everyone sharing their stories.it sounds like if we can get through the first two treatments maybe we can avoid a wig during these humid summer months. Boating bald is not in my plans baby!
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Jgab - you're doing TCHP but you're HER2 negative? I do believe there is someone here who did or is doing TCHP successfully. Hopefully she will post a reply, or you could go back several pages and start reading. Back in 2012 when I did cold caps I read the entire thread from beginning to end looking for someone else who had done taxol/herceptin, but I was the first. This thread has grown so big that reading the whole things would take weeks! Anyway, think positive about cold capping - chances are it will work for you.
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phalia, don't give up hope. this is me prior to chemo and today at 6/8 treatments of DD AC then T.
It is a little discouraging to see that I look 20 years older!! ( Eyelashes are good things!) But though I have lost a lot of hair, there is still a good covering.
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(And these emoticon choices are weak.)