Cold Caps Users Past and Present, to Save Hair
Comments
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lynda - you go girl! I loved the look on my onc's face when he saw me coming in for my 2nd, 3rd, and 4th chemo's...WITH hair! He really didn't want to talk about it...avoided the subject...did the onc "walk of shame" b/c he was wrong! lol Seriously I love my onc so I'm not badmouthing him...but it was soooooo fun to prove him wrong after he patted my hand at the beginning of chemo and nodded and said "oh my dear, you WILL lose your hair...but go ahead and try the caps." So you got a snicker and I got a pathetic "you poor deluded patient" speech.
HA! Here's to proving our onc's wrong!
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Hi Lynda, I'm glad you found us and jumped in to share your experience. Sounds like the caps are working well for you and you will have that sweet satisfaction of proving your doctor wrong. One capper at a time, we are educating medical professionals that the caps really do work.
I live in the western Philadelphia suburbs and was treated at Penn. I finished chemo and cold capping in June 2013 and managed to keep most of my hair. It was dry, gray and frizzy by the time I was finished, but it was still on my head and that's what was important to me. Now, a year later, my hair is completely back to normal and has been for about 5 months. I'm back to abusing it with the blow dryer, flat iron, color and anti frizz remedies. I am a very happy cold cap user and I still marvel that they actually worked.
Not about cold caps but I wanted to share- had my first MRI since surgery yesterday and was pretty nervous. While I was in the machine, the building lost power, and the room became silent and pitch black. The tech had to remove my IV by flashlight. I had about three more minutes before the MRI was finished, but fortunately, I didn't have to go back today and finish. They posted my results today and I got the all clear. What a relief.
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Hi Lynda, I'm glad you found us and jumped in to share your experience. Sounds like the caps are working well for you and you will have that sweet satisfaction of proving your doctor wrong. One capper at a time, we are educating medical professionals that the caps really do work.
I live in the western Philadelphia suburbs and was treated at Penn. I finished chemo and cold capping in June 2013 and managed to keep most of my hair. It was dry, gray and frizzy by the time I was finished, but it was still on my head and that's what was important to me. Now, a year later, my hair is completely back to normal and has been for about 5 months. I'm back to abusing it with the blow dryer, flat iron, color and anti frizz remedies. I am a very happy cold cap user and I still marvel that they actually worked.
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That's great news, JC. It keeps everything in perspective.
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finished chemo 6 yesterday! With hair woo hoo!!
I am so psyched to be able to start saying I'm xxx weeks Pfc now. Boxing up my caps and shipping them out ASAP
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Wyomama- YOU ROCKED IT!!!! you're hair looks amazing! I start next week and you give me great hope!!! CONGRATS to you and your helper!
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Wyomama! You look absolutely radiant! Love that smile and look at all that HAIR!!!! Woo-hoo, you are PFC baby!
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Wyomama, your hair looks great! Congratulations, welcome to the land of PFC
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{{{Wyomama}}}
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congrats wyomama! You look so great!
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Wyomama! I am so happy for you!
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Yay, Wyomama, you did it!!! It will feel sooo good to box up those caps and ship them back to help the next capper. As much as we are all grateful for the caps, it's a happy day to see them leave your freezer for the last time. You look fantastic! Welcome to the other side
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jc, awesome news about your MRI! Every positive report is a victory for all of us.
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I decided to do the caps! This thread was very helpful and encouraging to make this decision. My caps will arrive next Monday and I'll start chemo on the first week of September. I'm nervous... doing lots of research online. Anyone have any advices/suggestions to prepare for chemo & caps? Thanks!
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hockeycat, good for you! You'll be happy you did it
Listen to these ladies, they know what's up! Don't feel bad about panic days, or questions, or anything. Just get it out here on the thread. It's a roller coaster of emotion.
Before you start, it's hard to believe it will work, or you think it just won't work for you. But you take the plunge.
Then you freak out about putting them on. But a little practicing and you'll find what works for you. Also, ask around, another capper may live nearby! (unless you love in Wyoming hahaha!).
Once you start, you'll screw up something, because you're human.we all screwed up something, we still have hair
Then shedding begins and you'll be certain you can't possibly lose more hair for the next x number of treatments without being bald, but you will. The shedding seems to come and go throughout tx.
I found one of the biggest things that worked for me was putting my hair in a low and loose ponytail. Then I wasn't pulling loose hairs off EVERYTHING all day. I also used colormark for my disgusting gray temples. That made me feel like me a bit more. I wore makeup almost daily (which I never do) but it helped me feel pretty while my hair isn't feeling pretty to me. I only brushed my hair maybe every other day or every 2 days max (but I'm a stay at home mom, I can wear sweats all day too, so I know that's not an option for all of us).
Just take this 1 day at a time
I didn't get my big shed until just before tx 3, but I panicked! Then I let go. I realized, I'm doing the best I can do. I have to have some faith. I have hair right now. I won't be bald, it will be ok. It will be ok for you too
And thank you ladies, everyone of you!! Warrior, you especially are just the voice of reason
I'm going to get in contact with PCC and offer myself up to help other cappers now that I'm done. Well, once I'm done with rads anyhow.
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wyomama - a true inspiration! God bless you! You look beautiful. I have my scrunchies ready!
I'm getting my port next week and starting chemo probably first week if September - TCH x6. Oh, and closing on our new home that week, too. So basically I'll be doing chemo, packing, moving and running after a non-stop toddler. The latter would cause you to lose hair under normal circumstances! Praying for strength and believing it will all work.
I spoke to a awesome young woman who just finished tc x4 and used the caps. She said she had trouble getting the caps cold enough her first time following PCC dry ice method. So she opted to take caps out of container and pack in zip locks, layering with pellet dry ice bags. I know this is taboo but anyone have any thoughts on packing caps?
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You are an inspiration Wyomama! I'm feeling pretty low and panicked right now, but your pics gave me a little boost. Congratulations!!
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Daniella,
It takes more than 3 hours for them to initially freeze. I found that 4 hours work great....but I guess it also depends on your freezer at home....mine is not exceptionally cold. Caps 4 -8 were -35 - -40 below freezing...depending on where you aim the thermometer...plenty cold...so maybe just 1-3 caps put in a baggy if your worried. I got 80lbs of dry ice....maybe they gave me slightly more....its not like the weigh it. Basically every blocks is @10lbs....so got 6 blocks and 20lbs of pellets. I do think for my next round I'll get 30lbs of pellets....so 90lbs. They're good for the sides and smaller spaces.
My appt's start at 8:30 to see doc and get blood work and then my chemo starts at 10. I woke up at 6:00 am to pack my coolers with the Caps. You get 45min - 1 hr of premeds...so the caps go on @ 10ish. You should be @10min into cap #3 when then chemo is administered. You should get specfics from your Chemo center....ask how long your pre-meds will take. When they say chemo starts 9...ask if that means when pre-meds start or chemo starts. Better to have to caps too cold in my opinion than not cold enough. Bring alleve or tylenol....I usually take it on my first cap. You get a headache....but not bad enough for any thing stronger. Also didnt take Ativan....the Benedryl in the premeds (make sure you get!!) makes you sleepy enough...you would pass out with Ativan or prescription pain-killer. You definitely want to be awake on your first round....to help your helper. I hold the caps in place when my honey puts it on and readjusts...things of that sort. Also if you plan to ice your mouth...its hard to suck on ice if your sleeping.
Wyomama -
I am sooooo happy for you!!! You were such a help to me...talking me off the ledge and giving me encouragement!!! I'm taking your lead and paying it forward...even though I still need some encouragement. I wish I didnt have to comb my hair daily but I do....that is when I lose most of my hair
Please drop in here and there and lets us know how you are doing. Some ppl have reported that shedding picks up again post chemo. I hope it doesnt for you....and every one of your beautiful hairs stays put on your head.Wednesday is treatment #3....dreading my hair wash the monday after....the wash after chemo seems to be the worst for me. I feel like I am losing about anywhere from 50-100 daily.....more like 200 on hair wash days. If I only had 4 treatments...then I would say I would lose less than 20% of my hair....but with 6 treatments it will be closer to 30% of my hair. For those starting soon....I started chemo on July 17th....and I still have most of my hair....NO ONE would know I am going through chemo!!! I know the caps are working, but still wonder and have doubts about how my hair will be come October. Right now its not that visibly thinner....but know it will be with another 2 months of this. Having 70% of my hair is better than none!!!
For the newbies, if you have specific questions....ask away....myself and the rest of the amazing women on this site will be happy to help. Dont forget to read the posts....go back about a year....you will get invaluable info!!!!
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Hi Jennliza- I've been following your progress-great to see your doing so well!! I start chemo next week and will be capping as well. Question: my chemo is scheduled for Thursday- what day do I wash my hair BEFORE treatment -everyone says three days. Im just unsure is that Monday? Also, can you give me more specifics of your washing schedule on chemo weeks and non chemo weeks. And what was your process of washing.
Continued success!
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Hi all, well the infusion itself went well except w the combo of Ativan and aloxi and struggling to get the cold caps on, I started to feel sick, like I was going to pass out and then like an anxiety attack as the caps were just so cold. The blood vessels in my head were going "wahoo, wahoo" and for a brief ten or twenty seconds, I though I can't do this. I wanted to rip it off my head. A few minutes and deep breaths and felt better, but still cold. All done now with the infusion 3.5 hrs, and downstairs I. The cancer resourse center continuing the cap changing . Felt fine with the A, the C is giving me a brain fog so it's hard to type, but it could be the cold I don't know? Or the compazine? The first one is the worst, for five minutes, as your scalp gets colder, the next one is bad for three minutes, but the time I hit the 10,11,12,13,14, 15. It was like a 30 sec discomfort that passes, and thenyou know you are done! I changed my part every change, used the puffy moleskin that I had pre measured and precut in a Baggie, (bring scissors in case you need to trim or cut mor, then I used thinner moleskin to wrap around my ears, folding it over the top of the ear, and then covering the ear altogether. Found another great blog from a user who used panty liners on her ears.
http://breastcancerwontdefineme.blogspot.com/2012/01/tips-for-using-penguin-cold-caps.html
She had great photos and led me to use additional temple foam, which helped make me way more comfy. The back wheat neck pillow that could be warmed also helped take some pressure off the neck, although I used it, when heated, with the neck part around my throat to not accidentally warm the back of the caps. It adds a whole. New dimension to chemo, I my case extending it by about five hours. But I want to see what we get! It will be a hassle that I just get on with for the next six months, and I'll keep you posted. Here's a before photo. I don't usually look so morose, just trying to get a good back hair selfie!
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Yeah Gatomal! One under your belt! It will only get smoother from here. We are having the same tx regimen, so let me know if you have any questions going forward. I'd be happy to try to help.
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kpmacmill... Hello, been thinking of you so much. How are you doing, further down the road? Found a much better, hand-tied wig, human hair, that is kind of similar in style to mine, needs some long front layers cut, and the color is a bit darker, but I am ready to pull the trigger when need be. It's only $1400 , which is better than the $3000 I was expecting. I'm feeling really foggy this morning, uncoorodinatced; going to the bathroom last night, kind of holding the hallway and walking slowly. Not sure if it's the Ativan, compazine, or the actual chemo. I noticed my doxy dose was pretty high, like 100mg, when it seem an average dose ranges between 40-60 mg for dose dense plans. I wish the docs would briefly share their thinking, not to invite debate, but just to inform engaged patients more. Perhaps it got increased since we found a big node that we had missed with all of the other feel ups two weeks ago. I told the docs I felt the tumor was getting bigger, like +3mm, but they said no, and then they found this low node the size of a shooter marble. Since we can't do any imaging or node dissection during pregnancy, I think they are just maxing me out with chemo doses. So many unknows though! Trying to be more Zen about the process. So hard for a planner like me. Hope you are feeling well! Are you gearing up already for number 4?
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Hi Gatomal,
I've been having a bit of a rough time with my stomach since round 2, the queasiness just won't go away. I've taken all of the drugs, but nothing is helping. The only time if feel OK is when I'm actually eating, although everything tastes super salty. I've also been increasingly exhausted as the tx's go by, but still try to work everyday.
Hair-wise, it's been tough. Have been losing at least 400-500 hairs a day for 13 days now, maybe more. I washed my hair yesterday and a ton fell out and it has continued today. It's still hard tell unless I lift up my hair to see the baldness over my ears and a few extra thin spots, but it's getting very thin overall. My part is getting wider all of the time. Like others, I feel like "how can this possibly continue like this?" and be left with anything. I'm just praying for it to slow down soon.
My last AC tx is Wednesday, Aug. 27th and I am so looking forward to getting it over with. Then I am on to weekly Taxol x 12. I sure hope your SEs are minimal with this first round.
- Kelly
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I am waiting, like you, for the slow march to unacceptable scragginess, but here is a video from an ACT pt, on her sixth tx. Don't know if you saw it already. The length is great, the scalp has some coverage. I just hope if I get to her place, the hair will grow in short to give scalp coverage, and in a few months after that, I can look into falls or other hair pieces to add fullness without a full wig, then cut some of the length until we eventually meet in the middle. Wish I was brave enough to just get rid of it, but I'm fighting for it, and doing whatever I can so it looks passable until it doesn't look passable any more. Then and only then will I be more aggressive. I'll post pics after treatment two (as my natural roots grow out, and my blond grows down, and I look like Madonna having a bad, greasy! hair day). Staring on my latisse this weekend, and used the nail strengthener before my first treatment. I can't believe you are almost done with the worst of it. Almost halfway though chemo! Congratulations.
http://www.wkyc.com/story/news/health/2014/05/05/cold-caps-penguin-caps-chemo-hair-loss/8730573/
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Barremom - In the beginning I washed my hair 2x week but after that awful shed on the wash after my 2nd treatment...I switched to just once/week. I wash on Monday mornings before work....even chemo weeks. It's is 48 hours before my treatment as the protocol states.
I started out using Beauty Without Cruelty Shampoo and Conditioner, but also just bough DermOrganix...truly don't know which is better. Both are paraben and SLS free. BWC is also PH Balanced. I wash my hair in the sink. I use a bottle and pour some shampoo in and fill with water and apply to my hair and make sure it gets to my scalp. I don't scrub at all. I pat and let sit for 5 or so min. Then take bottle and rinse with water. I do the same for conditioner...though don't use nearly as much as I used to. And I focus applying to my hair than scalp.
I also wet my hair every morning with a water bottle spray. I comb it before and unfortunately again once wet. This seems to refresh my hair so it doesn't look slept on. Today is Friday and it looks ok, but by Sun it definitely looking not so clean.
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hi ladies,
Wonderful to see more PFC success stories (go Wyomama!! Gorgeous!) as well as folks at similar place to me (hi kpmacmil, gatomal) and ladies just getting started (barremom).
One answer and one question :-)
Answer - barremom - I thought I was going to have to wash at least 2xwk, but my hair has dried out a lot so I am washing more like once, maybe 1.5. I bought a squeeze ketchup bottle and a jug. Fill the jug with lukewarm water, couple of squirts derm organic shampoo in the ketchup bottle and top it with water. Vigorously shake ketchup bottle so it foams. Throw jug of water over my head. Squeeze shampoo mixture from ketchup bottle around my hair (pointy end allows you to get everywhere w/o rubbing scalp). Throw another jug over head to rinse. This took a while the first few times but is pretty quick now - i do it before I shower. (Shower cap other days).
Question - I know we aren't supposed to cut hair, but I have bangs (straight, blunt bangs..) which have continued to grow. Feeling the need to trim them! Has anyone done this? I am assuming they won't just all fall out from a little trim? :-/
Advice welcome! Thanks in advance!!
Rain (2 down, 2 to go..)
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Thanks Jennliza & Rain- Great tips, I get it now. - I cant imagine not foaming and really scrubbing my scalp as I did pre-cold caps! But...a girls gotta do what a girls gotta do right?
Continued success to you both!
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Hang in there, ladies who are being treated with AC/T. It is the harshest treatment, but we've had some great successes here lately and I know you will do great! Just trust the process, and know it won't be your usual style or color, but you'll get back to that sooner than you think. I had a very bad ombre look I rocked for a few months pfc, and just kept it back in a low barrette during those few months on non wash days. On wash days, I did blow dry on cool heat low speed until just damp, then I carefully put it on a few velcro rollers, sprayed it with some DermOrganic volumizing spray and let it dry the rest of the way…it gave me at least one good hair day per week
Other days, I just kept telling myself it would all be worth it in the end, and it was. The hair you're shedding will start to grow back quickly but it's hard to see at first in spite of how closely you look…one day you just realize you have big areas filling in that are about 2" long. My filler hair also came in wavy and I've been enjoying that change from my normally can't hold a curl hair. I did shed a bit pfc, maybe for 3 months, but it was minimal and I got a 1/2" trim every month after chemo until I did the major cut and color at the 6 month mark. I know it's hard to see the end at this point, with all those stray hairs falling loose, but stick with it and you'll soon be sharing your success with the newbies. Hugs to you all!0 -
I met with the Sloan onc and she had a different plan. Oh, and the local oncologist failed to read my path report correctly. My er+ was 15% not 1-5. So needless so say, I am not going with this local oncologist because that shows incompetence in my book. So now I am getting chemo at Sloan, no port (for now), Taxol herceptin weekly 12x. I've read PatinMn experience with this regimen. Wondering if anyone else has had experience with the caps and just Taxol. Should I be icing my fingers and toes with taxol? Now I have 12xs we can screw up the caps and have to buy double the dry ice at $125 a pop. The cost evens out since it will be one less month in cap rental fees. I start the September 3rd.
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Hi Daniella- SO sorry for this change of events-so frustrating when you are trying to plan and then BAMM-change of course. I'm glad you have a start date. Sorry you have to re-coordinate your plans with all you have going on (moving, baby etc).
I have no experience with you regime but am hopefully some of BC sisters can help you out.
(((HUGS)))
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