Cold Caps Users Past and Present, to Save Hair
Comments
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You look GREAT hockeycat!! Congrats on being done! Posting this photo is such inspiration for all the other gals still capping. Hang in there girls.....the caps will work!
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Congratulations hockey cat- you're finished! Did you continue to play hockey during chemo? I remember you asking about wearing a helmet while cold capping.
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Thanks mdg! Your blog was very informative and inspiring! It kept me motivated to continuing on cold caps.
Thanks jc254!, I played hockey once a few days before 2nd infusion. I wore a hairnet and bandanna under the helmet. My hair started shedding heavily right after, so I panicked and stopped playing. Also fatigue was so bad that I couldn't play well anyway. I plan to go back to play in a next few weeks if I start feeling better.
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Congratulations on being PFC Hockeycat! Oh happy day! You look wonderful!
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CONGRATS Hockey Cat- your hair looks amazing:) enjoy!!
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Question for the experts.....will the dry ice last overnight?? I have to wear the caps from 11am-6:30 and it would be more convenient to get the ice the night before but worried it won't last the whole night and next day;(
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Jalsgal - I had to do the same. I found for my first tx by the end of capping they were not staying quite cold enough. Thankfully, I didn't lose extensive hair due to this. Just for peace of mind, though, I got 20# more for my subsequent treatments (100# total), and the caps stayed cold enough well through the next day.
Don't put your caps on dry ice until the morning of, though (I think 3 hours before use is recommended? - someone correct me if I am remembering wrong.)
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I get 100lbs of pellet dry ice the day before. Make sure to keep them in a cooler and use towels inside cooler to take up as much space as possible so the ice doesn't dissapate quickly. Put the caps in 4 hours before use. They are always cold enough. I only had trouble one time and I believe we were shorted some ice that time. If the caps are not cold enough, or to prepare them for the second round of use during treatment, just double bag the caps in the huge 2 gallon ziploc bags and place them directly onto the ice. They will freeze right up. Good luck.
Congrats Hockey Cat! You look wonderful! I'm jealous that you're already done since we started on the same day. 2 more treatments for me. The last few have knocked me on my culi. I feel like I've aged 50 years in 3 weeks. Can't wait to finish and send these caps back!
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My first chemo is Monday. I'm so nervous. I had my port put in yesterday and it's hurting so badly. I was very positive before but the pain I'm in now and the thought of the pain I'm going to be in on Monday is getting me down. This is also my 2nd time with cancer.
Anyway, tonight we were trying on the caps and the one we used felt greasy and had a weird smell. Perfumy?? Just wanted to make sure it wasn't leaking. Thx!!!
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Jalsgal-You can get the ice the night before, just keep it in the garage in a cool place. You can even put the boxed caps in the coolers BUT, you have to take each cap out of box and hour before use and let it sit until it is malleable. DO NOT try to pull cap apart when it's hard and brittle or it will break. Otherwise, pack 4 1/2 hours prior to chemo. If you find a cap isn't cold enough, take it out of the box and put in plastic bag and place between ice. It chills very fast that way-1/2- and hour.
Congrats Hockeycat!
Jennjdance-You shouldn't have any pain to speak of. The port spares you of being poked like a pincushion. There is a numbing gel you can get from your doctor but you need to put it on @ an hour prior to chemo. There's also a spray but I don't see them using it much anymore. Take ibuprofen before leaving home. It helps take the edge off the coldness of the caps. The company doesn't do a very good job cleaning the caps. You can wash them in mild soap and water, rinse in clean water, and let them thoroughly dry before placing in the boxes.
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Hang in there jenndance - so sorry you are having a lot of pain from your port. It improves very quickly for most people - usually just a few days' healing time. You can do this!!!
I second taking something on Monday to help minimize the discomfort of the cold caps. Maybe even a little anti-anxiety in the IV beforehand would be a good idea. Be easy on yourself - hugs!
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yay Hockeycat and good luck JennJ!
My caps smelled totally funky when they arrived...almost moldy. Kind of gross. Perfumey smell may be someone trying to hide that?
I am 6 weeks PFC now (can't quite believe that! Feels like yesterday...). Still shedding. Boy do I wish it would stop...it's starting to make me a little crazy now...
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I just finished up and sent caps back yesterday! Yay!
Based on the instructions PCC gives for returning the caps, I suspect that they may not even take them out of the boxes before sending them on - the condition of your caps may depend on the last user. With that in mind, I was very careful to make sure mine were thoroughly clean and dry before packing them up.
Best wishes for everyone starting on this journey!
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I clean my caps after every use with a microfiber cloth and alcohol- both sides. I then literally take a fine tooth comb, stiff toothbrush and tweezers to clean the velcro so they stick better. I think it's the best way to ensure not only that the caps are sanitary, but work best.
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Thx everyone!! All great advice that we will use! Sunday is day 12 after my first chemo, the day my doc said my hair could start falling out....a little nervous but feeling positive the PCC will work. Keeping my fingers crossed!!!
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Thanks Dancetrancer, barremom, Daniella, Makingway, RainDew!
Congrats on finishing KLin!
Daniella, you have two more to go! You can do it! I know how you feel… every treatments made it harder to recover from. Hang in there!
PCC doesn't at least check the returned caps and clean before shipping out? Mine came ok, except for one lid was broken. I reported it immediately with the picture, so they won't charge me for that. We cleaned them with antibacterial wipes and completely dry out before packing. UPS picked it up last night. Such a great feeling to ship them back!
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Kazzy - thanks for checking in! It sound like you are doing very well. Congratulations! If others are anything like me, they read through but do not always stop to write. I am sure your post will help reassure people that cold caps are worth the effort, especially as you completed such a harsh treatment successfully.
SueBe and Hockeycat - you both look great!
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Better to use something other than alcohol when cleaning the caps. Alcohol is very drying and can eventually damage the plastic.
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I completed my chemo on Oct 31st and now dealing with just maintaining the hair I have. It is naturally course and frizzy. You can imagine I was using a lot of products to get it behave before cold capping. I wonder if anyone uses a specific oil or product to help give definition to their hair that doesn't interfere with the after-chemo maintenance required by PCC. I let it air dry and still don't use conditioner. It has thinned out quite a bit and it is still shedding.
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I completed chemo on Oct 30 and I'm shedding more now than I was during. I hope it stops soon, but folks other than me can't tell. I'm taking comfort from the previous posters that said it eventually stops. SueBe@ I have been using argan oil to help with the frizz but I'm not sure it's PCC-approved.
I have brown roots and more frizz around my face from broken hair due to the velcro on the caps. I can't wait until my hair is back to normal and I can have it colored again, but I'm thankful to have a full head of hair.
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I was one of those that shed for 4 months after chemo. I still had hair. It is a long experience, but once it stops and you color and cut, you will feel fabulous! I did! Hang in there Harrysmom!0 -
Harrysmom - I feel your pain!
Almost 7 weeks PFC and I am shedding way more now than I did in treatment - it actually seems to be accelerating...
Mdg, good to hear it does stop eventually (although 4 months is a long time!). Definitely starting to freak me out a little bit (having no clear 'end' date is hard...during treatment I was always counting down days till the 'end'...but for this I kind of just have to assume it will end eventually and hang tight).
It's kind of an emotional trigger for me I guess...since I also have to assume the cancer is gone and not coming back. So many unknowns which I just have to believe. Hard for a control freak.
Cancer sucks. Sorry to vent. Thanks for listening.
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congrats hockeycat!!
Jalsgal - I only got 80lbs...but think they gave me more. I get 6 -10lb slabs and 20lbs in pellets. I think the slabs last longer because they are denser and don't evaporate as quickly. Mine lasted the next day. Though it took some maneuvering... Towards the end of the day we would take the caps out of the boxes and put them in bags at the bottom of the cooler... Also I think the caps needed a min of 3 1/2-4 hours to cool. But since the infusion rooms were always delayed if I packed it 3 hrs beforehand...I wasn't capping till 4 hours after anyways.
Shampooing - only wash your hair 1x/week....not under the running water. I would go into the shower, but use bottles to get Luke warm water from the sink. I wet my hair daily with a spray bottle and combed my hair with a very wide tooth comb. I used the hair drier on cold....but didn't comb it....more to dry hair that was twisted to make a shape.
I finished chemo on 10/30....am still shedding....so will continue to be careful. I've had to get used to a very different look/style. But rather this than the other option...
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oh and I had my 2nd worst shed yet this week (post chemo)...only 2nd to after my 2nd treatment shed! I pray this is not normal...b/c I had a matted nest that I need to get out. I didn't wear my satan cap to sleep...never not doing that again!
Glad to know accelerated shedding post chemo is normal. I lost my eyelashes over the last couple of weeks too. You think you're done with chemo...great....but that's when things fall apart. Ugh!
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Hi all! I wrote a few days ago- petrified about my first chemo/cold cap use today! Well I did it and it went well!!! As everyone has stated, the first few minutes were the worst but then it got better. However, with each new cap, I still had to get used to the first 5 minutes and then I got used to it. So it wasn't just the first cap for me. It was all of them. Of course, my husband and I are worried if we did it correctly. My main concern right now is that an hour past taking off the cap, the top of my head is hurting a lot but the back of my head is not. This could be two things....one, it could mean I got frost bite on the top of my head. Two, it could mean that the hurting on top of my head means the caps worked really well there, but not on the back of my head. Anyone else experience this??0 -
jennjdance - was your infusion really early this morning?? How long did you wear your caps post chemo today?
As for the pain...don't worry it doesn't mean you have frost but. I used to think that...but I never had that. And you will also feel your hair/scalp hurting in a couple of weeks... You're going to freak out that it means just you are going to lose your hair. I got that feeling a lot and I didn't lose all my hair.
I'm still shedding as I just finished chemo, but still no one knows I went through chemo unless I tell them.
If you are using Penguin CC, I can tell you they work... As for the scalp, I used Beauty without Cruelty rosemary and tea trea oil shampoo and conditioner...it's helps with the scalp. The only flaky peeling I had was on the forehead hair line...and it was minor.
Congrats on doing your first one...it only gets easier....though you will panic in a few weeks after your second treatment and hair wash....but if you follow everyone's advice...it will work!!!!
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yes My infusion was 9:30-11:30. Then I wore the caps until almost 4. So you think I don't have any pain in the back of my head possibly bc I have more hair there than on top?
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Actually you probably don't have pain in the back because the caps dont fit that well all around there head. The caps don't completely cover the back and sides....that is where most of your hair loss will be....at least it was for me.
Sounds like you did very well today. Don't worry about the pain...it will go away. I doubt you got frostbite...
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Jenndance, the first few minutes of each cap were tough for me, too, but that very first one was the worst, for sure!
Regarding pain afterwards, I did not experience any pain (well, not immediately. I did have pain once I started shedding - scalp felt "sore". It is too early for it to be that for you).
I am not sure what your immediate pain today means - yes it is possible the top of your head got too cold as some on here did get some areas of frostbite - but it may not be that. You will just have to wait and watch. Oh and try to change your part between cap changes as that helps keep one area of scalp from constantly being exposed directly to the cap.
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yes I changed the part each time. It's 3 hours later and still numb on top. Doesn't hurt. Just numb. But not on the back or sides. I hope I don't lose my hair in the back/side!!!
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