Cold Caps Users Past and Present, to Save Hair
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Ladies,
Advice needed from the alumni. After 4 successful AC treatments on my first Taxol WITH shorter capping time I have severe frost burn. 24 hours later the front on my scalp is numb and my forehead is literally swollen like I have been in a fight.
1. Any remedies for the current issue
2. How can I prevent this from occurring again
I am on weekly Taxol so my scalp isn't going to have time to heal in between. I am praying I don't lose hair from the current burn that's numb, I didn't last time but this is much worse. I don't think we did anything different at all so I am very confused.
Help!
Merry Christmas
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Leslienva, I can't wait to finish chemo and thank you for your encouraging words. My doctor really brushed it off like she had never heard of people forgetting things. She recommended me to stop multitasking, lol... I have 2 little girls!
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LRFTexan, I'm sorry you experienced frostbite. It did not happen to me, so I'm not sure what would be a good remedy. Hopefully someone with experience will chime in shortly.
As far as prevention goes, I do remember reading to make sure to wipe each cap well with a towel before putting it on your head, so there is no condensation left on the cap. Also, to change your part throughout the capping, between caps. And if you have any thinning spots on your scalp, to put a piece of gauze
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Merry Christmas to you all, have a wonderful day!
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LRFTrxan,
The last two of my four TC treatments gave me frostbite although I was also doing everything the same each time. All I could figure was that as the hair thinned on top a little more with each treatment, my scalp became more sensitized and reactive to the cold temperature of the caps. I also had the numbness, redness, and slight swelling which lasted several days. I used a folded strip of gauze over the places that got frostbite the last couple of treatments. It helped, but didn't stop the frostbite completely, so maybe I should have doubled it over. I don't know of anything else you can do besides using gauze, changing the part in between caps, and wiping the condensation off before putting a new cap on. Good luck and let us know how things go for your next treatment!
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I have a huge amount of swelling, it started in my forehead and has now moved into my eyes. I look like a cartoon character. I am just praying it goes away before my next treatment on Wednesday so it doesn't compound.
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Yikes, LRFTexan, that doesnt sound good at all. I never experienced anything like that, just some redness and a narrow strip of mild swelling right at the front hairline (less than 1/4" wide), and all the swelling went away witin 24 hours after capping. You might want to see your doctor to make sure something else isn't going on. You might be having some kind of reaction that isn't related to thr caps. Let us know how you're doing!
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Hi There All I am saying is DO NOT GIVE UP! I am 3 and a half weeks out of my 4h and final AC and I have saved 70 percent of my hair! I start on taxotere every 3 weeks monday! I just hope that this round my hair will be able to hold on! Any input or anyone else have and suggestions??
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hi ladies,
Just wanted to give a shout out to Penguin Cold Caps because I honesty feel like a success story now! I finished my 6 rounds of TCHP on Dec 23rd. This was definitely my Christmas present! I kept about 75% of my hair and have no bald spots except for minor loss on the sides right above my ears. I feel so lucky to have used these caps and kept my hair through this process.
So I hear I will keep shedding still for a while afterwards. Does anyone have advice on for when I can stop washing my hair in freezing cold water or wearing at hat? I live around Lake Tahoe and it's literally freezing outside. I've been walking around with my $3000 hat (my hair) but I ant wait for the days of warm showers and beanies.
Thanks!!!
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Starsaresta, Congrats on a successful cold capping!! I don't think you need to wash your hair in freezing cold water--you can probably warm it up a little--kind of less than lukewarm. And still only use cold air when blow drying. You don't want to mess this up now that you've had such good results. I think a loose scarf would be okay on your hair, but I wouldn't wear a beanie just yet. I actually wore ear muffs...they worked pretty well!
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I'm a little over 3 weeks PFC and my shedding seems to have slowed down, hooray! Luckily the weather literally *just* got cold-ish in central Texas, so I've been wearing a loosely crocheted cotton cap that seems to at least keep my ears warm and my hair from blowing around. I'm going to wait another week and then start washing my hair with my regular shower water, bumping it up to 3x per week. Still no blow drying for another few months though, don't want to risk it! Soooooo happy to have my hair y'all.
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I am an African American woman who will begin chemo in two weeks. I recently found out about the Cold Cap and would like to know if the process is effective on African American hair. Any comments? Thank you so much for this message board! Reading the posts has been very encouraging.
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Hi Rangoon-
We just wanted to pop in to welcome you to the community! We're sure some of our very knowledgeable members will be around to share their experiences with you, and hopefully answer your questions!
The Mods
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My routine mammogram in mid Nov turned out to be not routine at all. Long story short, I researched and considered family history as well as finding out I was triple negative before deciding rather quickly to have a double mastectomy with immediate reconstruction followed by chemo. Surgeon and plastic surgeon have been great. Really like oncologist, but he had never heard of the cold caps. He said I could certainly research & try on my own if I wished. At last week's appt, he said I am healing beautifully and could start chemo this week. I will have 4 dose dense treatments over 8 wks followed by 12 weekly treatments of Taxol
We did our research and have ordered the Penguin Cold Caps which should arrive tomorrow AM. We have freezer space, 2 coolers to transport, and have found 2 places that sell dry ice. I read many entries on the board and didn't see any answers to my question. Will my husband and I be able to handle the cap swapping by ourselves? I don't have anyone else to go along and the treatment center has never had anyone try them before. We plan to try a few practice swaps before freezing all the caps. Can we do this successfully on our own?
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Leesa, yes - many, if not most, of the cold cap users on this board had just one person to change the caps. (I had two.) You should be fine, but do practice with caps frozen from your home freezer. They will be harder to handle when frozen to the "real" temperature. Be sure to read the cold cap beginner/advice thread - I don't have the link, but if you read the last few pages of this thread I'm sure you will see the link. Just did a search - try this link: https://community.breastcancer.org/forum/6/topics/...
Rangoon - I know there have been one or two African American women who used cold caps and posted on this board, a long time ago, and I think they were successful. I suggest you contact Penguin Cold Caps and see what they say. There may also be some information on the Rapunzel website - rapunzelproject.org.
Pat
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starsarestars, I live in Wisconsin, and it was really cold last winter when I was capping. I have dogs and had to go out daily for at least 45 minutes and I did wear a hat. I bought a much less warm than normal beanie and dressed warmly enough to overheat a little. If my head got hot, I'd just take the hat off for a couple of minutes to cool it off (which was totally sanctioned by my rep). Especially if you're done with chemo, that should be fine. Also, the water doesn't have to be ice cold! Lukewarm water (or tepid if you're really nervous) is ok. If you have a wall shower head, you can do the scalp super quick in tepid and warm it up a little for the length if you have long hair. Winter showering with the cold water stinks! But you can cheat it a little. Hope that helps!
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starsarestars, I live in Wisconsin and have dogs and had to go out daily for at least 45 minutes last winter when I was capping and I did wear a hat. I bought a much less warm than normal beanie and dressed warmly enough to overheat a little. If my head got hot, I'd just take the hat off for a couple of minutes to cool it off (which was totally sanctioned by my rep). Especially if you're done with chemo, that should be fine. Also, the water doesn't have to be ice cold! Lukewarm water (or tepid if you're really nervous) is ok. If you have a wall shower head, you can do the scalp super quick in tepid and warm it up a little and step away for just the length if you have long hair. Winter showering with the cold water stinks! But you can cheat it a little. Hope that helps!
Leesa, yes, I'm with PatinMN. You'll be fine with just one capper. But definitely practice until you've got the quick change down. There'll be times when you need to make small adjustments after it's locked down, so the less time it takes to get it on for each cap change, the more wiggle room you'll have if it feels like you don't have contact somewhere and need to adjust. I think one of the biggest reasons people experience very thin spots at the crown or along the part is that they don't readjust when they realize the contact isn't there. You're the only one who can feel it, so don't be shy about quickly pulling it apart and tightening. It's seconds vs. thirty minutes of lost contact. So getting it down to begin with will really help out. (And know that all of us have screwed up a cap or two. It happens. Try not to stress about it.) Good luck!
LRFTexan, I hope you've contacted your clinic. I got frostbite and only had swelling/redness/burnt sensation along the hairline (1/4") and the part. I didn't end up losing that hair, or maybe just a few strands. Let us know how you are!
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Leesa,
Yes, you and your husband can totally handle the capping on your own. I had only one helper (my sister) and she did an amazing job of keeping the caps changed, temperatures checked, etc. We used the alarm function on my cell phone to make sure each change was done on time. It gets a lot easier after you've changed your first 2 or 3 caps, and you will be surprised at how fast time passes during the capping. It's a great distraction from the chemo treatment itself!
I looked at your signature line. Are you actually starting the chemo today (12-29)? That doesn't give you a lot of time to get everything together. If you can get your medical team to delay your start date, it would give you a little more time to practice with the caps.
Good luck and keep us updated on how you're doing!
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LeesaT-
Ok, my 1 1/2 cents......I hope you have your port placed when starting your chemo. I did not and they put the IV in my hand. That added to my failure with the caps. The IV was so painful, and the caps were heavy and freezing on my head. I needed to use the restroom and it just seemed impossible. My chemo center had never had anyone use the caps there before, although they were very kind, when I walked in with 2 large coolers and 3 family members, I felt very odd. There really wasn't room for all of us and the coolers in the main chemo area, so they put us in a private room. Thank god for that because by the end, I was a wreck. Needless to say, I sadly ended my cold capping after 1 1/2 hours.
~~I still believe that cold capping is brilliant and can be very effective in the right situation!! When advances are made, and cold capping becomes more easily available ( freezers, cooling machines) It will be amazing.
~~The thread that dancetracer has on here is extremely beneficial, make sure and read
~~ I am glad I tried the caps, if I hadn't, I would always wonder if I could have saved my hair!!
I wish the Best of luck to you, I'm sure you will be a success!!
Jodi
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3 months after chemo ended and hair is growing back at nape of neck where I seemed to have lost the most. I am so excited since my hair did thin considerably. But all in all I never had to wear a wig so I would consider myself a success story. Eyebrows came back quickly. Can't wait to be back to my old self.... If that is possible
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Thanks for all the info and support. I'm learning there is a pretty steep learning curve and moving so decisively keeps me on my toes with all the things to think about. I moved the start date to tomorrow morning since the caps arrived this morning. We've already practiced with them. They are were cold, but not frozen. We'll practice again with them frozen.
I did get the port when I had my surgery. That was recommended by all 3 of my doctors.
I do feel a bit discombobulated. The initial scheduler said I would come on back to back days (chemo day 1, fluids day 2) with the initial visit taking 6 hrs for observation. My chemo class chick said back to back days (day 1: 4 hrs, day 2: 2 hrs with no longer stay for 1st treatment). When I rescheduled, schedule dude says I'll only come 1 day cos my dr prefers to give extra fluids after chemo on day 1. Is it normal to hear so many different things for setting up this 1 treatment? I need to understand what my choices are as well as why which procedures & meds are chosen. I get why I'll be getting all the stuff except one thing. I asked chemo class chick what the steroids do for me, and she didn't answer me. Why will I be getting the steroids?
I am guessing a great resource for info will be the 2 oncology nurses who will be covering my doctor's area of the chemo facility. I understand it's the same 2 nurses every time which I like.I already have questions for them.
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LeesaT - you can do this! I remember being uncertain about procedure and what to expect but you'll quickly get the hang of it. Be strong in telling the nursing staff what you need from them to accommodate the caps. I found the caps could get too cold so my team would do an awful lot of checking temps between changes and taking a cap out early and kneeding it to bring it up to right temp.
I had dose dense ACT - 4 ACs following by 4 T. I lost a lot I think but not enough to need wig. At tail end, I had a few weeks of thin spot that I could cover with headband or wide scarf.
All the best.
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LeesaT, my husband did a great job with the caps! You can definitely get by with just the two of you. The first few minutes of when the cold cap actually goes on your head for the first time are the absolute worst! I thought I couldn't stand it, but my husband talked me through it and once my head was cold, I got used to it and didn't have any issues. You may want to take some Advil an hour or so before starting. Also, you'll be getting a lot of meds with your chemo (steroids included). Good luck!
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hi LeezaT,
Good luck today, you guys totally got this! It's a really long day doing the cold caps. I think I was at the infusion center for around 9 hours. It is totally worth it! I ended up taking 1/2 an Ativan pill to relax and 2 Advils for the headache. The 1st cap is literally the worst, but then they are manageable.
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Back home with treatment 1 checked off the to list! The cold caps certainly kept us occupied. And to think that 30 minutes seemed like ages when I taught school. Some of the caps had more gapping than others because they were frozen so hard. I knew they would be really cold, but I didn't realize they would be so heavy. Any suggestions on leaning back in them? It felt lying on a brick
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Leesa, congratulations on finishing your first treatment! I used a neck pillow - the sort of u-shaped kind - which made it much more comfortable to lean back.
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Well it's New Years Eve in my little corner of the world and I want to wish everyone a happy and healthy (and hairy) 2016!! Good luck to all of you going through the process of cold capping you can all do this what got me through was thinking of the alternative if I didn't cap and that gave me the strength to keep going.
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hi all....had first chemo dec 23, did fine with the cold, but had a killer head ache from the tightness and weight. Will use a neck pillow next Wednesday to help with the weight. All in all did great. No hair loss and I'm being very gentle with my hair. Have 3 more cycles of AC 2 weeks apart so that goes through the first week in February. Then 12 weeks of Taxol. Has anyone done once a week for 12 weeks? Do we need to use the caps for the full 7 hours every week? Had issues with constipation over Christmas but better now.. Am not looking forward to 12 weeks of caps, but oh well....better than no hair or growing it out for a year.
Thanks for listening...Carra.
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Mikie - I didn't do AC, but I had 12 weeks of taxol (plus herceptin). I did the recommended 4 hours of capping after the taxol drip was finished, so it usually ended up being a total of about 6 hours, with the 50 minutes of "cold-up" time, an hour of taxol and four hours post taxol. It might be OK to cut down on the 4 hours, but I figured better be safe than sorry.
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Mickie1956- I did AC and have now done 2/12 Taxol. We are doing 50 min pre chemo (during premeds), 1 hour for the Taxol and 2 hours after right now because there is still AC in my body (per nurses). After number 3 we will cut that back to one hour. There is a lady on the weekly taxol thread that did one hour and a lot is studies out there comparing 45 minutes to 90 for post. As they le plainer to me, we know 4 hours works but is it really needed. Most of the newer studies say it's not. I was scared trying a new regime but came to be at peace with it.
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