Cold Caps Users Past and Present, to Save Hair
Comments
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Lighthouselady - I have fairly silky straight hair and ended up with a few dreadlocks too after my second chemo session when hair was shedding out steadily. Mine were on the sides of my head. I was not happy at all. I stood in front of a mirror and struggled a long time to work my way through them, just like Curly. I got one out with considerable loss and much frustration - but that may have been hair I was losing anyway. I ended up snipping the other one once I reduced it in size as there was no way I could have puzzled it out. It was too matted. I was very careful not to let any more form.
I couldn't use any of the combs I bought, or the pick, they just didn't work for me. I'd pull out far too much with them. I switched to using a wet hair brush. The plastic vented ones that can be used with a hair dryer with plastic bristles set far apart. I would carefully just use the top row or two of the narrow end to work through my hair starting at the bottom of each lock. I found I could work out tangles by gently inserting a few bristles at the edge and loosening it.
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Hey lighthouse - another curly girl here. The dreads are the worst. Like curly123 I used a pick to slowly work my way through them. After the dread-scare, I also made sure that I combed my hair straight down with a wide-tooth comb twice a day. Just a pass with the comb a few gentle strokes or so - once in the a.m. and once in the p.m. to ward off the bird's nest. Those curls have a mind of their own and can be tough to deal with when capping. My curls also went from heavy and springy to thin and sort of fly-away. They are that way now at 7 weeks PFC. To try to mitigate the crazy hair I spritz it with a water bottle (between washings) and then spray in some leave-in conditioner. That gives the chemo'd curls a little bit more shape when they dry.
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I started getting some matted hair as well, despite best intentions. The issue I'm having is that I'm having night sweats and hot flashes and my hair gets damp from that and then it makes it easier to get matted. I've been using all these organic products and a good detangler but they just don't leave the hair as soft or easy to work with as other conditioners, IMO. I know it's prob against the rules but since I have long hair I put some Pantene conditioner onto the ends and washed it out after a min. Then I used the organic detangler on the hair closer to the scalp. The Pantene made it easier to brush out and tangles. Maybe just using some thick and creamy conditioner on the ends will help with keeping the tangles away. Also, I find the putting my hair into loose braids helps. That's all I've got!
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Lots of good advice for the dreadlocks! I didn't have that problem but I did go through the normal panic state more than once when I was sure my hair was all going to fall out. I'd touch one loose hair and 5 more would follow. Mostly noticable to me, and I just had to trust the process. If you make it through that first 21 days with hair, you'll be okay although more shedding may come...when it does, pin your hair back and leave it be. I found I was looking at it like 10 times a day for what I'm not sure, and every time I woke up during the night, checking for clumps or patches! In the end it was all fine, and now I am back to my normal routine and it all seems like a lifetime ago. LOL at least the capping process kept my mind off the chemo! That was the least of my worries.
Good idea about 'refreshing' this board so it's more obvious to new visitors. I was thinking maybe we could start a new board called 'Cold Cap Success Stories' where we could post a brief recap of our stories and add a picture. I think that would encouarge a lot of ladies, and make it easier to find the info they really want. I'd say we'd use that first post to give an overview of the caps and point out the key things like not to let your MO discourage you, that it can't cause cancer in the brain etc so that would always be on the top. I know when I found this board, I read every page and it was so encouaging to see each person's story and loved when there were pictures. But now there are over 300 pages si uf we each did one post to the new board we could shorten that up a lot for those looking to get started. Any thoughts?
Happy capping!
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Thank you for all of the great advice.
I hate to say it but I think I might have to declare defeat. Today was hair washing day, and between the washing and the combing, I lost about 50% of my hair. It's just coming out in dozens of strands at once. I just watched the hair slide out as I rinsed it, and when I combed it (gently, while holding the roots) clumps were just coming out all over the place. Even after getting rid of all of those loose hairs, I can still see tons of flyaway wisps and most of them aren't attached.
I don't know why... I followed all of the instructions. Just my bad luck I guess. Maybe my hair is too thick and my scalp didn't get cold enough? I thought making it past day 21 with hair was a good sign, but after my wash today I can see through my hair to my scalp all over the top of my head... no way will I end up with any coverage after 6 more chemo treatments.
My hubby came home and asked me if I'd cut my hair, so it was even noticeable to him. I don't know what to do now. I can't see keeping up with the effort, expense and headache (literally and figuratively) if I'm going to end up bald anyway. The hair I have left is quite attached still, but I would have to start creatively camoflauging the thin spots already. I think looking at my thin, scraggly hair every day might be more depressing than donning a wig that looks just like my old hair.
I thought I was prepared for this (I had the mind-set that it would be a bonus if the caps worked, and no real harm if they didn't), but as soon as hubby hugged me the waterworks started.
I guess now I have to decide if I want to pay $500 a month plus dry ice and sit through the cold caps in hopes of keeping what little remains.
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Lighthouselady - The AC/ACT chemo is very hard on the hair. It was the treatment that had originally been considered for me and I remember after reading all of this long, long thread, I walked away thinking I'd be lucky if I kept 50% of my hair when it was over and done. It seemed to me that about half the folks who used the caps with AC were happy with the results and the other half felt it was not that successful. People did say that it helped with regrowth though and that even if they shed more than they expected, it seemed to grow back a bit faster thanks to the caps.
It's hard to say what will happen with your hair from here. Maybe it will continue to shed heavily but maybe it won't. Maybe this is that "big shedding" period that has been mentioned by past users. Maybe you'll keep the rest of what you've got. There is just no way to know. I remember someone suggesting using clip in extensions to fill in the parts that are thin. I looked into some of the Jessica Simpson ones and they look really good. It's something you could try out and see how it goes. Think of it this way ( I try to): if nothing else, the caps offered you some extra time where you got to keep your hair. Even if it is only a couple of months, that's two extra months you had hair. It shortened the time in which it was apparent to others that you were going through chemo and allowed you to look like your usual self. That is still valuable and not necessarily a defeat.0 -
I should also mention that crying seems like a totally natural response and I'm giving you a virtual hug right now. This whole experience is very difficult.
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That sounds like a great idea Hope!
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(((((((((((lighthouse)))))))))))). So sorry this is being so hard on your hair and your heart.
You said what is left is hanging on tight so hopefully it stays that way. It should get cold enough not being as thick this time and help it hold on better. You lost 50% but you still have 50 %. You have the caps so you can give it another go and see if it slows. You are in the worst of it but half way through AC. Most say it gets much better with Taxol.
Shipsgirl--can you weigh in here?
Good Luck Michelle. We are all praying for you!0 -
lighthouselady-I have only read of 2 women who had success with the cold caps on the ACT regimen. Of course the Penguin Company will claim there are more...There was a woman several pages back that was on the same ACT regimen. She was told she would have success with this regimen. She didn't and ended up having to contact the her State Attorney General's office just to get her deposit back.
What I would do given your situation, is, return the Penguin caps and instead purchase your own set of Elastogel caps. This would offer you some protection of your hair follicles while also saving you thousands of $$$ in the process. You can have your own set of 8 caps for $700.00. No $500.00 monthly rental charges. They are yours to keep. The A in ACT is the hardest on the hair. Once you get to the T-Taxol, your hair will start growing, if your using the cold caps. Taxol is even less harsh than Taxotere on the hair. If you continue with the cold caps and your scalp is exposed wear a thin cover over your hair i.e., a wig cap. If it is the wig cap that is nylon material place a layer of gauze on hair first, then the wig cap.
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Elastogels can be bought on amazon for $85 each and they did have free shipping. They were super easy to use too. I don't know if you have time to get them and get chill them by Thursday ,but you still have your PCC until the end of the month, right?
Also if it helps the budget, we did fine with a rotation of 6 caps. They got cold enough between uses.
Best of luck0 -
Michelle, I wish I had some words of wisdom for you but all I can do is tell you that I'm included in the group hug.
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lighthouse - I would not use elastogels for AC. It's just too agressive for that. I know of several others who have had success with PCC on ACT but everyone is different. I like the suggestion to give it one more treatment and see how you do. It's not anything you did right or wrong; it's just not a guaranteed thing.
Hope - I get what you're saying, but isn't there a cold caps "getting started" thread already? I'm sure I read it when I was starting out.
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Hey ladies - had my 2nd Taxol infusion on Thursday. I tell ya- this stuff is taking me down! I've had 4 AC infusions since July, but the after starting Taxol my hair has fallen out in such a large amount. It's sad... I'm so blessed and feel lucky to have hair. I feel like a complainer talking about more hair falling out - I get it, I have hair - but this is a lot of money spent. It's hard - the one thing you're trying to control. It's just hard. Cancer sux. Has anyone used Nioxin products to help hair re-grow faster?
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Hello! I'm just starting chemotherapy with the caps and wanted to see if anyone who used the caps has experienced any recurrence?
Thank you,
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Hi ladies-
I was reading the Sept. issue of Real Simple magazine and I saw something that looked interesting. There is a product called "Salon Grafix Healthy Hair Nutrition Protein Mist Restyler" ($8 at drugstores) - it "functions a lot like a dry shampoo that absorbs oil". It looks like you spray it on your hair and it makes your hair wet so you can restyle it. It's also supposed to have moisturizers and strengthening proteins. I'm not sure if it is something that would be gentle enough to use when you are using cold caps but I thought I would pass along the info to the ladies on this thread.0 -
Thanks for thinking of us Karsie!
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I'm finished!! Had my last radiation treatment today. Ironically, I was diagnosed on this very date one year ago. After a clinical trial, surgery, chemo, cold cap anxiety and radiation, I have finally reached the end. What a relief. I just had to share my news here, since I think only those who have been through treatment or are currently in treatment can truly appreciate how physically and emotionally difficult it all is.
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So happy for you jc254!!
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CONGRATS JC!!!!
YIPPPPPEEEE!0 -
jc - happy dancing for you. I am truly thrilled for you and since I'm only a couple of weeks away. I think I can almost understand how you feel.
To those in chemo, hang in there, there really is an end to this.
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Shipsgirl, I noticed that we started chemo and radiation on the same days. I had the shortened rads course so you must be only two weeks behind. We'll be doing the happy dance for you too soon. Funny that I had the "Canadian" protocol but you're the one in Canada.
As a reward, I'm having my hair colored on Friday. I'm still shedding and although I can notice a difference, nobody else seems to notice. I'm 14 weeks PFC and hoping I don't set any kind of cold cap record for the longest PFC shed.
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funny, jc. My breast is too large for the short rads cycle. I was really disappointed when I learned that I'd have to do 25 plus 7 boosts. But so far so good, so I'm not complaining.
Yay for colour! I am thinking about trying the blow dryer and some product to see if I can put my hair back in its old funky style. I'm not shedding but I'm still so scared. If it all broke off, or fell out, my regrowth isn't yet enough to stand alone.
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mc_in_nc - I haven't heard of a recurrance in the year I have been on this thread. If you are concerned about possible scalp mets if you use cold caps, they are a very remote possibility. Breast cancer has definite areas it metastsizes to, those seem to be lymph nodes, lungs, liver, bones and brain. Not scalp. You should be fine.
jc - Congratulations! Take good care of yourself. You have a lot of healing to do until you are back to your old self.
lighthouse - I am terribly sorry that you have lost so much of your hair so suddenly. ACT is said to be very harsh.
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I have my third AC tomorrow, and while I would love to say I will keep trying, I think for my mental health I'm better off not using the caps anymore. I have lost so much hair already after two treatments, and what's left feels dry and matted and "dead", that it's more depressing to look at that every day and try to take care of it while bunches and bunches just keep coming out in the comb. I just don't see myself having luck keeping very much hair at all with two months of chemo still to go. It's just so much work (and so much money!) to try and save hair that I don't even want to see on my head at this point! Please don't think I'm giving up easily. I SO wanted this to work, and if I was just going through a shedding period, that'd be different. But my hair is coming out, plain and simple.
Oh well - at least I tried! If I hadn't, I would have always wondered what if.
I want to thank all of you on this board for all of the advice and tips and tricks! I'm so proud of all of you who have tried this and stuck with it. I wish it had worked for me, because the actual capping wasn't unbearable. It didn't really bother me at all past the first cap (and the last... by then I was DONE!) but I knew that being on dose dense AC it would be a crapshoot. Honestly I'd hoped to end up with the amount of hair I have right now, but the way it's coming out, all the babying in the world isn't going to make it stay.
Whatever in the world am I going to do during chemo - hubby and I are going to be so bored!! LOL
{{hugs}} to all of you, and I'll be cheering for those of you currently capping!
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Good luck in the rest of your journey Michelle. You did put up a great fight for your hair, but I understand just being ready to move on and not stress about it too. Can't wait to check out your new blog tonight! Hubby is out of town so first I have to get homework done and then it is feeding time at my zoo!
Hang in there, I know it has been tough. You continue to be a real trooper. I know you offer a ton of support in the current chemo thread too.0 -
lighthouse - I don't hear you giving up; I hear you making a choice. I wish the caps had produced the results you hoped for, but you were courageous to try. And you were a pioneer. There are people in your world that now know about capping as an option because of you.
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Lighthouselady - A big hug to you. I wish it had worked out for you but I'm proud of you for trying.
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I finished my last chemo in Jan. I started with long, thick wavy hair about 5 inches down my back. I shed between 1 and 2 alot and then it tapered off between 3 and 4 but it got frizzier and dryer. I never used a pick or comb from Nov until about the end of Feb....then I used my grandaughters baby brush just to fluff. I always used my fingers to detangle and get through the matting ( mostly in Dec.) I ended up losing mostly in the back of my head and nape and behind my ears. When I went back to work I was paranoid about how much I lost but most people who had not seen me since the end of Sept. thought I cut my hair. I still pin it up with baby clips on the sides to give more fullness in the back. That buzzed hair loss is now about 3-4 inches long and helps look like some fullness again. I trimmed the straggly hairs and my hair is now shoulder length and getting fuller little by little.
It was a journey to say the least. Thick long hair is the hardest...give yourself a hug for all of you going through it and know that most of us , even those who lose alot, will see light at the end of the tunnel.
My avatar is updated from last month.
Hugs to all.
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Michelle, I commend your courage and tenacity to try to Save your hair. My hair started to really fall out the 3rd week after my fist chemo. I quickly gave up the fight and now wear wigs 😔. Now my eyelashes and brows are getting too skinny . I am tempted to ask for a rx for Latisse, I heard it can work on people in chemo ???
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