Cold Caps Users Past and Present, to Save Hair
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Just to let you all know, there is also a new article (only 4 days ago) has been put up on the BCO Main site Cold Caps that may provide some quality information.
All the best
The Mods
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Thank you Moderators!!!
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Yes, thank you Moderators! That is a great write-up, we REALLY appreciate you getting the word out - thank you, thank you!!!
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I just joined the forum yesterday but wanted to ask a question. I am 12 days post chemotherapy on my first treatment. I have to have 4 treatments followed by 6 weeks of radiation and then can have the implant after that. I used the hypothermia caps that my onc. recommended from Amazon and put it on 30 minutes before my Taxotere was given. Then given by cytoxin and after everything was done left the caps on for 2 hrs. post treatment. We put 4 caps in the freezer for two days before treatment then got 20 lbs. of dry ice and put them in the freezer and changed out every 25 minutes only leaving head uncovered for no for than 20-30 seconds while changing the caps. I am using baby shampoo every 3 days and I guess I will know if I am going to lose my hair in the next week or so. My hair is still very oily so was wondering if I don't lose my hair in the next week or so could someone recommend a different shampoo which might take out more oil or something with no chemicals that I can spray in my hair to make it less oily between the days of shampooing. I let my hair air dry and use nothing else on it. Side effects for me is just wired and tired. After 7 days not as tired and feel a little better each day.
Any suggestions on a different kind of shampoo or spraying in something to make my hair drier.
Thanks.
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Hi there..
I am brand new to this board and am posting on my mom's behalf. She will be starting her first round of Chemo next week. We are from the San Jose Bay Area. I was wondering if anyone here knew of groups that offer services with helping use the cold caps. This will be her 2nd round of treatment. I am worried I will not be able to get the time off from work to help her during each treatment with the cold cap procedure. We are brand new the the cold cap family and we have no idea what to expect, except for what we have read online. This will be her 2nd round of chemo, she was recently diagnosed with her breast cancer relapse. =(
TIA for all your help!
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Fabian- I know most of us here use the penguin cold cap system. We wear the caps for at least 50 minutes prior to starting chemo and most of us are told to keep using the caps for four hours after our chemo infusion. I don't know about the caps you're are using but trying the penguin formula wouldn't hurt. I know there are a couple of ladies who may have more knowledge on your caps.
As for shampoo, dermorangix is the one most people I use however it's more moisturizing. I found using Giovanni Tea Tree oil shampoo, mixed with water in a hair color applicator bottle, then leaving it on for a few minutes worked the best. I follow with conditioner on to ends, Macadamia Nut Oil Deep Treatment, then mix apple cider vinegar and water for the final rinse.
There were a few new ladies asking about coloring and styling. No color at least 3 weeks prior to chemo. If you highlight, you might consider going to your natural color or just go with an ombré look for awhile. You cannot color with regular color for 6 months after however, many have colored with natural products before that time. As for styling curly hair - no blow dryer, no heat styling it at all (unless you have really long hair like mine and can just curl the ends). You will likely have to wear your hair curly throughout treatment. Again, Giovanni and also deva curl make nice sulfate free styling products. Alterna also has great products that are safe but a little more expensive. The idea is to baby your hair. Gentle, gentle, gentle. Consider reading through some of the thread to get an idea. Good luck!
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To those wondering about coloring before treatment - DON'T! I made that mistake and as result my hair became very damaged and easily broken.
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I am 28, so I don't have to cover up the grays yet, but I do highlight my hair and I did color about 3 weeks before my first treatment to get closer to my natural color and 3 months after my last treatment with normal blonde highlights and didn't have any issues. I'm not saying I recommend everyone do this since it doesn't really follow the protocol, just wanted to let y'all know that I didn't have any issues from it!
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Oh, and we are in the process of editing and updating our content on cold caps as we speak
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Has anyone NOT had success with them? One of my fears about chemo is looking different. I'm a private person and having my hair throughout treatment would really help me deal with all this. I know there are meds for nausea and blood cell count, but nothing for hair loss. That's why I was glad to find this group!
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Leslienva - penguin cold caps boast 90% effective on their website. I'm not sure How they measure success - whether that means more than 50% retention or just coverage in general. However, it all depends on your hair, the treatment you receive, following the protocol precisely,etc. For the most part, most are successful in maintaining coverage. Some ladies doing harsher treatment, such as ACT have had success also but some have been unsuccessful for one reason or another - whether it be the chemo regimen, their own body chemistry, quitting early, etc. Unfirtunately there is no definitive answer. If you know your treatment plan, you can look on the penguin website or search this thread for women who have had that treatment to see their results. Hope this was helpful.
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Thanks! I haven't met with my oncologist yet so I'm not sure yet if I'm doing chemo or if so, what kind. I'm trying to research ways to keep my hair if chemo is recommended. I haven' seen much about cold caps being used on the other sites I've visited.
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Leslie keep in touch with us as your plan takes shape. The caps work great for so many people, so stand firm if your onc pushes back...many of us had to fight to use them but there are hundreds of success stories on this board. This is my pic from my last day if chemo...maybe not my best look but I had lots of hair! Good luck to you!
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hi awpang! How great to help your mom in this way. We had another mom/daughter team a few months ago and they did great! I know we have cappers in your area who may have suggestions on backup assistance...I also think you can check with the Rapunzel Project and they may have ideas. You can do it!
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Always so Inspiring Hope! ((hugs))
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Love that pic, too, Hope!
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Hope - ♥️♥️♥️♥️♥️♥️♥️ You certainly chose the right screen name. You had Hope and now you give us going through it Hope.
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Hope-Love your pic! And the message. We are our greatest advocates!!!
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Hope - love your pic! Thank you for always there for us!
I'm going into my 3rd infusion today. After this, I have one more to go. 3 more weeks and I'm done! I know I still have to baby my hairs for a while, but I can't wait to send the cold caps back!
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Good Luck today HockeyCat and Daniella! sending powerful healing thoughts your way!
And a day of easy capping with minimal SE!!!!
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hope you are just amazing.! Such a great message.
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good luck today hockeycat and Daniella.
I sent my caps back 2 weeks ago...Best. Feeling. Ever. :-)
Second best feeling ever? Going back to work this week and seeing the looks on the faces of the few people who knew I was in chemo...
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barremom, Raindew, thank you for your support!
Premeds made me sleepy, so the whole process went quickly to me. My poor hubby had to wake me up for every cap changes . He became a pro!
Hair shedding was worst around the 2nd infusion. It subsided in about a week. Does it get worse again after 3rd and 4th? I still have eyebrows, eyelashes, and hairs on arms. I shaved my legs once and they seem to grow back very slowly. I wonder I'll have another massive shedding .... Hope not...
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I was wondering the same thing HockeyCat. I had a bad shedding on days 20 and 21. My hair has been shedding little by little since then. After my 3rd infusion I washed my hair to see another big shed. Not as major as days 20-21 but still enough to make me feel stressed. I have two balding areas on the sides of my head that I can cover up with my hair. I am scared they will start to widen.
My hair is definitely not what it used to be, thick and easy to manage. Now it's wispy, dry and has no real shape. When I feel what's left of my ponytail it's like a possum tail. I am worried that I wont be able to keep the rest to the last infusion on the 31st and then even after in the post chemo period. I wonder if I am eating wrongly or should be on a low or no sugar diet. I drink a lot of water. I guess there will be a time when women will know exactly how to prepare the chemistry of their bodies for the least amount of shedding. We are still in the weeds here.
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For most people, the worst shed is right around the second infusion. There is a bit of an increase after the others, but not nearly as much, then it goes back to a steady shed. After chemo ends and you can wash your hair a bit more normally, a shampoo like Nioxin will help remove the build up that is weighting down your hair and making it look thinner than it really is. The hair that does not shed continues to grow normally as evidenced by natural root colors in women who do color.
The follicles of the hairs that shed rest a bit before regrowing. Chances are that by two months post chemo you will be able to see lots of regrowth starting to fill in all over your head.
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For what it's worth, I had a big shed after my second infusion too, but I just had my 5th one yesterday, and haven't had any more big sheds so far. It is continuing to shed on an ongoing basis, but it's pretty consistent. One more treatment to go, then I can send the caps back too! Looking forward to it.
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SueBe- On a bright note we're almost done YEAH!!! My last TC is 10/30 and yours 10/31! Your description of your hair matches mine. I couldn't put mine in a ponytail if I wanted, there's just not enough volume. I just had that one HUGE shed after #1 and have just been shedding normally since. I'm hoping what Hortense says about our hair being weighed down is true and that Nioxin must be a miracle worker! I too will be holding my breath for the next 6 weeks or so.
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How long after chemo is over do you still have to worry about your hair falling out? Also, for those of you on CT, did you get neuropathy or did you use ice on your hands and feet? How long were the infusions and how many times did you have to switch caps?
My MO reccomended four treatments of CT over 10 weeks.
Thanks!
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Leslie -
I'm not done with chemo yet, so I'll leave that part of your question to someone with more info. I am doing CT, though. I do have some minor neuropathy, being controlled by l-glutamine and generic Cymbalta. I'm not icing hands and feet, because I'm SO cold when doing the cold caps that I just couldn't stand the thought. I'm not having any nail troubles, though. I take my own heavy wool blanket and heating pad to the infusion room to keep me from shivering.
My pre-meds tend to last about 30 minutes or so - they sometimes slow them down, since I need 50 minutes pre-chemo to be capping. The actual chemo is 90 minutes - 1 hour for Taxotere, and 30 minutes for Cytoxan. I change caps at 20 minutes (x2), then start chemo 10 minutes into 3rd cap, which stays on for 30 minutes, and then 30 minutes for the rest. I continue capping for 4 hours after chemo finishes - at home, since I am using dry ice and we don't live far from the cancer center. This schedule is all per the PCC instructions, which they will send you when you sign up.
All told, I am capping for about 7 hours each time.
Hope that helps!
Becky
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Leslie - I'm not my hands and feet, the same reason as KILin's. Icing my head is enough for me. I'm taking glutamine. My hands and feet get itchy sometimes starting this past weekend. I washed my hands in cold water then put moisturizer, that seem to help. My cold cap schedule is petty much same as KILin's. Only difference is Cytoxan. It takes an hour for me.
I'm also curious about how much longer we have to worry about hair shedding after chemo.
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