Cold Caps Users Past and Present, to Save Hair
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Thank you everyone for sharing all this info. It's helped me so much to not fear this process and to know what to expect. I have been away from here for a week, since my 1st chemo, which did not do too good on me. I was more afraid of the nausea as it's something I endured during all my pregnancies (Hyperemesis gravidarum). Today, I'm feeling a little better. Nausea has taken my mind away from hair, but as I approach the dreaded 14 days, I'll keep all this info in mind.
WW-what an impertinent nurse that is! She needs a class on bedside manners. I had a great nurse on my first treatment, I wonder if I can request her again. I would love to see you there after your last treatment, with a mini fan blowing on your hair as you pass by in front of nurse Ratchid. Love the shirts design! Like the color too, I'm not a baby pink girl, love reds and fuchsias.
Mazie- I'm 3 weeks behind you, seems you are doing well. I called my rep concerning the cold caps use in between treatments. I was told that for my specific situation to use twice per week, first cap 20 mins and then three more for 30 mins each. I've done it once only, but mostly because of a terrible headache after chemo which lasted for almost 4 days. Wearing the caps helped me alleviate that headache.
2-boys mom- how are you doing after first chemo? Hope the cold caps kept your mind busy, away from the chemo stress.
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I just got an email from the baby store I shop and it's about a Cradle cap treatment named Gentle Naturals. Just wondering if this might be a good product for anyone who's having this problem.
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sweet mom - it probably would be because basically it's a cradle cap problem. As for your nausea, have you asked about Emend? I read about it on here and asked to be given it and had no nausea to speak of. I suffer from motion sickness - I have even gotten seasick while standing on a dock looking at a boat gently rocking - so was afraid I would feel nauseous.
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sweet mom- doing ok after first treatment! Just a little tired! The caps kept me busy that is for sure! How did the first hair washing go for you? I am very anxious and do not want to mess anything up!! Glad you are feeling better today!
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Front page above the fold of my local newspaper is this photo showing the back of my head where my hair has thinned the most! Agh! Thought I'd share it with you for Chits & Giggles. (I'm the short one who still has hair.)
In Chemo Party planning mode. Here's the design of the chocolate bars I'm giving out as favors. I again removed my name for privacy as this forum can be read by the public.
Off to wash my hair!
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So much good news here! Love hearing the success and humor
Yay 2 Boys on completing your first chemo!!! Glad it went OK! 0 -
I was gong to take a nap but wanted to check, this our Cold Caper's home.
WW- You, funny! Always makes me laugh. I love the chocolate idea. I'm so into party planning for my kids birthdays. May I copy you? I'd love to do the same in my last chemo day.
Hortense, I hope it works, and I'll keep it in mind in case I need it. I'm one who has to wash constantly or hair gets dirty fast. Probably because of lots of thick hair. I'm taking ondansetron(zofran) and compazine. My nurse called this morning to see how I was doing. She also prescribed Reglan. If this doesn't work , I'll ask for Emend, thank you.
2-boys mom- I'm happy for you. I've already washed twice, I think I'm more nervous when I wash my hair than when I gave my firstborn a bath. Lol
Mdg- I second that. In the middle of what we are going thru here is where I find positive support and a good laugh.
One for all- All for one.
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WW- you look good, what bald spot? if I was there, I wouldn't think you are doing chemo.
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Sweetmom - My hair is thinner in the back and there are a couple of bald spots that are hidden by the hair that hangs over unless that hair gets matted down or pushed in the wrong direction. Of course this means I'm constantly checking the back of my head to see what direction my hair is going.
Yes, you and anyone are welcome to use anything I post for yourselves. I feel like I'm starting to get me back. I am usually a fun loving, adventurous & active person and I felt like that was slipping away. Being silly and creative is good therapy for me. If you ladies enjoy it then all the better.
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Warrior, it's good to finally hear you sounding confident that the caps are working. You certainly don't look like a cancer paitient in the picture : )
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sweetmom - I learned about Emend on this website. It is taken the day of chemo and for two days afterwards, at least when given in pill form. It must be powerful stuff because it costs about $500 for those three pills, but fortunately my insurance covered it.
WW - your hair looks wonderful. Nobody could guess that you are going through a chemo that causes hair loss. And, kudos to you for going out to town hall for a public meeting!
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Hortense- Thank you! I woke up with a knurly knot lol First thing that came to my mind was your suggestion about corn starch. Only dipped my fingertips, rubbed the gnarl and it worked like a MIRACLE! No pulling, no combing, nothing else, just Corn Starch. My 10 yrs old has curly knurly hair, my poor baby, all these years suffering from pulling. I even cut her waist long hair down to her chin because of the knots impossible to remove, during a vacation trip. Thank you, again.
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You are welcome! It is amazingly silky to the touch and helps the hairs slide across each other.
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Warrior Woman…what bald spot?!! You look great!
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Greetings. Thought I'd check in with you all. Can't remember who told me to "hold on tight" but you were right! Day 16 I started shedding and haven't stopped since - though there are days where it is little to none (day 16 was the worst). I'm very grateful for those days. I've been trying to keep it all - as I plan on using it for an artwork down the road - I used to keep them on my studio wall in baggies - but I'm putting them away - too depressing too look at on a daily basis. I'd say I'd lost 1/3 overall. My hair was thin to begin with (and frizzy) - so breathing deep that what I have hangs on. I've lost the most over my ears where I'm guessing I wasn't covered as well with the cold caps - a friend told me it looked very punk.
I'm leaving my hair down to cover regardless. I'm a little over a week past my 2nd round of chemo. Past the worst at least. So half way done and I still have my hair! I've very thankful - hugs to all.0 -
Good news artsmart!! Glad you are half way there. You will be done before you know it. You are losing hair exactly where most of us did so sounds like you are right on track
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Hi Ladies, Does anyone have recommendations for hair color products. I think I am ready to dye (can't stand it anymore), would appreciate any advice on what is safe to use. Thanks.
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I used Clairol Beautiful Collection at first but it is messy. It does come off on clothes and stuff at times. A few months after that I started using Naturtint and I get it on Amazon. Health food stores also carry it. It has far less chemicals in it than regular color kits. I still use it every few weeks.
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Hi All,
Well I am 6 weeks post treatment and feeling really great. I was very fortunate as I had very little hair loss. I also did not lose my eyebrows completely, they definitely thinned but not a complete loss same with my lashes.
How long did you continue to wash your hair with cold water after treatment? When did you put any color on it? I have highlights but now going for the ombré look and thinking of going back to my natural color.
Hang in there everyone that is currently using the caps. They really do work.
Sweetmom...I live in broward county! Not far from you. 😃
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I kept using cold water until my shedding slowed - about 4 months post treatment. Brrrrrrrrrrr!!!!!
As soon as it seemed to slow down just a bit I turned the warm water on. I couldn't take the cold any more!
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Thanks. My only problem is that I never really shed a lot. I probably only lose about 20-25 strands per wash. I have a ton of hair!
Yeah I think washing with the cold water is what I hate the most...but I still have hair.
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I don't know what I'd do in your situation...the shedding motivated me to endure the cold water for a while...not sure what I would have done if I shed minimally!
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Hi Lisa- I almost made the drive to Broward (at Memorial) when deciding chemo. Didn't have the support needed where I used to go. I live way south of Dade county, thanks God, I found a center closer to hone and they are actually cheering for the cold caps to work. I'm the first one there and the first day had many people stopping by and offering their support. My nurse is a sweetheart. When she saw my husband almost sitting on the caps to warm them up, she joked about putting everyone in line to take turns warming the caps. Always asking if she could help. I rejected politely as I didn't want them to feel its a burden and take away from future cap users at that center. I might let them help on the third infusion so they have a feel of how easy it is. I'm glad you are doing great post treatment.
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Hi everyone! I'm new here and hope I can join in on this thread
I was diagnosed last December and just decided on chemo treatment (taxotere cytoxan) and will be doing a clinical trial at UCSF to try the dignicaps. I wanted to see if anyone has had experiences with the dignicap, and wanted to see if there is a cold caps 101 post anywhere (things to be prepared with, things to do/not to do). The clinical trial coordinator told me to be prepared to lose 1/3 to 1/2 my hair--is that typical with cold caps? 0 -
Diem-Tell whoever is in charge of the trial to lower the temperature of the cap to -30.0°C. That is the temp the other cap users use. Most cold cap users shed 20%, some more, some less. I've helped many people and believe the Dignicaps would have greater success if they reduced the temperature of the cap.
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Hi makingway--unfortunately I don't think I can change the parameters of the clinical trial. The temperature selected for the trial is +3 C/ 37 F--this seems way off then your recommended temperature. Is this correct? Maybe that's why the quoted hairloss is a lot higher than 20%...
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I wonder why they chose such a higher temp? Perhaps you could ask how they came to decide upon that number. It must be based upon some kind of research...but I think regardless that number has to be flawed. I agree with makingway that is appears the AVERAGE hair loss is probably around 20%, from the reports I have read here.
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Lisa- I am 5 and a half weeks PFC, so pretty much the same as you. My hair has continued to shed but I never really had any big sheds or anything. When my hair is clean, I think it looks pretty normal! I am so ready to get highlights again and wash my hair with warm water. My goal is to wait 3 months. I know PCC says to wait 6 months before using any peroxide, but if my hair isn't shedding anymore, then I am planning on getting highlights before my cruise at the end of April. Let us know what you decide to do!
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Daye! All sounds good:) I hope you will celebrate big on this cruise..... Nice to hear another success story:)
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Thanks mdg, did anyone not wait 6 months to use peroxide hair color? I am 9 weeks out and cannot wait another second! Did anyone use hair color too soon and have a problem?
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