Cold Caps Users Past and Present, to Save Hair
Comments
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SoCalGrl,
I agree with pch - you need to do what you feel is best for you, and no one here is going to try to push you into one choice or the other. I do keep hearing that TC is supposed to be one of the more successful regimens for capping, so it's possible there may be other things going on as well. The shedding might also be influenced by other stressing factors, such as your recent major surgery. I can tell you that the majority of my thinning happened in between round 1 and 2 of chemo. After that, it seemed to level off. You still have hair, if you want to continue capping and try a topper as pch suggested. If you feel like giving capping one more shot for round 2, you'll probably know for sure pretty soon afterwards if you want to continue any longer. It does seem that regrowth starts to happen pretty soon once you are done with chemo, so if your shedding slows down, I'm thinking that the thin spots would fill in pretty quickly. As pch said, we're with you, either way :-)
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For those of you who did ACT chemo did you take L-glutamine, B6 or both during both chemo week and off chemo week or just the chemo week? I just had my last AC yesterday and will be starting taxol on 9/22. Also did any of you start taking them a day or 2 before getting taxol each time
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I took L-glutamine right before starting Taxol and continued daily until a couple weeks post chemo.
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pch, Wildflower, makingway - thank you so much for your input and encouragement.
I've decided to stop cold capping. I really wanted it to work out for me, but I guess I'm one of the few unlucky ones. It's too hard at this point for me to hide the missing hair and I'm getting tired of the constant shedding and stress.
As for anyone else considering capping who has thick hair, make sure to get the needed temperature clarified. I received 2 conflicting temperatures to keep the caps at. One document stated that for thick hair to use -33C to -34C. The other said to use -32C. When I asked about the discrepancy I was told that if I went with -32C I "should be fine." My helper also kept it at -32C.
I'm not saying that's the reason it failed for me by any means, but I just wanted to put that info out there just in case. Best of luck to you all.
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Good luck with the rest of your treatment, SoCal. I hope you feel at peace with your decision and relief from the stress. Let us know you're doing!
pch0 -
SoCalGrl,
Joining with pch to wish you a smooth ride and less future stress as you continue treatment! Take care!
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FYI to all cold cap user's-There is no one temperature for the entire cap. You will find various temperatures in different areas on the cap. Use cap when the temperature range is between -28.0° to -32.0° Celsius
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Hi I'm new to this page I have been reading the posts from the beginning for about a week now. I am 6 weeks PFC I had 4 rounds of TC I kept my hair but it has thinned quite a bit but no bald spots, my question is to Makingway I noticed that you joined this page way back in 2009 so you are obviously a few years past treatment. Could you tell me how long after chemo did you shed for and if your hair thinned did it thicken back up to what it was like post chemo and how long did it take?
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I am also almost 5 years PFC. Photos on my blog. I did get my hair cut shorter about 6 months PFC and at that point it felt amazing and looked really good. By then all thinness at the scalp area had filled in. The bangs I had in the photo was a result of the hair growing around my face that had come out due to how the caps fit around the face and over the ears (so it gives you an idea of how long that hair had become in 6 months). I was one of those that shed for 4 months PFC which was unusually long. Everyone is different on the shedding PFC. You got this! Congrats on being done:)
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Thank you mdg I did go and check out your blog and your photos are amazing I wish I could just go to sleep and wake up in 6 months time when this is all over and move on. There is already new hair sprouting and the thinning areas are closing in. I can't wait to cut my hair it is long reaches my bra strap but now because it is thin it looks scraggly I need to cut it at least to my shoulders but don't think I can cut that much off in one go can I? Lucky my husband is a hairdresser he has been combing for me after hair washing day (which makes me sick to my stomach) I think I would lose my s&@t if I had to see what comes out. I have been reading all the posts from the beginning and I can't believe all the negative nurses there are, here in Australia cold capping is fairly new also and even though most of the nurses had not heard of it either they were very accomodating and very happy for me. Also another question have any of you ever heard of anyone getting through chemo with their hair only to lose it through shedding post chemo? That thought is what is making me nervous.
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Hi Aussie-girl. I finished chemo a little more than two years ago. I shed for about 4 months PFC. It's not unusual but it made me very nervous. It all worked out fine and my hair is completely back to normal. You'll be happy to know that in the two plus years I've been following this thread, not one person has reported losing their hair from post chemo shedding. Hang in there, you'll be fine.
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Aussie-girl75- Lori and I were sharing the caps and had planned to help each other change them during our treatments. I began helping her but decided during that time not to have chemo-long story. Shortly thereafter another woman needed help and I helped her also. I then started getting lots of requests from people needing help and made it my mission to help as many people as I could. I've helped dozens of women since 2009. That being said there is no predictable schedule for the amount, or length of time that shedding will occur. Generally speaking it is usually noticed 14-21 days after the first treatment. Most of the time the amount tapers off considerably and is not as significant as the first shed. The hair that is lost fills in @ 3 months.
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I'm almost 13 weeks PFC, and I no longer need to use Toppik. My hair is still a little thin, but you really can't tell that I ever had a bald spot anymore.
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Wpmoon Did you use toppik right when you finished chemo? How long did it take or hair to fill in the thinning/balding spots
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Alibeths--You should have been more upfront with me in your PM to me. I haven't been on the boards in months, so I wasn't aware of your business interests when you PM me looking for help/info on capping with elastogels. I thought you were someone looking for real help...who was in the same frightening spot I was in six months ago. I spent a lot of time and emotional energy putting together my response to you so that I was sure to cover all aspects of capping and getting chemo. I put together the kind of tip sheet I would have wanted to receive. Now I find out it was all to help your family start up a new business?! I feel misused. I think your use of this board and its members in this way was inappropriate and unthoughtful.
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Thank jc254 for calming my nerves it's been a stressful week getting ready for my middle sons 1st Holy Communion this Sunday. Was starting to get worried that I'd have no hair for the day 😂. As I'm in Australia we're heading into summer by then I'll be 5mths PFC will it be alright by then to swim in pools and the beach?
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Alibeth, I hesitated to say something earlier but I agree with MIMomma. It's inappropriate for you to recommend a business on this thread without disclosing that you have an interest in the business. Worse is the fact that you're promoting a business with owners so inexperienced that you have to come here to ask how long they should leave the caps on. This thread is here to offer support and advice to women using cold caps. Let's keep it that way.
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I'm not going to get into a argument!!!! I never meant to get anyone upset. My family saw what caps did for me the 2nd time around with this disease and want to start a business to widen cap usage and help empower other women. Again, didn't come here to upset anyone. I'm in the same boat as you.
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Alibeths,
I don't think anyone is upset that your family wanted to start a business for cold caps after seeing what a wonderful product they are. It's great to see more companies out there as that provides more services for women and increases the awareness of what cold caps can do!
What people are upset about is that you were deceptive and did not reveal your intentions when asking questions and/or recommending your family's business on this thread or in PM's. I doubt you intended to be deceptive (and I know in my heart you didn't intend to upset anyone), but it feels that way to those who did not know your intentions. They feel taken advantage of. Just take responsibility for what you did wrong, apologize for it, and I think you will see many here would forgive and forget! You are a fellow breast cancer sister and surely we have all learned that life is too short to stay angry over things!
Just be sure to disclose your financial interest any time you ask questions relating to your family's business or when you recommend the services of your family's business. Transparency. Simple as that!
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MIMomma1 and Makingway, if either of you has specific instructions on using ElastoGel caps I would love to see them. I am an individual who has bought the caps online and will have my first treatment Oct 7. I want to do a practice run with my helpers before I have a treatment to see if we can fit the caps properly. Thanks everyone again for all your information and help. You are all godsends to help the rest of us. I hope I can help other cap users in the future.
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A friend just told me ABC National news is about to do a story on cold caps...tune in if you are able!
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Jbandkb1 - I used Toppik throughout chemo to cover my thinning and bald spots as soon as my hair started falling out, which was about 25 days after the first chemo. My hair still continued to grow during chemo in length, and their were hairs in the growing in the thinning areas before chemo was even done. I'm now 3 months PFC, and my bald spot is about 98% filled in, and I have new hair growing all over. I'm planning on getting my first haircut since February soon, just to even out the new hair with the old, and get rid of the dead stuff. I'm still washing every 3 days, but used hot water yesterday to no ill effect! I've even straightened my hair a few times and it's been fine.
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MadisonMom, since you have so much time, you might want to try and practice with caps cooled with dry ice with your helpers. You mentioned that there might be some fit issues. It's not a bad idea to get comfortable with (I think) less flexible caps when they're at the temp you'll be facing. Perhaps pack 'em up and give it a whirl before you go. Fit is everything and if there's an issue with the crown (which we all face at one time or other), you'll have a better feel for how to get good contact and how to fit the elastic bands.
I wish you so well with this!
pch
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Hey ladies to all of those who are PFC and have stopped shedding I have a question. When you stopped shedding did you stop losing hair altogether or did you just find it went back to pre chemo hair loss and you just knew it was over? Also the last couple of days I have lost way less hair than usual when I combed my hair maybe only 6-8 hairs is this a sign that shedding is almost over? I'm hoping it is, I had a down day yesterday. It was my son's 1st Holy Communion and I felt ugly my hair is so thin I can't do anything with it and seeing everybody else with beautiful thick hair made me sad😥
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I'm 3 months PFC, and even on hair washing days, only about 10 hairs come out, which is even less than pre-capping, so I think that's a good sign that the really heavy shedding is done and your hair is leveling out. I'm not a fan of what my hair looks like right now, either, but at least we have hair!
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Thanks wpmoon just finished my 4 rounds of AC and my hair is so thin.I start 4 rounds of taxol next week and hoping maybe my hair will start to grow. Haven't used toppik yet a little nervous washing it out I'll lose more hair. Does the toppik come out easy enough?
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Hi All, and thanks to those who have already posted!
We would really like to put together a slide show showing all your faces to show the amazing diversity of our community, reaching around the world. Please share with us here https://community.breastcancer.org/forum/135/topic..., or PM us. We may also present this at our annual fundraiser in October.
Photo (best quality possible)
Where you live
Diagnosis
Your Age
Quote about how the community/BCO has helped you.
Thanks for being a part of our community!
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Hi MadisonMom--I will try to PM you a copy of an email that I recently sent someone else that basically outlines everything I know about getting through chemo and cold capping with elastogels. It's long but there is some good info in it. Hope it helps!
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Yes, the Toppik washes out well! just make sure you lightly scrub the areas where you spray it, and it should come out with the shampoo after you wash. It stayed in for the few days between washes, too. I never really had to touch it up.
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