Cold Caps Users Past and Present, to Save Hair
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kpmac- good luck weds, I'll be thinking of you!
I use the headbands and I'm glad I do. My head is bigger anyhow, but I never felt like the cap covered everything and the bands have helped. I also bought an extra set of Velcro straps at walmart to keep the caps down on my scalp. I just start wrenching those suckers down all over my head. I think I wear 4 straps and the headband. I look like a freak and my infusion nurses just laugh when they see me.
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momtioirish, I so wish you had found us sooner! The caps work really well, especially high success rates with T/C. I also left my first MO because she was not supportive of the caps...many MOs need education on the subject. It makes me so angry that all patients aren't at least given the option...Grrrr. My hair did get thinner but really only noticeable to me. If you page through this board you'll see lots of our success pictures. I agree that you need an MO you feel good about - it's a long relationship. Hugs to you!
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I used the gel straps and didn't lose hair around the edges. I have a big head and needed the extra coverage.
MomtoIrishQuads - Many of us here had four rounds of T/C, three weeks apart. It's a pretty common treatment and cold caps work well with it. Your MO is mistaken. Just look back through this thread at our pictures to see proof. In fact, my avatar was taken about 30 days after I had my last T/C treatment. As you can see, I am far from bald. Your MO needs to update her knowledge. Have her look at the videos on the Rapunzel Project website. Several are TV news stories about the success of cold caping.
If you have not started chemo, you could switch doctors, and hospitals too if necessary, and get cold caps. I did exactly that. I put off my chemo for about a week as I made new arrangements.
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Just wanted to update all the Cold Cap fans..... I still have all my hair!! I couldn't be more happy about this!!!!!I will go for my third chemo in a week. I have more shedding than usual.... but still a full head of hair.
I have adjusted the way I pack and carry the caps in the coolers. I think 8 caps is unnecessary and so is the 80 lbs of dry ice. Last time I went, half the ice melted before I even got to chemo so I was left with probably 40 lbs. And it worked. It's just so expensive to be buying more than necessary.
Oh, and I also started getting the dry ice FOR FREE!!!! I suggest YOU ALL do this. I e-mailed a local distributor and explained why I needed the buy the ice in bulk and asked if they could offer me a discount. They responded that it would be free for my remaining treatments. There really are kind & helpful people out there.
If anyone has any questions you can ask me. I pretty much have the hang of the caps by now. They are a huge hassle, but so worth it.
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So nice to see more ladies hearing about the caps and using them! Love the success stories. Hang in there girls...you will have hair!0 -
I just finished my chemo about 2 weeks ago. If you look at my previous posts you will be able to see some timeline. I was on TAC x 6.
I think I've lost most of my hair just after the second cycle. By this time I was still following the protocol and was barely washing my hair still hoping I could save what was left. But before my 3rd cycle, I started seeing what might look like hairs on my scalp on the bald areas. A week before my 4th cycle these dots started growing and has become visible specially around my front hairline. This is the time that I started washing my hair daily thinking that rather than saving what was left, I turned my focus on getting these new hairs to come back and grow faster if it is even possible. I started washing my hair daily right after my 4th cycle and none of the new hairs had ever fallen out even after the 5th and assume also the 6th since my hair is still growing every week when I compare weekly pictures. I have about 1 cm of hair right now and although there are still some areas that look patchy as the hairs on it are not as long. During cycles 4-6, I had used a black silk cap I bought from CVS to prevent frostbite as I pretty much lost most of my old hair around this time.
I hope this helps.
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I am 1 week past my last TC treatment. My hair is shedding like crazy!!!!! Have others experienced this? I still have coverage but it is really thin in my opinion. Only one bald patch above my ear that I can see but I feel like I've lost 50% of my hair. It's probably not that much but I can't keep my hands out of my head!! I realize that I'm so fortunate to have any hair at this point but I'm feeling like I'm going to lose it all this round.
Has anyone lost all their hair after making it this far?0 -
Missyjean- I think I lost more PFC than during treatment. Never required a wig and many could not tell I had chemo. My hair thinned quite a bit, but I still had hair. I was the only person at my facility to use caps and had hair. I felt the same way! Just hang in there. I took Biotin and liquid silicia that many other cappers had used and suggested after my last treatment.
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I am so happy to see women who I knew when you started the caps now on the PFC side advising newbies!
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I have been taking biotin and silica in capsule form throughout my whole treatment. I just started taking biosil in capsules this week. I also bought some Nioxin but I'm thinking it might be too early to start using that. I've read on here that people were starting to see new growth before chemo ended and I can't see any yet. I just touch my hair and several strands come out. I'm one of those that hasn't told anyone about my cancer except close friends and family and keeping my hair has helped me keep my secret.
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Missyjean- mine did the same thing and I was a complete ball of stress! I also did not see any new growth, but knew it was there because it was grey!!! It will grow! I used the Nioxin about a month after my last treatment. I was too scared to do anything! I just had my first haircut, well trim, and it seems so much better.
Warrior-Woman- I could not agree more! Thanks for your help!
Question-any suggestions on hair color types to use??? I will be 12 weeks and need to get rid of the grey! Just a little scared and looking for advice! Thanks!!!
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Hello all,
It's been a while since I posted here. I am a Cold Cap success story, having kept most of my hair during TCX4 April-June 2013. For any of you in the middle of the process, it DOES work and you will get through it. Just today I had my 6 month checkup (all clear!!), and even one year post-chemo, the technician said "you didn't do chemo?" and I had to explain that I did, but I kept my hair.
Anyhow, I'm back to my normal hair products now, but have 5 Naturtint 4N hair dye boxes and 1 Clariol Beautiful Collection Rich Dark Brown hair dye. I used Clairol after chemo, roughly 4 weeks after my final treatment. I used Naturtint once the shedding slowed, which was around 8 weeks after my final treatment. I continued to use Naturtint for several months.
These extra hair colors I am giving away and happy to ship free of charge. They are all sealed products, unused. If you have dark brown hair and wish to have these products please private message me.
Sending all of you my very best wishes for good health!!
Susie
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missyjean - I lost a lot of hair for about 8 weeks PFC. Then one day it just - stops. I am 8 months PFC and am back to my normal routine getting my hair colored, styling it, etc. A lot is growing in but I look perfectly normal. Just be sure to treat your hair super gently until it stops shedding. And don't worry. It will stop.
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I lost a lot of hair PFC too. I was shedding for a few months and I was scared to death it was all going to fall out. I still had hair though....have faith!0 -
Thank you everyone for the encouragement, you ladies are awesome! I do have lots of grey roots so my hair is growing I guess I was just expecting to see new hair in my really thin areas. Mfm48- did you lose hair during treatment too? I've had steady shedding since TC #2, it just seems to be accelerating. I just need to settle down, I have my hair, it looks so ugly but I have it.
Thanks again my fellow cappers!0 -
pcher5 I am sorry to hear of the extent of your hair loss. If I recall correctly, TAC is especially tough on the hair:( However, it sounds like the caps are at least helping you save some hair and get it growing back faster. I hope that you found the caps worth it, but even if you didn't - thank you for sharing your experience. I think we have our own little "case study" group here that is growing and showing what treatment regimens the caps work well with and which ones they don't. Surely this helps those who follow to know what type of expectations to have regarding success rates with cold caps per chemo regimen.
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I may be ready to take the plunge. Susie Q and others - Did you use the Naturtint according to the directions on the box or modify it in anyway? Did you use color developer? Heat?
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I used it according to the directions. I was slightly terrified but had no issues at all. I had started with Clairol Beautiful then graduated to Naturtint.
Finally covering the grays was a huge relief. You can even test a small section underneath before doing your whole head. Good luck!!
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I suggest using professional products as they are not like the "cheap" ones. I don't know the chemical make-ups, but hair stylists tend to cringe whenever you tell them you use box dye. If you don't want to spend a lot of money (like me), try a beauty school. I have been going to Aveda or the Redken schools for the past 15 years and never had a bad experience. And it's about half the price of a regular salon AND they are supervised and graded by instructors so they really put a lot of work into your hair. If you have an Aveda school near you, try calling them to ask about their products. They use a lot of "healthier" stuff that is less harsh on your hair. Just some info
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Thanks Sunshine. The cost is not the concern. It's more making the right move with my hair. My stylist uses Redkin but I thought the Naturtint may be gentler. I'll get her opinion and proceed. I'm 3.5 months PFC so I should be OK.
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I started using Naturtint 9 weeks PFC and had no problems. I am still using it every 3-4 weeks. The funny thing is how many compliments I am getting on the color! Not sure when I will go back to hairdresser.
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My hair dresser told me her products are far less harsh than boxed products. I have to say it must be true because my hair has not looked this well and healthy in years. Before chemo, when I was doing it regularly myself, it was dry and damaged. That is not the case any more. I suggest at least going in to talk to a good hair salon about coloring.
Good luck.
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I colored my hair by myself one time in my life. It was a huge mistake that will never happen again! Several years ago, when my hair looked dry, a friend advised me to reduce washing my hair to twice a week as we do for the capping. As a result, my hair looked far healthier and shinier. I assume as it grows in it will return to it's good condition. Right now I have some shoulder length hair and a bunch of curls all around my head. I look rather funky but this is the type of problem I am happy to contend with.
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I only washed my hair once per week (sometimes twice) even before using the caps. So I didn't need to make any adjustments there. But every time I go to the salon they tell me how healthy my hair is. Plus I pay good money for products that make it nice. Washing is not good for your hair.
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@dancetrance. I am actually glad I used it and did not stop using it despite of the outcome. At least I don't have to wait 8-12 weeks just for my hair to even start growing back.
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Exactly pcher5 - that would be my feeling, too!
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I also used Naturtint. I still use it. It has far less chemicals than most boxed color kits. I have to order it online or get it at the health food store. I color once a month and my hair is far healthier than before when I was using regular boxed color.
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missyjean - yes, i lost hair during the chemo treatments. A decent amount, too. Since you can't do much to your hair while going through treatment, it just looked bad no matter what so I didn't really know how much I lost. And I guess I thought it would all just stop after the chemo was done. I was so bummed when it seemed to accelerate. Anyway, here I am 8 months later, and I forget all about it. My hair looks great, and normal. Its thinner, but I don't' really notice. For those of you coloring, I decided to try color 4 months PFC because my sister was getting married. My stylist was so gentle, I was so careful with everything - and it was all fine. My hair looked great. Little by little I gained confidence, and now I blow dry, color and style like I never stopped. Just a blip in the road : )
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I found that the hair that regrew came in wavy at first. My hair ordinarily is straight. The "chemo" wave or curl has slowly grown out as the rest of the hair strand grew in straight. The wave is now rests on my shoulder. I have to blow-dry it carefully over a round brush to get it to lie smooth and straight. It will disappear as it gets trimmed off, though sometimes it's fun to have a curl at the end.
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Hope and Hortense,
Yup - already did chemo last week.
I've decided to fire my MO.... I was so impressed that she came from MD Anderson - but I think that she might just have been a resident there. Big deal. Bedside manner, being informed, educating patients, and not talking out of their ass is more important. (sorry - I'm a bit angry here).
What I find funny about the cap thing? She offered me an opinion about the caps - but not about whether or not she recommended chemo. Her PA said that they don't recommend chemo for an oncatype of 21 - and then when MO got back from her conference she said that wasn't a true statement and that I needed to decide for myself. Oh - and the caps don't work. Great. (sarcasm there...)
I was very ill for the past week so I've decided to stop the chemo. I guess my parting gift from leaving the party early is no hair.... got a short hair cut today. Hopefully it will grow back faster since I'm not going through with 2-4 of TC. Anyone had any experience with that? (any other "drop outs" like me?) Guess I should start a thread to see if there are any other drop outs out there.
Mom to Irish Quads / Deb
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