Cold Caps Users Past and Present, to Save Hair
Comments
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Hi Loafer
My onco didn't give me a por,t she said my veins were good. So maybe I'll be ok with my nails thx. You didn't post Herceptin? Did you take it? also, How are you doing? Radiation and all?
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Hi ladies! First post here! Just wanted to share with you all that on Jan 11th, I had my 6th cycle of TCH. I used the caps during all six treatments and I still have a full head of hair- barely any thinning whatsoever. I took Silica the entire time, and used Revitalash on my lashes and brows. I barely lost my eyebrows, and completely kept my fingernails, toe nails and eyelashes. I, too, was heavily discourgaged from using the caps. My surgeon told me there was no way they would work; my onc told me the risk of scalp mets was "really high." (It isnt). In any event, I did a ton of research, and experimented with a lot of different things during treatment. I am here if anyone has any questions! Saving my hair during chemo was the best decision I have ever made.
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Amtmelissa615
Congrats on getting through this phase of your treatment I'm starting my first tch Feb 25
I'm organized for the cold caps, coolers. Will ask my onc about silica. She said no to latisse for my eyebrows and lashes during treatment , so I'll have to see about that.
I appreciate any info in preparation
Thx in advance & good luck0 -
Hi Shasha - I also did not get a port for 4x T&C. Veins held up well but I wouldn't recommend any more treatments than 4 without a port. My onc ( who strongly endorses cold caps and has run clinical trials on it) did not want me to take anything except a multi-vitamin. When I asked about silica, he said it didn't work.
I lost a lot of hair in this process and followed the protocol exactly. Had a professional helper and a hospital with supportive and knowledgable onc, nurses and a freezer on site. I really think your body and chemistry also has a lot to do with your results. My hair was already falling out in masses BEFORE chemo started. The stress of the cancer diagnosis was enough for me.
I still have brows and lashes, even though they have thinned, post treatment. Going today to have hair dresser attempt to cover my gray with a temporary rinse. It's been 5 weeks since PFC.
Also participating in a clinical trial for rads. 3 weeks versus the standard 6 1/2 weeks. So far - so good.
Good luck to you and all the new ladies starting with caps! It really helps your self esteem and confidence to keep your own hair!!0 -
Loafer
Although I really like my onc the facility does not have a freezer, so I'm not sure what to expect of the staff yet. I'm meeting with the nurse practitioner and will ask her if the staff will help me with this. My sister is coming, but if its too much for her I'll look into having an aid. I will figure it our thx for your good wishes
Good luck to all of us;)0 -
shasha - I did not do bands for my eyebrows - couldn't stand the thought of it...and took the risk. I lost about 50% of my eyebrows at about 4 weeks after my final chemo. They grew back almost immediately. Some never lose eyebrows, they just thin, others lose them completely. Same thing for eyelashes (mine only thinned) - all grow back really fast. Oh and I was on biotin after chemo was done so that may have helped with the regrowth, too.
I did TCH as well. If you get Herceptin last, you can start counting the 4 hours post chemo ice time when the Herceptin starts. I went home after the Herceptin and finished my 4 hours there, so your sister may need to come with you if you don't stay at the treatment center. My center was only 20 min away, so we packed everything up but one last cap, then changed the cap and immediately drove home with cap on head (lovely visual of me riding in the car with the cold cap on, lol). As soon as we got home, we did the next cap change.
Hope - wowza on having to change caps mid transit home! You are a trooper! Good point about the food. We also packed lunch for at the center and lots of snacks, as DH would not be able to run out and get food for us and there was no cafeteria at our center.
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Thanks Sasha10! My onc told me no Revitalash as well. When I pressed her on it, she said there was really no medical reason, just that she thought it would irritate my eyes greatly. I laughed - I was about to pump chemo into my body for four months, and deal with all the related side effects, but was supposed to be concerned about irritated eyelids?! That was the least of my problems...Haha. So I went ahead and used it and glad I did. I also ordered the eyebrow bands but never ended up using them.
Anyways, good luck to you! I am sure you will do great!0 -
Hi Amymelissa,
Thanks for posting here...it's great to hear your success! Funny about the revitalash....same with the caps, they warn about scalp mets but not about bigger risks of th actual chemo!
You said you experimented with a lot of things...can you share your routine and any tips with us?
Hope everyone is having a good weekend with little shedding!0 -
Sorry to have to ask this question again, as I know it's been covered a million times. I just want to check and make sure I'm taking the right amount of Biotin. How much are y'all taking? I think i'm taking the right amount but wanted to check.
! Thanks everyone!! Deb0 -
Hi everyone
Thx
What shampoo, rinse do you recommend for the the cold cap therapy?0 -
I'm taking 5000 mcg Biotin and using DermOrganic shampoo and conditioner. 9+ wks PFC now - today was first time I carefully used a curling iron on the ends of my hair after blowing dry on cool setting. Wonderful to feel pretty again!
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301742
Thx for the info0 -
My dr was against me using this cold cap treatment, he states that he is not comfortable that the chemo will have a 100% guarantee to reach every nook and cranny or any particle hidden in a "cold zone". He said he would not allow his wife or sister to use it eitther (if they had asked)
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That's too bad Gina-your doctor hasn't done his homework...Every so often someone posts this. Read through the last few pages, you'll find links to medical articles and studies proving otherwise.
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Gina - I have a bibliography of 70+ articles I'm happy to send to you for you to give to your physician. I presented the science and evidence of cold caps to my breast tumor board recently (at their request).
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PFC 9+ weeks.0 -
PFC 9+ weeks0 -
Awesome looking hair !!! Congrats on your success... No one would know you had recently been through chemo!
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Shasha - be sure you get a twin sized electric blanket. It's much better than using just a regular blanket or quilt. Its constant warmth is so helpful when you have cold caps on your head. I found mine at Bed Bath & Beyond.
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Congrats 301724 - your hair looks thick and fantastic!! Did you shed at all?
My hair doesn't look quite that good, but I am very pleased that I colored my gray yesterday. I feel like a new women and the hair color has added some fullness to the scalp. My bald patches are much less noticeable and I haven't felt this good since finishing my last treatment!!
I just bought nixion hair products for thinning hair and hope to restore thickness and return to my former luxurious hair real soon!!
Good luck to everyone just starting out!0 -
Gina925, I'm sorry your doctor did not do any research on cold caps. If you haven't started yet, maybe you could ask 301724 (who looks amazing by the way!) for a copy of her presentation to the tumor board to show to your doctor.
Please respect the decision all of the wonderful women on this thread who have used the caps with their doctor's informed consent. This thread is for help and support for ladies who are using cold caps.
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301724...you look amazing! I hope my hair fares as well. Have you trimmed it at all yet?
Amrdbit, I take 5,000 mcg Biotin. 500-750 mg silica and 30-45 mg zinc
Shasha, I started off using California Baby shampoo, conditioner and detangler...today I tried phMiracle shampoo/cond with the baby detangler. I want to see if it helps with dryness. There are a lot of choices...stick to something mild and organic...makingway has some suggestions on her blog, too...
Today was hair washing day! I combed out a BIG handful before the wash, and lost a number in the process, but now that it's dry, looks pretty normal. I hope for a slower shedding week ahead!0 -
Thanks, all. I must admit I'm pretty pleased! I didn't shed much but some - seems minimal now but will continue with the hair protocol for another two months. What you can't see is the big spot up front (about 3" X 3") where I got frostbite from the caps the first time. That skin eventually shed off (in bits and pieces over 12 weeks!), taking all the hair with it. The hair has started to grow back. Thank heavens for 'comb overs'! I had my husband trim 1/2" off the ends last week. Will probably schedule a real trim in another month.
I am so glad I used cold caps!
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301724 - your hair looks great and I had no idea you lost so much due to frostbite. Now that you mention it, I remember you going through that, but it's totally invisible to the outside world. Whenever I see or type your screen name, I think of Les Miserables and Jean Valjean's prisoner number...
Yesterday I spoke on the phone with a couple of young women in my area who are starting chemo soon and will be using cold caps. Our local Penguin rep gave them my number (as well as phone numbers for some other women here who have used cold caps) and suggested they call for advice/reinforcement. I referred them both to this website and hope they find us and this thread. They both sounded so young on the phone - and they are - 24 and 27 years old. Unbelievable!
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After chemo what color did you use? I had treatment on Dec. 3 so at the beginning of March I can color my hair. Any recommendations? I appreciate it!
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Pat - you wrote, "Whenever I see or type your screen name, I think of Les Miserables and Jean Valjean's prisoner number..."....too funny! Fortunately, I haven't been locked up:-)
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Hi all - so good to know that there are others currently doing Caps , and so many who have already done it and succeeded. I am on day 21 from first chemo ( TC X4) and my hair started shedding in gobs this weekend. I have long thick curly hair and it seems like it formed knots, almost dread-like, and then fell out. It's definitely thinner and I am quite worried. Is this normal? I was concerned that my caps weren't cold enough during round one - could that be the reason for shedding so much?
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Shasha & Hortence,
Actually, a lap-size electric blanket is the perfect fit for staying cozy warm while capping! This size is about shoulder-to-toe length and nice and wide too. The lap-size will not puddle around the dirty infusion floor and is easier to get in and out of going from big comfy chemo chair to straight-back chair for capping!
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ecarol - At your point in treatment - 21 days after your first infusion - most people do start to shed. It's scarey when it starts and you see a lot more hair than normal come out, but you probably are not losing all that much. The heaviest shedding period is usually between the 2nd and 3rd treatments, which you are just entering. I had some big knots that formed from shed hairs that came out together and scared me, too. I eventually began to realize that while hair was being shed from all over my head, not all of it was coming out. The majority was staying.
Our hair looks thinner during cold caps therapy because we are not allowed to wash it as often and as well as we usually would, so it sticks together somewhat even after a shampoo.
You said you were concerned about the temperature of the caps. Were they way off?
Susan - An electric lap blanket sounds lovely. I had no idea there were such things.
The twin size electric blanket worked perfectly for me. My wonderful helper would drape it over the chair while it warmed up, when it was warm I would sit on it and wrap myself up in it. I felt so cosy, or as much so as possible under the circumstances. I appreciated the sense of warmth all around me. It was like being in a cocoon.
I had no problems unwrapping and getting in and out of the chair for cap changes. I'd also put the blanket through the wash right after each treatment as it was machine washable, so it would be fresh and clean for the next time I needed it.
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Hi ecarol...my own experience was that I started shedding a lot after my 2nd treatment, but if I keep it in perspective, I have much more on my head and it's mostly noticable only to me. I'm on day 33 now andd it seems to be slowing down. I am trying not to touch it other than a gentle comb through in the morning. My hair is more fine and not very thick, and I can see some thinner spots above my ears but overall its still in place and I don't think noticable in any way to the casual observer. (although it is droopy - what I wouldn't give for a good warm washing and blow dry to pump it up!
What's helped me is reading this board and seeing that everyone seems to go through the major shed at some point and still seem to come out with a good result. Since your hair is thick and curly, you do want to watch out for any matting after washing, maybe a gentler detangler on the ends and careful combing so you don't get those tangles that can pull out other hairs that are trying to hang on. I think those with thicker hair will tend to shed more too, so keep the faith! In no time, we'll all be sharing our sucess pictures!0
