Cold Caps Users Past and Present, to Save Hair
Comments
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Dancetrancer-Susie-You're pics are great!!! I haven't been around for a couple of weeks. Finally got to take a vacation
I've been trying to catch up with this thread. I don't wanna miss anything! I can't recall who it is that is washing their hair only once every week, or two, but please start washing it more frequently! You need the scalp clean.0 -
Marsha - I can co-sign on the headaches too. I don't believe it's the caps because they didn't start until after round two. I get booming ones that come and go for days, and like tmb, they are right at the base of my neck. My onc said it could be a reaction to the zofran. I think it could be that, tension, and the build up of all the other drugs being pumped into my system.
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hi
Day 14 of first chemo and im now noticing that everytime I run my hands through my hair I get several strands of hair. Is this normal or does it mean that cold capping is nit working? Im sooo afraid I will loose tge hair battle! How soon did hair start to thin for you other girls
:-S
xxx
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Hortense - did you take Claritin or Claritin D for the Neulasta shot? I took a 24hr Claritin D last night and get the shot today. Anybody know if I should switch to just plain Claritin? Does it make a difference?
I got through infusion #3 of 4 yesterday. Capping was a litte bumpy. And the last two caps were a little warm. I think my team and I are both tired. In good spirits - but just not focused the way we were during the first two rounds. I'm hoping for less shedding after this round. Can any of my T-C X4 sisters share how much they shed after round 3? If I get the same amount of loss in the last two rounds as I did in the first two - I'm off to wig-town. I've lost about 50% of my hair so far.
Fingers crossed,
Kay
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fab1 - you're doing well. several strands is about the usual for the time frame you're in i think. it seems like at lot because it's more than you usually shed. but most people report "the big shed" sometime around/after infusion #2.
you are certainly doing better than i did. i had a huge shed days 11-12 and another huge shed on days 22-23 or so.
so don't worry - seems like you're right on track.
kay
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Kay - I know; it's hard to focus as much the more you do the capping. Hang in there. I am sure hoping your shedding slows down. I know how it feels. My hair is super thin. Still enough to cover my head, but i have to say i hate the look. I scrunch it up in the back and put a clip on it to hide the thinness of the see through ponytail. The greys are gross, as is the thinness. But there's nothing I can do about it now. I am just hoping now that i am pfc that growth will start soon.
Makingway - can you give more info on why you think washing more than 1 x per week is better? I figured, based on how much hair came out per wash, that i didn't want to/couldn't bare the results of washing more than that; although being clean would be nice. Have you seen different results on those who wash more frequently?
curly0 -
Hi Kaydee- I am on day 7 post #3 and have only noticed a very slight increase in shedding yeserday. Nothing too major- don't worry
I think you are going to hold what you have.0 -
curly-When I first started helping with the caps 4 years ago shampooing once per week was what Frank-the inventor of the caps, recommended. The result was women with oily, matted down hair and a condition resembling cradle cap. A few of the women consulted with the hair tricologist which is recommended on the Penguin cold cap website. I saw her when I was going to use the caps myself, Frank had agreed to let me and another woman share the caps and split the cost, with the condition that I see the Tricologist and have my hair tested before chemo and after treatment. The cost was $350.00 each time. I couldn't afford it and Frank did not want to cover the cost regardless of its use for study. I'd never heard of a tricologist before so I searched the internet. There is very little information to be found on the subject. I'm not sure if it is a legitimate occupation... Anyway, the Tricologist had suggested to them to wash their hair more frequently, and in the case of the cradle cap to add a few drops of Tea tree oil to the shampoo. I have definately seen better results on those who wash their hair twice per week. If your hair isn't oily you can just rinse it with plain water or add a teaspoon or two of vinegar to neutralize any acids/alkalinity and follow with a rinse of plain water. You want to keep those pores clean to aid in elimination of oils and toxins. You don't want that sitting on your head! I believe you would get the best advise from a dermatologist.
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I am trying to share pix. I love seeing you women with beautiful heads of hair, but in the interest of balance, I also wanted to show my thin hair. For the life of me, I can't get photobucket to upload my pix. It doesn't seem like it should be that hard, but it just won't do it. Can anyone suggest another site I can try?
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Re: frequent hair washing. I just completed chemo 5 weeks ago and Geralyn told me I could wash every 2-3 days except for chemo week. I was washing almost every other day toward the end of treatment and it made me feel so much better. Maybe I was lucky but I saw no ill effects from it.
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For what it's worth- I am African American and only wash my hair once every 5-6 days normally. I have spread that to 7 with chemo but no ill effects. I need a little oil in my hair or it is unmanagemable and without heat to tame the frizzies I have adopted a look with a headband that is very natural. While I have gotten compliments, I know I will go back to straightening and flat ironing when this is over. I just think I will associate this particualr look with cancer. Although I am eternally grateful to have found a style that "works," for me it will be temporary. I want to go back to looking like the regular "me."
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I did not shed much until #2 and then a little less #3 and #4 . My problem was I she 2 months after finishing. I think as I look back on the pics that I lost the most hair then. I am now 6 mos PFC and have 1-3 inch growth in different spots I think according to when I shed. Thin, scraggly but no wig. It is just now getting a little fuller. I too clip the sides up now to make fullness in the back of my head. I couldnt do that the first month or so because the sides were too thin. I figure by Christmas it will be better. Good luck to all.
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tmb and schoolmom. thanks so much for the info on your sheddig skeds. it's encouraging to think that maybe I can at least make it to the last capping session with hair.
schoolmom, so you would have been about a month into radiation therapy when you had another bout of big shedding? was that a factor do you think?
curly, yep i've been the clipping the scraggly hairs in the back up too just because i can't stand to look at them. i'll be reaaallly glad when this is over.
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shipsgirl - do you know if flickr is supported by this site? maybe you could give that a try.
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kaydee - that works. I uploaded a pic to Flikr.
http://www.flickr.com/photos/98967371@N05/
I hope it works. Okay, so if it did, this is after chemo #7. I'm quite happy with it really. I mean, I wish I still had my thick hair, but it beats having none. I just wanted the newbies to know that we don't all still have lush locks like Dancetrancer and Susie. And that it's okay.
I have quite a few inch-long baby hairs coming in, sadly they mostly seem to be grey. But with only one infusion to go, I know that they will have lots of friends joining them soon,.
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tmb - thank you for posting re: what you do with your hair. I am of East Indian decent and don't have hair that can be combed through easily. It was thick and curly and even now as thin hair, it's curly and can't be easily combed through. I think my hair would be more comparable to yours than someone else's, so it helps to hear about your routine. If I were simply to wet it, I think it would cause more tangles than anything and the reason I don't wash more often is because with every wash, there is a generous shed. I can't bare it and don't see that the shedding will improve with more frequent washes.
But thanks to all for your input.
Shipsgirl - thank you for sharing. I know how hard it is. But again, we have something at least. And hopefully the re-growth will be faster than it would have been otherwise, although based on schoolmom and others, i am wondering if there is still more sad significant shedding ahead even pfc.
kaydee - thanks for chiming in.
curly0 -
shipsgirl - I see what you mean. Thank you for sharing. I think it is important for all to know that not everyone saves all of their hair, so you play a very important role in educating the newbies on that. Knowing that possibility exists ahead of time makes it less of a surprise if it happens to be you that it happens to.
I think you are right - you will be seeing lots of new growth MUCH quicker than had you not done the caps at all. That has definitely got to be worth something!
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Hi ladies,
I've been gone for a while. We've had to postpone my mom's 2nd chemo for 2 weeks. Her next chemo is this Thursday. We have everything ready for then - I'm just not because I'm scared. I also have a question. I've asked but I don't think I'm understanding the answers.
My mom lost probably 10% or more of her hair the first round. I kept all of it in a bag. I cry when I see it. But she still has hair! I'm happy about that. I don't think many would notice a difference - but I live with her so I do.
Now I'm confused whether you lose the most after the 1st round (in between 1 and 2) or after 2 (in between 2 & 3)?
I want to know what to expect this time....because I need to either be happy she has already gone through the biggest shed or prepare myself. We've had an extremely hard time going through with the rest of her chemo treatments. I'm not sure why - we're scared and nervous.
When will her biggest shed be? Also...did any of you lose your eyebrows? My mom has only half of hers left and I'm afraid she'll have none after this round.
Thanks ladies. You're the best
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shipsgirl - thank you so much for sharing. i too am seeing cosiderable thining - despite my t-c x 4 regimine which I read usually has a pretty good success rate. i think we do have to remind people about the various degrees of success so they are prepared. You had a LOT more chemo - including adriamycin and your hair hung in there. You are one tough cookie.
If I have as much hair as you do when I'm done I will feel content - and like curly and dancetrance said - hopefully the regrowth will be faster than without the caps.
chelsea -most of the people here have been reporting their biggest sheds between rounds 2 & 3 so prepare yourself. i had a big one during that time. but i also had a REALLY big one on days 11-12 after my first chemo, and it sounds like at least you mom avoided that one. So that's good. And hopefully the shedding will slow down during the subsequent rounds. As for the brows - can you find a "Look Good, Feel Better" program in your area? It helps a lot of women deal with things like thinning hair and brows with make up tutorials etc. I plan on going to one next month. Maybe it's something you and your mom could do together to lift her spirits.
Here's a link:
http://lookgoodfeelbetter.org/programs/programs-for-women
Kay
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Hi Kaydee,
Thanks for your reply. I'm terrified for the 2nd round. I think she's lost more like 20% - her biggest shed was day 13-now. It honestly stopped about 3 or 4 days ago.
Her hair above her ears is so thin - almost a bald spot. She lost a lot at the back of her neck and her bangs have thinned.
I'm so nervous now! I hope she can handle this shed - we've been crying over this last one and I just can't imagine losing more than what she already has.
I know we have lots of hair...but this whole thing has drained us emotionally.
Thank you for the link!0 -
Interesting to hear that so many have suffered a big shed between # 2 and #3 - for me it's been a fairly consistant shed after each chemo. Fortunately I am lucky to have a very thick head of hair but I definitely notice the loss. I finished my last chemo after #5 and am waiting for the shedding to quit altogether. Then excited to get back to styling and semi-permanent color until I can go back to more permanent color.
I spoke to my onc nurse today who knows of two ladies in my clinic who used cold caps throughout their treatments and both lost all their hair. I feel so badly for them; all that expense and hard work to not have CC work. Hearing this makes me very grateful to have retained as much hair as I have.
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https://www.change.org/petitions/upmc-health-plan-cover-cold-cap-device-to-save-hair-during-chemo
if you ladies would mind signing this for me, i am trying to get some awareness to the insurance companies!!!! this should be covered!
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YoungMom....just signed it! Thanks for doing this!!!
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thank you, could you share on your blogs? thanks!
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I just signed!
Kaydee....it was 3 weeks between finishing chemo and starting radiation. My shedding was continual and did not increase during rads. It continued until after I finished rads. I have read that others had shedding for 3-5 months after chemo which I guess happened to me. Fortunately my shedding was not significant from Nov - Jan and was uniform over my head. Dont get me wrong. 6 months PFC and I am just now getting some fullness in the back of my head and I definitely lost alot of the thickness. No real bald spots and I kept most of it on top! I was able to clip and comb to hide the thin parts and now I can wear it down and in a very tiny pony tail. Before I did not have anything but buzz at the nape and behind the ears so I could not pull it back. Good luck and remember we all are different but the words of reassurance are what help.
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Curly (and anyone else who might be interested) as I said my hair tangles with no heat, but I've been using a detangling spray conditioner everyday when I comb and that helps- Jane Carter Solution, revitalizing leave-in conditioner for detangling and protecting hair from heat styling and the sun. I use after washing and every morning when I comb. I know some of the advice is to use as little product as possible, but I had to weigh that against ripping out what hair I had left with combing.
I got it at Whole Foods and one bottle will likely get me through my 4 rounds.
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shipsgirl, thanks for sharing the picture. Just for clarification for newbies going forward, I believe you had 4 dose dense treatments of AC (every 2 weeks) followed by 4 dose dense treatments of taxol (every 2 weeks) - is that right? I think your experience will definitely help women looking into cold caps make their decision. I know when I first started I read through every post looking for someone who had my chemo regimen (12 weekly taxol) and never found anyone else. I am glad you have some hair left, and so sorry that the caps weren't more effective for you.
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Patin - yes, that was/is my treatment.
The main reason I wish I had more hair left is for others. I mean, I wanted to have a nice full head of hair so that my Onc and everyone would be impressed and help spread the word about cold caps. I wanted to be able to make a difference in the options women have.
For myself, I'm really not unhappy with the results. Of course more would be nice, but I knew that dose dense ACT was a biggee and so I wasn't attached to the outcome.
I wonder how many people that lost all their hair in the first 2 weeks would have been glad to keep as much as I have.
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Shipsgirl, I love your postive attitude. Too bad you're in Canada, I'd love to meet you for a drink. I'm so glad your finish line is in sight.
Schoolmom, I seem to be following your shedding pattern. I've lost more hair during the past 4 weeks (post chemo) than during chemo. I started with a lot of hair, and still have a lot, but if the shedding continues at this rate for a couple more months, I'm not so sure how my hair will look.
Chelsea, please try to remain positive and encouraging for your mom. We can't predict how or when she will shed. As you can see from recent posts, everyone is different, even on TC. There are no guarantees for any of us. All we can do is follow the protocol, make sure the caps are cold enough and fit our heads snugly, and cross our fingers. Using the caps adds a whole other level of anxiety to what is already a stressful time. But when they work, it's worth it.
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I have a follow up appointment with my oncologist tomorrow and she plans to start me on an aromatose inhibitor- Lexotrol (Femara) now. One of the listed side effects is hair loss! I don't think it's a common side effect, but given my current level of shedding, it's sure making me nervous. Does anyone have any experience with this?
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