Cold Caps Users Past and Present, to Save Hair
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jalsgal - that is AWESOME! He should get some really good karma for that!
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okay, so someone go through this with me. I'm on day 8 right now. So around day 16, is that when I'll lose the most hair? Or will it be around day 16 of each cycle? And then it goes on for about 16 weeks after chemo finishes? Can someone break down the schedule, and is it similar for everyone?0 -
Also, Will it happen when I wash it, or just random clumps? And then it will slow down at some point?0 -
Jenn, everyone's shedding is different so can't really give you a schedule. Some have one or two big sheds while others shed minimally but continue to shed for months after chemo ends. Around day 16 is when you would start losing your hair if not using cold caps. That's why the general rule is that if you make it to day 21 with hair, the caps are working. You will experience the most hair loss when you wash, that's why you have to be gentle. Your hair should not be coming out in clumps. It's more like a gradual overall thinning.
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Jennjdance - I was told by my very experienced chemo team at NY Hospital, who had helped over 40 women cold cap, that shedding starts between day 18 and 23, which is what mine did. Hair does not come out in clumps. Strands just fall out from all over your head, one seemingly following or clinging to another. It's the oldest and weakest ones that let go. Their follicles will go into their normal rest phase and after a few months will start growing again. You will see tons of them coming in about a month or so after you have finished chemo.
The heaviest shedding usually happens between the first and second chemo infusion, then it will let up and settle into slower shed in most women. Remember, people who do not cap go bald in two to three weeks. You will not go bald. Some ladies have reported very little shedding. I think they were lucky. Most seem to have a shed pattern like mine, that after the first heavy shed would slow down to a steady rate, then increase a bit for a few days after each infusion, then settle down into a slow shed mode in between. Some continue to shed after chemo ends, like I did, other do not. The time they shed afterwards seems to vary. I was 16 weeks, many other seem to be less. Although I shed a long time and my hair got thinner in volume, I always had full coverage on my head.
Be sure to use cool to cold water to wash your hair, no rubbing or scrubbing, or pulling on your hair in any way. Treat your hair very gingerly as it is in a very delicate state right now. You will have one or two shampoos during your big shed where a lot will come out. Try not to panic.
I did get some big tangles or mats when I had my big shed, and struggled to get them out. I found that a wet hair brush was far more helpful to me than any of the three wide mouthed combs I had bought, as it can be used with surgical precision to get into tangles and work them out. I finally resorted to cutting through several of my mats in frustration. My chemo addled brain did not remember, at that time, that corn starch is fantastic at getting tangles out of dry hair because it makes hair super slippery and silky feeling. I had learned that tip from my dog handler when I used to show cocker spaniels which have long, tangle prone hair.
A year later, after my head had cleared, I remembered that trick in time to help a friend who's thick, wavy hair had become horribly matted into one large clump by five days in a hospital that failed to help her brush it. She thought she was going to have to have it all cut off but I was able to get it untangled with lots of cornstarch. Once others saw the mats were coming out so easily, two of them pitched in to help. We had her tangle free in no time, and cornstarch all over the kitchen! She said it didn't hurt at all to have people working on her giant mat and we were able to save all of her hair.
Good luck! Think positively and believe.
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Thank you so much!!!Another question about washing. Can I dunk my head under the faucet in the bath? Or is that pressure too strong? Should I use a bucket to dump over my head several times? I'm only a week post chemo. I've washed my hair twice so far in the last week and both times under the faucet. But I read somewhere on these boards that pressure is bad for your hair....and I guess can cause more tangles?
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barremom64 - Thank you so much for the information you gave me on the Paxman caps...
jiilmare - Your testimonial made my cry cause I'm going trough the exact same thing right now. I'm on day 20 and I honestly have no idea how I'm gonna get trough 4 months of this. Honestly if it weren't for this topic and all the amazing people here I think I would be curled up in a ball in the dark for the past 5 or so days.
Ok, now I have to be honest. The paxman caps do work, but the problem with it is that the caps have a very poor fit in the head, or at least my head. I've lost mininal to NO hair in about 85% of my head, but I lost ALL of my hair in the bottom of my neck (witch I really don't mind) and right in the top of my head. Thats right, I have a plum sized bald spot in the highest point of my head, very visible to anyone who is taller than me (I'm 1,80m, I think thats about 6 foot tall, not a short person but that doesn't mean that I can live with this ridiculous hair style that I have right now). I honestly have NO IDEA what to do. As I told in an earlier post, this is a recurrence and I really, REALLY don't want to shave my head again.
Living with a wig is the most delicious thing in the world. Showers are SO comfortable, your hair ALWAYS looks good and you have no hair worries for a good time. BUT, once the hair starts growing all of that goes out the window cause I just looked very (for a lack of a better word) ridiculous. And that's what I wanted to avoid. Even loosing a lot of hair, but with no huge bald spots, for me would be fine, cause I have a ton of natural human hair that I already bought from my last experience and I could easily use for hair extensions. I've done it before and it looks great.
But now I really don't know what to do. Put a hat and just take it off 4 months from now when I can put the extensions on? Just give up and shave my head (nooooo)? Any suggestions?
I'm going for my second chemo in about 2 hours and I'mm do the cap again mostly because I haven't had time to figure my next steps yet, but I'll keep you posted.
Sorry for the desperate post and for any typos. English is not my first language and I'm very nervous/upset.
I'd like to congratulate all cappers here. You are honestly the strongest people I've ever met. This is NOT an easy journey.
Lots of love from Brazil...
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marcela - if it were me...I would try wearing a wig over top the hair you have saved and continue the caps, especially if you are not paying anything extra for them. I know this goes against protocol, b/c it makes the head hotter and it could lead to more hair loss, but...for me...I'd rather take that risk of maybe losing more hair than definitely losing it all and having to regrow it all again.
But you have to decide what you can live with and what you are willing to put up with to try to save your hair, with no absolutely guarantees. I know what I would do for myself. But I can't answer that for you. Time for some soul searching! Hugs!
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Marcela, I'm not quite sure how the Paxman caps work but I'm wondering if you had a way to better fasten them to your head, then you might avoid bald patches. Maybe use Velcro or short bungee cords to get them to touch the parts of your head where you are getting the bald spot? I know one of us on the boards had real issues with the Paxman caps not working but if you scroll way back on this forum, there were some women who had good results with them. I'm guessing they just don't get cold enough
I'm also wondering if there's a way to get the Penguin caps for the remainder of your treatments. Just a thought.
How about clipping in an extension over the bald spot or using that brush on coloring that's been mentioned on this forum? Some women have used that, but I can't remember what it's called. Have to scroll back to find it.
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Jennjdance, I stay outside the shower and use the shower head on a very low flow setting. I mix the shampoo with cold water in a small squirt bottle and squirt it on my scalp, pat it around gently, then leave it on for about a minute or two. Then I wash it out with the water from the shower head. You could also use a large measuring cup. You don't want a lot of pressure so I wouldn't use a bucket or anything too large. When done, pat your hair with a large tee-shirt, which is gentler than a towel and use the wetbrush or wide tooth comb. I spray on Kenra leave-in conditioner to help with the tangles. Then dry naturally or use the cold setting on your blow dryer
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Marcela- I had hair loss in the exact same places and a large bald spot at crown of head too. After a lot of research most women using Paxman complain of significant hair loss in that exact same spot, it must be a design flaw. . I bought these velco straps to make the caps tighter to my head.http://www.amazon.com/VELCRO-Brand-Purpose-Straps-Strap/dp/B000TGX0HK/ref=sr_1_6?ie=UTF8&qid=1416326900&sr=8-6&keywords=velcro+straps
I used the size cap that best fit my head and then a SMALLER outer cap to keep things really tight. For example inner cap "L" cap outer cap "M". This was a recommendation from Richard Paxman himself. You can email him directly though the website, I found him very responsive.
You will now have to protect any bald spots you have from frostbite- use a piece of cheesecloth.
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Marcela - careful hair arrangement, a scarf tied like a turban headband so it's extra wide, or even purchase a topper. A topper is a wiglet - a wig that only covers a bald spot like you're describing. Extensions maybe too strenuous on your hair right now so I would skip them for now. Unless you are able to find the extensions that are like a halo and just lay on the head. I'll find a link for them although not sure about availability in Brazil.
Also, there are hair fibers that sprinkle from a canister - toppiks is one brand, illuzion is another. It will help conceal thinness and bald spots. You can google. I'm sure they are readily available near you.
Barremom has the most experience with the Paxman. Get the extra velcro straps to make it tighter on your head. Good luck
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I too started shedding around day 18 even though I thought I was out of the woods bcuz my doc said it would happen day 12-14. I guess it IS different if you use the cold caps. Seems like the only shedding (and there's quite a bit) is around my ears. I have long hair so no one can tell. We are off for my 2nd treatment today and will try to get the cap and headband tighter around my ears except I'm afraid it's too late for that area now;( And it scares me to hear that the biggest shedding might be after the 2nd treatment....yikes! Other than that i'd say the caps have been successful so far!
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I'm sorry. I should have been more specific. Shedding usually begins after the second week following your first treatment, so after day 14. It sheds slowly for the first few days, then more heavily. The heaviest shedding usually happens for a week to two weeks between the second and third treatments, so around days 21 - 35, then it slows down.
If you have your hair after your second treatment, you can be sure you are going to keep it. Those that did not use cold caps are completely bald by then. Their hair came out by the handfuls leaving bald spots, not by strands shedding uniformly from all over their heads.
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Hortense-thanks for the clarification;) Today was 21 days and my 2nd treatment. I'm on TC every 3 weeks. I still have a head full of hair, just shedding around my ears. We were able to get the headbNds to the correct temp so I'm feeling confident;)
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Jalsgal, I'm on the same chemo as you. I have my second treatment on Monday. So far, so good with the caps
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We got the ice the day before. Keep it in its compact packaging (for us, it was in bags that were sort of grocery bag size, but sealed at the top) and it will keep itself cold. In fact, after infusion we would dump it in the ivy outside and it would take a couple of days to fully "melt".
Susan0 -
marcela, One of the features of Penguin caps is the accompanying straps for the outside. No two heads are the same shape/size, and the straps are really important in customizing the cap to fit as completely as possible. My understanding is that the Paxman doesn't have the equivalent, but perhaps you can rig something up? I don't know if the Paxman has a hard-shell exterior, or something softer. The straps themselves don't freeze, but are stretchy (yet strong) and have velcro.
Also, cold stimulates hair growth, so if you can either rent a Penguin cap or even purchase an Elasto-Gel cap (which I don't recommend for infusions but which can sometimes help between infusions) to wear between infusions at regular freezer temp for an hour a day, that will stimulate hair growth in the bald spot that you have. But otherwise, a cute hat or cap til extensions and then your natural hair will be back. But don't give up!
Susan0 -
How does wearing caps between treatments stimulate hair growth? I never understood the mechanism behind this theory. Just wondering...is it really true? There was no way I was going to subject myself to more cold between treatments, lol.
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Hello Ladies! It seems like everyone on here has monthly chemo, but mine are smaller treatments once a week for 16 weeks. My first chemo is next Wed. so I'm wondering when my hair would have fallen out without the caps or will start shedding with the caps. I'm very nervous to start (not chemo- did that before in 2006) but the cold caps.
Also, I'm confused about what the headbands are for. I know the caps will come with the straps but not sure if I need the headbands also.
Thank you all for your support and encouragement! Your experiences you've shared have been invaluable!
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PinkFlipflops - The headbands are often used to cover parts of the head that might not be covered by the caps. My head is large and I needed to have them placed below the caps in order to cover all of my hair. They were fitted right up against the caps, but below it and ensured that I did not lose hair above my ears or on the back of my head just above my neck.
As far as when you hair might or would have come out, maybe that would depend on what exactly you are getting. I do know that there have been ladies on here who have used them weekly on whatever they were getting and they saved their hair.
Dancetrance - I couldn't bear to use them in between either, so didn't.
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Hortense- Thank you so much. Just want as much info as I can get!
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I am done! Treatment number 12 complete and my last cap yanked off. Blanket-gate is still a hot topic at the hospital. My oncologist mentioned that she heard about it and it might be some policy written somewhere. I told her that I don't care if it was written in blood or carved in stone. I'm using my blanket. I got ones of my favorites nurses and he apologized for how I was treated. He said we are for you. That was the first time during all of this that anyone at the hospital recognized that their job was to be there for the patient. Happy to be done. Here are some pics. Ignore the bad lighting and no makeup.
The top was me at at chemo today clutching my blue electric blanket. The cheesecloth is hanging beneath like a veil blocking my hair from getting caught. I took the others in the bathroom before my shower with bad lighting and obviously my selfie game is lacking. Just wanted to give the new people some inspiration. If I could save all of this hair after 12 treatments, then you can make it, too.
So thankful for this board and all the ladies I've met and learned from. You are all an inspiration and I grateful I found you all and cold caps. This journey would have been so much harder had I ended without hair. I love you all! Xoxo
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YAY DANIELLA! So happy you are done. You look great! You have such beautiful hair! I am glad the blanket-gate is OVER! What a nightmare...as if chemo wasn't bad enough on it's own!0 -
Congratulations, Daniella! You look great!
Jeni in CA
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Daniella, congratulations! It takes some real determination to use those caps twelve times and it certainly paid off for you- your hair looks great. It really stinks that your treatment center made it that much more difficult. Time to put it behind you, ship those caps back and get on with your life.
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Wow, Daniella, thanks for posting photos! You look great! I got the cheese cloth and will be ready for Round 2 on Monday
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Daniella - so happy for you! Your hair looks absolutely amazing. Another cold caps success story!
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Yay Daniella! You and your hair look awesome!
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Daniella, you look great! Congrats on finishing chemo with beautiful long hair! I'm so happy for you. I'm glad to hear someone at the hospital apologized and treated you with respect. You deserved it. After 2 week PFC, I mostly recovered from SE. Still have some rash (come & go) and neuropathy. My hair is still shedding a little every day. I wonder when it'll stop..... Next step for me is radiation. Simulation is scheduled for next Tuesday.
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