Cold Caps Users Past and Present, to Save Hair
Comments
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WW - I thought I was out of the woods with regards to finger and toenail damage (last chemo 7/2) but sometime in late October or early November I suddenly lost a toenail. Since then I have lost 3 others, the last just last week. It's very weird. Fortunately there has been new nail growth under the ones that dropped off so I don't have an unprotected nail bed. But it's very weird.
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AmyQ - Weird is the word for chemo. It's all about weird things happening. Thanks for the heads up. I'll continue to care for my nails the best I can long after chemo. Glad you did not have an exposed nail bed. That sounds painful and difficult to care for. Some have described their nails as becoming thick and orange. I don't want that either. BTW, did you ice, use dark polish during tx, clear hard as nails and tea tree oil after?
I'm also wondering about everyone's experience with brows and lashes. I'm using Brian Joseph's conditioner. So far my right brow and eye lashes have thinned and my left looks fairly normal. I guess I'm always trying to foresee the future. I know a lot of people report losing them post chemo.
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Congrats on the no shed day, Warrior Woman! I'll bet no one can tell & the wig woman is going to lose her sale (sounds like she deserves it!). I am using Latisse, as I had been for a year or so previous to my diagnosis, and have not experienced any loss of brows or lashes (so far!). I'm really fair & I'm wondering if anyone has any experience with tinting their lashes & brows during or after treatment? I usually have it done every 5 weeks or so but have stopped because I'm afraid they'll fall out. For now, I'm sticking with waterproof mascara & a brow pencil.
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WW - I iced my nails throughout 5 rounds of TC and thought I was out of the woods. There was no discoloration or any other signs I'd lose them. One day while taking a bath I noticed the corner of one was just hanging there. It freaked me out a little but when I explored a little further I could see about 1/3 to 1/2 of new growth so then I took the nail off. The others have just sort of popped off while taking a bath, all at different times. Another oddity, the same nails on both feet.
Regarding eyelashes and eyebrows, again I thought I was one of the lucky ones until suddenly about 2 or 3 months PFC they shed completely. In fact I lost my eyelashes a second time in January. I attributed it to my 1/3/14 surgery and the tape to keep my eyes closed but I can't say for certain. Thankfully they too are regrowing. Good luck to you and everyone else. Chemo is the gift that keeps on giving!!! Or should I say taking?
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AmyQ - They taped your eyes closed???!!! Is that standard practice? Eeeeee! I didn't know this. Something else for me now to be freaked out about.
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Apparently this is protocol for general anesthesia. I didn't know until my last surgery 3 weeks ago. I don't know if that's the reason I lost my eyelashes for a second time but the day after surgery they were gone. I am making the connection as nothing else makes sense. Yes! All sorts of joy!!!
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WW- Can I find the Brian Joseph's conditioner at department stores? Somehow I missed that from my list. Am I too late to start usting it since I had first chemo yesterday and by the time I get it? Just wondering. Thank you.
Amy- Do you think putting ice on nails in between treatments might help?
Have you all had problems with your hair sticking to the Velcro starps on the cold caps? Mine kept sticking and when it was time to remove the cap my hair was being pulled hard. DH has no patience even thought he was doing his best, but I could feel the pulling and hair on the Velcro. ouch! I'm thinking of putting felt on the Velcro and after the cap is on the head my dh will just pull the felt off before sticking the Velcro. Will give it a try next week and let you know in case someone has the same problem as me.
I'm worried because even thought the thermometer showed the correct temperature for me -34 sometimes a little lower like -37, I did not find the caps to be unbearable, just normal cold. Might be my lots of think hair? I did feel it unbearable on my forehead even thought I had the moleskin. I ended up tucking in a small baby towel under it. I have an idea of buying some fake short hair fur from a craft store, cut it to the size and shape needed and put double sided tape on the back to stick on forehead and chin. I might look like a bearded lady. lol The fur I've seen is something like this but shorter hairs:
http://www.joann.com/2-x-30-inch-fur-trim-black/zp...
2-boys_mom- I'm a few days before you. I made a list of things needed from the suggestions given here. If you would like it, I'll be glad to send it to you. Send me a private message.
One last question- How long after the chemo treatment can I start using the caps in between treatments from my home freezer. Do I have to wait until I wash the hair? Oh! That brings another question. My instructions say: Do not wash hair two days before or two days after chemo day. That means, if I had chemo on Thursday then I can wash on Saturday or Sunday.
Thank you all for your support and sorry for all these questions, I just don't want to make any more mistakes from what I've already done.
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sweetmom, I have never felt the caps to be overly cold on my head, either. I keep waiting for that ice cream headache but have only felt a small amount of pain on my forehead. I have thick hair as well so maybe that's something to do with it. If it helps alleviate your worries, I'm halfway through treatment with only a small amount of shedding (only noticeable to me). I have chemo on Wed & always wash my hair Sat. I throw on a cap for 30 min or so every couple of days, maybe 3x during the week- I find that I can barely stand to look at them except when totally necessary
No nail issues so far- I just put on dark polish & a nail hardener throughout the week. I don't think there is an exact science to any of this- this thread is a testament to all the women who have had great success despite all sorts of mishaps, slight variations in routines, product use, etc. I'm sure you'll do great!0 -
Summer- thank you so much for your message. I feel more relieved. I'm glad to know that you had the same feeling towards the coldness and it's working. I'll try to relax and don't think too much about it, since stress can also make hair fall. I will be washing??? or patting my hair on Sunday. Do you wait a few days after chemo to use the cold caps or do it the next day? Thanks again and best wishes for you.
I'm getting ready to go get my Neulasta shot. I had Claritin yesterday at night and will take another pill now. These are the 24 hrs Claritin softgels. I hope those are the right ones.
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Warrior Woman, you're giving me hope. I'm 23 days past the first infusion (TC x4; second one was yesterday), and I've lost probably half my hair, mostly above the ears and the front sides. It's an almost hourly struggle not to pull out the clippers, buzz it off and send the caps back. My goal with using the caps was to be able to look in the mirror and not be reminded of cancer—the expense was worth it. But, now, every time I look in the mirror and see my half-gone (half-there?) hair, I'm reminded of cancer. As I was shivering yesterday during the infusion, my very sweet nurse asked (not at all unkindly, or with an ounce of judgement) whether it was worth it.
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Summer - It's scary that there is no exact science behind this. I've read through the threads in an effort to decode the real secrets behind successful capping. It will take someone far more brilliant than I am to piece this puzzle together.
Sweetmom - Brian Joseph's can be purchased from their website: BJ Lash and Brow Conditioner Here's the scoop. It comes with no instructions! The woman at the cancer supply shop where I purchase it swears that lashes and brows will thin but no one has lost theirs. One side of my face looks 100% normal and the other has thinned. I notice it but it is easily masked with make-up. I was told to start using it one week prior to treatment and continue for one month after. Apply it 2xs per day to base lashes and brows and the skin underneath. I hear a lot of people lost their facial hair weeks and even months after treatment so I just don't know. The downside is the cost - $40 per tube and that lasts about 2 weeks for me. I've gone through a lot of them.
Also, about the Velcro on the caps... one woman used the felt but most attach the Velcro by making a helmet out of the cap prior to putting it on and then adjusting the straps after it's on your head. This way the Velcro never touches your hair.
Also, 24 hour Claritin is what you want to use with the Neulasta shots. Do not use the Claritin D.
Caps between treatments - There are no rules on this and it is not something PCC addresses. I use them to cool my head after a workout. And btw, sometimes I wash my hair 2 days before / after tx and sometimes 3. I doubt it matters that much.
Mazie - At day 23 I was dying. It's depressing to have hair constantly falling out. My worst days were 18-30. As of day 31 it slowed waaaay down. I am shedding but it's nothing to be concerned about and it doesn't annoy me as it did before. I'll post photos at some point to give a demo of the progression. As long as I don't shed again like I did before I'll be OK. And yes, I would estimate I've lost 50% of my hair. To me it looks thin and ratty. However, when I fix myself up I look presentable enough and I'm sure you do too. Do you still have full coverage? I've noticed that a lot of women who probably never had cancer have thin ratty hair. There are times I've wondered if it would have just been easier to go bald and let it grow back normally. The problem is...I don't want to have that image in my memory of me being bald. Let's face it. Chemo sucks. Sitting for hours in that chair is tiring and boring. Capping passes the time. Do you have anything better to do?
It is my hope that after chemo, as new hair begins to grow in, I will be able to regain some sort of normalcy far sooner than if I went bald. For comparison, read the discussion on the Hair threads and the struggles the women have to regrow hair and the agony for those who experience the permanent hair loss. . And just for laughs - Today, getting out of my car I noticed a bunch of hairs stuck to the side of my car. I must have brushed against it. How's that for disgusting?
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It's tough to get good coverage around your hairline in the front and this is the place (and around the ears) that cappers tend to lose hair. Make sure the cap is pulled far enough forward on your head to cover your hairline and then use the velcro band to secure it tightly. You should not have gaps and you should not be able to stick your fingers under the cap in the front. I'm going to try and post a picture... It's me right before my third chemo treatment. Notice how my hair has thinned on the sides. It's obvious in the picture because my hair is tucked behind my ear but when it hung down, it wasn't as obvious. Sorry...I haven't figured out how to get the picture smaller.
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WW- thank you for your detailed answer. It gives me more reassurance.
Just got home from the Nuelasta shot. The nurse said it would hurt more than a penicillin shot, so I'm there waiting for that dreadful pain. He says I'm done. So far, no pain. Yeah! Now to try to prevent the unwanted bone pain. I already started regular Claritin since yesterday. Thanks to all of you for the advice.
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JC - The photo looks good and serves as further proof that you're not a PCC plant. LOL. It was taken at the point I am at right now. I don't have any sideburns left. How much more did you lose after this photo was taken?
Sweetmom - They told me to take the Claritin for several days after the shot. I stopped about 5 days out and woke up at night with the worst pain imaginable shooting down my back. I then continued to take it for another week and was fine after that.
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Here's a picture of that same side of my head today- 8 months later. The hair on the sides is growing in, but it's still pretty short. It reminds me how happy I am that I used the caps.
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Warrior, although I shed during chemo, the shedding was gradual and I never experienced the big shed like some women. In fact, I'm surprised when I look back at the pictures because I don't think I realized at the time how much I had lost on the sides. I was just so happy to have hair! I continued to shed for about 4 months after chemo but it wasn't from any particular area that I could tell and my hair never looked much worse than what you see in the picture. My hairdresser estimates that I lost about 20-30% of my hair but I started with pretty thick hair. I just bought a new car and had to clean out the old car before I traded it in. I was literally pulling hair balls off the floor- it was gross. Here is a picture of the back of my head before chemo #3...
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My eyebrows and lashes thinned but I did not loose them. I didn't use any products- I had some blurry vision as a chemo side effect and didn't want to get anything near my eyes- but I found they grew right back in after chemo was over.
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anyone use caps with thin hair? Everyone posting pics looks like they have long thick hair. Just wondering since mine is thin and chin length.
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I love all the photos!
I used felt on the Velcro to minimize the hair sticking to it going on as well as putting my hair in a loose pony tail. Once the cap was on the pony tail cane out and the brow band went on to the nape of my neck.
I recommend white felt so it can't be seen in the nap so the cap looks clean for the next user.
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2boys - I have very fine, thin hair. It is several inches past shoulder length. I shed, but no one could tell at all. Did just fine with the cold caps!
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JC - Look how great your hair looks now! That is precisely what I am hoping for. I know it will not be at its best for a while but my hope is that as it fills back in, it will get back in shape.
TMB - There are clearly different patterns of shedding. I really hope I'm following you with my hair and brows.
It seems some people shed a lot early and others shed more post chemo. I may be wrong. I am in trouble if I shed more post chemo. There is no rhyme or reason to this madness.
2-boys - From what I've read on here, women with thinner and shorter hair have had better results. Thicker hair makes it more difficult for the caps to cool the scalp.
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I lost a lot of hair at temples/side burns too. It was almost like slowly my hairline all around my face moved back slightly. I didn't notice all of it - just side burns/temple area until the hair started growing in. I had a whole set of bangs in the front when hair started growing back. I think the hair loss in those areas are normal. I know most of you have seen my photos and think I had success, but I did lose a lot of hair in these places. Also at the nape of my neck.
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anyone wear hats while using the caps?? Just want to check with others!
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Hats with the caps? No...I wouldn't suggest that. The cap needs to get the scalp to the right temperature and the hat might prevent that. I would not take that chance at all.
I am glad to hear everyone else's lashes and brows came back...mine did not come back fully at all, nor did the rest of my body hair. I am saving on razors!! But I am SO glad I used the caps...I bet I saved myself some permanent balding! God Bless Frank Fronda!!
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I wore light hats on really bad hair days. Once my roots were out of control the hats were more often!
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I think I was misunderstood! I meant did anyone wear baseball caps or cute hats? My sons play baseball and I usually wear a cap and wanted to know if that was ok!!!
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2 boys - I expect a hat is fine as long as it doesn't pull on your hair. I have an event to go to today and I'm wearing a hair band. I really worked to find ones that are light and don't pull. Also, I would avoid anything that makes your head sweaty. Scarfs are also OK if worn carefully. But I'd agree that it isn't a good plan to wear a hat on top of a cold cap! Baaahahhahaaaaa! Too funny. I'm sure some day someone will come along who tried that as a way to stay warm during capping. Hahahaha!
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just wanted to show some pics 7 months PFC, and 2 relaxers later. I tried to show some of the new growth at the temples
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2-boysmom I wore baseball hats a lot, I just made sure they were not tight.
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PCC does not recommend using any barrier. I think an elastogels users said they used a shower cap in between.
If you mean using a hat at other times, A distributor of caps say that someone lost hair wear a hat rubbed on her head so I was afraid to wear anything other than a loose ponytail.
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