Cold Caps Users Past and Present, to Save Hair
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jiilmare - It sound alike you are having a heavy shed at exactly the same time I did. It should let up soon. I had hairs sliding out all day long, one following another and it is disconcerting. I would find hairs wound around the railings of my stairs, all over my furniture, in my car, on my clothing and in my food. Once I had a completely strange man pick hairs off of me in the market. That was not a good thing, even though he meant well.
Treat your hair very gingerly. No pulling on it, no brushing, no direct streams of water unless very soft and gentle. Pat on diluted shampoo and pat it through your hair until it suds up, then rinse out very carefully. I used the kitchen sprayer on very cool a few times turned down to very low and soft. I also have a hand held shower spray which I would make very soft, even so I tried to break its stream with my fingers to avoid hitting my scalp with too hard a stream. This is not the time to worry about getting hair super clean.
If your hair is long, when you go to bed try lifting it up and spreading it out above your head on your pillow. I learned to sleep that way and think it helped because I wasn't lying on my hair. I used a satin pillow case and even used a satin lined shower cap sometimes.
My hair eventually thinned out in overall volume, but I always had hair covering my head. I hope you will also.
(((hugs)))
Leslie - I sucked on ice chips during taxotere. It is supposed to help ward off mouth sores. I do not think the change in taste is avoidable. It lasts more than two weeks, or did for me, and just when I could begin to taste things a bit again, I had another treatment and was back to yucky taste once more. I would go to my favorite pizza place and order a pepperoni slice just to see if I could discern anything at all and usually could only detect the most distant bite of the spicy pepperoni, but that was enough to let me know that I was eating it. Otherwise, the usually scrumptious pizza was utterly tasteless and felt a bit like eating card board. Taste will come back after chemo.
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Leslie - I keep ice chips in my mouth as tolerated during Taxotere (and 15 min before and after). The first round I wasn't very dedicated and got a few mouth sores - ouch! The second round I was much more motivated about the ice chips and never had any mouth sores after that. I also did not have any taste changes. I do wonder about the change in taste - I never had issues with that (although I did lose my appetite due to nausea/severe reflux). Your olfactory taste sensation nerves are of course in your mouth. So why wouldn't sucking on ice keep the chemo from going there (like the caps do for your scalp), too? And thus preserve your sense of taste? It obviously keeps it from causing mouth sores by the same means.
But, I know Hortense and many other sucked on ice chips yet still had taste changes, so...I don't know. I always thought I avoided it b/c of the ice chips. I may have just been lucky genetically that this was one chemo symptoms I did not have to deal with.
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First of all, I'd like to thank those of you who have been through the cold cap procedure and check back to help us newbies! I really appreciate it!
I think the taste change was almost the worst side effect (even tho I had nausea, heartburn, Big D, etc). The metallic taste didn't go away until last week, when I could actually taste pizza again. Iced tea and all beverages (especially water) tasted horrible and made me feel even more nauseated. I did get the magic mouthwash (some lydocaine, benydryl malox concoction) that helped but it tasted pretty nasty, too,
I just noticed my first heaviest shedding last night (Day 20). It was mostly from the sides around my ears (sound familiar?) I haven't noticed a lot of other hair shedding. When does the body hair tend to start shedding? I still have to use a razor. Maybe I'm just slower and Round 2 (in an hour!) will do me in.
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Hi All, I haven't been on the boards for a few weeks.
First off, congrats Daniella!!! No more capping!! Your hair looks great!!!
Next to those that have finished capping, did your shedding REALLY pick up after you stopped chemo???
After the first 2 chemo treatments, I shed a bunch and then it really slowed down to where I basically lost no hair especially when I was swtiched to Taxol from TC. Now that I have finished chemo (10/30) my shedding has greatly increased where I am losing 100's of hair daily....not just after my weekly hair wash. I would say I lost an additional 10% of my hair since stopping chemo....prob around 20-25% overall. Still no one would know I did chemo if looking at me...thank you PCC!!
Anyway, just wondering if this is out of the ordinary? And if not, when did it stop?
Seriously I lost 1/2 of my eyebrows and and almost all my eyelashes at the end of chemo...not during it. Thankfully those are growing back quickly... You think you're all find when chemo is done and then then wham your hair starts falling out....and growing at the same time.
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Hi all, I haven't been on these boards in a while. Hope all new capers are doing well. They really do work. Question for you veterans, I just switched from tamoxofin to arimidex on Sept 1 st and have a good amount of hair loss and shedding. The gap of my part is widening and there is a bald spot on the top back part of my head. This is so discouraging after savings it with cold caps. Has this happened to anyone else? Desperately seeking answers. Thank
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hi Jennliza,
Good to see you :-)
I don't have any answers, but am in exact same boat if it makes you feel any better...almost 9 wks after chemo finished and still shedding (I also lost almost no hair during chemo).
My sense is this is normal - if chemo is going to kill your older hair off and it doesn't fall immediately, it will still fall. Quite a few ladies here had a similar pattern and assure me it DOES stop at some point...maybe up to 16 wks.
My eyelashes all fell out after final chemo...I was starting to think they might never grow back but yesterday I noticed teeny tiny little baby ones starting to come in. Eyebrows grew pretty fast and look normal again.
So...I guess we hang in there!
Rain
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leveled, I'm sorry to hear arimidex is causing so much hair loss. I am not taking it - started on tamoxifen but my ER+ percentage was only 26% and my MO thinks herceptin did all that was needed for me, so I stopped taking it. I know of one woman on arimidex who uses minoxidil with good results. I forget the brand name, but she gets the generic version which is cheaper. I think there is a thread on BCO for arimidex users - maybe go there for information as I'm sure you are not alone in this!
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Hi ladies. I haven't been on this board in a while. I finished my treatments about three weeks ago. My shedding is starting to become less and less. I don't have any SE's now but had the worst fatigue these past weeks. I wanted to let you know that there is another discussion board for those who want to share their experiences post-treatment. It's called Life After Cold Caps: a place for ex-cold-cappers to share.
Good luck to those starting and continuing with the cold capping. Peace and love.
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Thanks all
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I won't start Arimidex until after chemo, but I've heard the Bio-Sil drops can help with hair loss during cold capping and also if you end up on an aromatase inhibitor. I bought some at Whole Foods.
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Hi Ladies!
I haven't been on in a while and it was nice reading everyone's updates. There isnt a heavy Elastogel presence so I thought I would give an update since some were curious! I'm using Elastogel's and they seem to be working great so far! (always scared to jinx myself, lol) I've done 3 rounds of TCH+p and have 3 left.
I did a ton of research before I bought the elastogels- on this forum, PCC site, youtube and amazon. Mostly because I was taking a chance going the elastogel route without the guidance from the PCC company. And mostly because of the willingness to help and share of the women on this forum, I felt confident enough to do it myself. I bought 6 new caps online. I do 2 coolers, with 40-50 lbs in pellets and slabs each. My boyfriend found a company that gives me a discount and the morning of my treatments the gentleman packs the cooler for me with the slabs around the sides and bottom and smaller bags inside the caps with the pellets. I start capping during my pre-meds because then I have perjeta and herceptin to get through before the Taxotere starts. And I try for 4 hours after, but I usually end up around 3-3.5 hours. The Elastogel's came with a strap and buckle which I don't use. On the forum I found the problem areas were the very top of the head, and down around the nape of the neck and the top of the ears. So I got 2 stretchy velcro straps, one I put around my head from forehead to the nape to make sure it's snug around the nape, and then I use one from the top of my head down around my chin to make sure it's sitting as far down on my head as it can to get good contact and that seems to be working well. It's just a bit uncomfortable so I put a cloth under my chin (looks totally ridiculous tho lol)
The first shower and brush after chemo made me really nervous. It was a real struggle because my hair was so tangled and matted from cold capping that I felt like I lost a lot. But I am also used to seeing daily shedding after a shower and now I'm seeing weekly which takes some getting used to. It took me forever to comb-thru (wish I had known about the corn starch! what a great idea) But I got myself a good leave-in conditioner spray/detangler which has been working great and cutting down my brushing time to a fraction, helps with shedding as well as for my sanity. I read some ladies had trouble with like a freezer burn and I had that problem my first session. I have a widows peak so I cant butt up the moleskin to my hairline so I got a burn in the gap. So the last 2 times I've put vasoline around my hairline which has prevented anymore burn and also helped so the moleskin didn't stick to my hair and rip it out...which would totally defeat the purpose lol. Then I wet my hair with a spray bottle and put my shower cap on over. Then the cold caps.
There are a few things I've ended up doing differently- not on purpose, mostly just laziness lol. I wash my hair normally in the shower. I use cold-ish water but just under the faucet like normal and I'm just gentle as I lather. I am using Dermorganics as suggested. I got a satin pillowcase and satin sleep caps that I have yet to use, I just keep forgetting! And I just put my hair in a bun or a braid everyday. It helps that I work in a cubicle where no one will notice if I'm looking homeless.
It's been nice to see that there are a couple different options for cold-capping that are successful because that means more women can take advantage of the process!
And just a cheesy pic of me and my elastogel's- halfway there!
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Hey ladies,
A more cheerful post than last time... Thank you all who responded to me with suggestions to my shed desperation!!!!
So, my current situation is.. a still have hair, but barely. Maybe lost about 60% or even more and that's only after two infusions. I decided that I couldn't go on with the hair desperation anymore so I went wig shopping and am now wearing a wig when I leave my house. I didn't shave my hair and probably won't, I don't think I have the guts to do it again and the front part of my hair is still perfect (virtually no hair loss at all) so I'll try to keep it throughout and hopefully it'll allow me to do the hair extensions earlier. I'm not paying anything to use the paxman and don't even have to worry about anything since the company always sends someone to do all the work for me so I guess I might as well keep doing it...
Even though it is not working for me, I'm so, soooo grateful for having the opportunity to try and I encourage any new people here to do so. The success stories are simply inspiring and if there's a chance (and in this case it is a huge one) to save your hair it is definitely worth it!!!
I'll keep following your stories here as they make me feel more "normal" in this crazy time of my life and keep you posted on my hair growth evolution!
Now, I have a question about ice chips... I know that some of you are chewing on them to avoid the metal taste... I'm STRUGGLING with the taste thing and would love to give it a try. How does it work? Do you have to start early? Keep the ice in your mouth the entire time? I'm doing taxotere and carboplatin...should I do it in both medications? Can't stand not tasting food anymore!!!
(I'm a chef!)Oh, a little info on the elastogel caps. There is a hospital here in Brazil that has been using the elastogel caps for a few years now, and with success! I've heard from people who saved their hair. They only charge a small fee for the usage of the caps and the nurses themselves take care of temperature, changing them, time and everything else! This is a step forward into spreading the cap knowledge around...makes me happy!
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hi killerfunbags. Good to see your results and your system working for you. I am using pcc, but I too have a deep widows peak and we cut a v notch in the puffy moleskin so it doesn't rip any hair out, as well as using thin puffy strips between my eyebrows and temples, then we use thin moleskin over the ears. Haven't had a problem w frostbite yet, and hairline is looking good. Good luck to you!
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Killerfunbags - your post about Elastogels is SO GOOD, clear, thorough, it needs to be bookmarked and saved for future users! Huge congrats on being 1/2 way through - yee ha! And you look adorable in your cap, btw!
Marcela - glad to hear you are hanging in and found a solution that works for you! RE: ice chips. I was told to start chewing 15 min before Taxotere, all during Tax, and 15 min post. However, I just read online that Carbo could be the culprit, too. I only did it before/during/after Tax and had no taste changes...but that could just be my genetics. I did both Tax and Carbo. I would at least try it during the Tax.
Oh and avoid your favorite foods during chemo. You might develop an aversion to them.
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I think it's the cytoxan that gives me the metallic taste because I had it 14 years ago and had the same problem. No matter how much ice I chew, I can't seem to get rid of that metallic taste. I've heard of these things called Aberries that you can get on Amazon that are supposed to help regain your taste buds but I haven't tried them.
I also got ahead of my side effects by taking the Ativan for nausea and the Pepcid for nausea as soon as I got home from chemo and it really helped this time.
We had a harder time keeping the cold caps as cold this time. Do most of you take them out of the containers and pack them in plastic bags and put them directly on the dry ice? The containers seemed to keep them too warm
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Killerfunbugs-Thank you so much for sharing that information! Elastogel caps do work, they're way more affordable and without the hassle of dealing with mismanagement at the Penguin company.
Suggestion: 1. Unfold a small square of gauze, cut in half and fold to make a 3 layer thick piece measuring @ 1/2" X 6". Put that at the top of hairline near forehead. 2. Don't use satin headwrap. It would create more heat to your scalp. 3. Wash your hair 2 times each week.
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Raindew, have you considered using Keranique? I just saw a commercial and am considering ordering it. Wonder if I should wait longer...that the hair is just going to fall out no matter what. I am only 4 weeks PFC...I cannot imagine shedding this way for another 5 weeks...I'll have to break out the wig I bought before I decided to do Cold Caps.
This sucks!!!
Oh thanks SueBee will check out other discussion board!
Happy Thanksgiving to you all!!! We have a lot to be thankful for....we couldn't gave done Cold caps without support from our loved ones!!
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Once the shedding starts, does it stop for a few days? I've been shedding for fourdays and I haven't even washed my hair yet!
We seemed to have trouble keeping the caps cold enough this time. We keep them in the containers on dry ice, but I see on the forum some of you have put them in large baggies and laid them directly on the ice. Did that help get them colder?
Thx!
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Jennliza - I don't even know what Keranique is :-) (we are cord cutters, so don't see TV commercials)
I have been using nioxin shampoo. And I think it has slowed recently...will wash it tonight and take stock then (it's a handful of strands a day from my clothes etc except washing days now...)
Don't panic!! It's completely fine to look at...no bald patches or anything like that. I just have thinner hair than I used to (I had A LOT of hair...now it hangs flatter than I am used to and my ponytail feels way smaller). People are shocked I've recently finished chemo.
It's mostly bothering me that I don't know when it will end...it's funny in all the crazy crap that comes with BC young you'd think I'd have got my zen on about not controlling things...you'd think wrong!!
Anyhow in my looooooong list of stuff I am grateful for this year, PCC and this group of women who helped definitely made the list. Thank you all!!
Rain
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Leslienva,,
Shedding started about 3 weeks after my 1st chemo...that 1st wash after my 2nd chemo was bad. I would say it was usually the 1st wash after chemo that it was bad...but in between a lot less shedding.
I was then switched to a different chemo that doesn't necessarily make you lose all your hair....and my hair didn't fall out much then...also b/c I continued with the cold caps.
Unfortunately shedding does pick up a lot after chemo....eyebrows, eyelashes and hair! My eyebrows and lashes fell off at the end of chemo, but are mostly back now...4wks PFC. My hair is continuing to fall out....and grow for that matter. The loss is mostly at the nape of my neck and above/back of ears...I would estimate I have lost 20-25% of my hair now.
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Leslienva
we put the caps in the containers for first time use. After the first time the cap was used, it went into a freezer bag to refreeze directly on the ice. We always put the headbands on the ice. It's the best way to get the caps cold fast. Good luck
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Jennaliza and RainDew, I'm in the same boat. I lost almost no hair during chemo then the shedding picked up massively about a week PFC. Luckily, it has just started to slow down at 4 weeks PFC but I'm still shedding. My eyebrows are gone but I'm having fun drawing them in.
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Harrysmom - my eyebrows thankfully grew back pretty quickly. I also lost them PFC, can't remember exactly when but they took only around 3-4 weeks to be back where they were.
eyelashes are taking longer...I can just start to see baby ones growing in. So exciting!
Now just hoping shedding with quit soon. It's slowed for sure, but I still lost maybe 50 hairs when washing it this week.
Looking forward to moving past the apprehension of 'is it done yet??'. And to having a cut and color :-)
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Hey all! I just wanted to update everyone on my frost bite issue. It's been 3 weeks since my first infusion and the day I got the frost bite. Today was my 2nd infusion- halfway done, whoo hoo!!! Anyway, at this time, I have a 2 inch bald spot on the front center of my head from the frost bite. It scabbed up, and the dead skin and hair came off with the scab. Fortunately, I can comb my hair over it and it's not really noticeable. But I just hope that more won't fall out than already did because the area it's in not a great place to hide a bald spot. The good news is, new hair is already growing there!!! I felt little stubbles the other day and I thought it was another scab so I looked closely in the mirror. What a shock that I saw little hairs there!!! So that's a great sign that the caps are working. Hopefully soon those hairs will be long enough to cover the bald spot.As I mentioned earlier, today I had my 2nd infusion. I think my problems were the following last time:
1. I was wearing the gold strap for thick hair when I shouldn't have been. I do have thick hair, but not on the top of my head. It was pushing the caps down too hard on my scalp, which caused the frost bite.
2. Today we used a rolling pin to roll out the caps. It made the temperature so much more even in the caps and I was not in any pain while wearing them. Last time I cried at the change of every cap and my head was numb when I took the last cap off. Today when I took the last cap off, my head felt totally normal, so I'm confident I didn't give myself frost bite this time.
3. I used a thin layer of gauze over the top of my head to protect it.
I hope this helps anyone in the future who might get frost bite, and possibly helping them to avoid it.
So far (I'm on day 22 today) I'm having minimal shedding (besides the top of my head where the frost bite was). My dr said most people lose their hair (I'm on TC by the way) after the 2nd infusion, so I guess this week will be really telling. I've heard about the "BIG SHED" that happens at my next wash this week and I'm petrified!
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jenndance - great tips for those doing cold caps to avoid frostbite - your experience is very valuable to future cappers! And YAY that the hair is already growing back in!!!
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Jennjdance, I started shedding at Day 21 (day of chemo 2) and have been shedding pretty steadily since. My hair wash wasn't too bad, tho. I'm at Day 28 and I don't think it's noticeable to anyone but me yet.
Do you pack the caps in the containers or in plastic hefty bags? We used the containers and this time we had trouble getting the second round caps cold enough.
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we packed them in the boxes. I think they were cold enough. Maybe -29 instead of -32. I think/hope that's cold enough.
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HELP PLEASE!! I have my first treatment tomorrow morning. I went in to the hospital freezer to make sure my caps were okay. (I'm the first to use the freezer/caps here) They are the right temp, but soooo frozen solid that I couldn't open it all the way!I didn't want to force it for fear of breaking the cap. I was really nervous anyway, but now I am so worried the caps won't be plyable enough to get on my head! Thanks for any help you can give
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Pink, try not to worry. You'll simply want to remove from freezer before you need it. Bring gloves so you and/or you helper can knead the cap until it's ready to be used. While I used dry ice, we frequently had to take caps out 15 minutes before use and knead for a bit. While yours are the correct temp, the kneading will help get them pliable.
You'll be okay. It's far from an exact and precise exercise. Yet works for so many.
Best wishes tomorrow.
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Thanks so much Kazzy! We'll get there early to make sure the first cap is ready. When you read about using the PCC,they talk about how everything has to be so precise and it's freaking me out! Sounds like you and some others didn't follow exactly but still had good results. I'm going to try and relax a bit.0
