Cold Caps Users Past and Present, to Save Hair
Comments
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Zinny,
No one would ever know you had chemo - heck, even normal hair has its "fluffier" days vs "flatter" days. Your hair held up well! And yay that you only had to endure 7 weeks of shedding! Mine kept on till 12 weeks PFC!
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My bottle of Toppix has arrived…any tips on how to use it? I have a widening part that I'd like to conceal. Does having the Toppix fibers on my head interfere at all with PCC protocol? Does it mean I will have to wash hair more often than recommended?
I'm still feeling tons of sadness over how much shedding and thinning I've had. I just did my 2nd round of TC on Thursday. Have lost about 45 percent of my hair already and no signs of slowing down.
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Zinny
I am so happy for you to be finally on the other side! Great job cold capping! You are a true success. Your story has kept my spirits up as I battle through too. Eleven more Taxol for me. I think I will take your advice and get a little trim to freshen up my scraggly hair.
Wishing you only the best for a cancer free future,
ILoveArt
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yay zinny!
I'm glad you are ALL DONE! Your hair looks great. Now just time to wait for it to start filling in:)
Question: When you all say "post chemo" are you starting your count from the day of your last treatment?
Thanks:)))
Vicki
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That's what I did - my reasoning was that it was all done and things could only head upward from that point on. If you're like me, at first you will track every day, every week post chemo. I kept it marked on a calendar by day and week. Somewhere around week 21 I started losing count without having to refer back to my calendar. You'll get there too ☺
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yes Vicky, i am counting from last infusion:)
Thanks Iloveart
It just looks flatter but if i gather it all together in a "short hair pony" it is honestly 30% or less of what it used to be. But I had the kind of thick hair that had unfamiliar hair stylists needing to mix up a second batch of colour because they misjudged and ran out...elise, hover the container over the area and tap the end - kind of like the cinnamon at starbucks
and then "pat it in" is what seems to work. Some seems to stick to the skin, some to the other hairs, so it covers up the scalp but also fluffs up the volume. I used it on my pronounced crown which is always so much more noticeable between wash days. OF note, the fibres do come off a little, so I would notice some under my nails if i fussed with my hair at all. Honestly, there are many of us, me included, that really felt there was no way they would get to the end with hair with how much shedding happened. Mine never stopped the whole time, was worse after each chemo, but I still have hair! Not great hair, but hair none the less. I bought a wig just in case, and wore it once for a special party, but that's it. I just emailed my hairstylist though and am looking forward to going much shorter and getting a little more style!!!0 -
I've been using Toppix for years on my daughter who has very thin hair. Now using on my (cold cap) bald spots successfully. (Mostly on the crown of my head). It's really easy. I shake it right from the bottle about 2-3 inches above my head. Move it around a bit while shaking. It's truly an amazing product. You'll see.
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Great pic Zinny congratulations on being done with chemo things will only go up from here
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aimless-I'm not sure how you got a photo of me to use as your profile pic but you should have asked permission
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haha!
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jajaja phalia!!! at this point I think that photo is most of us!!!
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Thanks for all of the mouth sore tips, gals! Ended up getting some acyclovir and trosh lozenges and that cleared things right up. Little did I know that was the least of my concerns. I am in the midst of a super outbreak of hives - landed in the ER on Friday night with swollen lips and ears. Got that down but still trying to figure out the right combo of meds to keep them away entirely.
So, now it looks like I may have a late in the game switch on chemo #4 to AC from TC, they think the T may be the culprit in the hives, a delayed allergic reaction. From a capping standpoint, am I screwed? TC has gone well for me and I know AC is harder on the hair and lower success rate - will only one round undo me or because I have already lost a lot of the old follicles will I be okay with just one AC? I will be sooooo pissed if all of this was for naught at this point.
Thanks for any advice!
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amyabs,
That's a good question. Are you using the Penguin caps? If so, you could ask your rep what she thinks, and if you should adjust your capping protocol to accommodate for the AC. I would think one round of AC at the end would be less damaging because of the reasons you cited. One thing you could do to hopefully offset the damage, is maybe change your caps more frequently than every 30 minutes, like every 20 minutes so your scalp will remain as cold as possible. Someone on here has been doing that as a precaution because they felt their caps just weren't getting cold enough. But like I said, ask your rep and see what she says.
Good luck with those hives...I had an allergic reaction to an antibiotic once, which caused me to have hives all over. They're miserable! Hope you're feeling better now!
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Thanks, Wildflower! I am doing Penguin caps and never thought to contact my rep - excellent idea! And the more frequent cap changes might be a good idea too. Just not sure they will get cold enough for me with shortening their usage time, will have to see how that goes.
Still trying to get the hives under control. Onto a new type of steroid now as prednisone didn't work. Last chemo (hopefully!!!) is due a week from tomorrow so I am hoping they resolve and we can just get this crap over with, lol.
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Amy,
Are you using a freezer or dry ice? I used a cooler full of dry ice, and put the used caps back on ice inside a 2 gallon zip lock bag instead of putting them in the boxes. They froze back really fast. Penguin might want to send you an extra cap or two if you change more frequently than every 30 minutes, just so you'll have enough to rotate. Be sure to ask the doctor to give you the dosage details for the AC before you call the rep.
One more to go! You are almost there!!!
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Ladies, I am the one who changes caps every 15 min. but it is Arctic caps they should be changed every 20 min but My husband and I invented 15 min to keep caps colder. We have 8 caps total and they kept in dry ice. They get frozen fast enough.
On the other note. I noticed my eyebrows becoming thiner:( I never used eyebrow liner before but I think I might need to if it keeps thinning....:( please any suggestions, lessons on it? I was told I shouldn't loose them on weekly Taxol...I hope Mbe it's just thinning...and it will stop. I am going for #7 tomorrow....
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Hi Viktoryak,
Re: eyebrows. Sephora has all kinds of eyebrow powders and timy brushes , that make your eyebrows look totally natural. Let them find the right shade.
You are wise to change your caps more often. I noticed that my cold cap helper ( referred by Penguin) kept the caps in plastic zip locks while in the freezer she has with her. Also she used two velcro belts to hold cap snug arond crown and over the top and I think under chin. ( It was 5 months ago). That said, I am still sadly shedding, but do have hair on my head, and Toppik under the combed over hair helps to mask the baldish spots.
Lots of tastefully done eye make up seems to draw attention to the my , and away from somewhat straggely hair, at least I like to think so.
To everyone, soldier one. Chemo does end, and cold caps, while not perfect, do help.0 -
Viktoryak, sorry to say but my eyebrows and my eyelashes did fall out on 12 weekly Taxols. The eyebrows started thinning gradually during chemo and fell out completely a few weeks PFC as did the eyelashes. The good news is that they do come back fairly quickly. My eyelids were bald for a couple of weeks. It was probably all in my head, but my eyeballs fell cold during that time.
I bought some eye eyebrow powders and stencils at Ulta, but I'm not artistically inclined and never did get a hang of shaping my eyebrows well. I have bangs, so this helped hiding what I messed up.
Today I'm almost 13 months PFC. My eyebrows are back about 70-80% to their former "glory" and I use a pencil to fill them in, although I probably could get away without it. My eyelashes went through few cycles of falling out and growing back and I think I turned a corner with them about a month ago. They are very close to what they used to be.
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Hello All,
I am considering capping when I start chemo in a couple weeks. I had a question was hoping for some opinions on.
I wear very short hair. very very short on the sides. Nearly buzzed with a bit longer on top. back to front, about 1.5 inches to 3.5 inches in the bangs.
Could I still benefit from capping with my hair this short?
Thanks,
revnet0 -
BBwithBC45, thank you for the information...it's really upsetting to have all fall out PFC. When you think it's all over it catches up with you
And I remember you said your hair started shading after...so there no way to know now If caps work:(
I just had my pre chemo Blood test and I was told by nurse that my hair look foolest from a few cold cappers she know.. But it's Taxol..so it's sneaking on you after?
Anyone else here has experience with weekly Taxol only?
Yes...I know I shouldn't be so concerned about hair and eyebrows but if I think of cancer and if....it gets worst. I rather concentrate on hair now...
Going to see my MO now and then my #7.
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Hey viktoryak,
I was on taxotere, and my eyelashes and brows fell completely out about 8 weeks pfc. Except for maybe 4 or 5 on each eye.The good news, is they came back really, really fast. - like in 2 weeks - seriously! I got a prescription for Latisse and started using it about a month PFC. My lashes actually came in thicker and better than before. There was one more cycle of thinning brows and lashes after that, but they never fell out so completely again. The brow and lash cycle eventually stabilizes. A lot of us have experienced this after chemo ends, so just be prepared and don't stress about it too much! It's VERY temporary!
Good luck with today's treatment!
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victoryak - my eyebrows and eyelashes fell out a couple of weeks PFC. They straggled on until about the 6th week and then were pretty much gone. However, then they came back! Fast. Eyebrows all at once, lashes very quickly. And then, suddenly, when I looked in the mirror yesterday, I looked like me again. OK, me with huge eyebrows, but my sparkly eyes looked like mine and for the first time in a long time, I thought I looked pretty.
Hooray!
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Ladies, thank you! I will try prepare myself mentally for it and not to stress....
Will try to post crazy cold cap Snapchat picture after treatment today!👵 💂
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Viktoryak, I think my shedding pattern was an exception rather than a rule, meaning that most of it happened after chemo ended, and it lasted for such a long time. Still, I really don't think anybody can tell I lost any hair, because its texture has changed and it looks more fluffy.
There was another Taxol only cold capper who was a few weeks ahead of me. You can search her posts, her screen name is Suladog - you'll see that she lost barely any hair.
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viktoryak - I did weekly taxol and did not lose eyebrows. Maybe thinned a little, but not noticeable. I lost the bottom eyelashes on one eye - and I didn't even notice until the stubs were already growing in. The rest of my eyelashes were fine! It's different for everyone, so as you say, try not to stress.
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Revnet, my hair is long so I cannot speak from experience and I hope someone with shorter hair will chime in. But logically thinking, I do not see why you wouldn't benefit. It possible that your instructions regarding the temperature or the duration of cold capping would be different from somebody with longer hair.
I used Penguin Cold Caps, you can check out their website and you could contact their representative and see what they have to say.
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Wildflower - thanks for the tip on the freezer bags, I will do that for sure if we struggle with temps again! I contacted Penguin with the potential details and only change would be to cap 5 hours after instead of 4. Ugh, not thrilled but hoping that will do the trick! I so don't want this to all go south now!
Revnet - I wear my hair fairly short, you can see some pics a few pages back. The caps so far have worked pretty well for me. It is harder to hide thin spots with shorter hair but I just sort of push it around until it looks okay, lol.
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Phalia,
Haha!! Once I heard the troll hair reference on this site, I knew I had found "my people." Feel free to "share" profile pics, in fact!! So in starting child caps, I hoped I would keep my hair - but hadn't quite realized that the hair I would be keeping would be quite this "lovely." (I am a blow-drying, hair product addict, fighting years of frizzy, east coast hair). Oh well - this too shall pass, huh? Just finished round three of TC 15 minutes ago (out of 4). I combed it out after the last cap came off, with "Honest" detangling spray. After my 2nd tx I ended up with 2 HUGE matts that had to get picked out, resulting in my bald spots on crown of my head. I'm grateful that the next one will be th last one - -then the endless wait to have hair I can treat, cut, dry...etc 12 weeks we're thinking?
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Hi All! How often can I wash my troll hair? Penguin rep said 2 to 3 times a week but to avoid hair shedding each wash, is it best to wash it less often?
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#7 done. 5 more left .3 more hrs of cold caps. Picture before and after
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