Cold Caps Users Past and Present, to Save Hair
Comments
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Runner70 -- YES, YES, YES, YES, YES. I still have muscle pain, but it is finally getting better. It really still bothered me a lot for about a month after chemo. I had my last chemo on April 27. I feel like just in the last 2-3 weeks I can finally tell that it's getting better. I am somewhat active, but I know I should do a lot better. Yes, it's the worst when I wake up in the morning. But going upstairs can be painful too. Mine was mostly my leg muscles.
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Can I get some advice about wearing a hat? I bought caps that are mesh back (kind of like a cuter version of a trucker hat). I also bought the baseball cap that has "hair" hanging from it - it makes me feel so much better when I try it on, I have a couple of "public" outings I need to do in the next month. I'm just nervous that wearing a hat for a day or more may be doing harm to my fragile follicles. (I'm 6 days past my 3rd of 4 TC treatments - hair is pretty thin, doing strategic combovers and using Toppix). Anyone have any experience to share? THANKS.
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Aimless - I wore a helmet to ski all the way through, and a hat a few times, though few are big enough to be loose on my enormous noggin. I don't think slight warmth from a cap is going to do much to the remaining hair. I also tried a pretty scarf tied like a side pony, and it looked really cute but a bit too coachella for my style:) You have to do what makes you feel good, because those moments of normal life are really important, where you can be yourself and forget this C thing for a bit...
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Aimless, I want similar advice too - I'm about 1 cycle behind you, with very thin hair now, and I REALLY want to be able to wear headbands/scarves/wig toppers JUST for a few special occasions this summer. Most days I stay home and nobody sees me, or I run local errands and don't mind, but for nice outings (for like 3-4 hours a couple of times a month) it would feel so much better to be able to cover the top of my head!!!!
Would love input from cappers who have tried this...
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Not sure if anyone can see it but me…but there is about an inch of thick growth in there - mostly noticeable at the bangs where it looks like someone went apeshit with the thinning shears….I am so looking forward to it being thick all over again!!!
Going to get a new haircut soon. Looking forward to posting that pic:)
BTW, using Latisse on my lashes...
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I didn't know some hair loss is permanent either. Is the cap covered by some insurances or is it just up to the individuals?
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Aimless, I wear fedora hat and cap when I am outside or go for a hike. After all it is summer and Sun is also damaging if you don't cover your head. And i swaet a lot while exercising daily. I can't stop that. Plus stupid hot flashes I get .but I still have 5 more treatments to go. Who knows what will happen to my hair... Am I doomed to have them shed compeletely by the end of treatment? Hope not. My husband now so worried about it.. Not Bcs of me getting bold and he would not love me because of it, but because it's his work as a capper and effort that he puts in. As I said before , it's his hair now😍
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So glad your hair is growing, vinny! I can't wait to be there. How is the Latisse working for you?
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Dara, there have been a couple of women posting here who were able to get insurance coverage for cold caps, but the vast majority of us just paid out of pocket.
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Viktoryak, Zinny and Elise, thank you so much for the weigh-in. I swear the "rules" can be so intimidating. Having changed so many of my habits to accommodate the capping and the cancer, it's true that some "normal" in the midst of all this is vital. Viktoryak - I totally relate to my husband (and my sister) as (more) invested in my hair than I!! This last treatment, I took two Ativan and they had to keep waking me up for cap changes. I promise - it was the way to go. Zinny, your regrowth was wonderful to see! I have been wearing light chiffon scarves as headbands....I bought several new "boho shirts" to match my look...can relate to you coachella reference.
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I have a super lightweight baseball cap (Nike makes on that is almost weightless) that I have been wearing when I need to be outside. I wear it loosely, figure its better than my scalp burning and also better than putting sunscreen in my hair.
Whenever someone comments on how much hair I still have, I swear my husband (my capper) grins a little bigger. Now when I am absentmindedly touching my head, he'll tell me stop touching my hair- he's very protective of it.
Similarly, the people at the dry ice place are also all very invested, each time they want to know more detail about how much hair I've lost, etc. I feel like at the end of this if I still have hair I need to have a party with the people from the dry ice place, my infusion nurses, the entire check-in desk who help my husband get the caps back to our private room right when they see us arrive with our coolers, and the valet at the hospital that help us get wheelchairs every time for our coolers (we use some provided by the dry ice place so they don't have wheels.)0 -
i wear scarves all the time! My hair thinned a lot on the part and crown and I get sunburned if I dont cover, been wearing them since 3TC. The scarves don't seem to have any effect on the shedding
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Hi Zinny,
I see your new hair! My bangs did exactly the same thing - they thinned during chemo, and they were the first hair to grow back. It was literally like one day the original thickness was there again. My stylist noticed it, too :-)
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Here's another question - - I had my hair colored (at an organic salon recommended by my cold-cap nurse 8 weeks ago) - before I started treatment. I still have no gray roots...leaving me to conclude that my hair is not growing...just shedding and dormant. Also, definitely some breaking hair too. Anyone else have "dormant" hair - I read a number of entries from those whose roots are growing out. Shall I consider this a benefit? (ugh)
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Aimless, it's funny but I also sleep trough most of capping because of meds and my husband keeps waking me up.. I believe cappers do more difficult job then us . And for us it is actually benefit to sleep trough it.. makes it easier to handle 6hrs of cold caps. I take xanax plus benadryl premed.. What a nice sleep! I just wake up here and there... but mostly sleeping....or in a "flying" state of mind...
When I go to the bathroom my husband has to hold me all the way trough the walk and while I am peeing, so I don't fall off in a toilet...:) And my cold cap is so heavy.. lol so I do need someone to hold me while i am in that position.lol
I get so exited when I have a infusion room not far from the bathroom...lol... so I don't have to do a long walk with IV in this sleepy stage.. (how much do we need for happiness? )
As for growing hair. They do grow for me. From my stylish short haircut to a messy curling up bangs and hair who knows what kind of style..:) But I don't see much grey hair yet.. just a bit... I colored them on May 1st. so maybe it is not the time yet. but should have been greyish by this time....
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Aimless -- I didn't realize it until at least halfway through, but I'm sure my hair didn't really grow. My haircut did much better than I expected, and I finally realized it was because it wasn't growing. And now that I'm almost 2 months past my last chemo, it definitely has grown and my layers don't look very good.
And YES to all of you with the overprotective family members! My mom was my capper and she keeps telling me I have to keep babying my hair longer b/c she feels very proprietary of my hair. Haha!
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Regarding whether hair continues to grow during chemo, I guess everyone is different...the hair that I kept continued to grow at its normal rate, so by the time I finished chemo, I had nearly 2" of growth. I had highlighted my hair a few weeks prior to chemo so it was easy to see the color demarcation. I took biotin during chemo with the approval of my oncologist, so maybe that helped with growth. My nails also grew really fast during chemo as well. I never iced my nails or did anything other than take biotin, and did not have any problems with them.
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Ok I've officially ordered my cold caps and am starting chemo on the 27th! Now I'm trying to figure out all of the logistics. The Caps FAQs page is so very helpful, but have one additional question. Is there a preference for blocks of dry ice vs. pellets in terms of effectiveness and ease of use? For those of you who have used or are using dry ice, would love to hear your thoughts!
Thanks!!
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I'm the same as wildflower. I took biotin and my hair grew at least 2 inches during chemo. My nails grew too and did not split or turn brown. I have a friend who finished taxotere 6 months ago and her nails are still all jagged and split. I do have very faint horizontal lines on them indicating each chemo. I would not have known they were there if I wasn't looking. I don't know if the biotin helped or not but I was not expecting hair growth.
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I just finished my #8 taxol. 2/3 done. I am so worried we screwed up. My husband forgot to remove hand band that we apply to help to move hair up when we put protective tape. So it was there all time for about 3hrs.then we noticed . I still have 1 hr.left till time to remove caps. I am so worried about this screw up.;(
And on a funny note here are my weekly Snapchat cold cap fun photos...
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Two things:
1. Are silica and biotin the same thing?
2. I FINALLY stopped the super heavy shedding, on day 31 post first chemo. Yesterday and today just shed a few strands like I would before I started chemo. The good news is this seems to be on par with some other people's experiences. BUT I'm still scared - will there be a big shed with every treatment? Or am I safe now?
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ILoveArt: Thank you! I am doing Taxol first and honestly, even after 8 weeks (8 chemo) I have hardly lost any hair. I have been warned that A/C will be tougher.
I was told by my rep that you can re-use the first two caps because they are still pretty darn cold when you take them off. If that is the case, I think I can get away with the 14 I have (16 with refreezing).
It has been going so well that I hate to screw it up by not having enough caps! I am definetly ordering more bands.
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susan, I am not sure how Pingin works but with Attic we have 8 caps in dry ice and they freez up very fast. We rotate them every 15 min.
Just took off last cap. Feel dizzy but glad it's over for today! Now finally will eat.
Hope Our screw up will not cause hair loss.
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Elsie biotin and silica are different - I have a Silica tab 3 times a day.
I had some shedding after every cycle of chemo- but the good news is that by the 4th the hair that has shed is growing back a bit it seems. I know move to AC which some say is tougher .
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I didn't take any biotin and my hair continued to grow during chemo.
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Districtgirl, I found that dry ice slabs worked best for me. I had 8 caps and two coolers. We would get 8 slabs of dry ice, each was 10 pounds. We would place one slab on the bottom of the cooler, then two caps in their boxes, then the second slab, then two more caps, and the third slab on top. There was room for the fourth slab along the wall of the cooler, on the side of the caps boxes and we put it there for extra coolness. We did the same with the second cooler and the remaining caps and slabs.
We bought additional 20 pounds of dry ice in pellets the first two times, but we figured out that we did not need it at all and my husband said that it was more of a pain to deal with it.
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anyone else's head hurt where the hair is coming out? I am shedding significantly on the lower back part of my head. The caps didn't reach there because I have a huge melon head. I have a ton of hair too- but I can see the thinning in the back. It feels like my head is sunburned there though :-(
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ican - I had no pain but lots of itchiness, and Apple Cider Vinegar works well for that. It might work for irritation/soreness as well.
What round of chemo are you on? I wish I still had as much hair as you do, it looks so thick!
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that sunburn thing is normal. I got that feeling about 2 weeks after every session but my hair didn't fall out in those places. It does hurt. It's nerve pain. I'm not sure if it's damaged nerves coming to the surface but if you happen to take neurontin like I do, it takes that pain away
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Y'all, I live in the south and it is hotter than blue blazes here. And the humidity is about 1 million %. I washed my hair in the sink this morning knowing it would dry quickly b/c of the heat. I usually do it at night. Then I had a good 10 minute walk from my car into work. I cannot put into words what the humidity did to my freshly washed, slightly damp hair. But guess what? I have hair and it is clean!!!
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