Cold Caps Users Past and Present, to Save Hair
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Hi All:
I think I have lost my bottom eyelashes, but top still there, after using generic latisse all thru chemo and beyond. Just stopped using it last few weeks. I am 8 weeks PFC. The hair on my legs, armpits and down under has never come back, which makes me thankful I did the Cold Caps, because maybe, if I didn't do the caps I might have lost my hair permanently, which seems to be the case for legs, etc. I really don't care about the legs and armpits--who needs to shave ththere anymore anyway!!!
To all of you having a hard time, stick with it, it will work and it will be over soon!!
Keep Positive-Laugh and Smile!!
Nancy
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Thanks for the pep talk Nancy. Are you noticing any new growth? Yes it's tough! But doable. I keep forgetting and wear black t shirts. Not a good idea!
I'm halfway thru TC x4 done, 8 days past number 2. Hair is shedding but still on my head, nearly all gone everywhere else. Brows and lashes hanging in as well, but brow stragglers pull out with little resistance. I'm using latisse to encourage them to hang in there or at least continue growing.
Even if I lost a lot of scalp hair, my end game is not suffering permanent hair loss. I did examine my scalp and I can see new hairs already. But I did start shedding before i started chemo. The stress of the dx started the follicle suicide back in march.0 -
Anniemomofthree: My doctor told me other patients had waves of lash regrowth and then loss with Latisse. Then again, she told me every week I'd lose my hair :-)
Well ladies, exactly right now as I type, it is 1 year to the minute since I finished chemo and removed my final Penguin Cold Cap, and watched the sun set over the bay. Today after my swim, I took a cold shower after my swim. Can't believe I did that every day for 6+ months! Probably sounds crazy, but it was a reminder and celebration of how strong I have been through this.
Yes, I swam every day except the four infusion days. I have swum 1.25 miles every day since 1986. I calculate I've gone about 3/5 around the equator -- my goal is to do one "lap" in my life. During chemo (4TC@3) I swam 22 miles, hiked/walked about 60 miles, biked a bunch, took up weight training, learned golf, and resumed martial arts after almost 30 years. I never bothered to count the hours spent power-napping. I miss having all that time to take care of myself.
Sashette: Hands down my heaviest shedding was PFC, I don't know why -- I imagine this is routine and that's why Frank is adamant about the hair care protocol being continued 6 months PFC. Perhaps having a cap on hand for continued cooling would have helped? In terms of regrowth, I didn't realize at the time but it began regrowing during chemo (!)(I still find it shocking to type that sentence). Oh.My.God. did it come roaring back. Thick, super-curly, kind of hot even because it's so thick. But over the last couple of months, and I swear this last month most of all, my existing hair has become incredibly curly -- went from elegant waves to kinky curly. It is probably that as the old hair grew out, the newer portion has come in super-curly, as has the totally new hair. Styling is getting, um, interesting: I have this underlayer at my nape and above one ear (and framing my face somewhat) of 4"-curliques (they grow a good half-inch every couple of weeks), plus a little halo of 4" regrowth, curly, all over my head from where I all-over shed. It all makes my existing hair kind of stick up high -- not quite a boufant, but not exactly NOT boufant. I call it Texas Medusa :-) Shoot, maybe I'll start a new trend. (Gotta stay positive!) I just enjoy it, marvel at it, wonder why the heck it does that, and know that it's yet another short-term SE of this long journey. It'll grow back to what it used to be.
keeppositive: my body hair took a while to return, it was like watching a garden grow. My treatment side underarm didn't regrow for a few months -- I think the radiation might have affected it. So I shaved just one arm for a while, and now I'm back to normal.
Cheers, and happy summer,
Susan
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Annie - loved your Minnesota bald men theory!! I'm glad to hear you didn't use them at home either. Like Arlene - they literally make me sick to my stomach. I find the dry ice deep freeze smell makes me ill!
Arlene - i remember when i first logged on, you were just starting to shed, and worry. It's been wonderful following your progress and your success. Thanks for that!
Susan- I hope I have your success! Thanks for checking in on us new girls!!
Leeann - you should post a photo with your bandana -i'd love to see!!!
Annie - i'm using Latisse too. Nothing has fallen yet. I've had 4 AC, and 1 TAxol. 3 more to go. Keep me posted on what happens next. Having eyebrows has been a help in looking 'normal'.
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DebRox - your hair will change over the next few weeks. i found the oilness went away quickly. Now, it's dry and i almost want to go more than a week to wash (because so miuch comes out during the wash!), plus, my hair is easier to style a few days after the wash.
If you tell FRank TC x 4, he should know the infusion times. My group wasn't very supportive either. They've made a quick turnaround and are asking questions and looking into various cold cap products on the market. You'll see ... just be friendly, apologize for being a trouble ... and always show up with treats for the staff. cookies, cupcakes, etc. Worked for me. You may even ask if they have a seperate room for you to keep you out of their way. You'll have great success with TC. i was jealous reading the blog and seeing how well they did. I have AC/Taxol. the toughest drug out there with 8 treatments in total. You'll do MUCH better than me. Lucky girl!! Good luck. We're all here to answer questions. it'll be great.
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Hey - does anyone have an email address for CHeyenna?: i've PM'd her and haven't heard back. i'm wondering if she's not on here anymore.
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Sebm9. Congratulations on your 1 year!! I bet your 'Texas Medusa' looks fabulous and people who see you are trying to figure out how to replicate it. No curlicues for me yet, more like downy soft fine baby hair growing in.
Mdg my lashes and brows fell out all at once, then grew back quickly and fully. When they came back I had a few people comment on my 'perfect brows'. When asked I told them they had just grown back that way - they mused about shaving their brows to get perfect grow back. I only had a very short period of time of feeling 'erased' (browless and lashless)0 -
1 year Congratulations! I was wondering I am 5 weeks PFC and I have lost more hair since than during entire TX. The shedding slows for a few days then it starts getting real bad again. Has this happened to anyone else? When will it stop? Will using caps now help at all? Sorry for so many questions but it's worrying me.
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Congrats Susan on 1-year!
NMoss: Sorry to hear that you are still losing hair. I'm nearly 3 weeks PFC and still losing but just a bit more than normal and hoping it stays like that but I'm prepared for whatever it brings. Are you seeing new hairs coming in yet?
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I will be 24 weeks PFC this Friday. I had 6 tx of T/C and I used the Elasto Gel caps. All is well here and I just colored my hair (with over the counter stuff) the weekend of Memorial day and my hair held up wonderfully...the hair coming in is coming in strong and about 4 inches or so long, and my other hair is still growing...I still use my Pure Results shampoo and use warm water when I wash...no more cold here!
I have even started using my hair dryer and hair straightener, but not that often...You ladies are doing great!
Have a great day cold cap sisters!
Tori
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That's great Tori! It gives a lot of encouragement to many of us gals! I am happy to report that my PFC shedding is lessening. I washed tonight and Iost way less hair and it seems to be good. I have my exchange surgery tomorrow.....but since I will be off from work again for a few weeks I plan to color it soon. As soon as I know the shedding has settled....I am coloring it! I have the gentle color kit on stand by in the bathroom.....
I will keep you posted! NMoss: I had the same problem for the past two weeks...it was worse than during chemo. The good news is I still have a full head of hair. My cousin was just over and she said she thought Cold Caps were a success and could not tell I lost any hair. New hair is growing in...lots of hair that is almost 2 inches long and many that are about 1/2 inch long too. I hope your shedding slows down....I know how it feels! Hang in there. Hugs!
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Hi ToriGirl: Nice to see you again and to hear the GREAT news.
MDG: Yay, it is slowing down and you still have tons of hair. WONDERFUL!
Arlene
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Hi All:
Great to hear from ToriGirl who is 24 weeks or 6 mos. PFC. I would like to know what hair color product you used, and did you wait the full 6 mos. to color, or did you color earlier? I would love to color with a gentle product, but don't know how soon to do it. I am 8 weeks PFC. I would appreciate any feedback on this subject. When to start gentle coloring and names of a few products acceptable to use. I need a few names, because they may not all be available everywhere. Thanks. to all of you for your updates and always welcome advise and encouragement. Congrats to Susan on 1 year--over and out!!
Keep Poitive laugh Alot and Smile Often!!
Nancy
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OK, I DID IT. I colored my hair. I am 8 weeks PFC. I went to a different place, an organic hair salon. I had talked to the owner four times about the cold caps, my concern about it falling out, etc. They assured me of the natural hair color, the gentleness, blah blah blah. I wanted to be the same blond color but without the gray. I should have known something was up when the owner came over and asked the stylist what they had put in...then said "it is a good start...come back for some highlights." They had my back to the mirror. So, I put my feet down and turned myself around. Dark brown hair. I have always had blond hair (norwegian heritage). They insisted that it was dark blond. It is dark brown. They gave me a color corrector packet. I put it in at home. Same color, no change. So now I wait to see what will happen...so many chemicals. I hope my new brown hair does not fall out.
They did refund me fully.
Could be worse!!!
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Annie: That is great and it probably looks wonderful even though it isn't your color. Much better than the gray, I am sure.
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Hi Again:
Anniemomofthree: I have heard that your hair comes back different than it was before--in color-even how it takes the color when you dye it,/texture-straight vs curly-thick vs. thin, etc. Think of it as an adventure, a little bit of a mystery-where you don't know the outcome until you comb it out. As long as it doesn't fall out, you're ahead of the game!!
I see that my hair is coming in, in all different shades, some is grey, some is tan amd some is my original color of very, very dark brown that almost looks black. I'm just glad to have my hair, but I would really like it to look normal.(Some people, actually more than a few, have said they like my color. I think they are just being kind, or they have strange taste!)) It is very curly and wavy and there are a few of those corkscrew curls that look weird, and of course the color is a real mess, as is the style.
What was the name of the product they used? Did they tell you that? Also, what about the ingredients?
Keep Positive!!
Nancy
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Hey Annie~
My salon used a natural "vegetable dye"? and it was supposed to be light brown.
Came out very dark brown. Stylist said that my hair "grabbed the color like no other she had seen before..." A year out and I am back to highlighting etc...
Hugs and good thoughts to you all.
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Torigirl. You sound wonderful. Thank you for sharing!
Anniemomofthree. What a hair adventure you on! I hope you are finding something to like about being a temporary brunette. It would seem it will eventually wash out. I am glad they did not charge you. I like your positive attitude,..
Keeppositive. I am using Clairol 'beautiful" collection. It is the only no ammonia no peroxide hair color I could find. I purchase it at a beauty supply store that is open to the public. On the advice of the owner I purchased two colors and mix them together. One she said has more grey coverage and one will add highlights. The color is glossy and pretty. While waiting to check out at the store yesterday someone complemented the color of my hair. So nice to get a hair complement with all we have been through. Course she said she liked my hair color she did not say she liked my hair. I could be splitting hairs here.
Mdg. Good luck on your surgery. Will be sending positive thoughts your way...0 -
I actually colored my hair at 20 weeks PFC. I had been wearing a cap for so long to cover the gray, I was ready to do something. I ended up using over the counter Garnier Nutrisse and was just very careful to not let it touch my scalp.
The hair that is coming in for me is pretty straight. I've always had straight hair, so no real change. But, it is nice to have my hair thicken up again. Overall, I probably lost about 15-20% of the thickness of my hair during chemo, some around my ears and the nape of my neck. In all sincerity, no one could tell...in fact, no one even knew I was going through treatment!
I really need to figure out how to post pictures...I have some to share from when I started treatment to now...
Peace to you my dear sisters! God bless!
Tori
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Thank you all for sharing your PCC experiences, this is very helpful to me as I am about to start chemo in July and planning to use the PCC. My natural hair is dark brown and very very thick, i have been perming/relaxing it for years now as without the perm I have to straighten it and blow dry and flat iron.. LOL. Anyway, my hair is long now, am planning to cut it to just above my shoulders (before chemo), basically cutting off the permed hair and leaving my natural hair. I have not permed my hair since march and there is substantial amount f growth:-) Thank you again for sharing your experiences. Hugs to yu all.
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Hey Arlene Evryday is different, today is normal, yesterday was allot. its a roller coaster. How are you feeling? Done with TX!!
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Hi ladies; I jsut came back from my meeting with my MO's nurse practitioner, starting my chemo 7/7 I will have 6 TC cycles.. as he was going through the side effects we got to the hair loss part and he said that i will def loose all hair, and i told him that I am planning to use the PCC and he said that htey dont work!! I told him they do work, i ahve seen results of women wo used them and kept their hair; he said that its a 50/50 chance, and i told him i am ready to take that chance...I was bummed that he insisted they dont work! uurgghhh...
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My Onc said the same thing to until 3 weeks ago when he asked if this was my real hair or a wig. Eveyone is a non believer until one of us walks the walk and shows them the promised land. You will find onc's are very type A's who only belive what is written..
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Thanks nmoss:-)
I need help to find a place where i can get dry ice in Massachusetts; the infusion ctr where i will go for chemo do not have a freezing area etc.. Any ideas how i can find/locate a plcae to purchase dry ice in MA?
Thanks
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Hey NMoss: Hairwise, I am fine but still feeling effects from Chemo #4....the tireds are the worst and hoping they pass before I begin rads in a few weeks since I understand that is the worst side effect from Rads. Getting some coconut oil for the rads along with Aloe and Vitamin E and some of the products that everyone has mentioned here.
Monday will be 3 weeks PFC and understand that I might then start noticing more shedding. I'm just happy to see the new little hairs coming in.
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Www.acmeice.com
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For those of you who used dry ice to cool the PCC, I have a question - what do you do with the ice afterwards? do you discard it and buy again next treatment or do you keep it somewhere? Please advise.
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I just put the cooler out back and let the ice melt. Bought new every treatment.
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re dry ice I throw it on rocks outside my house. It seems such a waster, wish it could be resused somehow or oothers doing cold caps in my area could use it, It costs me about $130 each time for 110 pounds. Was even thinking of posting it on Craigs list if anyone needed it for weekend parties.
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Snoopy73: Check for a business called AirGas; I think they are national. They supply medical gasses and dry ice. The AirGas in Richmond CA was where I got my dry ice; they were open 24 hours so I could pick it up in the middle of the night, get the caps set and be ready for an early morning infusion.
You can also ask your doctor/hospital who supplies their dry ice/medical gasses; that business is probably a good source. Many pages back on this list, somebody said that often grocery stores will carry it -- worth asking for.
I found no real use for the dry ice post-infusion; we lived in an apartment at the time, so set it outside to evaporate. About a week PFC, after the final ice had evaporated, our fridge died -- would have been great to have the coolers and some ice at that point. How ironic, eh? At least the fridge didn't die when I was trying to keep the between-fusion caps cold.
Good luck,
Susan
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