Cold Caps Users Past and Present, to Save Hair
Comments
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I'm 10 weeks PFC and hardly have any new growth. Daily shedding is a min of 100 strands and no sign of slowing down. On wash day the shedding is a lot worse. Isn't this odd? I've been taking biotin and silica as soon as chemo ended, and last week switched to Viviscal supplements my Derm recommended, so I alternate one day of biotin and one day Viviscal. At this point don't know how much hair I'll be left with in couple of weeks.
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ladies, have anyone done laser hair remover after chemo? I started getting hair on my legs. I had laser done before. Did touch ups every like 4 mth after...then all hair were gone for chemo time and some time after. Now I see very light hair growing on my legs...all over. I am afraid chemo erased laser effects ....I wonder if ok to do laser . if it will have some effect on a body..especially I am still on Herceptin....
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Appreciate the input Zinny/ Runner and Kd.
I am 4 weeks pfc and waiting for the shedding to stop. Though there is short growth coming in, waiting for enough to cover the gaps. Hoping some sort of a short cut in the next few weeks will make this look like a style I choose.
I have to say in my case AC and then a surgery and fever were harsh on the hair, TC was much gentler.
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What are everyone's thoughts about caffeine? Alcohol? and regular deodorants (like secret,degree..etc..)
When is it OK to start using them again?
I am almost 7 weeks PFC and used Penguin cold caps
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Hi there! I used penguin cold caps too and am still shedding since last chemo on 20th July. Only have 30% of my hair left I would say although new hair growing back is great for filling gaps. I think it's best to avoid normal deodorant as has aluminum in it which is not broken down by the body. I still have caffeine and wine/beer though!
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Agree regular deodorants arnt recommended any longer. Ive gone back to tea etc.
4.5 weeks pfc and just had to have a some hair cut off, just looked ridiculous to have a few fly away long hair bits and the rest short. Feel much better.
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victoryak i colored my hair at about 8 weeks PFC and then again last week (13 weeks pfc) I went to a place called original and mineral, in NYC, the color is permanent but its ammonia and peroxide free, it was super gentle and nothing happened to my hair. The color made a HUGE difference.
I also wash my hair every other day now
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Cody mx - you don't experience any shedding, do you?
Do you wash your hair in the shower, normal, or still following the PCC protocol? Do you use hair dryer/flat iron
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Positivepower11 - I've been using Tom's deodorant for years and it's aluminum free
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cody, thank you. I just looked up this place online. How did you find it? Now I am debating if I should do my hair on my own with natural color or go to that place.... cody, I thought you were in Mexico...Did you visit NY?
I went to a party on Sat.and one of the bitches at the party told me" you need to color your hair you look pale " I normally have my hair lighter with highlites...but now my natural color with grey that I powder to cover.... She pretended she didn't know what I went trough...somehow I don't believe since her best friend who is bloober mouth knew. Anyway from one side it made me feel bad but then from the other, I am happy I have my hair!!! And just now while waiting for the bus my neighbour said: your eyelashes grew! We have our ups and downs but I guess at the end we all Will make it and just become stronger!
P.s. my husband screems at me not to read forums because when I read something sad or about someone's cancer reoccur I get anxiety and start crying..but I can't stop beeing part of this group.
Have a good day, ladies! I am in usual commuters NY traffic on the way to work.Half day for me and then going to radiation..... 6 more times left.
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KD I dont have much shedding anymore, and what I do have I attribute to the tamoxifen. I used dignicaps, not penguin, and the protocols are different I think, I've always washed my hair in the shower, now I use warmer water. I dont use a hairdryer or flatiron because I dont need it, my hair is short.
Victoryak I found O&M salon when I was researching natural hair color, I am in mexico but my surgery was in NY, so When I went back to see the surgeon I decided to try this place, loved it, the guy who did my hair is called Jason.
I am having lots of self esteem issues, and the gray hair was not helping, I figured I didn't have much to loose and I'm really glad I didn't wai
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Had my routine visit with my Onc today all went well and she doesn't want to see me until this time next year and on a better note her receptionist was going on about how long my hair was she couldn't get over it knowing that I'm only a year out from my last chemo I reminded her that I used the caps she was excited about it
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yesterday was 8 weeks pfc and I colored hair myself with natural color. Well it is came out darker then on the box and it is not the color I used to have ( much lighter with highlites) but for now it will do... some grey hair didn't take the color. I hope I will not shed a lot after this. I want to wait another 4 weeks before going to professional salon and color to my old color and do highlites. Maybe I will try then salon CodyMX recommended.
Here the color I used and the result..
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Hi Everyone I have lurked on the board for awhile when I was gathering information on cold capping. I made a decision to cold cap about a week before I had my first treatment of TC (of which I will have four). I am on day 20 and tomorrow will be my next chemo day. About day 15 I started having a few strands of shedding here and there. Yesterday it was awful and so much came out. I don't have any bald spots yet but it is a lot thinner. I don't know anyone persoanally to talk to about this. How long did this major shedding happen? What should I prepare myself for? Should I give up
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I've had some shedding too but only around my ears and sideburns area. I'm also on day 20 of TC. Also a little bit at the nape. Are you shedding all over? What caps did you use
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I am using penguin cold caps. Shedding all over no specific spot. It seems like a lot to me but I did start with thicker hair. If not much more came out or just routine shedding it would be ok but I am worried it is going to like this heavy amount and I won't have any left. Do you have your next treatment tomorrow?
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I am going thru terrible shedding also this past 10 days. I gave my 4th and last A/C today, then taxol. You do not say what chemo you are doing but if A/C, thats a bear, I have now found out. TC much easier on hair. Mine has finally slowed down. I am thinking because I have (had) such thick hair, it did not get cold enough. As long as you are shedding evenly I think you are good. I am doing the PCC also
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I tried Penguin Cold Caps once. Ended up with second degree frostbite even though I followed instructions. Urge caution when using especially if you do not have thick hai
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Sorry it is TC treatment. I think it is probably in managing what my expectations were too. I didn't think I would get this much shedding
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CR77 - Yes I have my next treatment tomorrow as long as my labs come back ok today. I've been fighting a low WBC the 1st 2 weeks. Hopefully it is back up. I'll also be foregoing the neulasta since it didn't work for me. Not sure yet what they are using in its place. Probably Neupogen. Good luck tomorrow!
My hair is pretty thin to start with and I think I got a little frostbite (my scalp on top peeled), but no hair loss. PCC said I could either lay a layer of gauze on the top or drop my temp down a degree or 2 (to -28- -29 degrees). My husband thinks he may have put a cap or too on too cold so we may just split the difference and go with -29 to -30 (and no colder). I was worried because we had 1 cap that was delayed about 10 minutes due to an allergic reaction that needed taken care of. But the hair on most of my head still feels pretty firmly in place. Fingers crossed...
I have been washing about every 2 days with Pur Ador organic shampoo. I also use infusium 21 detangler and just try to avoid getting it on my scalp. I sleep on a satin pillowcase most nights. Air dry hair and no styling apart from combing with a wide tooth comb.
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CR77 - I agree with others. I think if you just have diffuse shedding right now you might be okay. I'm at day 34. .I've had some loss at sideburns and nape - like Kechla. It's hard to get a tight fit around ears. I'm doing Taxol, Carboplatin, Herceptin and Perjeta. I'm on a 12x program with 7 more rounds to go (sick just thinking of it) . I don't think Ive lost too much hair yet BUT the hair I have is getting straighter, finer and doesn't have any body or shine so it looks like a lot less. It just lies there looking pathetic. I've had a pretty high fever recently and I notice more hair loss than prior- don't know if that's common or not. Anyway, all this to say there is something to be said for managing expectations. As an aside, I wash 2x per week - giovanni tea tree shampoo. No blowdry or styling or root color, just wide tooth comb. So pretty.
Viktoryak: Sorry about the comments from your "friend" on your hair. Some people say the stupidest things. Your hair is lovely. Besides, you are crazy strong and beautiful so don't waste one more second of your precious life on comments like hers.
KD- I'm happy to hear you're doing well after your surgery. I know you are still doing Perjeta/Herceptin and you're not capping. I think your MO said not to worry about Perjeta in terms of hair. Mine says the same thing. But I'm confused because all the literature on it says it causes hair loss. I bring this up only because I know you are worrying so much about continual shedding, and I'm worrying about it because I feel conflicted on how to handle the Perjeta. I'm going to talk to my MO about this again tomorrow. I hope your upcoming haircut goes well and you feel beautiful again.
Cody- I'm glad you got your hair colored and are feeling better. I can so relate to the self esteem issues.. sorry. I hope things get easier for you.
Aimless - thank you for letting us know you're feeling good again - like yourself? It gives me some hope. I feel so incredibly awful. Everyone initially said chemo is not so bad and many people work through it. I cannot imagine.
Love and best wishes to everyone here. Take good care.
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Willa - thank you. I'm going to ask my onco to just have Herceptin for the remainder of the year and forgo Perjeta. He probably won't like it but initially I was supposed to have Herceptin only since we thought insurance won't cover Perjeta after chemo was finished. I'm on Arimidex and it causes hair thinning as well.
This week the shedding has been light (start of the 11th week PFC). My hair is so lifeless and damaged and thin that I have no choice but chop it all off this Sat. Hopefully I can get a decent short cut and move on with my life. I have prepared myself for wearing my wig and scarves worst case scenario. I have to say I'm so baffled by such vast differences in capping results, even among the same regiments and cooling systems used.
Good luck with rest of your treatment. I was very sick throughout chemo.
Hugs.
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KD - thank you.
Are you still feeling okay on Arimidex? I think you said that was the case but I can't recall. I'm really sorry you were so sick during chemo. Are you getting back to feeling normal, aside of course from hair sadness?
I'm not sure I will remember what normal is. I'm making myself walk (shuffle) at least 30 minutes per day with the dog no matter what - which is just nothing compared to usual exercise. Went last night in my pajamas and my sassy convict hair . The bar is amazingly low. Fortunately it is getting dark earlier these days
xo
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JCS: Your info is super helpful. Thank you!!
Hope you're doing well!
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JCS - thank you so much. I had Perjeta as part of my chemo regiment and I included it in the cold capping time. So far I've had 3 rounds of Herceptin and Perjeta and have to continue for a year. I understand that having the dual effect of these antibodies is very good for me, so I'm really indecisive right now, with the conflicting info on Perjeta. I should listen to my onco, and you.
Willa - I haven't experienced any SE with Arimidex so far. Other than hair, I'm feeling better, can't say quite back to normal but much better. Some days I'm very low on energy. Eyebrows and lashes are coming in and I've put on a few pounds, my face has some color now. I can eat like before also. Hopefully soon I'll be able to get back to working out, have to check with the surgeon.
You'll get there. You'll see. It's a tough road but somehow just like the rest of the ladies you get through it. Just take care of yourself in anyway you can.
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I thought I'd share how I keep my forehead and ears warm during capping!
I created a 3 layer forehead cover from rolled thick moleskin. Cut to size while paper is still on avoiding the hairline. Then add new layers to your face as you go. I cut out the 2nd layer for eyebrows. My forehead is rather large so I needed 2 layers to cover it all. Then 2 small strips down the temple avoiding sideburns. After my first cap, I quickly realized I needed 3 layers. I just left some paper on the bottom so as not to tear out my eyebrows.
Then, for ears I used small no show footie socks. I used the heal as the toe was way to big. Then I put a stitch in the loose end. I used moleskin to firmly hold it to my face. (Otherwise it will fall of when you take the first cap off.)
Voila! Very lovely! Hope this helps someone!
You can see here that I did lose a little sideburns and hair behind my ear from my first capping. I think using the full footie covered too much... Hoping the revised footie does better this time.
I had a fail trying to make an ear cover from moleskin. Too bulky. I think it would cover hair behind my ears.
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hi! I also had 4 rounds of TC and used penguin cold caps. The shedding in my case is still going on and it has been 8 weeks since my last chemo session. The shedding gets you down and hair thins a lot. I have a lot less hair than I had to start with but the important thing is I did not go bald! Had bald patches around my ears but could easily cover them up and new hair is growing back fast there now. Make sure you follow their instructions re washing hair with cold water, gentle shampoo etc.
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Leonarsu, I lost a lot of hair after second infusion. When I took off last cap for the day most of my hair on top came off with it like it broke/ froze off. No scalp burns that I can tell but I'm concerned til I see hair growing. Called they said never heard of it and now I hve to wear wig cap not to get frost bit. My hair is fine but at the time had a lot of it. Very sad about it
Willa thanks for your thoughts few days ago. It took me 14 days to shake #3. I don't want # 4 the last. It did a number on my psyche'. It want it over I'm doing it all on my own.
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Just curious did anyone on taxotere not lose their eyebrows or lashes? Other ladies when about did you start to lose yours? I'm getting new hair growth back but it's mostly gray! Even some half brown and half gray. So it still looks like I don't hve regrowth so annoyed. Bf I had little gray I never had to color my hair for it. Is anyone else growing mostly gray? Could chemo turn hair gray
KD hope your healing well! Hugs
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