Cold Caps Users Past and Present, to Save Hair
Comments
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Hopfull: XO. Wishing you a lot of love and support. Gosh you have been through a lot.
Pamela: Everyone is different with loss/shedding but I think most people have serious meltdowns on wash day. Hang in there! Good luck on Wed.
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Hopfull, so very sorry what your going thru. Be easy on yourself give yourself time to grieve for your mom and for your former life before all this BC crap happened. My mom had BC 3 years ago (for her second time in 30 yrs) and now it's my turn. I can only relate just aliitle. We are here for you. Hugs.
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Thank you all who are posting that you are doing cold caps. It really helps to read all the comments. I feel less alone just being here. I posted that I thought it was brutal, but I'm going to keep going. I found that I have frostbite on one of my ears. I will do a much better job of protecting my ears next chemo. I think the moleskin just didn't cover the very top of my ear. I tried to fix it, but with changing every 25 minutes, it was a losing battle, which I should have taken more caution with.
So at least I know why 5 hours after chemo I'm still cold capping, so it is just the bad stuff that is really hard on follicles.
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Hopeful2, how do you avoid brushing or combing your hair? I have shoulder length hair and it will just get knotted. Are people not brushing after 2nd chemo?
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hi hangin in. , I do brush. I only brush once a day with a wide tooth comb (about 1/2inch apart). But I have short chin length hair abs it's curly bow that I cannot straighten it anymore my natural hair is Curly so combing once is enough for me.
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Hangingin- I brush once a day with a wide tooth comb like Hopfull2. But my hair hasn't done the BS yet. Still, I thought I'd get started on baby the hair. So, I hold the top portion of my hair and use the comb to comb through and not pull the roots. I'm not sure if you did hair as a little girl, but it's a similar technique to getting knots out of hair. Then I run the comb through the rest of the hair. As soon as I get no tangles, I move on. No brushing a hundred times before bed like they used to tell us.
Going in for chemo no. 2 today. Last time, I cold capped about an hour and a half before infusion and then about 4.5 hours after infusion at home. It makes for a long day. But, as long as depression hasn't set in, my piss and vinegar will not let me go quietly into that goodnight. I will rail and wail and fight the dying of the... hair. My glorious beautiful hair. I figure if I'm still pissed enough to try and not let cancer take EVERY-goddamn-THING then I'm alright. I'll be alright. I think being in control of the things I can control, when there are so many things I can't control, help my mind.
It's one of the reasons why I opted for immediate reconstruction. I read and read the difference in psychological impact of women who opted for immediate vs. delayed and found that the women who immediately reconstructed had a better mental outcome. My mind is the one thing through this I can control. So... I am going to make every decision align with keeping my mind happy- or as happy as it can be with cancer!- so that when this is all said and done, I walk away with a healthy brain.
Anyway, commiserate with me today as I cold cap my head to preserve my one vanity.
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So those cappers that are a couple weeks ahead of me, my 2nd Tc is tomorrow, is it just after washings that the handful of hairs come out? Is there one big shed after each chemo? Or is it constant from just combing through. I comb twice a day with a big tooth comb, once in the morning and once in the evening to prevent knots while I sleep.
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hi Pamela. Well I had a bigger shed on wash day after chemo. But today I combed it out this morning and had shed but nothing alarming. But my sweaters always have bunch of hair on them. Good luck tomm.
Javamama, good luck on your chemo today too. My prayers with all of you and that our hair stays in tact.
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Yesterday was my first day of chemo and I'm using the Dignicap. it was a really long day-nine hours at the infusion center because of fitting the cap, precooling, slow first time drips and post cooling. As has been mentioned here, the Dignicap only comes in a few sizes (more are in the works, including 3D printed) so fitting is key. My fitter and I worked well together and she was creative, using pads on the inner cap and finally tape over the whole outer cap. I looked like a crazed mummy. My ears did get mostly covered but i was able to get a couple of small earbuds under the cap and my glasses frames in between the two caps. And I was able to hear the chemo nurse when she got up close, using some judicious lip-reading. I was able to ignore all the other chatter during a very busy morning at the facility. So I found the apparatus to be quite heavy but I didn't recline much and I didn't have a neck pillow, which I will get before next time. And I was cold. Heated blankets weren't enough. I'm actually pretty cold tolerant, so that surprised me. Placed an order Amazon for two electric throws before I left the facility! And I will wear a wool top next time and fingerless mitts. Today i feel pretty good, especially after a 3.5 mile walk to clear the cobwebs and shake off the general funky feeling. i hope to run tomorrow. My hair sheds a lot, naturally, so I expect that. i just fear permanent hair loss. I have long. wavy. white hair and think that even if I could find a wig like that, i couldn't afford it. If this doesn't work, I'll be looking into something obvious, like a turquoise wig or scalp tattooing.
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bareclaws. thank you for the update on dignicaps
everyone, thanks for all your updates too! I am starting chemo on Dec 16th and I hired a professional capper for the process. The information is so overwhelming. I am just trying to keep up. Please keep all the info coming
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hi bareclaws, there are really no good gray or salt and pepper wigs out there! i had long salt and pepper hair, learned about caps too late for first three infusions. i had my hair cut close to my scalp and mailed it off to have a partial wig made out of it. i am having 'sandwhich therapy'. three infusions, then radiation and then 3 more infusions. (uterine cancer) my hair is two inches already from the break in chemo and am doing cold caps this go-round of chemo. day 22 and hair thinned a lot but still looks normal. i hated losing 3 years of growing my hair out after i stoppedcoloring it!it was just how i wanted it and then boom. hope you have great success with your cold capping!
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Going to post two pics here. One was my hair before chemo. As I have written, i found out about cold caps to late 😢for the first three carbo/taxol I started in early June. I had some months to grow back hair and the second pic is 23 days after carbo/taxol. (treatment is chemo-radiation-chemo for uterine cancer) Considerably thinned but look how curly! Next chemo this Friday and then one ore and i am done! I just might not go bald for the second time! I miss my long hair though!
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Janetsam, your short hair looks very nice and chic. You look younger also. I did cold cap and at the end lost about 70% of my hair. Had to get a very short cut. I'm 5 1/2 months post chemo and my hair is growing in slowly.
Wishing you best ofluck and health.
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Thank you KD. This is aout 22 weeks of growth but the shiny bald head was gone in about 8 weeks post chemo and could go without a scarf. Most everyone loves my short hair. When it was even shorter it looked kind of edgy and kind of cool ( well cool for 65 anyway) Good luck to you too!
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janetsam, wow, your hair grows so fast. Incredible. My hair used to grow like crazy before cancer, but now it seems it's taking forever. Could be b/c of Herceptin infusions I'm still on, and/or Arimidex I'm taking. In any case I'm hoping someday I feel and look like my old self. It's a very emotional road we're on. I still cry out of the blue, sometimes as I'm sitting at my desk at work or driving, etc. Take good care.
btw - 65 is not old by any means.
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Janetsam you look great! You can wear your hair both ways too I like it. Speaking of hair growth I'm 11 wks PFC and the top of head has hair but growing sooo much slower than other places. I can still see some scalp. Any one else has this situation?its really upsetting !
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Meow, i have been taking biotin every day since june. i also used minoxidal 5 percent twice daily since june but stopped because my face was getting so hairy...my forehead was creeping down into my face! i got the minoxidal from walmart and was about 30.00 a month. i will probably use it again. i read it is safe to use during treatment from a number of sources. not sure if that sped up growth or not but worth a try. oh, while in radiation, seemed like my hair growth slowed down
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KD sorry you get hit with sadness 😕. a few months ago i was having melt-downs and when i looked in the mirror i saw that my face was taking on a permanent sad and worried look. I started prozac and i think it made a big difference. i also take adderall for ADHD which helps too. a psychiatrist at my hospital told me they frequently prescribe an antidepressant and a stimulant for their cancer patients. i believe in 'better living through chemistry' and if they are going to give us the chemo then why not something to feel better.
blood work tomorrow and if my platelets are up i can get chemo on friday. i may end up getting neulesta though. i just want to get done with all this!
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Thank you. I take an Ativan every night, and sometimes twice a day.
Good luck tomorrow. I had a neulastashot every time after chemo. Half dose.
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KD, sorry for what your going through, I'm trying to see a therapist I have anxiety a lot now and up at night with fear. I may have to do more treatment of some sort. I'm stuck with no where to go and do t know what to do. Who prescribed your Ativan ?
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KD2016-- can I ask what regimen you were on and what cold cap you used? I'm surprised you lost 70% of your hair.
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Thank you Meow.
My primary prescribed Ativan when I was first diagnosed, and since then my onco keeps refilling it. They used to give it to me during chemo for nausea as well.
The anxiety is tough, but I try to talk to myself To calm down. With all the dr appointments and work I don't have time for a therapist now.
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Love the before and afters! You look great. Here's my before.
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Bareclaws, beautiful glowing hair and it looks so thick! Hoping you get to keep most of it! I was scheduled for chemo this past Monday but platelets were down. Hope Friday is a go. My husband and I didn't do a great job capping, am hoping to doing a better job on Friday and not lose so much.
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Hopfull--was that your first and only big shed?
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Pamela, I was on Taxotere, Carboplatin, Herceptin and Perjeta. 6 rounds. I used penguin cold caps. Did really well through the 5th cycle. The shedding started with the sixth round and majority was post chemo. Went on forever. The leftover hair looked like cotton candy. Was a horrifying experience. So my dermatologist suggested I should just cut it as short as possible and let it grow back which I did. I'm 5 1/2 months post chemo and it looks decent now. Still overall at probably 40-45% of my normal volume.
Penguin should set the expectation that not everyone is going to keep their hair and also apparently post chemo shedding is very common but not talked about.
Having said that, greatful I didn't go bald. Alternative was unimaginable for me specifically since I was trying hard not to tell everyone about my BC and wanted to keep it private.
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hi ladies. Pamela , my first big shed was on wash day after my second treatment which was 1week ago today (2nd treatment). I've had shed since but nothing too scary. Too think wash day is coming up. Ugghh. How's your hair doing. ?
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Janetsam, love the look. Your hair looks wonderful. Women would pay to have a perm like that.
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hanging in there, thanks! the shedding has stopped for now and my hair is quite a bit thinner which is actually a good thing cause the really big hair isn't a look i am going for. chemo was put off from monday till tomorrow but now platelets still too low so chemo is put off until NEXT friday. platelets slowed down rads for me too. just want to be done
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Hopfull2--I had my big shed day after washing this past Monday, day 19. I had my 2nd treatment yesterday so can't wash it until Saturday. I definitely have shedding this week, I see it on my sweaters and hair in my twice a day combing, but nothing like the wash. I bagged it and I'd say 10% of my hair? I'm a bit nervous to wash in a couple days. Of course my oncologist couldn't tell me how many shed I'd get because I'm her 1st patient to use cold caps and I should be bald by now. I figure if this happens all 4 rounds I would still have 60% of my hair. I really don't know what to expect. The success photos on the other thread are encouraging. I think we have a 'milder' regimen so hopefully that will be to our advantage.
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