Cold Caps Users Past and Present, to Save Hair
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victory- I've used Latisse in the past and liked it, and then switched to a product called Revitalash after a friend of mine started using it and has crazy thick lashes. It's non prescription so less of a hassle. I order mine off amazon and it's a lot cheaper than Latisse. They also have a version for brows called Revitabrow. The product is very similar to Latisse. So much so that Amgen, the maker of Latsisse, filed a lawsuit against them. I'm not sure how the whole thing turned out.
Someone asked about when they got hair colored after chemo. I did highlights after 2 1/2 months. I mentioned earlier my shedding has stopped but I'm still getting that burned scalp feeling sometimes. Oh well. And now that my hair I lost is coming back, it's making the rest of my hair look overall thicker. I guess having more hair at the roots increases the overall volume. My hair looked so thin just 2 months ago and now I can't even tell I lost much hair unless I put it in a ponytail. It doesn't stay very well when I run.
One of my patients yesterday told me how pretty I was (granted she was just waking up from anesthesia) and it made my day. "If she only knew what I've been through", I thought to myself.
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KD2016, Runner, thank you for information. I actually have Revitalash at home. My friend who had cancer 6 yr ago gave me some samples as present. I just wonder if I can use it with Brian Joseph's. now?
Runner, I am sure you look pretty it is not just an anesthesia
Plus I remember you indicated in a post that you have more dates now.... 
Must be something in you.. New you, more strong!Btw, It is funny,I get many compliments to from friends, they say I look amazing. Well maybe because they used to cancer people look different? One of my male friends said my legs look great before they were too skinny......lol. I have them swollen still. But I still hate how I look, (well I shouldn't complain i am not as bad. and hair still here) but eyebrows not full and only like 5 lashes on each eye.... Plus I want back my highlights and lighter color pf hair. I am now at my original dark color with grey hair that I color with powder...
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Hi
I had 6 rounds of TCHP every 3 weeks. I used penguin cold caps for 3 and switched to the new dignicap machine for my last 3. I started treatment Feb 29 and finished June 13. I was so happy with how my hair was doing I did have shedding and a almost very thinarea by my ear but hair covered it well. Then between my 5-6 treatment I started getting very thin on top of my crown. Since then it s has continued to grow in the same area. I am now 8 weeks out but my hair is still shedding even more than during my first few treatments. Has anyone had this experience and when does it stop !!!! I had my double mastectomy after and I'm sure the anesthasia didn't help. I know I should just be greatful my surgery went well and my lymph nodes were clear but I can't stop being upset that my hair keeps coming out. I would really appreciate any tips or advice because I'm so frustrated
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Thanks BB, Willa, Jiffrig! My caps came today, so will be putting them in freezer tonight an do a trial run...
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Kechla, don't do trial. run with cold caps. It will scare you..LOL. i never did with trial with cold caps trial. Only when they were not cold. You will be fine during incision plus you should take Taylonol and some kind of anti-anxiety meds. Plus Benadryl they give you will make it easier on you.
Good luck on your first chemo!
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Hbliss - I had the same treatment as you after my mastectomy, all 6 rounds with Penguin Cold Caps though. Same experience as you. See my posts in previous pages. Very frustrating and sad that in my 7th week post chemo I'm still shedding 100-120 strands a day. Other ladies have told me that the shedding will go for 3 months. Everybody's different though. I'm very disappointed with my results.
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hi Edu
Do you use the dignicap at mt.sinai? I live in Miami Beach and used it for my last 3 treatments and penguin for first 3. How is it going for you I had TCHP.
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Kechla, we practiced capping before my first chemo, so it would give my helpers an idea what was involved. During the trial run we used the caps from my freezer, so they were not as cold and hard as from dry ice, but at least my helpers got familiar with all the straps and Velcros. During chemo it's important to switch the caps as quickly as possible and it's not the best time to be fumbling around.
Good luck and all the best to you!
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Kechla, we did same thing. Had all my helpers over and went through demo with just freezer cold caps. Everyone was ready that way. I am actually luck y enough to have my husband as the main organizer and each of my kids take turns helping him. I figure they owe me! 😉😉 four adult kids, four A/C, I don't think that's a coincidence! Worry about 4 taxol later. Today we timed it...30 second turnaround time! Be sure to cut some mole skin or something for your forehead. Ears don't bother me but that did.
May I ask you a personal question about your treatment? I am trying to get my head around a surgery decision. I think I am doing the nipple sparing all in one mastectomy. Even though I have a very small lump, I don't want to have to come back when I'm even older (I'm 67 now) and have to do more surgery. But I see that you had a bmx but are still getting lumpectomies. I was under the impression that once breast tissue was removed that was it for the breast area (for the most part). They said I will not even get mammos
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I was told there was a very small chance (1%) since they can never get every last breast cell even w a bmx. Just unlucky to be the 1%... I did have a very large hematoma after my biopsy (before my bmx). It burst out my incision. Later they found DCIS cells in the biopsy tract after doing my bmx. Only thing I can think is that maybe the hematoma caused some cells to get seeded in other areas close to the skin. Or maybe there was just another microcalc that was missed or grew later. Who knows... It was the right decision for me though. It was my best chance for no recurrence. I don't regret it. I made my choice based on the facts I had at the time. I'd probably make the same choice again. But perhaps ask for the skin flaps to be as thin as possible. And take more of the skin around the biopsy scar... I think the follow up for bmx is a little lacking. Only self exams and once a year manual exams by my gyn. Hopefully that improves
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Hi ladies can anyone recommend where to get a good wig? Do they look close to real hair? I'm watching the Wendy' show and she wears really nice wigs. We have to wear them for quite sometime. I live in a small town in California nothing close to me.
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for all you eyelash losers, don't fret and I wouldn't even mess with latisse. One day your eyelashes will just all of a sudden be back. Mine all fell out (most of them) and by the time I was really bummed about it (a few weeks) I woke up and they were back:
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Phalia - I've been using Lattise on my lashes and brows. On one eye I have all my lashes and the other, few lashes left! My eyebrows are pretty sparse and ugly, each look different. However, I see growth in both.
How about youreyebrows? Did you do anything with them?
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meow - I live in SF Bay Area and this is the place I got my wig from: www.studiosf.com. 415-641-9447
It's on the expensive side but mywig is very very natural. I got it as plan B, and at the rate I'm shedding, I may soon have to chop off whatever hair I have left, and start wearing my wig.
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My eyebrows half fell out. So they looked all gangsta and weird. Then one day I woke up and they were all back. They were back BIG TIME! Like I had to pluck right away. They also grew in thick and darker then they had been before. So weird
Right about the time I decided to buy ,and start using eyebrow pencils (which was fun for the few short days that I drew in hair) my brows had grown back in. Like I had spent 40 on brow pencils (because I had no idea which color to get so I got all colors) and then didn't have to use them😜
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Phalia, you are too funny!! Same thing happened to me, 50% of eyebrows fell out PFC and grew back overnight.
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Phalia - wouldn't it be great if we woke up one morning and the hair on our heads grew back "big time!" Thanks all for removing the stress of eyebrow loss (I'm 6.5 weeks PFC, figured I'd have that to "look forward to").
It's kind of amazing how I keep getting used to the new way I look - and adjusting to it. Mind you, I don't LIKE it, just getting used to it. My current look is a VERY wide headband, my chin-length hair (powdered liberally with Toppix) pulled back into a little clip and a hair scrunchy gently pinned to my head, like a messy bun. It's a pretty good fake out. Also, since my hair is SO dry, I've decided to go 10 days (or more) between washing. That would have GROSSED ME OUT in my pre-chemo days, but hey, it's a brand new world.
I figure it's fewer wash days (fewer traumas) before the shedding slows down and stops. (I'm praying).
Unrelated to hair: I'm over halfway through radiation - and the funny taste (sour/bitter) in my mouth that had faded post chemo seems to be resurfacing. Anyone experience that? (Not as bad, but unpleasant).
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Hi all am 11 days PFC and a bit restless hoping I the shed stops and the growth starts soon. I have to say AC really is a tough regime.
Has anyone used a good organic dry shampoo to give the hair some volume. I don't mean Toppix to cover bald patches but just something to give it volume.
I had earlier spoken to PCC rep and she told me to use Conditioner on scalp only after my hair stops shedding but she said I could use on hair. Has anyone used it on scalp earlier ?
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For those of us on Arimidex here's an article about the drug and hair loss.
http://www.healthcentral.com/breast-cancer/c/78/146334/surprising/
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Any of you know a gentle way to hide the gray roots as hair goes?
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Aimless- I got the rank taste in my mouth during radiation. I hated it more than the chemo taste changes. Mine went away within a week after my last treatment. I wonder what causes it? It would make more sense with head and neck radiation.
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Hi Rangoon,
I am new to the community as well. Did you have success using the cold caps? I will be starting chemo next month and was told about the caps by oncologist. Any feedback you can provide will be helpful.
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Runner - thanks for confirming the "radiation bad taste" experience. I told my husband I thought the radiation was kicking up a little "chemo dust." Glad to know it went away quickly. All the things I read just referred to the taste changes in head/neck radiation too. Well...7 more radiation treatments.
Wash day today, survived the trauma. There are stubbles and short wiry grays all over my head, but with the Toppix washed out - all the scalp showing is tough (as much as a clean head felt good - I sprinkled more on my head right away)
KD, that article about Arimidex was upsetting - I'm starting that in 10 days. UGH.
Good luck Moby - with everything. Many different levels of success on this site - but the bottom line is we have all kept hair - some more, some less (me) - but having sat next to a woman in the radiation waiting room Friday with a completely bald head, I felt like a success.
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Aimless - sorry about sharing the bad news. I started Arimidex Aug 1st and thankfully no SE. I'm on Herceptin and Perjeta infusion until next March also, and Perjta supposedly causes thinning hair. Although my oncologist totally disagrees with me on Both.
My wash day is tomorrow
and I'm dreading it. My leftover hair isn't even hair anymore. Strands are unbelievably thin and damaged. No idea when this extreme shedding will stop. I'm almost 8 weeks (Tues start of the 8th) PFC. I'm sure very soon I'll have no hair left 
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"chemo dust" 😜
I'm not having any taste changes but I'm only on rads#10
I'm not sure if my shedding is done but I am confident that I can stress scratch my scalp and not worry that patches of hair will fall out with every little stroke!
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My eyebrows started to grow. Its not yet back as before, but not so bad. I do use still just a tinny bit of powder to make them fuller. What a f...k is happening with eye lashes? When will that one day,as you saying, that I will wake up and they are back will be? I have just a few of them in each eye. Also swelling it's still not gone:( My legs are more or less ok in the morning but then swollen...and face back swollen. I tried accupancture a few times but not so sure it helps but cost so much and insurance doesn't cover. I did Epsom Sault a few times. Don't really see the difference. How long does it take for swelling go away? I am 5 weeks tomorrow pfc.
And night sweats...omg..I am sick and tiered of it all . hate how I look .how I feel. Yes .I pretend to be fun and cheerful and go on with my life..but when I see my friends who look good and have normal cancer free life.. I feel like I am left out and it is so not fare... I don't know maybe because I am used to be always on the top, look good , be a fun person and now I feel like a menaposal old lady. And sx..where desire go? It's not the same anymore.. Will it all ever be better for us? My friend who was huge positive support for me and the one who was a role model that cancer doesn't make your life end..now has reoccurance that she is dealing with.And articles that Tamoxifen has weight gain effect...and so on... I am just so down since yesterday.
Sorry, it's just My shitty mood today....had to vent. I Don't feel right to talk to my non cancer friends about it and I think my husband already fed up of my crying and complaining...
Well...on the good side...my hair ok..I just need to start using gel to style and color. I am thinking..how long more should I wait? Is 4 more weeks will be enough time?
I am starting 20 sessions of radiation tomorrow...😢
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Did anyone do lash extension? My friend just recommended to me. Is that something I can't do because of half of my eyelashes gone?
Anyone tried to glue eyelashes? What kind of brand should i use and how is it works?
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Phaila - that's good news about your hair. It's my wash day and I'm scared to death. I'm sure hundreds of strands will fall out. This whole cold capping and waiting game has been so stressful. I would have been thankful with what's leftover if only the shedding stopped.
I cry everyday, and have not seen my friends since Mar when I started chemo. Makes me sad when I think of them going about their cancer free lives and routine, and here I am, hiding at home b/c I look like a freak. I try not to look at the mirrors at home. I honestly can't recognize my own image. I had such high hopes with cold capping.
I'm so sorry to be so doom and gloom but no one in my family understands me. My husband is sick of me complain about my hair and looks. He thinks I should shave my head and start wearing a wig and get on with my life
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Viktoryak, HELL YES do I feel the same way!!!! I m fighting this treatment thing the and now w losing most of my hair! The night sweats are annoying dr said bc I'm not in menopause that chemo will wreck havoc on my hormones and most likely shut down ovaries which I have to remove anyway. I try to remind myself that it's temporary and it means my life. I'm usually in a shitty mood I can't do things w my kids that I use to.
One more thing I have now is hemorrhoids! Along w pain in low back bc of straining. I use to look good, had long bad ass hair that I was known for went to gym 4-5 times a week and all I do now is hide and cover my head. My husband is never home ( work)to be there for me. And just noticed a dark color in my nail. I read that connected to chemo but don't knw what can I do.
KD2016 I feel the same despair. I don't knw if Ishould hold out of shaving my hair or just pray I can hold on to what's left. I thought I had a good shot at keeping 75% but that was a long stretch. I look off almost an alien of myself. I guess were gonna have days like this. It's ok to release and vent. We are not robots and we are here for each other. By the time I'm done w everything it'll be a year. 2 more surgeries to go after this crap.
I just can't believe how long it's going to take my hair to even be close to where it was.
By the way I was told no sex during chemo maybe bc of risk of infection.
After chemo Take good vit c 1000 mg , zinc 50 mg to heal and my hair grew like crazy.
I did not lose all hair down below yet but WTH w my hair on top of my head!!! When did you ladies lose lashes and brows???
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Victoryak, Meow and KD - maybe something is in the stars. V bad day all around. So sorry you all are feeling gloomy and despairing. I'm the same way and I'm only through round 2 of 12 infusions. Everyone else seems so strong to me. I can't get my head around months more of this. I feel so weak physically and mentally.
KD: On the hair - wow, the energy and stress it takes to cold cap. It wouldn't be so bad if you could feel confident you will end up with hair but clearly that's not the case. If not, it's just another torture device. I understand completely how you feel about your friends and how you feel about yourself. When I complain about when/if I will have to wear a wig everyone says to just have fun with it. Like it's a game or a party. If it's going to be such a blast then they can do it. All of it. I'm lucky to have a handful of people who stay in touch with me often but I don't want to see anyone and I haven't even started losing my hair yet. I'm shy and can't imagine how that will be. Lots of people are not contacting me at all, though. It's disappointing and I feel like a pariah - I keep saying things like if I can just make it six months or a year I'll be myself again. My husband is also getting fed up. Although he does the capping he thinks I'm being shallow. I guess what I'm trying to say is that I really feel for you and I completely understand.
VIctoryak: I am wondering too if it will get better. In my dark hours I say no. In the lighter ones I say yes. If it helps, I have two very beautiful friends who went through chemo a number of years ago and did Tamoxifen (and are still doing either that or Arimedex). They both bounced back and look physically as great as ever. Plus they didn't have any side effects on those drugs. It is possible. Although please note I sincerely doubt it right now
Meow: I was told sex on chemo is okay with condom. Not great - but an option nonetheless?
Apologies for long note. I'm a little crazy and feeling pathetically sorry for myself - good thing no one is around to see this mess. I'm pissed at my friends and family who can't possibly understand the fear and anger and sadness of losing your body and life as it was. Honestly I think people don't spend one second really thinking about what it's like because it's too damn painful. There's a part of me that is so ashamed to have cancer.
Lastly, back to hair, because apparently I need to think about hair instead of cancer, do you think people can keep hair on TCHP? KD - I think you did that protocol? I had a second opinion pathology report come back. Today I am told that my chemo regimen needs to change from Taxol/Hercptin 12x (good on hair) to TCH or TCHP12x (likely bad on hair?). I can find a few people who seemed to do okay on TCH but not much is out there on P.
Thanks to all. Love and light to you.
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