Cold Caps Users Past and Present, to Save Hair

viktoryak

Glm, I send you in private about my Dr. Did you see it?

Kimmber55

I started my first round on the 27th of June Cytoxan and Taxotere- doing 4 rounds total.

I used the penguin cold caps and I am 18 days with thinning as expected but no surprises yet.

I did nto find the cold caps to be difficult or painful.

Stay tuned.........for update.

Glm17

viktoryak did you get my reply?

viktoryak

Glm, no!

Glm17

I'll try again!

Glm17

I just sent it again.

bab524

I'm at Day 8 of round 2 and my hair continues to shed, especially at my crown and on the sides. I was pretty bummed about it (there were tears), mostly because I was so self conscious about going out in public and worried about what I would do when I start medical school this fall on days I can't wear a hat. I hated feeling that self conscious. Well, I finally tried Toppik and am SO relieved! This stuff works! I almost feel like myself again and am totally comfortable going without a hat. So happy to be feeling back to normal (as normal as I can get right now) hair and SE wise!

Glm17

that looks great!

revnet

I had my 2nd infusion yesterday and also started shedding. My hair is very short and very fine as it is. I was feeling pretty good having not had any shedding up until yesterday and now it's just kind of falling out. I don't notice how much is coming out, but I did notice that my hair line is receding and my hair seems a bit thinner all around in general. At this point, what can I expect? I'm on TC regiment. Is it just going to be hair falling out consistently now? Will it grow back during my treatment too or am I just hoping I don't lose it all before the end of treatment?

Runner70

what you described is pretty typical for cold capping with TC. The first shed is the worst. It will last around 5 days and should ease up. Don't let it make you crazy. If you hadn't cold capped, you would be bald by now. I had pretty consistent heavy shedding every 21 days then light shedding in between. I turned out ok. Good luck!

revnet

Thanks for your response Runner. I appreciate it!

Runner70

oh it's no problem! There are a lot of great, supportive people on here. And we make jokes about our hair and other stuff chemo does. Nobody else in my life understands but these ladies do. The real kicker is when your eyelashes wait until you're done with chemo before they decide to fall out.

phaila

speaking of, I think mine are falling out!!! I don't wear makeup so I never pay attention to them but today I was like "hold on a second..something looks a bit more off than usual!"

amyabs

So this one round of AC has completely kicked my hair in the butt. I made it through the three rounds of TC with pretty minimal shedding but this last week or so alone I have lost more than I did through all the other treatments combined. It is still all over shedding so I am hopeful that I won't end up bald, but man it just sucks. I had my first large clump come out after washing yesterday, about a softball size ball of hair, and it completely freaked me out. On the flip side, the gals at work all said cute cut this morning thinking I had it trimmed up to lay better - ummm, nope, just pulled handfuls of it out post washing.

I will be 4 weeks pfc tomorrow and I just hope the shedding stops soon ---- AC ladies, how long did it take for the shedding to slow down for you?

That said, I still have pretty decent coverage. I know it looks like a lot of hair in some of these pics but it is soooooo much thinner than I am used to and you can see my scalp peaking through in some areas. My hair curls up naturally in the humid weather right now so that helps as well. My part has definitely gotten wider as well but I can still more or less cover that up - I think that is where a lot of that softball worth of hair came from. Hoping that sometime this week it starts to taper off.

Below are some pics after the Saturday wash. Forgive the background and the puffy face, lol. Eyebrows are largely filled in with a wax and powder kit and I am just starting to lose my eyelashes.

Here's the back, fortunately I have volume there so it helps when it fluffs up:

Left side, again the volume helps but you can see by my ear that my sideburns and a lot of the hair around it is gone, also you can see the bottom at the back where it has thinned a lot.

Right side, similar to left but you can also see where my scalp peaks through in a few areas on the side of my head:

And the top, my hubby stood on top of the toilet lid to take this one, lol, but you can see that I have to move my hair around to cover the part up:

Overall still decent and if it slows down or stops on the shedding soon, I think I will be able to continue without having to use a wig or scarf. I still think that is yet to be seen. I am concerned that it will just keep shedding and shedding until it is all gone

BlackRockPB

Amyabs - you look great - your hair is beautiful!! I had four AC's in March and April. Those really are tough on our hair. I was warned by PCC that there would be a greater percentage of hair loss with those drugs and I did lose more than half of my hair. The piles of hair I was losing everyday was shocking and scary and I didn't think I'd have any left either. Everyone is different, but I stopped shedding heavily in June and at that point I noticed new hair was growing in. I rolled right into weekly Taxols after AC and, knock wood, even through the Taxol treatments (I've completed 10 of 12) my shedding is still at a minimum and baby hairs continue to grow. My hair shed from all over too and it's VERY thin on top. No amount of Trump comb-overs will work to cover the top so I'm using headbands and a little Toppik. Hang in there - hopefully you'll start seeing new hair growth very soon!

zinny

Amyabs, you look terrific!

ecehamm

how do you know you were in the 6% that would have permanent hair loss. Looking at my family hair history I feel like I want get mine back either. How and where do I get cold caps.

Aimless

Ecehamm: - I used the Rapunzel website (http://rapunzelproject.org) to find the different options. I am an Arctic Cold Cap user. Many on this site use Penguin Cold Caps.

Hello Ladies - I'm two weeks pfc (4/TC)(THANK GOODNESS) and although I'm still shedding, it's not been scary shedding. I'm getting used to the new normal - frizzy thin hair - that's hairband/scarf/toppix dependent. I tried foam rollers today to smooth out my frizz a bit on the bottoms of my hair. (used the cool setting on my dryer to dry it - still haven't taken the curlers out, we shall see.) I never thought I'd be happy to see my upper lip hair grow - but it started to grow back. Somehow the idea of waxing ANY hair OFF right now, seems counterintuitive, but bad hair and a mustache? I don't think so. I'm hoping that upper lip hair is a good sign - and waiting for leg hair to sprout again. My husband has to be my eyes for the top of my head - I can't tell what the heck is going on there.

So - I bought the FAST shampoo - is anyone using it? I'm scared to use anything other than the Whole Foods natural shampoo I've been using.

Any other "now that we're done chemo" suggestions from any of you wise ladies (to whom I'm so grateful for the camaraderie, the support, the laughs and the perspective? Exhale about shedding in ..... 4? 6? 8? weeks? And exhale about cancer....never I guess.

JCS28

Aimless -- you're right I can't really exhale about cancer, but I will say that life is MUCH better now and nearly back to normal. I'm about 2.5 months past chemo. I felt pretty normal after about 1 month and I can do everything I need to do in my life now. I can keep up with my job, my two kids, and any other busy life stuff. I am still on Herceptin and have my implant surgery on August 12, but I feel like myself again. And I think having my hair REALLY helped b/c so few people know and I looked like myself quickly after it was over. My eyelashes and eyebrows are much better now. I look like myself again!

phaila

I'm 8 weeks past and my eyelashes are just now falling out... Hair is still shedding like a mofo

Runner70

eceham- I do not think the statistics of permanent hair loss are quite that high. I've read from medical literature (not chatboards) that it's 1-2% if that makes you feel any better. And I think there are other factors that increase the chances but I can't recall them right now.

Doing cold capping is a huge commitment and it's exhausting on chemo day, and it's pretty stressful watching hair fall out everyday for 4 months and not knowing if any will be left despite doing everything right. I'm not trying to talk you out of it. There's just a lot of stuff the cold cap companies don't tell you. It isn't all unicorns and rainbows. I'm completely glad I did it, despite all my complaining about bald spots.

But if you decide to do it, this is a great place to be for support and reassurance

amyabs

phaila - I think that is going to be me too. I am having more shedding now at 4 weeks pfc than I ever did during chemo and just now having any eyebrow/eyelash loss. Stupidly I thought by a month out things would be stabilizing a bit in terms of the hair - kind of sucks.

mdg

I don't agree that the rates for permanent hair loss from Taxotere are low. I personally know 3 good friends that have horribly thin hair and male pattern baldness from taxotere. Their hair never came back normal and it's been 5 years for all of them. Just wanted to share....not trying to scare anyone, but I think the information is not accurate.

meg2016

amyabs - right there with you. Just had second infusion of AC today, but first round shedding was constant and a LOT. I dont have pictures but I think we have a similar amount and overall thinning. Are you doing dose dense? I don't have any words of wisdom, just wanted to let you know I commiserate. I have slowed down washing mibe to even less than every week because it is worse,when i wash. Here's hoping we still have hair left when we are done!

amyabs

meg2016 - I had to have one dose dense round of AC after three dose dense rounds of TC. After TC #3 I had an allergic reaction with a swollen face, lips and ears and epi did not help to stop the reaction. My MO thought it was either the Taxotere or the Neulasta so we changed to AC and neupagen for the last round and thank goodness I had no swelling issues. I am 4 weeks and 1 day pfc (but who's counting, lol) and still shedding like crazy. Hoping this settles down soon or I will lose all of my hair post chemo!! My hair definitely seemed to tolerate the TC better but who knows, maybe I was destined for this big shed all along? I agree, I lost a ton on my last wash, I wash weekly but may stretch that a bit too if I keep losing as much each time.

Kimmber55

I am completed 2 rounds of TC every 3 weeks for 4 rounds 24 days out

Just finished my second round using penguin cold caps

I wanted to share my hair loss as most photos I see are after chemo and look great here is my reality I still have hair but it is uneven and extremely fragile for many shaving and a wig or scarf maybe more manageable - this is alot of additional work

And definitely a personal choice as there are some who lose no hair and many who may still lose all of their hair

Like so much of our treatment we have to adapt.

I believe I have lost 50 percent of my hair it started about 14 days after my first round of chemo and has been shedding daily some days strands and others huge climps

It seems to be more difficult to cover for outings because you are not advised to wear a clip or pony tail anything that will put stress on your hair so it is a greasy mess for the time being but I am greatful for the gradual loss it is for me personally a way of grieving and moving on to a positive acceptance and new life.

If anyone has questions about the penguin caps let me know I can share the pictures of my hair my picture is the day of my first chemo. It is not the same now but the hair is still here just looks like my granddaughter trimmed it

Haha

Stay strong always and share it helps so much to know we are not alone

Aimless

Kimmber...completely agree with the you about the gradual loss, and how it helps manage this (loss of hair, loss of our former health status, and our sense of ourselves). I'm starting (16 days PFC) to accept the possibility that my hair may not survive this process, as it is so thin and fragile right now. We're heading on vacation now and I have a bag of hats, scarves, wig topper, hat with hair attached, etc in tow...as I said to my husband, so many hair accessories for so little h

Amyabs, your hair looks great - and that natural wave of yours is great for camoflouging bald spots. Good luck to you....to us all.

So grateful for this forum.

revnet

What is the PFC acronym?

PatinMN

revnet - PFC = post final chemo.

SusanBP

Marathon capping session yesterday. First day of A/C and my rep (and another wonderful woman here) told me that capping for A/C is 5 hours after infusion. Since it was my first a/c, the infusion was slow, there was a time delay. I ended up capping for almost 8.5 hours total. We went through 18 caps. Lord!

Here's hoping! I did great keeping my hair with taxol/herceptin/perjeta (12 infusions).