Life After Cold Caps: a place for ex-cold-cappers to share

hope49

Rain, I think you are at the finish line…10 hairs is not much. I cleaned out my hairbrush yesterday from the past week or so and had enough to build a small mouse, so I think you are doing great. I'd say when you hit the 5 month mark if shedding is still that low, you can celebrate your success with a proper warm washing and styling!

Regarding deodorant, I tried several before I found one that worked, it's called MooGoo and I have to order it from Australia but it's a roll on and lasts forever. I've never been much of a sweater, so I can only speak to what worked for me. Thanks, Daniela for the natural alternative - I'll have to try that.

RainDew

Thanks ladies!

I am ready to declare victory I think :-)

It's amazing - I feel better and better every day, I have a whole head of hair...sometimes it feels like this whole thing never happened. Then I roll over on a coconut shell, I mean tissue expander. :-)

Exchange surgery scheduled for next month! Yay! Fingers crossed that is the end of this crappy chapter.

I am so grateful for the caps (and my MO who suggested them!), maybe even more so now that I am all done and not facing a year of growing my hair back out.

Thank you ladies for seeing me through the journey

jc254

Raindew, I feel the same way about cold caps- not having to wait for my hair to grow back was worth all the aggravation. It allows you to get back to "normal" that much more quickly. Waiting months/years for hair to grow back must be excruciating. That's why I always try to suggest that women think long term when considering cold caps.

I've been finished chemo for about 1 1/2 years now and I still really appreciate being able to wash my hair with hot water.in the shower. Life's little luxuries...

PatinMN

Hopeful - sounds like you are on the cutting edge. Great results so far!

Hortense

Leslienva - Have you tried Nioxin shampoo? It was what got rid of my flakes. Allow it to soak on your head about ten minutes to soften the cradle cap like flakes, then gently massage your scalp before rinsing. It may take a few shampoos a couple of days apart to get all of them out.

Leslienva

Hortense, I'm only three weeks PFC. can I switch shampoos now?

Raindew, I'm with you on these darn tissue expanders. I'll probably have my exchange surgery in March or April. I'll be interested to know how your surgery goes. I hear it's much easier than the mastectomy surgery

RainDew

jc254 - exactly! Obviously capping wasn't super fun, but it helped me keep my sanity during chemo (saw myself in the mirror not 'cancer patient') and feels much easier to find new normal without staring in the mirror waiting for hair to grow...did that with eyelashes which was enough :-)

Leslienva - will let you know. I have 4 wks to go..:counting down!

DaniellaD

I have a box of Herbatint, dark blonde that I'm not going to use. Ammonia, paraben, peroxide, ppd free. Dark blonde comes out dark so more for medium brown hair. I heard it works great but I'm just going to wait until I can color with INOA at the salon. Here's picture of the box. Inbox me and i'll send it -my gift to whomever wants it.

Hortense

Leslienva - I used Nioxin about three weeks PFC. I couldn't stand my hair and scalp any longer. Treat everything the same way you have been - cool to cold water, everything done very gently - and continue to follow protocol. The only difference is you just allow the Nioxin to sit on your scalp about ten minutes after patting it on and sudsing it up, so that it can do its work softening the scalp and the cradle caps bits and also dissolve the build up. I think natural body heat during the ten minute wait helps it along. It will tingle. That's normal. It's also pleasantly lightly minty scented.

After the soaking period, I gently and gingerly would work on the areas that had the cradle cap with my fingertips to help loosen it and that made a difference. I actually found the hard flakes were easy to break up when they were softened, without harming my hair. It took two soaks with shampoos to get it all off. After that I shampooed normally, in that I did not need a soak period any more. My hair looked much thicker and fuller right away.

Jalsgal

I'm almost 3 weeks past my last chemo treatment and was looking for advice on how long I have to baby my hair? When can I get a hair cut? How about getting it colored? Washing with warm water? Blow drying???

Any advice would be greatly appreciated!!!

Thanks;)

Leslienva

Jalsgal, we must've been on the same chemo schedule. I heard to wait a month from your last chemo for a hair cutand to only have an inch trimmed off. I think we're supposed to wait several months for coloring and for going back to our normal hair washing routine, but I'll let the other ladies comment on that.

Leslienva

Hortense, which Nioxin did you get

HockeyCat

Leslie, I got #4, same as Hortense.

I'm at PFC 12 weeks. Still shedding but less than before. It doesn't bother me much as new hair growth filling in thin spots around my ears and neck. Can't wait to color to cover gray though but I'll wait until shedding completely stops. I've been washing my hair twice a week, using lukewarm water. I've been using a straight iron for my bang even during chemo, away from scalp, only after I wash my hair. I didn't lose much there.

Leslienva

Thanks, Reiko! I'll look for it. I think my bangs are starting to shed. I may need to move my part. I've noticed new hair coming in but it's just stubble. It feels pretty weird

LaMask

The most effective deodorant that I have ever used is Ozone Layer Deodorant, which happens to be all natural too. I can't promise whether it is completely safe for use during therapy, but it's just shea butter and beeswax infused with oxygen, so I assume it is... The oxygen eliminates odor by oxidizing the bacteria that cause it in the first place. It lasts longer than 6 months with me and they guarantee your satisfaction. Check it out at http://OzoneDeodorant.com

Leslienva

Has anyone attempted to write off the cold caps as a medical expense on their taxes?

Warrior_Woman

Nioxin #4 here and it made a noticeable difference.

Jalsgal & Virginia - I followed closely to the PCC recommended time frames. I waited 6 mos. to color and used the organic coloring. I kept with the organic shampoo until I was certain my hair follicles were stable. The only thing I did against the rules was to trim it more than what was advised. I did not have a problem. With that said, I have seen lots of women make changes much sooner. I really think we can tell intuitively what our hair can handle. For me, when I was in doubt, I erred on the side of caution.

I shed big time during chemo (days 17 - 30 were pure hell) but very little after.

And, at 10 mos. PFC here is my hair!

Had I not used the caps my hair would be 4.5 inches long and I'd be freaking out trying to find a that works for me.

Hopeful82014

It's gorgeous, WW, truly gorgeous.

Now, if the FDA would approve the Dignacap system....

summer70

Wow, wow, wow,,,Warrior Woman, your hair looks amazing! 10mnths PFC, what a testament to you & the caps! Hope you are now able to put this behind you & truly & fully enjoy the rest of your life. 2014 was the absolute shits but thanks for being good company! Laura xo

goldenpawsKim

Wow, WW, u look fantastic. Can't wait to get to that point. Just finished up treatment #2 ... (2 more to go) starting to shed. When you mentioned that you were shedding the most on days 17 to 30, do you mean 17 days after EACH treatment or just the first one? I seem to have hair falling all over my shirt. It's freaking me out. I have thick hair so I feel I will be fine but I think it's just very scary at this point. I do, however, have confidence that PCC will work. I mean, come on, look at your pictures :-) thnx for the encouragement ♡ Kim

Warrior_Woman

Goldenpaws - When I started here a year ago I read every single post on the main CC thread. It took a few days. I was looking for patterns, suggestions, warnings and anything that would help me predict what would happen. Like you, I did the TC. I recorded everyone's data and paid particular attention to the TC women. I also read every published journal I could find.

Here's what I concluded:

Research shows women doing the TC do well with the caps. Hair loss ranges from very little and the most reported loss is 50%. I lost about 50% so I did not do as well as many. I'm mostly vegetarian and that could have made the difference...I don't know. No TC women in the studies lost more than 50%. And as you can see, with 50% hair loss, it does start filling in quickly. If not for the caps I'd be walking around today with a short curly cork screw hairdo. Some women can pull it off well. I'm not one of them.

Also, I tracked patterns of hair loss. Some shed after each chemo. Some shed little during chemo only to lose a lot afterwards. And some, like me, shed a lot early on, were steady the rest of the way through and tapered off quickly PFC. I lost most of my hair day 17-30. I've posted this before but this is what I lost in just one day....

I was a weirdo who saved my hair in baggies. In fact, I was such a weirdo that after saving all my hair I did not know what to do with it and decided to make a hairy voodoo doll. And here she is....

The bottom line is that I survived this. My hair is looking good and getting better and you will survive this too. I have concluded that there are many different patterns of shedding and we're all predestined to lose our older hair. Some will lose more and some less. Some sooner and some later. It is horribly stressful to have hair sliding off your head. But then it stops. And we start to breathe again.

goldenpawsKim

WarriorWoman! Thanks so very much for taking the time to explain things. I, like you, have researched the heck out of CC and still find it hard to get answers. I guess you're right .... everyone is different and I have to be confident this WILL work. How many treatments did you do? I'm doing four - 2 down, 2 more to go. I'm at day 23 so I'm just staring to shed. It seems like I'm finding hair everywhere. I have also thinned in between my temple and my ear. I think it looks worse because my ugly gray roots are coming in so it makes it look like I have no hair - ugh. I really do think this will work it's just stressful at first to see hair falling out. Dreading my next hair wash. I know the alternative and I don't want to be bald for the next few months .... CANCER SUCKS BUT I GOT THIS ... THANKS AGAIN. Greatly appreciated. Where are you in NJ? I'm in PA - 45 minutes north of Philly. PS love your voodoo doll

Kim

Leslienva

Warrior Woman, I'm saving my hair in ziplock bags. I like your idea of the voodoo doll!

Warrior_Woman

Goldenpaws - A also did 4 rounds but from the other women here, they too were fine with 6. I am in Frenchtown, NJ. It's one of the river towns north of Lambertville. Technically I am in the NYC burbs. I probably should have gone to MSK but I started at Penn as I'm a born and bread Philly girl. I grew up in Montgomery County - NW Philly burbs. We may be fairly close to each other now as I'm just across the river.

Leslie - Along with an artist on BCO, I tried to get a contest going. That is when it became obvious that cancer had pushed me over the edge. You're welcome to use my announcement to resurrect the effort.

goldenpawsKim

Warriorwoman: I'm in Doylestown!! I also grew up in Montgomery Co. Small world. Also going to Penn for treatments thanks again for your support. I think it's just a little overwhelming when you first start to see your hair come out. Maybe if it would shed all at one time it wouldn't be so bad?! Thnx again for reassuring me this WILL work ♡ enjoy the weekend. Kim

Leslienva

I found that I worried more about my hair than the chemo, so at least cold capping is a good distraction.

I read that the average woman loses 40 to 100 strands a day normally. Fine hair sheds more. I'm at almost four weeks out and still shedding, but we have to factor in that we would shed even if we weren't on chemo. So don't panic too much!

Leslienva

Warrior Woman, I like the contest idea, but we may be in the minority with our bags of saved hair!

Warrior_Woman

Golden Paws - I lived in North Wales when I was single and belonged to PSC @ Highpoint for years. I'm friends with the owner of Knighthouse. My surgical oncologist at Penn is Carla Fisher and my plastic surgeon was Liza Wu. My reconstruction failed and I'm now with Steven Copit at Jeff. We can easily meet up if you ever want to and compare notes.

Leslie - We're not the only ones who save our hair in bags. The obsession to compare hair loss on different days has led lots of us to do it. My bags, I'm proud to say, were each labeled with the date and hair care method of the day (wash, no wash, etc.) The bulk of it I tossed out for the birds to use for nesting. I don't know if they did or if somewhere out there is a big giant brown hairball.

goldenpawsKim

WW - I grew up in Souderton. My surgeon was Tchou & now seeing Dr. d'Entremont out of Penn Valley Forge. Small world. Ok, washed my hair for first time after treatment #2. 👎yikes. Scary. Seems like a lot came out but still full head of hair. Still freaked out.even afraid to really comb thru it. I know...I need to relax. Thanks for support

pch

WW,

Do we have to wait until we're PFC to use Nioxin? No way to use it before? Let me know. Thanks!