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

RainDew

ok! I chopped around 6-7 inches off my hair...and it's still there :-)

Looks sooooooo much better. All the raggedy ends are gone so it's all healthy and bouncy again. (And no, despite my fears it didn't all fall out in the sink...)

Happydance!

JeniferE

My big step 6 weeks Pfc ...I washed my hair under the GENTLE shower stream. Tepid water, same dermorganics shampoo, but so much nicer that the kitchen sink!

Leslienva

Has anyone used those old fashioned sponge curlers? I have to do something tostyle this hair...

Hortense

I cut half an inch a month off my long hair by myself all through chemo as an equal amount was growing in, judging by the length of natural colored roots I had. At my hairdresser's suggestion, I also had about two inches cut off at my first professional trim after chemo which was five months PFC. My hair was dry and lifeless looking with lots of breakage, so a good trim and shaping was necessary. It made a huge difference in how I looked. I wish I had done it earlier.

I don't think minor trims make any difference, and probably major ones either, though I would wait for a major trim until well after chemo just to be safe.

Leslienva - I would use a blow dryer and brush to make my hair look civilized. I used cool near my scalp and only used warm on the ends to give them a light curl. I even did that during chemo when there was a special occasion, although I tried to let my hair air dry at other times.

DaniellaD

Leslienva - I use a cool dryer on my scalp, warm on my length. Then I use a curling or straightening iron if I want to style it. Just don't pull or go too close to the scalp.

goldenpawsKim

wow, you girls are very brave!!! You are both done treatments, right?? So very lucky. I'll be there soon.....

JeniferE

I have used a curling iron on my ends all through chemo and PFC. The hair is much thinner but I have full coverage, just thinner coverage. The curls at the end mask the dryness. Will get a professional trim 8 weeks PFC. My hair stylist has been such a great support all through my journey, always checking in...look forward to seeing her!

hope49

Good luck, Rain, I am sure it will look and feel great! I think the biggest risk has passed and as long as you are careful with the process, your hair will do fine.

Jennjdance

hi everyone! I am a week PFC and am wondering when I can start using regular deodorant again. I know it's not suggested, but the one I'm using is just not working for me. If you are still using special deodorant, does anyone have any recommendations? I've been using Tom's of Maine. Thanks!

goldenpawsKim

I've been using Jason's w aloe .... I think I smell better without it. Ugh!! I'm also looking for something natural but a deodorant that at least smells good. Let me know if you get any good tips. Thnx! Congrats again on a successful finish 😃

Leslienva

I've tried four or five non aluminum deodorants by now and none seem to work. It seems like I was sweating out the chemo, tho, so maybe once that gets out of my system, they'll work better..

Jennjdance

I just saw on Amazon Latisse is on sale for $35 from $140 today only! And I think free shipping.

http://www.amazon.com/gp/aw/d/B00IS6XPQY/ref=mp_s_a_1_1?qid=1421695467&sr=8-1&pi=AC_SY200_QL40&dpPl=1&dpID=41+u8mC9CEL&ref=plSrch

nottoday

Thank you, Jenn. I've been wanting to try Latisse but thought it was too pricey. Now, I can afford it!

Hortense

My oncologist is very firm about her patients not using deodorants with aluminum in them. She said that while studies haven't been done to prove it, a lot of doctors feel that it might be a cause - combined with other factors - of breast cancer. She is nationally known and respected, so I take her seriously. I avoid aluminum.

I have had luck with a deodorant product called "DeodoMom" that can be found on Amazon. I think it was designed for pregnant women which would account for the name. I have found that it usually works for me. It's a cream that comes in a jar. I think its ingredients are similar to Milk of Magnesia's.

schoolmom

I have been using Toms for over 2 years. I found it was useless during chemo but now works fine. Not a strong scent but sufficient

Leslienva

Schoolmom, do you remember how long it took to stop sweating out that yucky chemo smell?

RainDew

hello fellow ex-cappers!

Can anyone offer an opinion on how you know you've stopped shedding?

I know that sounds kind of ridiculous, but here is where I am coming from - I am nearly 17 wks PFC, and in the shower today lost ~10 hairs (yes I am counting...)

This may have been normal, but of course pre-diagnosis, I never paid any attention to this (being neurotic about my hair is a chemo speciality!). I think some of you said when you stopped you COMPLETELY stopped, like no strands at all.

I'm not even totally sure why I care (already chopped it and I don't color), but I guess I just kind of want to declare victory on this whole chapter (exchange surgery scheduled for a few weeks' time too!)

Any thoughts gratefully received!

Rain

Ps - Leslienva, I don't know that I had that...or maybe everyone else noticed and just didn't tell me! ;-)

DaniellaD

I use lavanilla deoderant and it's ok. Geodeo works great and is invisible. But the best deoderant - mix 2 parts corn starch, one part baking soda and organic coconut oil - just enough to make it solid. Works amazing even on your sweatiest days. You can add some lavader or other essential oil if you don't like the plain smell. I'm telling you, nothing better - and this is coming from a diehard Donna Karan Cashmere and Kiels user which anyone who knows will tell you are the strongest antiperspent and most expensive ones out there. Now I make it and I amso not a granola hippy type.

jc254

Ten hairs sounds pretty normal to me. My hair did completely stop shedding for a few months (no hair fell out at all) but I don't know if that's typical. Your haircut looks really cute- congratulations- you're done!

Warrior_Woman

Ladies - 9 mos. PFC and I finally took Hortense's advice and tried the Nioxen # 4 hair care system that I purchased after a consult in the salon at Ulta. After only one use, my hair appears to be close to normal. Unbelievable! Everyone is noticing how good my hair looks. My husband asked, "Wow. What did you do with your hair? It looks great."

I use Arm & Hammer Essentials and an extra dab of perfume.

RainDew - Somehow I just knew when the shedding stopped. I felt less "delicate". It is hard to describe. It was something intuitive that let me know it was time to gradually move back to a more normal hair care routine. I wasn't shedding. Hair that came out was like the hair that came out before chemo. Shedding is a more out of control hair loss...if any of this makes sense.

HockeyCat

Rain, I was wondering the same thing. I remember seeing the posts saying shedding completely stopped as jc254 said. I'm PFC 11 weeks. Still waiting for that moment... 10 hairs doesn't sound like a lot. I'm sure I lost more than that before chemo when I washed my hair. I've been using Nioxin #4 shampoo after New Year (8 weeks PFC). My scalp feels good and my hair looks better! I used Nioxin scalp treatment/conditioner a few times, but stopped because so many hairs fell out. Has anyone used this conditioner? What do you use?

Hortense

When my shedding stopped, it truly stopped overnight. One day I was still shedding, the next, not one hair came out. And, none came out for about four months afterwards, too. It was amazing. Mine stopped at 16 weeks on the dot.

Daniella thanks for the deodorant recipe, I will be making some today.

I don't dare use Kiel's products anymore as they have so many chemicals in them.

Leslienva

My scalp has been flaking for several weeks. I tried mixing the apple cider vinegar with the organicshampoo and also mixing it with two cups of water as a rinse, but I still have the flakes. My scalp really itches, too. I can't scrub too hard to get the flakes out since I have to be gentle so I'm not sure what to try next. Any advice?

Hopeful82014

Hi, all - I've been reading this thread for a while, hoping against hope that I WON'T need chemo and thus won't need any of this info, but wanting to be prepared just in case.

Regarding Daniella's recipe for deodorant - I just wanted to mention that lavender, much as I love it, has known phytoestrogenic properties. Therefore anyone who is ER+ might want to avoid using the essential oil on their skin.

It's been years since I read about this so can't readily provide cites - it may have been in 'Slow Death by Rubber Ducky'.

Thanks for making your hard-earned wisdom available to all of us. I hope to never need it but will always appreciate what each of you have been through. Good luck getting back to loving your hair. ,

DaniellaD

thanks Hopefull! I was going to mention that essential oils - many of them have phytoestrogenic properties so you might want to skip any essential oils to be safe. I personally hate the smell of lavender and just use the basic recipe. You can tweak it with more baking soda for better odor control, but it can be harsher on sensitive skin from what I've read. I put mine in an old deoderant stick for easy use. It rocks but you will get white marks on your clothes if you're not careful.

Hopeful82014

Great info, Daniella! Thank you.

PatinMN

Hopeful - so interesting that you are getting treatment with Femara before surgery or chemo.  Is it a trial?  I've never heard of this option before.

Hopeful82014

Hi, Pat. I am 'shadowing' a trial that is currently underway at a local university hospital. By shadowing, I mean that my bs is involved in the trial and offered me a chance to participate but since it would have required jumping through a lot of hoops with my insurer, we're simply following the treatment protocol without actually going outside my network.

The protocol has been used fairly extensively in Europe and the UK but not in the US. In my case my bs thought it would be a good option because of my positive node and high Ki-67 rate. These factors tend to suggest the likelihood of an intermediate Oncotype score (or high) after surgery and frequently dictate ALND, which I was very concerned about.

A re-biopsy after 1 month on Femara demonstrated a strong response in that the Ki-67 dropped from 43% to 4%. The tumor, which wasn't large to begin with, has shrunk and the node both looks better on US and was barely palpable.This is extremely useful to know (as opposed to starting after surgery and simply hoping for a good response).

I'll have surgery after 6 full months on Femara, at which time we hope that the node will show a pCR.

I think it's a very useful approach, although the waiting to learn the outcome is very difficult. If it means I get a pass on chemo, however, it will all be worth it. Even if I don't avoid chemo, we will have valuable in vivo information about my tumor's response and that will be helpful.

If anyone has questions please don't hesitate to ask. It's an approach I think we'll see more of in the future and I'm glad to share my experience.

Leslienva

Hopeful, what is ALND? Are you having any side effects from the Femara

Hopeful82014

Leslie, ALND is Axillary Lymph Node Dissection - the removal of the level 1&2 (sometimes level 3) lymph nodes. It's more likely to lead to lymphedema than a sentinel node biopsy.

The alternative is Axillary Reverse Mapping, (ARM) which is a newer technique that spares the nodes draining the arm and thus reduces likelihood of lymph edema.

I haven't had any real side effects from Femara. Occasionally my down moods will be darker and I think my hair might be a bit drier. It's hard to tell for sure with the hair, given seasonal drying effects and the dehydration resulting from some very long flights. So, on the whole, I'd say no side effects. I take it at night so that if anything such as tiredness or whatever results it doesn't cause any problems. Heaven knows, I'd much rather deal with anything Femara could throw at me than T/C.