Cold Caps Users Past and Present, to Save Hair

AnneDR

sebm9:

 I was hesitant to ask another dumb question but never knew what the abbreviation PCS stood for, thank you for explainingI  I had figured  out all the other abbreviation you gals are using, but that one had me stumped.  A month ago, people were asking about which regimen I was on, etc and throwing around letters like IDC and  TC, and it was like a foreign language.  Truthfully I wish I still didnt know what it all meant!   I will definitely use al the suggestions for shanmpoo and ice on my fingers and toes for my 2nd chemo day.                    

I am a little hesitant to watch the show "Five" because the newspaper review called it "maudlin".  i don't think I can handle maudlin right now, but I might give it a shot. Thanks again for all your support,  Anne 

ArleneA

Anne:  I still don't know what half the abbreviations stand for and can only assume since I don't that they must not apply to me and I know it is bad but since they don't figure it is just something I don't need to know.    For a long time, I didn't know what PCS meant and one day it just clicked, probably as I was approaching PCS.

Just keep asking!

Julia1969

I just got home from the grocery store.  Yikes!  There were so many products, balloons, banners and that "would you like to donate to breast cancer" question at check out.  The football games this weekend with pink shoes, ribbons and gloves, the products, the TV ads-  it is all too in my face.  I hate pink.  I know that the research has probably added to my chance of survival, but I can't see how one part of one disease can be so in your face and for the whole month of October.  I'll be wearing my cold cap t-shirt to the Habitat for Humanity build day on Saturday, but to me it's about empowering women in crisis. 

mdg

Here's my update...I finally washed in warmer water today!  I was in a hurry and didn't have time to wash hair separate in the sink and just wanted a warm shower so I just did it.....it felt good. The last time I did this was February before chemo!!!! 

ArleneA

JuliA1969:  I am SOOO with you.  I was trying to buy a calendar and all I could find were pink ones.  We should applause the cause but it kind of slaps us in the face....I just hope most of the money goes into the research not into administrative costs....don't mean to be so negative but it is hard.

Maria:   HOORAY!  I've been washing in warmish and rinsing in as cold as possible for a month...I know way too soon! 

mdg

Look for my other post in this section labelled "October's Daily Encouters with Pink Stuff".  I am posting photos of everything I see.....gotta love having a camera on your phone!  LOL! 

Tiki

Maria- I am happy for you!

Since week 12 PFC my shedding is really minimal, but I think I am going to wait few more weeks for the warm water. This friday I'll be 15 weeks PFC.

Tiki

Correction. This Friday, I'll be 16 weeks PFC



And I just want to say that I don't like pink.

rik

I AM WONDERING IF IT IS OK TO USE AMMONIA FREE HAIR COLOR SEVERAL WEEKS PRIOR TO FIRST USE OF COLD CAPS AND PRIOR TO FIRST CHEMOTHERAPY TREATMENT.  I HAVENT SEEN THIS QUESTION IN PREVIOUS POSTS. PLEASE POST THIS COMMENT. I SEEM TO BE GETTING LOST HERE. THANK YOU  SO MUCH. THIS IS VERY IMPORTANT TO ME.

Julia1969

Yes, color your hair.  It is going to be a very long time until you can do it again.  Do everything you can to look and feel yourself.  Enjoy some warm water washes and even out the color while you can.  Beauty is in your mind.  Do what you can to look and feel your best.  Keep moving your body, get some cut hats or scarves to show off your hair when the styling isn't what you are used to.  Be the best you can.

soccergirl

Rik I think you should be fine. I highlighted 4 weeks before at a salon with harsher stuff.  Each person reacts differently, but it sounds like you are going to use a gentle product.  When do you start and what chemo will you receive?

ArleneA

Rik:  I think the protocol is to NOT color your hair before chemo (cold caps) nor after for many, many months.  I understand it impacts the roots that are working hard to stay put.  Just what I've heard!  I don't color my hair so it wasn't an issue for me but if I did, I would not have colored it before.  You are also not supposed to cut your hair before either nor for months after.

Other opinions I'm sure will be appreciated!

LivCar

Hi ladies!  it's been awhile.  I'm now 9 weeks PFC.  While i didn't have huge success with PCCs, i managed NOT to go bald - which was my goal.  I was on AC and Taxol.  For the new girls, i can report that my brows and eyelashes are back in full, and i have tons of new hair on my head.  My scalp has filled in and it feels secure with no shedding.

i'm starting to plan for my first colouring next month.  Has anyone tried Herbatint??

I saw a few postings about pink.  I can honestly say i hate it.  I spend every moment of every day trying to forget about cancer.  I want to move forward and every commercial, product, ad is a slap back to the beginning.  I'm in Canada.  There's a documentary out here called Pink Ribbon Inc.  One of other PCC girls saw it a few weeks ago - said it's startling how the companies are benefitting more than cancer research.  It's only the 11th. I hope i make it to the end of the month!!!

Hi to Maria, Arlene, Susan and all the others that were here when i started.  Hope everyone is doing well!!! 

Ralston - hope you're hangin' in!!

ArleneA

Hi LivCar:  Nice to see you.  Glad things are going well!  Guess we girls need to express how much most of us who have been through this dislike PINK!!!

ArleneA

Oh, the local commercials here are telling us how to prevent breast cancer.....

-Control your weight (check, I have always done that)

-Eat a healthy diet (check, I am a bit of a health nut)

-Exercise (check, I was a 1/2 marathon runner until this hit me and working my way back)... 

Ok, what else?

soccergirl

If you have breasts, you are at risk!!!!!

mdg

As far as coloring...they tell you not to but I did about 12 days prior to my first chemo with regular ammonia/peroxide color.  If you do color hair, I suggest coloring it the color of your natural color as when the roots come in it will be less noticeable than a lighter or darker color. 

Hey Liv!  Glad to hear from you!  I am glad you are doing well! 

Tiki

LivCar- Herbatin doen't have anmonia, but it has peroxide. That's what I have used to the last 5 yrs, before chemo.

nmoss1000

Hey ladies, just thought I would check in I am 4 months PFC and I am totally back to normal and I have been shed free for almost 2 months! My hair is growing like wildfire! 1.5 inches in 2.5 months! I am totally happy I did the cold caps and it was worth, the naseau, exhaustion and expense to keep my hair. One day when I figure out how to post pics I will. I got a professional haircut and Brazilian keratin conditioner few weeks ago and it looks healthier now than before, But I will say chemo and chemopause did dry out my hair beyond belief. I wish you ladies well and those of you in treatment now, stay with it and my prayers are with all of us.

sebm9

mdg: YAY!!!!!!!!!!! It's official, you are done with PCCs! Congratulations! When I had my first warm hairwash, I was so appreciative. I say a little thank you every time I have a warm wash.

nmoss1000: you did it! Congratulations, and thanks for checking in and cheering on those who are just starting.

LivCar: It is so great to hear from you! 

ArleneA: Reduce alcohol consumption (the sugars fuel cancer cells). Avoid deodorant with aluminum. Make sure you get enough Vitamin D. Avoid taking hormone treatments (it's hard to know in advance whether you are hormone positive but the risk is well known). Don't get your period early in life. Don't have dense (fatty) breasts. Don't eat/drink food and beverages from hard plastic items containing BPA, it not only disrupts your hormones, it can actually prevent tamoxifen from working properly for those of us on it. Don't be a descendant of other women in your family with breast cancer... Breast cancer is really several different diseases, and while one part of me relates to pink-aversion, I am *so* grateful for all of the new and continued research.

Cheers,

Susan 

codysjudy

I did not have great luck with AC and Taxol either.  It was great until I began Taxol and then I started losing hair and it did not stop.  I have only a small fringe left -- enough to use a topper instead of a wig which is more natural. but I am pretty bald.  I would still do it again because I had hair for most of the chemo period which shortens the time I am without hair.  Did anyone else have trouble with Taxol?  I was told it would be much easier on my hair but that was not the case.  I know one other woman at my facility had the same response.

Snoopy73

Hi ladies, hope all is well wiht you. I have a question on brows - I am 5 weeks post last chemo and practically lost most of my eyebrows. I have to pencil them in everytime i go out otherwise i feel like my face is so naked!! I hate it!! I always had lots of eyebrows, more like bushy type and when i shape them they always looked so nice and thick... now you can count how many ia hve!! I hate it I hate it!! I was wondering how long until they grow back? Thank you.

Maria, Nmoss, Livcar, Susan and all the rest whom i met when i started the caps - Thansk for all your support!! I am glad i used the caps. I have a head full of hair! altho thin and short at the abck and long infront, noone whould know i had chemo or cut my hair!! I would recommend the caps to anyone starting chemo. I am meeting my Med Onco today and cannot wait to show off:-) she was so happy forme on my last chemo when shesaw that i still had a gull head of hair!!

LivCar

codysjudy - same with me! I had most of my hair when i finished AC.  After the second taxol it just started flying off of my head.  I wish there was more interest in our success from PCC.  They should be surveying all of us (types of hair, chemo, duration, nutrients, washing, etc, etc).  No one even asked if i kept my hair.  I ordered my caps then never heard from Frank again.   I was told i'd keep 75% of my hair.  i kept 10%.  I'd still do it again - but i would have liked to have been better prepared for the hairloss.

snoopy 73 - i'm 9 weeks PFC and my brows are back.  They were grey first, then turned black.  It seemed to come in over night!

mdg

For brows once they started growing they looked so much better in about 2 weeks.  For lashes...it took 2-3 weeks for them to be long enough to wear mascara and look OK.  It won't be long...hang in there Snoopy!

dexxy

snoopy- i had to pluck a few eyebrows this am, so trust me they are on there way back.

Just wanted you all to know, that even though I don't have much hair I'm still thankful I did the caps.  The study that I was a part of at UCSF looked at 20 woman who used the DigniCap, and they also did one simultaneously with the penguin cold caps.  I feel lucky to be one of these women. This study was over 1-2 years.  The results are in and they will be gathering all the info to send to the FDA.  Fingers and toes crossed ladies, this is it.  With all the women who kept their hair and all the good the cold caps do for us with BC we may actually be on the road to having this approved by the FDA.  how great would that be?!

Ralsper

LivCar - I had my 5th Taxol (of 12) yesterday. As I mention, although when I began Taxol I have lost 85% of my hair, most of my head was cover with thin short hair (all my long hair was gone). I am still shedding, but I think I have  grown some hair since I can not see my scalp as much as I used, but also maybe it just "got a sun tan". For Frank recommendation my caps are no -28 and for my own recommendation I am using them 45 min before chemo and 45 min after chemo, around 3 hrs total (I use to wear them 5 hrs) and I am using room temperature water to wash my hair, because I just get really sick if not., I gentle massage my scalp and I don't have more problems with crust/itching scalp. When I go out I use a very nice human hair extension.

Good news: I am feeling good. Bad news: I gain 15 pounds!!!! Well, I have to count my blesssings... I guess

soccergirl

Dexy that is so great

Julia1969

I was just reading the paper and there was an article out of Pittsburgh about all the pink.. "Women say message lost in all the pink."  My favorite was the mention of a Smith & Wessan 9-mil handgun with a pink pistol grip.  Samantha King, a professor at Queens University in Ontario and author of the book Pink Ribbons, Inc. said that at first people warned that she would get hate mail for writing critically about the pink campaigns.  "And in fact the opposite was true," King said.  "I had underestimated the level of alienation that many women felt." 

It's not just us- it's them. 

Tiki

Snoopy-I lost my eye brows on week 6-7 PFC and they grow back in two weeks. You will see soon your brows again.



Ralston- I also gain 15 pounds during treatment. Finally, I lost all those extra pounds. It took me around 3 months.



Today, I saw a friend that I haven't see in a while a she told me "you cut your hair, looks good"

I didn't mention anything about treatment. .



Tiki

makingway

Ladies-I'm hoping that you all can help me to help others, in effort to save their hair... I came across the Chemocare website and read there that there was NO way to save ones hair. I emailed them to share it wasn't so. I submitted to them the clinical trial that was presented at the San Antonio Breast Cancer Symposium in 2009, along with some other articles. They told me they were in the process of updating their website and they would 'look into it'. After months had gone by without any change to the website I emailed them once again. Their repsonse was that they had 'one oncologist' look into it and felt it was questionable. I replied that this vital information warrants more than only one oncologists review! Well, the website was updated and it still discredits the cold caps. http://www.chemocare.com/managing/hair_loss_and_chemotherapy.asp

This is so frustrating for me!! I would think those in their profession would be doing cartwheels over the chance to save peoples hair. And, the standard BS they give that they're more concerned for your health is just that-BS! If they cared they would take the time to learn about the caps and discover that there is NO validity in the reasoning for why not to use them. The Chemocare website is viewed by many people. Please email them and let them know what you think.

Thanks Penguinistas!