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

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  • HockeyCat
    HockeyCat Member Posts: 222
    edited January 2015

    RainDew - Happy Birthday! I heard 40 is new 30! I believe that. :)

    I started using Nioxin. Scalps tingled a bit but felt so good. Lost quite a bit when I used the conditioners. I may scrubbed my scalp a little too much....

    Wish everyone a happy & positive 2015!

  • DMich
    DMich Member Posts: 1
    edited January 2015

    I've just created an account, but I have read many of your posts over the past six months.  I wanted to thank you all for posting your experiences and let you know that you all have helped me and continue to help me.  I was diagnosed 7/7/14 and used Cold Caps during treatments (six treatments every three weeks TCH and Pergeta).  My last treatment was 11/5/14.  I lost most of my hair at treatment five through the six weeks since my last treatment.  Single mastectomy was 12/5/14, and I wondered if some of the hair loss after surgery was related to the surgery process?   December 24 shedding slowed down.  I've lost better than half of my hair and my normal medium/long one length (never thick to begin with) dark hair is thick and mostly gray on top, but very, very, very thin below and behind the ears and on the back of my head.  It is many different lengths now.  However, I don't have any visible bald patches and have avoided wearing a wig thanks to Cold Caps and my family for keeping them on my head during treatments, this site, and my children who recently coached me when hair loss was so great after chemo.  I can't wear my hair down when I go back to work tomorrow, but will pull the thin longer pieces up loosely into a clip and hope for the best.  I'm grateful to you all because you communicated so well how everyone is different, and I was able to relate to someone different each time I visited this site.  You are all wonderful!  Thank you all for sharing ... I hope I can contribute too. 

  • barremom64
    barremom64 Member Posts: 191
    edited January 2015

    DMich- Big HUGS to you. we started this journey at the same time I was diagnosed 6/14. You've been quietly reading, I on the other hand have been chronically posting! perhaps there's a new forum for us chronic posters -a 12 step program of sorts:) I'm So glad you've gleaned so much valued advice from us! You have coverage which is great- a cut and color at some point will make you feel SO much better and clean up all those straggling pieces that dont work anymore. It took me two visits with my hairdresser to make a plan . Once I did I felt like a million bucks. you will too, your almost there. I used a "colorance" 5 weeks PFC, worked great!

  • barremom64
    barremom64 Member Posts: 191
    edited January 2015

    Hockeycat; Warriorwomen-thanks for the compliments. Its a BIG change from my pre chemo look but hey its coverage! Thank you both for all your support going through my trials and tribulations!

    JC254- Thank you too! I WHOLEHEARTEDLY believe in cold capping. My results were poor BUT I'm proud to have been part of a clinical trial, my results will go on to better a product/process for future BC ladies, for that I'm grateful. I will always be on this board to suport anyone. It's my way of paying it forward.

    SueBe- Cohorts for sure! You can now start thinking of coloring and cutting your hair for sure! I used a product called "colorance" at my salon. No ammonia or peroxide, it last maybe 4 weeks, but after not coloring for months it felt AMAZING!!!! All the grey regrwoth you have will turn brown and fill in your thin spots like magic! Please let me know how you make out!

    Now lets get back to the business of LIVING!!!!! long hair, short hair, grey hair and thin hair....LIVE!


  • Moderators
    Moderators Member Posts: 25,912
    edited January 2015

    Welcome to being an active member of BCO and we're glad you gained so much from the site while going through your chemo. Knowing that you are not alone and doing the best for YOUSELF as possible can be a great help.

    The direct support and fedback will be very helpful too.

    All the best

    The Mods

  • incognitomom
    incognitomom Member Posts: 103
    edited January 2015

    Barremom and WarriorWoman, you both look fantastic! JoeyJamesMom, I'm shedding what looks to be the same amount each time I comb (with a wide tooth comb). Like HockeyCat I'm going to try to stop stressing about my hair. I've tried before but I've resolved to try harder

  • Hortense
    Hortense Member Posts: 982
    edited January 2015

    To those who are shedding:

    Remember to hold your hair in sections when you comb, then while holding, start from the bottom and work your way up the section. Even hair magazines recommend that method to minimize hair being pulled out.

    "Comb like a Disney Princess", one hair magazine at my hairdresser's advised. I found that image amusing, but it reminds me to do it the correct way.

  • HockeyCat
    HockeyCat Member Posts: 222
    edited January 2015

    Thanks Hortense for the tip. That helps a lot to reduce shedding when combing hair.

    I used Nioxin System 4 twice so far. I lost a lot when I use Scalp Therapy. It felt good for my scalp but so many hair fell out when I rinse... I'll just stick with cleanser for now with some leave in conditioner. 9 weeks PFC, sigh....

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 110
    edited January 2015

    Hi, girls :-)

    May I please get your thoughts on this product:

    http://kenra.com/ProductDetails.aspx?ID=112

    I finished chemo Nov. 7th. but with all this shedding I found a bold spot yesterday.

    I am wondering if this product would be safe to use.

    I see on the web page, Kenra has a partnership with the Rapunzel Project. Not sure if that means any/all of their products are safe for

    us to use or not.

    Many thanks!

    P.S. WW and Barremom64-You both look amazing! I'd love to go short, but it is SO not a good look on me :-(

    P.S.S - It figures I may go back to work the end of this month.


  • nottoday
    nottoday Member Posts: 162
    edited January 2015

    Hi Ladies,

    I'm nearly 3 weeks PFC (boy, does that have a nice ring to it), and cold-capped my way through (with lots of help from my husband and another supporter). I had the 4 C/T regimen. Just wanted to thank you for posting your experiences and suggestions - they have been very helpful for me. I'm braced now for continued shedding through as much as 16 weeks. It will be a race to see if any new hair comes in before the old hair completely disappears!

    However, I am very grateful to have hair - I think its thinness is more apparent to me than to anyone else!

    Happy weekend, all.


  • HockeyCat
    HockeyCat Member Posts: 222
    edited January 2015

    JJMom, I finished chemo on Nov. 5, we are 9 weeks PFC. Sorry to hear you found a bald spot. My hair is still shedding too, but mostly inside. It's obviously thin but I have just enough to cover this spots for now.... I don't know if the product you mentioned is safe or not. I never used Kenra products and the website of the product doesn't show any integredients... It was suggested by PCC rep to keep the same hair care until shedding stops. But I've started using Nioxin sincethe new year.

    Nottoday, I noticed tiny hair growing around 8 weeks PFC. Not only on my head but hairs on unwanted areas (like face and legs) are slowly growing back now.

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 110
    edited January 2015

    Thanks for responding, Hockeycat.

    So, glad to hear you do not have any bold spots!

    I think I have one from having to lay on my back to sleep after having my double LD flap mastectomy Dec. 15th.

    I really do not believe it was from the caps *not* working.

    At least I had the drain removed on my right side, so I am making an effort to sleep that way.

    Have a good day!

  • JeniferE
    JeniferE Member Posts: 130
    edited January 2015

    For those who are using Nioxin products, what "number" are you using? I notice there are several different formulas with different numbers. I am five weeks Pfc, still have hair and it seems that the shedding is lessening a bit. My husband told me after vacuuming today that he found a lot less hair in the filter! God bless him!

    Thanks, Jeni

  • barremom64
    barremom64 Member Posts: 191
    edited January 2015

    JeniferE- I'm thinking The miracle isn't that you kept your hair...the miracle is the HUSBAND vacuuming!

    God Bless for sure! I'm not using Nioxin products as I've read mixed reviews. Post on the other board as well (cold capping past, present etc) Some cold capping sisters have strong preferences on "after capping" products. I'm still using the darn Dermorganics shampoo, although I HATE the smell.

    Glad shedding has lessend, I felt I could breathe just a bit easier when that happened. Best of luck:)

  • HockeyCat
    HockeyCat Member Posts: 222
    edited January 2015

    Jeni, I use #4 chemically treated hair. Hortense who recommended Nioxin used #4, too.I want to color my hair to cover grey as soon as shedding stops!


  • RainDew
    RainDew Member Posts: 305
    edited January 2015

    I went with #2 because I've never dyed or chemically treated my hair (don't know if chemo counts??)

    Btw am now nearly 16wks PFC and STILL shedding. Hoping it stops soon - I don't necessarily want the record for 'longest shedder'...

    Also am itching for a haircut, but don't want to until I am confident shedding is done. :-(

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2015

    RainDew - I know it is not advisable, but, I did have my hair trimmed before I stopped shedding. I couldn't take the rat's nest that formed around my ends. When I spoke to my hairdresser she said that she just could not conceptualize any reason that it would cause more shedding. I'm not suggesting that you do this but it did work for me. It didn't make me shed more and I felt a lot better. It really cleaned up my hair.

  • RainDew
    RainDew Member Posts: 305
    edited January 2015

    thanks Warrior Woman!

    I am honestly more worried about the vigorous shampoo than the cut itself...I guess I can ask them to be gentle? (I've recently moved so don't have a 'usual' salon).

    I think it's become a sort of magic totem for me...one more reason to look forward to shedding stopping...although I had figured it would stop this week. If not, I'm going to have to go ahead with a cut...the ends are ragged and not super professional looking

  • JeniferE
    JeniferE Member Posts: 130
    edited January 2015

    Dear Cappers,

    Thanks for sharing advice and experiences. I had a big shed after I shampooed Saturday...just when I thought it was slowing down! I plan to have a gentle, tender trim at the end of the month, I will be at 9 weeks PFC. May change my mind but right now I am so looking forward to a trim! I also am continuing dermorganics shampoo, gentle washes, air fry, Kendra leave in spray conditioner.mi really like that product!

    My husband the vacuumer is an amazing person, I am blessed!


    Jeni

  • jc254
    jc254 Member Posts: 439
    edited January 2015

    I had my hair trimmed and colored before I stopped shedding.  I was going to a wedding at three months PFC and my hair looked pretty ragged.  Just make sure you explain the situation to the stylist and either wash yourself before going to the salon or ask her to use cool water and wash gently.  My stylist even blow dried my hair on a cool setting and styled using only her fingers.  It looked great and I actually cried (good tears) when I walked out of there.  The shedding continued for about another month but I don't think the cut and color made any difference.

     I really liked the Kenra leave in spray too although I didn't continue using it.  My hair gets really frizzy so I went back to my normal products at about six months PFC.  The one thing I have continued using is a wide tooth comb instead of a brush. I never used a comb before cold caps but now I don't like using a brush.  Not sure why.

  • RainDew
    RainDew Member Posts: 305
    edited January 2015

    ok you ladies are convincing me...maybe I will just book a haircut..

    (Fingers soooo crossed that as I approach 16wks PFC this week it will stop anyhow...it's weird, I have plenty of hair but it's painful to lose so much every time I wash...like there is a voice in the back of my head wondering if it might just never stop and in 6months I'll be bald...)

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2015

    Rain - I'm with JC on this. The first trim I had her wet but not wash my hair. Then for a few times I brought all of my "stuff" and she gently washed it as I do at home. Same for when I eventually used organic coloring. And now I'm back to my normal routine waiting for my new growth to get long enough to have my hair all evened out.

  • Hortense
    Hortense Member Posts: 982
    edited January 2015

    The first time I went to the hair dresser after chemo I brought my own shampoo and creme rinse (Dermorganic), and gently explained what I had been through and why I was asking for special treatment. The staff was so understanding.

    I told them I that I needed to have them use very cool to cold water to wash my hair and needed extra gentle washing of it - no rubbing, no massaging, just patting shampoo into suds and gentle rinsing, and the same thing done with the rinse, plus no pulling on my roots in any way such as combing from the middle or top, etc. Everyone understood and tried their best to go along with it. As a result, when I left I didn't feel I had lost a lot of hair and I looked so much better with a decent trim and a glaze to hide my roots. It did wonders for how I felt about myself. The next month we added some streaks.

    I had used Nioxin #4 to cleanse my scalp about two weeks to a month after chemo ended because I couldn't stand how limp my hair looked at the time and also I had what looked like large flakes on my scalp. I chose #4 for Naturally Thinning Chemically Treated Hair not because my hair had been lightened before chemo, as my roots were about four inches long by then so the hair nearest my scalp was naturally colored, but because I figured my hair had been chemically treated by chemo and was thinning as a result of it. It worked beautifully for me.

    My hair and scalp felt cleaner after the first shampoo and my hair looked much thicker because the build up had been partially stripped away. After the second shampoo a few days later I could see an even bigger change. My hair was shiny, had more volume and floated in the breeze again without its load of unseen build up and I no longer had "flakes". I didn't scrub during the shampoos, but after I put it on and patted up a decent amount of suds I did gingerly work my fingers through my hair along the scalp all over my head to try to loosen the flakes a bit before allowing the shampoo to sit on my hair 5-10 minutes to work on the build up and break it down. I think that helped a lot.

  • HockeyCat
    HockeyCat Member Posts: 222
    edited January 2015

    Rain, hope your shedding stop at 16 weeks. I'm almost at 10 weeks PFC, finishing Rad next week. I'm hoping shedding stop around the same time as Rad.... Until shedding stops, I don't feel like all the treatment is done. Can't start to live 'new' normal life...

  • DaniellaD
    DaniellaD Member Posts: 273
    edited January 2015

    I went for my first trim a month PFC, coincidentally, around when I stopped shedding. I brought my own products, too. I have now attempted twice to cover or at least blend the gray using Clairol's Beautiful Browns. Stuff stinks for me bc it literally just highlights the gray until then first wash.

    Since I only cut 1.5 inches at my first trim, I want to schedule another trim for this month. My hair is just too long. I was wondering about coloring with something like a Demi permanent at this point. My shedding has stopped.

    Btw, I'm using phyto for thinning hair system. It works well. I've used it isn't he last when I lost hair due to pregnancy

  • hope49
    hope49 Member Posts: 370
    edited January 2015

    I started getting a 1/2" gentle trim the month after chemo, and got one every month until the 6 month mark when I did the full cut/color. I didn't have her wash it, just gently comb and trim it dry and I think that it actually seemed to help the shedding - may had just been my imagination, but my hair felt and looked a lot healthier after each trim. Rain, I'd say maybe start that way - dry cut, just a bit off the ends and see how you feel. good luck!

  • RainDew
    RainDew Member Posts: 305
    edited January 2015

    thanks ladies - I think I am convinced. Hopefully the shedding will stop soon anyhow (16wks on Friday!!)

    Now, I just need to find a new stylist...oh how nice to have a 'normal people problem'!!

  • Leslienva
    Leslienva Member Posts: 489
    edited January 2015

    Did anyone have more than an inch cut off on your first trim? My hair is just so long and straggly, it needs several inches off, but I don't want to go against protocol and shed even more..

  • RainDew
    RainDew Member Posts: 305
    edited January 2015

    hi Leslie - I just took the plunge and booked a haircut for this afternoon. I will have about 6 inches chopped off - I just can't live with it anymore and now that I've decided to go for it, kind of think 'what the hell'.

    I'll let you know if I need a wig afterwards :-)

  • Leslienva
    Leslienva Member Posts: 489
    edited January 2015

    Good luck, RainDew! Report back!!

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