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Cold Caps Users Past and Present, to Save Hair

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Comments

  • sashasz3
    sashasz3 Member Posts: 97
    edited March 2011

    Lucky you look fantastic!!  It's very un-nerving with only one more to go---now having dreams of waking up with nothing---I have just started to lose more around the circumference of my head --bangs too--hope it hangs in for just a bit longer!!  (big head too ) I'll have to see if I can find the "sally's" Clairol hair color---I do see ammonia free hair color out there but they contain peroxide--isn't that a no no for a while??  Still confused--worked so hard to keep this hair--don't want to mess up the "after life Post cold cap usage!  Sharon

  • sashasz3
    sashasz3 Member Posts: 97
    edited March 2011

    just went on "Sally's" website--there is a clariol product called "beautiful collection"  it has no peroixe no amonia!  sounds like that is the one I'll be trying!  Can't wait!!!!

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    Lucky - you look so happy!  The hair looks fantastic. I have that thick hair too and lost mine in the back.  With three more to go (#4 Tomorrow!) I have that same worry on losing it all still.  What is great about the hair is that you look so normal in all the pics!!!

    I have really come to appreciate the many types/lengths/volumes of people's hair.  One friend has extremely thin hair.  Always knew that.  But, now I can relate.  And I love that there is so much variability in the world.  We are just experiencing all the variability in a few months time, which is not that hard to deal with, really!

    I, too, did some research at Walgreens.  I could not find loving care...  :(   I went online to Sally's and found some products.  I am going to make a trip to Whole Foods and see what they have. Before I began this journey (5 days before) I did a root color and highlight.  At that time, I had found some products that were "natural."  I will give a report later!

  • mdg
    mdg Member Posts: 1,468
    edited March 2011

    Lucky - you look great!  I am only 1 tx in....this week will be the "potential shed week" so I am nervous.  This gives me hope. 

    I did look at Whole Foods...most of what I saw had peroxide or amonia. I found a few things at the Sally's store - even though I won't need them for long time :) 

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Well, I started my  shopping for special things that will be needed for the cold caps and also for chemo.  Timer, special mouthwash, toothpaste (I picked up the Biotene and hoping it does the job), etc.   Still many things to purchase; gloves for hubby for the dry ice, electric blanket, shampoo, etc.

     I'll be ordering my ElastoGels tomorrow so I can practice with them.

    Next week, I'll find out about having the port put in and the date I begin the dreaded chemo.

    Thanks for everyone's help!

    Arlene

  • Lmflynn
    Lmflynn Member Posts: 273
    edited March 2011

    On the Clariol...as I mentioned...used it twice..it is the Beautiful collection. Really like it and no ill effects at 5 and 8 weeks PFC... Just a word of caution....since it is semi-permanent it will come off on your towels, etc...especially for the first two to three washes (which for us Cap Girls is a week or two) so use darker towels.....But I love the colors they have and actually fun to experiment right now...knowing it comes out...I'd always wanted to be a red head.... I'm at a Nat'l Sales Meeting in Arizona this week and can't imagine being here with a wig....it's exciting vs. being stressful. Now if there had been any way to save my breast......ahh you can't have it all ....and my new ones look pretty good :-)

  • jpmercy
    jpmercy Member Posts: 94
    edited March 2011

    Lucky!!! YOU LOOK AWESOME!! i love the color and you would never be able to tell you had chemo!! :)

  • torigirl
    torigirl Member Posts: 748
    edited March 2011

    Lmflynn---went to Sally's today and got some of the Beautiful collection...I"m just over 9 weeks PFC and this would be the first time to do coloring...but hopeful...

    I actually washed my hair in tepid water instead of ice cold and used a hair dryer on cool....the water was nice compared to the cold I was using...

    Hope everyone is doing well...

    Tori 

  • her2intn
    her2intn Member Posts: 18
    edited March 2011

    Just curious when cold cap users started using hair color with peroxide and/or ammonia.  I have heard some say as little as 5 weeks without any harm done, and others, not until after 12 weeks.  I am 3 weeks post chemo and used clairol from Sally's that is semi-permanent without ammonia or peroxide.  It made my hair feel very nice, and seems to have covered some of the gray at the sides where it was so bad.  I am wondering though, about when it should be safe for permanent color again. 

    A hairdresser at sally's told me after 8-12 weeks, it should be safe to use permanent color after the cuticle closes/repairs itself properly after being damaged.  Any thoughts on this?  I can't wait to get rid of the almost black with gray growth that is about 3 inches now.....

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    her2intn - can't answer your questions on color...but I am anxious to learn!

    I have TCH #4 of 6 in about 9 hours.  Can't sleep!  I ordered a lot of bagels for the drs/nurses.  I am inviting each into my room to learn about the caps and get a first hand experience. We will see if anyone actually walks in the room!  Wish me luck...I am now the only one at my center doing cold caps, as the other woman just finished - WITH HAIR!  

    Think about all the others that could be doing this with this great room, flatscreen, heated chair, chairs for visitors, sets of cold caps, and most importantly a freezer from the Rapunzel Project!  

    Night everyone! 

    Annie 

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Good luck Annie.  I'm sure #4 will go great.  That is wonderful that you are reaching out to the nurses and I'm hoping they show up.  Goodness, if the centers had the freezers it would be so much easier for us penguins. 

    Hooray for another successful penguin finishing treatment with HAIR.

    Best wishes for your treatment today.

    Arlene

  • Ang7
    Ang7 Member Posts: 568
    edited March 2011

    her2intn~

    I was afraid to color and I did not color until 4 months after chemo.  I went to my hairdresser and she used a "plant based dye?"  It sucked up the dye more than any other time I have colored.  I'm guessing because my hair was so dry?

    Best of luck with your coloring...

  • kriskat
    kriskat Member Posts: 116
    edited March 2011

    Sitting at first chemo with Elasto caps from advance.. So far, so good!!

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Good luck KrisKat!  Keep us posted as you progress!  We are cheering for you.

  • howard
    howard Member Posts: 102
    edited March 2011

    Annie: would love to know if your nurses are getting excited about cold caps now. I'm the first at the place I go and have found the nurses skeptical and a little irritated that they have to start according to our timing and find a place for us big enough for helpers and coolers. They remember or have heard about unsuccessful cold caps 20 years ago. As the first, I want to pave the way for it to be easier for the next Penguinista! And I'm sure there will be more, as I'm telling everyone about this option!



    On Day 13 after TC #2 and almost no shedding! But still nervous each day and so thrilled and grateful when each day passes with hair in tact. :-)



    Does anyone know if that Day 17-18 is critical after each treatment? I know that's when hair typically falls out after #1 if not using cold caps.



    Love hearing everyone's thoughts and tips.

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    Good morning!  Well, I had TCH #4 of 6 yesterday at MN Onocology.  This was where the filmed the Good Morning America piece with my onco.  We brought in bagels and a nice note explaining how things are going and the fact that I am now the only one doing caps in the freezer and the fact that we have capacity for 15 people on a three week rotation.  My note was put on the door and the bagels moved to the staff room. So, not thinking they all got the message.  But, my onco purposely came to the room. I told him about the excess capacity for cold caps.  I also told as many nurses that I could.  So, overall, was not a direct targeted "hit" but was a baby step.  I am going to bring in another load of food and secure the note to the food next time.  

    We also left the door open and it was interesting that many of the nurses smiled, but a few walked by repeatedly with surly faces.  Not sure why...could have been a bad day or they may always walk around like that. I also left the room more frequently to get water and tea and walked through the chemo lounge area.  Got a lot of interested stares or maybe they just had no clue what was going on with me..."does she had a brain tumor with a cap on?".... 

    I think we are so early in the education phase of this.  What is a cold cap? What does it do? Not do? How does it work?  How many caps?  Are you freezing?  How much money? Does it work for everyone? How much time? Can anyone get it?

    I am so thankful to be doing this. I keep thinking about how to make a bigger impact. My nurse did ask me to talk to one of her patients, but it never happened yesterday.  I may ask to go to a chemo class and educate the 6-8 people there.  Maybe give it a more positive spin instead of the lackluster pitch that I got.  

    BEST WISHES TO ALL YOUR PENGUINISTAS. I just read an interesting study (a few weeks ago) about the average numbers of hairs for a blond versus a brunette versus a red-head.  As I recall the blonds have about 130,000 follices drops to 100,000 for brunettes and fewer for red-heads.  I am blond and have lost a lot of hair, yet, it still looks the same to others.  So, I am thinking that is the weird pehnomenon, that I have so much hair that my loss my be more severe, but it is simply not noticeable.

    It is so positive...

    My shed days for every treatment (1-3) have been after about day 14 til the next treatment. About the full week. And, thanks to this thread, I know the shedding continues.  On the other hand, I am exactly nine weeks past my last hair color.  I have ONE INCH PLUS of gray/blond hair over my entire head!  The hair that should be GONE is growing like mad.  I always have to explain this to friends and family.  This cold caps are working. The hair is growing. I need BOTH a cut and color. That is truly a miracle!

    Sorry this is so long...could be my steroids...hang in there Howard, Arlene, Maria, and Kriskat (and many more, we hope).  Thanks to all the wonderful PFC ladies (too many to name).  We love you and your commitment.  You give us hope!

    Annie 

  • mdg
    mdg Member Posts: 1,468
    edited March 2011

    Oh lordy...it's starting.  I am 13 days out from my first chemo and today the hair "south of the border" began to shed.  I got back from the gym and went to take a shower and wondered why there was so much hair on the white tile floor right after I got undressed....then I tugged gently on a few hairs down south and sure enough they just came right out - I barely tugged!   After I showerd, I then rinsed my hair on my head over the large white tub and gently used the wide tooth comb to get any tangles out and not one hair came out of my head!  I would have seen it as I have dark brown hair and a very white tub and I was leaned over the tub rinsing.  I was nervously watching the whole time.....so did you start shedding on your head before or after the hair down south was shedding???  I am getting nervous now.  I am scared to wash my hair tomorrow....it's my wash day.  This is going to be a long week and then next week is chemo again....this is going to be two long weeks I guess I should say.

  • Karen2060
    Karen2060 Member Posts: 5
    edited March 2011

    Hi Penguins (love that!) this is my first time posting.   Annie, love your comment about the hair that is supposed to be GONE needing coloring-that definetly puts a new spin on things for me!  I am on a TC x 4 regimen of chemo, had stage one, but grade 3 BC that came back with an Onco score of 49 (hence, chemo), so I had lumpectomy surgery in December with 3 lymph nodes removed -all margins & LN clear.

    I am using the cold caps.  I have had 2 chemo cycles & am on day 18, have 3rd round on Thursday.  My hair has thinned a good bit & I have one pretty scarce spot over my left ear, but is covered by my long hair ....I think this is bc my cap was not tight against my head(BIG head)...so make sure you can NOT get a finger under cold cap when it is on!  I am only washing every 3 days & my hair is thick & wavy, so on "clean" days, looks like before.  I thought it was coming out about day 17 after 1st treatment, but think it was that one spot & has stopped since.  I'll keep ya posted with my 2 last treatments.

     I do not brush my hair, only scrunch & air dry.  I'm washing with nioxin and only using conditioner on ends of hair....not scalp.  

    I still have eyebrows & lashes, but have noticed everything south of there pretty thinned out!

    Any suggestions for 3rd chemo?  I feel pretty good except for new found allergies to Spring time in Atlanta! My best helpful hint for chemo (besides cold caps) is aleve & claritin days 1-7 of chemo, which greatly helped with my Nulasta shot, and Laxative & stool softners which have SAVED my stomach and ***!!

    Hang in there & thanks for your posts!!! Karen 

  • Karen2060
    Karen2060 Member Posts: 5
    edited March 2011

    Annie, My Oncologist & Nurses have not said too much about my cold caps----my oncology surgeon is the one who suggested them to me with great enthusiasm, so it does bother me that my Chemo docs are so negative about them....can't figure out why. I am very low maintenance, sit in my corner, my friend applies caps....what can they have against it?  I'm determined to walk back in & tell the nurse who said "you will lose your hair anyhow" a thing or two when I'm done:) so...I get the surly faces too-rather get those than the pity looks, bc I have an ugly scalp with scars from head injuries as a tomboy!

  • Karen2060
    Karen2060 Member Posts: 5
    edited March 2011

    Yes, had Onco test & it came back high with a score of 49.  My tumor was only 6mm but I am doing 4 rounds of chemo bc of my high reoccurrence score.

  • michcon
    michcon Member Posts: 121
    edited March 2011

    Lucky60 you look great!

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    Welcome Karen - so happy you just the rest of us Penguinistas. It sounds like you are doing great! Hang in there on the nurse/onco reactions. It is just so strange, isn't it? I have talked to so many of the young nurses, who ALL have beautiful long hair.  Almost all of them have said, in private, that they would do cold caps in a second, if they had to...Interesting!  It is almost as if they say it in a hushed voice. 

    Maria - I remember the south of the border  shed.  TMI Warning!!!  After TCH #1, day 14.  I was taking a bath and had noticed earlier in the day some hair in the undies. Strange. Then in the tub, I touched one side and literally gave myself a bikini wax on one side by just touching each hair. Weird and kind of cool, since I used to pay big $$$$ for this same thing. I then let the left side go to simply see what happened. Well, i did get a nice bikini was on the other side. I still have some hair, it is the perfect amount!  Then on about day 18 the top hair started to shed.  Though I have to stress that my major loss was where the caps did not fit on my nape of my neck due to large head.  Hang in there...the days are stressful. But as Frank and crew have said, if you make it through day 21 with hair, you have made it through!

    Love to all you ladies! Kiss

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Evening all and welcome Karen:

    Some funny posts today especially South of the Border comments.  :)

    Had my MUGA scan today so hoping no issues and that I can have the Herceptin.  Now that the MUGA is done, I'm really close to beginning the Chemo.  Since I'm one of the minority using the ElastoGels, I'll keep you posted on how they work.

    Arlene

  • keeppositive
    keeppositive Member Posts: 181
    edited March 2011

    Hi Everyone,

    Just lost my whole post--very frustrating, it happens here a lot!!! I am too tired to rewrite, but will try tomorrow.

    Good night,

    Nancy

  • ---
    --- Member Posts: 7
    edited March 2011

    Hi Everyone,

    I will be having my mx next week followed by chemo in 3-4 weeks after.  I'd like to prepare for the cold caps usage.  I'd appreciate if you guys can give me information where to call/ go to rent penguin cold caps.  Also, I'm curious as to how much it would cost to rent a cap for each treatment session.  I was told I will be having 2 cycles of A/C followed by 4 cycles of Taxol.  So I guess I need to prepare money for 6 cold caps if that's the case.  And last thing, are cold caps covered by insurance in any case?

     Thanks a lot,

    Laureen Romero

  • motherofpatient
    motherofpatient Member Posts: 124
    edited March 2011

    You can buy the elasto gel caps on line, get dry ice delievered to your home and save a ton of money. Penguins are up to $500+ a month to rent plus ice cost. Advance charges way too much for caps you can buy for $85-90 on line. Six caps will cost less than one or two rental fees. Before you use Advance,  google Sandy Molenhouse AND Mike Sweeney AND Camp Coastal so you know with whom you are doing business. 

  • Karen2060
    Karen2060 Member Posts: 5
    edited March 2011

    Annie, Regarding your comment drom Frank about passing the day 21 mark....I had thought of calling him back.   I lost a little patch over my left ear, as I said before, and WAS wondering if I would continure to lose.  Did you find this?  Or have any info from him?  I'm a little paranoid about to start #3.  So far, no other larger, noticable spots, just shedding a bit.  It's all a bit crazy!  I'm excited to have the gray hairs coming in now & don't want to lose any! Thx, Karen

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Laureen:

    A very kind penguin on this blog using the ElastoGels sent this link to me and I just ordered my caps:

    http://www.mandwsupply.com/product/CAP610/Elasto-gel-Hypothermia-Helmet-for-Chemotherpay-Treatments.html?meta=GBASE&metacpg=CAP610&utm_source=gbase&utm_medium=CPC&utm_content=&utm_campaign=CAP610

    She had great success with these.  You purchase them and can either sell or donate when done.

    I should be starting my chemo next week or the week after.

    Good luck!  Arlene

  • sashasz3
    sashasz3 Member Posts: 97
    edited March 2011

    Hi guys--next week is the final 6th tx!!!  Actually can't wait to get it over with--Breaking out in rashes--water retention is bad--(using lasix)  eyes tearing--and twitching--but still powering on!! 

    My caps are ready for the next person ready to be a penguinista!  I'll be done after March 24th--if anyone reads this and is in the South New Jersey area---if not I guess I ship them back to Michigan---would love to pass them on---hope I can--wish it was not for cancer though!

     Hope everybody is doing great today!!

    Sharon

  • Karen2060
    Karen2060 Member Posts: 5
    edited March 2011
    Can-D, I am 44 days out & doing well with hair on TC x 4.  I have had alot of thinning and do have thin,scarce spot over MY LEFT ear (my longer hair above hides it)....but think same as you that my cap was not snug enough there 1st treatment.  So, as I said in earlier post ...new Penguins, get cap on tight with extra straps so u can't even get a finger under!  to other people, I think my hair looks very normal...so caps are working so far!!!!Sealed

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