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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Marie3
    Marie3 Member Posts: 29
    edited January 2012

    Arlene, My instructions for dry ice in slab form was 40 lbs. in each cooler. My place only had pellets. Or nuggets as they called them. They suggested I get a little more to make up for any evaporation where I was getting them a day ahead. I think I may just try 80 lbs. next time, though my kids had fun doing science experiments with the left over ice. I may do what Howard suggested in the earlier post of telling them what it is for and see if they give me a discount as well.

  • Julia1969
    Julia1969 Member Posts: 85
    edited January 2012

    I got ten of the brochures from Geralyn several months ago.  They seem related to Penguin, but are also there to help others in the Minneapolis area. (We help you order and we help instruct you.....).  Are there any just from Penguin? 

  • ali68
    ali68 Member Posts: 644
    edited January 2012

    Hi girls, who do I ask for a calmer before chemo and cold cap. My gp said ask at the hospital I hope she's right.

  • mdg
    mdg Member Posts: 1,468
    edited January 2012

    Ask your med onc for some ativan. I had an rx and took one that morning before I left home and they put more in my drip in my pre meds along with benedryl. I was calm and chillin out. So.e days I even dosed off a little here and there during chemo.

  • sebm9
    sebm9 Member Posts: 488
    edited January 2012

    Hi Julia, The brochures I rec'd were for Penguin anywhere, not local to Minneapolis. Gave away a bunch today to my acupuncturist's office, and to a woman registering whose friend is about to undergo chemo. She'd never heard of PCCs (of course) but her friend may look into delaying chemo a week in order to use them. Either way, it's great to know there's a choice.

    Susan 

  • Ang7
    Ang7 Member Posts: 568
    edited January 2012

    My brochures were for Penguin anywhere also.

    I gave a bunch to my hairdresser as she actually goes to houses and shaves heads for cancer.

    She set up a brochure display and put them in by the YOGA brochures...

  • Laura5
    Laura5 Member Posts: 419
    edited January 2012

    Julia, My brochures were for Penguin anywhere also. I got them from Geralyn too, so maybe you should ask her for more.

  • rik
    rik Member Posts: 11
    edited January 2012

    Anyone have a suggestion for a safe hair color product  to use during chemo/PCC on roots to cover gray?

  • Julia1969
    Julia1969 Member Posts: 85
    edited January 2012

    Arrrrgggghhhh!  It's happening again.  I was watching Good Morning America these last couple of mornings and the Breat Cancer Walk ads have begun.  They've had at least three on already this morning and the walk isn't until July!  Between October ribbons and products and now this again- I HATE PINK!

  • mdg
    mdg Member Posts: 1,468
    edited January 2012

    I used colormark during chemo to cover roots.  It is a temp color...like a mascara so it washes out when you wash your hair. 

    Oh the BC walk commercials are on TV here all the time!  There are tons of general cancer commercials too.  I am trying to forget I had cancer.....do we need to see it all the time?

  • LeesaAnn
    LeesaAnn Member Posts: 40
    edited January 2012

    I think they start those BC walk commercials so early because you have to raise a big amount of money to walk, something like 1,500-2,000K. Clearly its big business, not just for the walks, but for all the companies who make pink blenders, and other pink products. Its a whole new kind of marketing genre.

    My shedding is leveling off, yay! Just had TC #3. I've been talking to my MO about getting a freezer from The Rapunzel Project donated. She was luke warm about it. I mentioned it to my Breast Surgeon yesterday (He is head of the department) and he was GUN HO!!!! Really, really excited about it and turns out he is a big proponent of supporting these caps. He said he's never seen any breast cancer patient die with scalp mets, and he nearing retirement age. He says the whole controversy over these kinds of mets is nonsense. There is no substantiated proof. There is so much mis-information out there within the MO community. Why are they so hesitant to believe??They are the ones who need to be convinced, as they are on the front line when women are faced with the chemo decision. I know the nurses don't want the additional hassle. But what causes the MO's to hold back?

    I just think about how many women's lives and cancer experience can be changed for the better through the use of cold caps.

  • soccergirl
    soccergirl Member Posts: 190
    edited January 2012

    Hair update: I am one week shy of the fourth month mark post PCC.  I did a color test on my hair using stuff to highlight.  So far so good. I go back Wedenedsay to do the whloe thing!  I will be 4 months at that point.  

    Question about regrowth: I am noticing tiny hairs every where now!  Is the 4 month mark a big hair growing month?    Hair dresser could see them everwhere!  Is the chemo hair growth as fast as it appears?  Hair dresser thinks it will take 6 to 8 monhts for new hair to catch up old hair?  Is there any literature on the growth reate after chemo?  My hair down south came back thicker than before and I am shaving legs every day ot twice a day.  

  • soccergirl
    soccergirl Member Posts: 190
    edited January 2012

    I meant growth rate

  • mdg
    mdg Member Posts: 1,468
    edited January 2012

    Hair on my head is growing like mad. Hair on legs came back crazy thick and growing fast but now (7 months PFC) it is fine and sparse...I don't have to shave legs often at all. Could be the effects of tamoxifen. Either way it is fine with me! The hair I lost at hairline in front are small bangs now....down to my eye brows. The sid burn areas I lost are about 3 inches. My hair no longer feels thinner. I am loving my shoulder length hair now. People at the cancer center where I take yoga can't believe it....they have never heard of cold caps (go figure).

  • Laura5
    Laura5 Member Posts: 419
    edited January 2012

    LeesaAnn, You are so right! It makes me mad when I think that some of these MOs could be doing such a wonderful service to women by telling them about cold caps, but don't, because they don't want to bother to research. Good for your breast surgeon, sounds like he cares! Hope you can convince them to get a freezer. I had a tough time convincing mine, but persistence pays off.

  • soccergirl
    soccergirl Member Posts: 190
    edited January 2012

    Thank you so much for the update!  I am getting over my very awkward post chemo look.  Hair is looking so much better. Eyelashes and brows are good again.  I  wear cute hats and extensions now while I wait to finish the color.  I wear two braids and a cute hat but am dying to lose the hat. I love my natural color but it looks like S#!t next to the bleached blond hair. I highly recommend new comers to dye their hair back to natural color before they begin this process!  The color restrictions are killing me, but I keep telling myself, I  should be bald.  Then I completely laugh because I can't picture it. I am not working right now( thank god)  and I go back to teaching in March.  By then I will have the hair under control and won't have my students ask me about it( hopefully).  I teach 5th and 6th grade and the kids are obsessed with hair, clothes, etc... It is the age but they notice everything.  They have not seen me since April and I had long light blond hair.  I wish there were people who documented the rate of new hair growth after chemo.  I guess we are on this thread.  Our posts are so valuable, I wonder if someone will try use this info in the future to publish a study?  I peeked on the hair after chemo thread to see what the women who didn't use the caps were talking about and let me tell you, being bald sounds really hard.     

  • mdg
    mdg Member Posts: 1,468
    edited January 2012

    Soccergirl - hair will continue to grow fast for you post chemo...look at your roots now and realize how much it has GROWN DURING chemo!  My roots were at least 1 1/2 inches after chemo.  I should have been bald but with caps my hair continued to grow.  My hair is growing. fast now...I am back to coloring my hair every few weeks..it is growing at least as fast as before chemo. 

  • sebm9
    sebm9 Member Posts: 488
    edited January 2012

    soccergirl: my hair grew twice as fast as before, and thicker and curlier. My hair has been growing an easy 1-inch a month, even going right into tamoxifen. Even my old hair grew faster. I was just looking at some pictures from 2010, and took one of the nape of my neck in December, about 5 months PFC -- I had 3'inch curliques (three inches with the curl still curled, that is) all over the nape of my neck.

    My leg hair still grows back super-fast, too: I need to shave every day, unfortunately. My treatment side armpit hair did not grow back for quite a few months, so I was only shaving one side for a while. It was kind of funny. I considered laser hair removal because I liked the hairlessness so much :-)

    Everybody is a little different, but most folks seem to have fast regrowth and sometimes curlier hair. The curl is usually temporary; mine is tapering off and probably within the next few months of haircuts the post-chemo curl will be back to my usual wave. It's been fun having big curly hair.

    Shoot, it's been fun having hair at all! It's so nice to be able to celebrate that feeling with the women on this list. On other lists, I always feel a little guilty.

    Susan 

  • soccergirl
    soccergirl Member Posts: 190
    edited January 2012

    Thank ladies for the  info.  I can't wait to be back to normal!  

  • mdg
    mdg Member Posts: 1,468
    edited January 2012

    Hey Ladies!  I am sitting in bed watching TV (ABC) and they just advertised that they are doing a segment on the news tonight on cold caps!  I saw them show a dignicap but then I saw what looked like a PCC too.  I am going to watch!  I hope they get the word out!  If anyone is in Chicago area...ABC news tonight at 10pm is going to show it!

  • howard
    howard Member Posts: 102
    edited January 2012

    MDg: that's great to hear that cold caps will be on tv! Let us know if there's a link to watch the segment on a website. I am 8 months pfc, just a month ahead of you, and having exactly same results as you: hair on head growing fast, hair on legs came in strong but now very fine and sparse. Wispy bangs to my eyebrows and side burns about 3".

  • serenitywisdom
    serenitywisdom Member Posts: 109
    edited January 2012

    Hi all,

     Interesting to compare post chemo hair growth.  I have short little baby fine bangs and about 3" growth of wings where cap apparently did not touch, and am about 6 months PFC.  I am now going to start coloring tinting hair  every 5 weeks.  I am so grateful to have full head of hair and not peach fuzz. 

    Regarding the reaction in the infusion center to my hair, it is wierd.  I am still going every 3 weeks to get herceptin so  I tell the  infusion nurses if I do not know them of my positive experience with cold caps  and some of them seem  generally disinterested.  They can all see clearly that I have a full head of hair.  One nurse even sarcastically told me " I am glad it worked for you."  It was her tone of voice that I knew she would not be recommending it or telling others about it.  Not sure what it will take to get the medical professionals  to accept this-  FDA approval?  I think that many oncs are just plain skeptical even when you show them visible proof because they are worried about scalp mets, even though studies in Europe have shown this not to  be an issue.  

  • ckk
    ckk Member Posts: 79
    edited January 2012

    I had my second TC infusion yesterday, and the MO and Onco nurses were so excited that I had hair! My nurse asked ton of questions, and asked if I would talk to a Wellness group that she runs for newly diagnosed BC patients. I will be writing Geralyn to get some brochures. I feel very lucky to be at an oncology center that is kind and open-minded about new things. Yes, I think that FDA approval will hasten the word getting out about the caps, and will encourage insurance companies to cover them.

    I have some shedding today (Day 23) but nothing alarming. My hair has definitely grown since treatment started, which feels really good. Who would have thought that seeing gray hair would make me smile? :-)

  • makingway
    makingway Member Posts: 465
    edited January 2012

    http://abclocal.go.com/wls/story?section=news/health&id=8503338

    This article was poorly written... It doesn't appear anyone bothered to edit it for grammatical errors or sentence structure. I wonder if the data is even correct...They begin the article with the words icy cold treatment, which to mosty people would suggest that ice is used. I wish people would stop doing this! It associates the new caps with the old ones from the 1980's where ice was used, that didn't work. The temperature given in farenheight is equal to 5° Celsius. This is high compared to the temperature the Penguin cold caps are used. There is not a clear distinction between the 2 caps being discussed. In one sentence it reads:"The cold cap is not yet available in the U.S. The frozen penguin caps which are rented can be ordered online." Huh???  What's most troublesome is why they bother to include the hiding cancer cell comment. When, in the next sentence, they write that it has been found to be "safe and effective." Additionally there have also been studies done in the U.S. concluding this.

    Well at least they got the PCC website correct :)

  • mdg
    mdg Member Posts: 1,468
    edited January 2012

    Here is the link:

     http://abclocal.go.com/wls/story?section=news/health&id=8503338

  • brax
    brax Member Posts: 52
    edited February 2012

    Hi Ladies,

    I am new to the boards, and am so glad I stumbled across this thread.  I have been researching these caps frantically for a week now.  I am glad to finally find a place where there seems to be a lot of women who have tried them.  I have seen on numerous posts that Frank is the person to talk to as he is a wealth of information. 

    I read where someone paid $200 for dry ice.  $200 x 16 treatments - That is a deal breaker!  How much ice would be needed for two coolers? (8 caps).  I will start calling around to see if someone would be willing to work with me at cost for the ice but I still do not even know how much I would need.  I am so glad I saw that post because I had read somewhere else that someone was paying approx $85 a treatment for the ice (which is still a lot but that is what I was figuring the cost to be -not $200Cry.

    Also, when people say they are losing 20 - 25% of their hair- Is that 20-25% coming out in patches?

    Sorry, I am nervous and have so many questions.

  • ali68
    ali68 Member Posts: 644
    edited January 2012

    Yesterday was day one of chemo and cold cap. Arrived at hospital for 10am, bloods at 10.30 am, doctor 12. Got seen at 5.30pm. They had trouble finding a vein in hand then it started to hurt so 45 mins later they took it out to try another. Four nurses tried and it hurt so had a little cry under my cold cap and scarf. 8.30pm got a vein in inside of arm which didn't hurt so we had to start again. 30 min's before chemo and two hrs after chemo finishes. Got home a 11.45pm. No side effects up till now with cold cap or chemo. I may have to have a line in next time as I have poor veins, also having cold cap didn't help.

  • ali68
    ali68 Member Posts: 644
    edited January 2012

    Forgot to say had the machine called Paxman and the caps were light and comfortable. It was very cold first 30 mins then it was fine. Not as bad as I thought it could have been a lot worse, depends how bad you want to keep your hair. Only down side can't go to loo so had a portable one, did I care no. Next time taking blanket, thicker socks, hot water bottle and something warm for my neck.

  • Laura5
    Laura5 Member Posts: 419
    edited January 2012

    brax, There is a non profit that will donate a biomed freezer to your cancer facility, if they will accept it. Mine did, (I had to work on them though) so no worry of dry ice for me. The website is: www.rapunzelproject.org 

    As far as caps with AC, I was not on that regimen, but I think many were and did fine. Good luck!

  • LeesaAnn
    LeesaAnn Member Posts: 40
    edited January 2012

    Brax, I use about 80lbs, 8 blocks of dry ice per chemo session to cool 8 caps. I get the ice from my local grocer and they sell the ice for .99 per pound. I believe the person who paid $200 used pellets.

    I'm getting a different treatment, TC x4, so I'm sorry I can't help with your other questions. 

    When do you start your treatment?

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