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Cold Caps Users Past and Present, to Save Hair

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Comments

  • ordinarymammal
    ordinarymammal Member Posts: 29
    edited June 2010

    I got 11 pounds of dry ice, and practiced with my helper today preparing for Thursday's first infusion.  I'm still waiting to hear from Frank with my instructions, specifically what temperature the caps should be.  He has been so busy lately; it takes him a while to get back to me, and I'm getting nervous.

    Can anyone help clarify what temp the caps should be when applied to the head.

    I have normal or thinning hair.

    I have heard -35 deg Celsius and -31 deg Celsius.  I'm especially curious, as I pointed the thermometer at the dry ice, which came in chunks, and it only read -39 degrees Celsius.  Of course, the outside might be the warm part.  Seems like I'll have to have the caps in the dry ice a long time to get it down to -35 degrees.

    Many thanks.  

  • cheyenna
    cheyenna Member Posts: 119
    edited June 2010
    Well ladies, looks like ill be on TCx4 then Tamoxifen!!!, ill know what date ill start Thursday...Im feeling good about my #2 ONC, he seems to fit right in with all my research.... Im so glad to hear your all doing well!!! I cannot thank you enough for the help and advice i have recieved from you all!!! it is absolutely amazing how much i have learned!!! and god forbid we ever have to do this again, ill be right here.Anyways i should be getting my caps soon!!! ill let you know soon...GAgirl01 ill be right there with you kicking chemo ass!!! Smile
  • sebm9
    sebm9 Member Posts: 488
    edited June 2010

    Hi ordinarymammal,

    I got to meet Grace this weekend as we're sharing the caps and coolers, overlapping her first treatment this week with my last treatment coming up.Glad you are all set up and ready to go!

    The temp you'll want your caps is customized depending on your hair thickness, coarseness, protocol, etc.; it's part of the info (including the post-infusion time) that Frank will send you. My protocol was -35 degrees and 4 hours after infusion. You have somewhat thinner hair so you might have a slightly lower temperature and/or length of time post-infusion.

    Since your treatment is coming up, please remind him that you are starting in a couple of days so he sends you your instructions! I know you already have :-)

    (This paragraph from  the scientist in the house:) The caps usually take at least 3 hours to get to -35 or so; we put ours in the night before primarily so that chemo morning isn't quite as frantic. Dry ice itself is -79C whether blocks or pellets; if you were measuring your ice and it was in plastic, or if you weren't very close to it with the laser thermometer, you'll show  a warmer temp. The thermometer we gave you will show "max" when it is so cold it doesn't register. 

     Hope this helps!

    cheyenna: Congratulations on deciding on your protocol! So glad you are happy with your course of treatment. You will do great! 

    Best,

    Susan 

  • gmp300
    gmp300 Member Posts: 196
    edited June 2010

    Ordinarymammal-  The temperature of the caps can very depending on the thickness of hair and also the chemo regiman.  Everyone may differ a bit.  If your hair is thicker you'll want the caps cold to get the coldness to the scalp and if it is thinner-then maybe not so cold.  Frank Fronda can advice you on the temperature that suites you and your regimen.

    Kelli-You Rock!!

    Drim-Yes color is nice!!  I should of done it a long time ago!!  Just to scared-but the wash out (no peroxide/ammonia) color looks fine and a few highlights blends it all together!  There is a website for natural hair colors and highlights.  I have to find the site but try looking up-- Natural Tints.  It's a site were you can order all these different hair colors and highlights that are all natural. 

    Cheyenne-Your going to do fine!!!  Before you know it it will be behind you and you'll be giving others advice!!

    GolferGirl-Yes I seen the article-Kelli sent it to me.  I called them to do a follow up story about Michigan!  There are lots of us here with great success stories and the first Trial was done here!  We have to keep pushing the word out!!!

    California Girls!--Ha-there are alot in California-California is rockin too!!

    Everyone --Keep up the great work! I love how we can help each other get thru this journey and help each other.  And knowing that we are all spreading the word that you can get thru it with hair is so amazing.  I can't wait for everyone to know!

    Take Care,

    Geralyn

  • cmz
    cmz Member Posts: 31
    edited June 2010

    Thanks so much, Shadow.  Glad all is going well with you.  I will continue to try to contact Frank.

     cmz

  • Drim
    Drim Member Posts: 134
    edited June 2010

    GAgirl and Cheyenna - Congratulations to both of you. I know how great it feels to have the final chemo decisions made! I'm so thrilled you guys have joined the cold cap band wagon!

    OrdinaryMammal - Good luck tomorrow! Hopefully by now you have heard from Frank. My protocol was -30 degrees and I have medium thickness so you most likely will not need a lower than -30C temp. Also, he said to keep the caps on 4 hours past chemo. I think he is recommending longer cap times now leading to better results. He will also need to tell you how long you need to have the caps on before treatment starts. Mine was 20/20/10 = 50 min beforehand.  Please let us know how it goes.

    Today I had my first herceptin treatment. So far so good. Glad I don't need caps for that. Right now I'm on day 29 and all is well with the hair (except it's a mess). I feel like the last few days I've been shedding more hair that usual but it's definitely not noticeable in any way.

  • Drim
    Drim Member Posts: 134
    edited June 2010

    GAgirl and Cheyenna - Congratulations! It's so great to have the chemo decisions behind you. I'm so glad you both joined the cold cap bandwagon.

    OrdinaryMammal - Hopefully you were able to reach Frank but if not....my protocol was -30C and I have medium hair so you will probably not need it colder than that. I also needed to wear my caps 4 hours after. I think this is his new protocol to get better results. Lastly, I needed to have my caps on 50 min beforehand to make sure my scalp was sufficiently cool before chemo started. Please let us know how it goes and good luck tomorrow!

    GolferGirl - a friend of mine at work sent me that article. I'm so glad that word is getting out about the caps.

    I just got back from my first Herceptin treatment and everything went smoothly. I'm glad I don't need to do the caps for that. I'm on Day 29 of TC and so far so good with the hair (except that it's kinda messy). Definitely more strands than usual these last few days but not noticable at all.

  • cmksocal
    cmksocal Member Posts: 163
    edited June 2010

    Thanks for the welcome messages.  There is a change of plans from my 6/3 post. Rather than starting chemo (TC 3 weeks x 4), I had the the node biopsy done first... All nodes were negative!  Two Sentinel nodes and 3 axillary nodes were checked).   I meet the onc on 6/30 when I assume I'll get the details on the start of chemo.  The onc is fine with me doing the PCC.

    So now  I need to get moving on finding the equipment.  My husband is thinking only an infrared thermometer will work very well.  I know several people mentioned having these.  Where did you get one?  Since I live in Los Angeles, there ought to be someplace nearby.

    Colleen

  • ordinarymammal
    ordinarymammal Member Posts: 29
    edited June 2010

    sebm9  looks incredible!  She should start a new career parading through oncology offices and flipping her hair around in slo-mo to earn commisions on cold cap rentals.  She'd make a fortune.  Up until meeting her, I hadn't seriously believed I might keep my hair, but that I'd kick myself if I didn't at least try.  Now, I'm very hopeful. And many thanks to you and your in-house scientist for all the demonstration, advice, tips, and encouragement. 

    gmp and Drim I'm trying hard not to call and email Frank every 10 minutes to get my protocol.  I think he might be overwhelmed by busy-ness (for instance, I had to email him the cold cap forms several times). So if he is too busy to get back to me, it's nice to have an idea of what everyone else is doing.  I don't know that this is an exact science yet, so I'm trying to stay in the range of what works for everyone else.  Thanks for your responses.

    I started the decadron today and find myself unfit for human company--too amped and obsessional.  Time to leash up the smallest house mammal, get outside, and move!

  • GAgirl01
    GAgirl01 Member Posts: 53
    edited June 2010

    Hi Ladies!  Today was my educational appt. with my MO: it was great! I feel amped up and ready to go.  I'm hoping to be able to get with Carl/Frank regarding the caps quickly. With the change in my chemo. regimen from TCH to Taxol/Herceptin it makes several adjustments to the protocol.  I talked with Frank this morning before my appt. but didn't have all of the exact particulars (now I'm fully armed).  My MO wants me to start chemo as early as Tues. (6/15/10)...I hope this is enough time for the PCC's!  I already have the coolers, etc. and the list of things from Frank.  We were ready to go based off of TCH, SO glad to be changing, but concerned about the caps now.  I guess it's in HIS hands...HE knows every hair on our head...I'm counting on it ;0}   It's always wonderful to read ALL of the success stories; keep up the great work!

  • cheyenna
    cheyenna Member Posts: 119
    edited June 2010
    I just heard my caps should be here on friday Smile I have no directions yet. anyone know what kind of ice chest, and what else ill need, i talked to Frank Monday and he is on his way to the US so im sure ill get something from him soon on what all ill need... im just getting a lil worried i wont have it all together in time...thanks
  • gmp300
    gmp300 Member Posts: 196
    edited June 2010

    Hello Cheyenne-you have my number!  I can go over everything when you get the caps.  Anyone waiting on Frank should be hearing from him soon!

    Thanks

    Geralyn

  • cmz
    cmz Member Posts: 31
    edited June 2010

    Hello!  Is anyone in the Washington, DC metro area using cold caps right now?  Maybe we could share.  I'm not having much luck getting ahold of Frank.  Thanks much!

    cmz

  • GolferGirl
    GolferGirl Member Posts: 57
    edited June 2010

    Day 11 post TC #2 and I still have my hair!  yay!  I read on Rapunzel.org to use Kenra spray on conditioner everyday while doing treatment with the caps, but that product contains parabens which are bad for ER+ cancers.  So I looked around and found another leave in conditioner that does not contain parabens.  It's pretty expensive, but doesn't have a lot of chemicals.  Its called Ojan revitalizing mist.  Ojan also makes an alcohol-free hair spray I've been usign a bit.   I love both of these products and so far, for me, they have been working on my poor dried out hair. Seems I have less shedding since I started using them a few days ago.  Just a tip.  I know these aren't Frank approved and everyone reacts differently, but my hair was sooooo dry and these seem to be helping and not harming so thought I'd pass on the good news. 

    Cheyenna and Ordinarymammal, so glad everythign seems to be coming together for your treatements and the caps!  You will be so happy you did them!

    cmz- hang in there!  I don't think Frank has missed anyone yet.  I'm sure you will hear from him in time.  good luck!

  • cheyenna
    cheyenna Member Posts: 119
    edited June 2010
    Damn, things might be changing for me, now they thinking AC x4 then T x12... they all keep coming back because of the size of my tumor!!! 2.6cm im sorry i know you have all heard it before, they all leaving it up to me to decide!!!!BC SUCKS!!! i will be doing the walk in Redding calif this weekend, that should be fun and in a few hours i have my feel good look good class... that should stop the tears!!!  lol I really miss my mom more the ever and wish she was alive with me....thanks girls, at least i know my caps are on the way, and so is Frank Fronda to the USA..yea!!! also his brother carl is at email as well and is wonderful..Smile
  • cmz
    cmz Member Posts: 31
    edited June 2010

    Thanks GolferGirl.  I'll keep trying.  cmz

  • cmz
    cmz Member Posts: 31
    edited June 2010

    I see the caps seem to work well for TC x 4 every three weeks.  Has anyone had any success with AC x 4 over eight weeks?

     Thanks! 

  • GolferGirl
    GolferGirl Member Posts: 57
    edited June 2010

    I just tried to load my profile picture.  Hopefully it worked.   This picture was taken 3 days ago (Sunday) when my Book Club went to see Sex and City 2 (sometimes we like movies better than books!).  Anyway, as you can see, I still have hair!  And this was after being rained on.  :)

  • cmz
    cmz Member Posts: 31
    edited June 2010

    Hello GolferGirl,

    You were right.  Frank called last night and was very nice.  Have a good day.

    cmz

  • Drim
    Drim Member Posts: 134
    edited June 2010

    GolferGirl - Very nice picture! Thanks for the hair tips. I actually did get the Kenra based on that Rapunzel recommendation but maybe I'll try Ojan. Seems nothing is good for ER+ people. It definitely helps but my hair is getting to be more and more like a haystack (I'm still loving that). Your hair sure looks good in that picture.

    I'm happy to report that after about a week of what I considered to be excessive strands, it has stopped and returned to normal shedding. I'm guessing the excess hair is what got damaged by TC #1. There is no way you can tell. I can't even tell. But boy is the gray getting out of hand!

    Good luck to everyone who's about to start!!!

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited June 2010

    CMZ:  I used the PCC's with AC x 4 (eight weeks total) and then T x 4 (eight weeks also) and had success.  My hair did thin out and I had a couple small bald spots but I believe is was due to not using the caps right with the 1st treatment.  Right now I am 10 weeks PFC and I my hair is really starting to grow back where I had the bald spots. I have been wearing headbands where I lost some hair and you can't really tell that I had chemo.  I didn't even tell some people at work I was going through chemo until 5 weeks after I was done and they all said they couldn't tell!!

     If you have any questions about using the PCC's with AC or Taxol I would be more than happy to answer you or anyone else about my experience with them.

    All in All I am glad I used them.  They gave me something else to think about through the treatments and now I still have my hair.

    Good Luck to everyone....

    PS. I am going for my first hair "trim" this weekend just to clean up the split ends.  It has been 9 months since I had my last haircut and boy do I need it.

  • gmp300
    gmp300 Member Posts: 196
    edited June 2010

    Hello Everyone,

         Something new to report!  I just talked to a man about his sister who had 1 treatment of chemo (not sure what kind) and lost her hair.  She started using the PCC'S her 2nd treatment and thru out her treatments to protect her hair follicles and stimulate growth.  Her hair started growing thruout her treatments and by the time she finished her chemo her hair grew about 1 - 2 inches and she has full coverage and it is growing in nicely.  Another reason to cool your head!!

    Take Care,

    Geralyn

  • cmz
    cmz Member Posts: 31
    edited June 2010

    Thanks so much for writing back!  Glad you had such good results.  Best wishes for your continued good health.

    CMZ

  • GolferGirl
    GolferGirl Member Posts: 57
    edited June 2010

    Drim - Thanks!   I got rained on just before that picture, but my new philosphy is "Any hair day is a  good hair day!"  So I'm trying not to let the mousy-brown, no highlights, overgrown haystack get to me.  I love the "birds nest" name, too.  So true!   But, the Ojon has been helping, I think.  In all reality, I am very, very happy to have my hair, even if its not quite as nice as I'd like it be, so ladies thinking about the caps, don't let my whining scare you.   And I think I am actually getting better at styiling it without washing or blow drying as this process goes along.

    More bad news for ER+, I saw a nutritionist last week and she said to avoid soy protein isolate which, of course, is in all my favorite breakfast bars.  I've found a few without, but I sure miss those Luna Bar s'mores!   She also said that we all have estrogen in our tissues and that alcohol stirs that up, so even after treatment, best to avoid alcohol.  Fortunatley, I'm not much of a drinker, but I'm not really sure you can eat Mexican (my favorite) without a beer or margarita!  I'm hoping 1 or 2 every now and then won't make a difference.

    Hope you all have a great weekend!

  • ordinarymammal
    ordinarymammal Member Posts: 29
    edited June 2010

    Used the caps for the first treatment yesterday, in their own boxes in three coolers, with 100# dry ice, and it was very complicated.  The freezing was very uneven, and unfolding the caps from the box to get the gel exposed to air for warming was a slow, delicate problem  Some caps had to come out up to 45 minutes before being used  My helper was awesome, but we did end up frostburning a spot right at the front hair line.

    Hopefully I'll have gotten some hair protective benefit  Thinking thinking thinking how I could score one of the freezers the Rapunzel Project recommends for doing cold caps.

    When I get off my mellow ativaned backside today, I'll start trying to get something going. With me being the first in this area, the nurses and oncs are on wait and see.  Probably won't be able to generate any excitement until after I'm done. 

  • Drim
    Drim Member Posts: 134
    edited June 2010

    Ordinarymammal - so sorry to hear you had so much trouble. I highly recommend the ziploc freezer bags and layering them flat between the dry ice (pellets would be best). I don't think you really need cardboard and newspaper. They do get cold but you can take them out 10-15 min before hand and knead them and they are fine - pretty even temperatures in all sections. I think getting a freezer in your center would take quite a bit of time. We are trying to get one in my center as well. You should also be putting something like moleskin on your forehead to avoid frostbite there. I'm sure even though you had issues your results will be better than you think.

  • sebm9
    sebm9 Member Posts: 488
    edited June 2010

    Hi all,

    For the NoCal users on the list, here is the info from Frank for a gathering in the Bay Area on Sunday, June 20. Please note the RSVP info below, and oncologists/nurses are also welcome to be invited.

    Best,

    Susan 

    ----

    (from Frank) 

    You are cordially invited to attend a get together of past and present Penguin Cold Cap Users along with your partner and Oncologist.

    It will be the first meeting of its kind with so many Penguin Cold Cap users assembled under one roof who kept their hair using the Penguin Cold Caps during their chemo. The idea behind the meeting is to give everyone who has or is using the Penguin Cold Caps an opportunity of meeting each other and share their experiences

    Dr. Hope Rugo of UCSF will be present and other Oncologists have been invited. I, of course, will be delighted to meet everybody many of whom I have spoken with over the telephone and have got to know well.

    "The  Gathering" will be held on Sunday 20th June 2010 at 10am finishing at around 1pm at

    The Ranch
    22877  Mission Blvd.
    Hayward, California 94541

    Brunch will be served

    I do hope you are able to attend but please let me know by e-mail (penguincoldcaps@btinternet.com) by Thursday June 17th 2010

    I wish you well

    Sincerely

    Frank Fronda 

  • MomduMatt
    MomduMatt Member Posts: 2
    edited June 2010

    Good Morning All,

    I am anticipating having to go through chemo and radiation, per surgeon, while I anxiously anticipate my second surgery to "clear margins" this Friday at Lenox Hill Hospital in NYC.  

    Grateful for having been told my cancer is the least life-threatening kind, I am sooo scared about chemo and have deep sadness about losing my beautiful, thick long hair. (I know I shouldn't be vain at a time like this but I'm being honest and open.)

    I just found this "miraculous" section on your "psyche-saving" website,  where all your info on the "Cold Cap" gives me an inkling of hope that I could keep my hair.  As yet, I have not even met my medical oncologist and will know more re: post-surgery chemo/rad treatments after Friday's surgery and pathology report.

    My questions in preparation is (esp. to Drim): Are there NYC resources for these Cold Caps?  How should I best prepare to acquire and use these CC?

    I'd love to hear from NYC ladies with advice about locat resources.  Thank you all for sharing your courage, caring spirit and wisdom.  Your support group means so much to me...I am scared and still walking around in shock a little over one month after my mammogram discovery of cancer (apparently stage 1-early 2ish).  Beyond the vanity of hair-loss, my main heartache is I was prepping to help my son, a HS Jr, to look at colleges and feel such guilt if I can and all responsibility goes on beloved husband/Dad's shoulders.  Also, have been helping two sets of our aging parents.  I guess this emotional segment of my Cancer Show should go onto another thread.

    Prayers and Blessings to you all.

  • shadow2356
    shadow2356 Member Posts: 93
    edited June 2010

    Hi MomduMatt-

    There really haven't been too many NYC users. Frank told me I was the first in the area to use them (on LI). Since then we have had Claudia, also from LI and Ditah (Drim) in NYC. I am surprised there haven't been many considering the high population and the high BC incidence.

    Your best bet is to email Frank Fronda and the people at Penguin Cold Caps. They will give you tons of info and figure out how to get the caps to you in time.

    They really do work! I am finished and have all my hair. My eyebrows are almost back to normal too.

    Good luck!!

    MaryEllen

  • MomduMatt
    MomduMatt Member Posts: 2
    edited June 2010

    Hi MaryEllen,
    Thank you so much for responding so quickly with helpful info.  I'm so happy that you are finished with your treatments and wish you a lifetime of health.

    I'll contact Frank even before I have the specifics just to get a "head" (no pun intended) start.

    Will be interesting to hear what my MDs say as I ask them about the "cold cap".  Certainly will share here for NYC and area people.

    Have a beautiful day.Kiss

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