Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

Cold Caps Users Past and Present, to Save Hair

Options
134689717

Comments

  • Sea_nymph
    Sea_nymph Member Posts: 8
    edited November 2009
    Options

    NoSunshine,

    So you can feel frostbite from a burning sensation? Thats good. And you kept the caps on even throughout having that burning sensation? Do you still have hair in that injured area?

    -sea_n

  • Sea_nymph
    Sea_nymph Member Posts: 8
    edited November 2009
    Options

    Can-D, What is Latisse for the eyelashes?

    sea-n

  • arbella
    arbella Member Posts: 20
    edited November 2009
    Options

    hi ladies

    i am reading your posts..i am going to start my treatments in mid dec and am wanting to use the caps. i am a bit worried that they may not work but it seems as if they are for you all? also can you tell me more about not cutting hair? i have very thick and long hair which i was planning to cut thinking it would help but maybe not? do you pile it all in the cap? sorry  for so many questions...just nervous and would love to hear your wisdom.

    thank you, arbella

  • Can-D
    Can-D Member Posts: 27
    edited November 2009
    Options

    Se-nymph, Latisse is a susbstance that helps your eyelashes, and eyebrows, grow back.  It is expensive if you follow the manufactures instructions and use the applicators they provide; however, if you use a thin eyeliner brush, it will last 2 to 3 times longer and therefore, it is not but around $30 a month.  I started 3 weeks after my last chemo, around September 3 and just a few days ago refilled. I had absolutely no eyelashes and sparse eyebrows.  I have stopped putting it on my brow cuz they are back.  My lashes are very thick and black.  I would say they are longer than the average persons but not as long as they were, but they are still growing.  I'll post a pic

  • Sea_nymph
    Sea_nymph Member Posts: 8
    edited November 2009
    Options

    What is a thin eyeliner brush? Like one out of a liquid eyeliner bottle? Do they sell those by themselves? Did the Latisse change the color of your eyes?

  • Can-D
    Can-D Member Posts: 27
    edited November 2009
    Options

    No I haven't had any eye color change nor eye lid color change.  The brush I use came in a makeup brush kit; I could not find a thin brush by itself. I think I paid about $11 for the kit.

  • makingway
    makingway Member Posts: 465
    edited November 2009
    Options
    arbella-No, you do NOT pile up your hair in the cap. I helped a couple ladies with the caps. They both still have their hair.
  • MTG
    MTG Member Posts: 337
    edited November 2009
    Options

    Ladies,

    It's been ages since I've posted on this thread. After I got my oncotype score, I opted out of chemo however, I have a ton of research that can be used  - whether for your own information or to try to persuade a reluctant doc. So here it is:

    Three Companies:

    1. Penguin Cold Caps (based out of London but Offices in the US) http://www.msc-worldwide.com/index.html

    2. Paxman Coolers (based in London) http://www.paxman-coolers.co.uk/how-it-works/cooling-caps.asp

    3. Dignitana (based in Sweden) http://www.dignitana.com/page19822633.aspx

    Articles

    1. "Prevention of chemotherapy-induced hair loss by scalp cooling" E. G. Grevelman and W. P. M. BreedOxford Journals Annals of Oncology  Volume 16, Number 3 , Pp. 352-358  (published January 10, 2005), Attached, page 3. http://annonc.oxfordjournals.org/cgi/content/abstract/mdi088v1

    2.  "Prevention of chemotherapy-induced alopecia using an effective scalp cooling system" P.Katsimbri, A.Bamias, N.Pavlidis European Journal of Cancer 36  (2000) Pp. 766-771 (Published April 2000) Attached, page 15.     http://cat.inist.fr/?aModele=afficheN&cpsidt=1341687

    3.  "Effectiveness of cold cap in the prevention of docetaxel-induced alopecia"   
    M. Lemenager, S. Lecomte, M.E. Bonneterre, E. Bessa, J. Dauba, J. Bonneterre
    European Journal of Cancer February 1997 (Vol. 33, Issue 2, Pages 297-300) Attached Abstract, page 17.                                                                         http://www.ejcancer.info/article/S0959-8049(96)00374-7/abstract                                     See also: http://www.elastogel.es/pdffiles/effectiveness_of_cold_cap.pdf

    4. "Scalp hypothermia to prevent chemotherapy-induced alopecia is effective and safe: a pilot study of a new digitized scalp-cooling system used in 74 patients." Ridderheim et al. Support Care Cancer, 2003;11:371-7. Attached, page 18. http://www.ncbi.nlm.nih.gov/pubmed/12768403

    5. "Numerical Simulation of Scalp Cooling to Prevent Chemotherapy-InducedAlopecia" F. JanssenG. van Leeuwen, A. van Steenhoven  Attached, page 19 http://www.begellhouse.com/references/1bb331655c289a0a,5d7c6c6c58792bfa,1b91b8e361f34c97.html

    6. "A multicentre study to determine the efficacy and patient acceptability of the Paxman Scalp Cooler to prevent hair loss in patients receiving chemotherapy"
    European Journal of Oncology Nursing, Volume 8, Issue 2, Pages 121-130
    C.Massey

    http://linkinghub.elsevier.com/retrieve/pii/S1462388903000942

    See http://www.paxman-coolers.co.uk/files/multi-centre-study.pdf

    7. "Scalpcooling as a method of avoiding alopecia in cancer patients receiving chemotherapy"  Nina Firing de Vries, Ole Kristian Andersen

    See http://www.paxman-coolers.co.uk/files/Norwegian_Poster_without_photo.pdf

    8. "Scalp cooling in conjuction with chemotherapy" Anne Margrethe Jørgensen, RSN, Herning Hospital, Denmark

    See http://www.paxman-coolers.co.uk/files/Herning_Study.pdf

    Other articles/studies cited by Dignitana, http://www.dignitana.com/page171319.aspx

    Lundgren-Eriksson et al. Total prevention of taxoid-induced alopecia by a new model of cold cap, Eur J Cancer, 1999;35 (suppl 4): 376.

    Henriksen et al. Advanced, computerised cold cap for preventing chemotherapy induced alopecia. Eur J Cancer, 2003;1(5):369.

    Byahov. Alopecia prevention in chemotherapy patients. Methods of controlled scalp cooling. Meditsinskaya Cartoteka, 2006.

    Kato et al. Evaluation of DigniCapTM system for the prevention of chemotherapy induced hair loss in breast cancer patients. Poster: 16th Japanese Breast Cancer Society in Osaka, Sept 26-27, 2008.

  • Ang7
    Ang7 Member Posts: 568
    edited November 2009
    Options

    Thank you MTG!

    I am going to try the Cold Caps in December or January.  I am a bit nervous about it, but I figure it is certainly worth it to try and keep my hair.  I am going to be a "tester" for my oncologist who has not had anyone try them before now.

    Ang

  • makingway
    makingway Member Posts: 465
    edited November 2009
    Options

    That's awesome Ang! If you need instruction or help in any way, let me know. I would be happy to volunteer. I live in Orange County,so I'm not that far from you.

  • MTG
    MTG Member Posts: 337
    edited November 2009
    Options

    Ang - Hot Damn !!!!!  I'm so happy that your oncologist kept an open mind; she must be pretty awesome as well !!!!

    All - Now, this may be crossing into "not worth the trouble" territory, but FYI - there are also cold caps (not caps, I guess but bands) for EYEBROWS.  Just in case anyone's interested.

    FYI - although Ang and London Virginia already know - I hate, hate, hate that the US medical system, which considers itself so advanced, has very little knowledge about cold caps and that the vast majority of the women w/ cancer out there aren't even made aware that it's an option.

  • NoSunshine
    NoSunshine Member Posts: 66
    edited November 2009
    Options

    MTG--Thanks for posting all of the research on the cold caps.  I did quite a bit myself prior to ordering the Penguin Cold Caps...and so far they are doing very well.  I am receiving treatment at MD Anderson and my onc. told me they wouldn't work but that I could try them anyway.  I'm glad for once I didn't listen to him.  Everytime I go in for blood work, scans, etc. the nurses ask me how I've kept my hair and I'm alway giving out the website for the PCC's because they want to learn more about this for their patients.  The chemo nurses have told me that no one has ever worn them during chemo...so I guess I'm the first at MDA to try these.  I can't believe that the information is not more widespread about the fact that you can possibly keep your hair during chemo.  I get some crazy stares during chemo but I could care less...I don't look like a "cancer patient" during the rest of the time.  Thanks again....hopefully your collection of research articles will help others (docs included) to consider these.

  • shadow2356
    shadow2356 Member Posts: 93
    edited November 2009
    Options

    Thanks so much to all of you for posting about the cold caps. I have really long hair and I was worried about losing it. Then, after speaking to Frank I was worried about the money. My cousins from all over the US raised the money so I can do it! Isn't that aswesome? No one at my chemo place has ever used it. They are not against it but they are pretty skeptical. I am so happy to hear all of your stories. I start chemo Dec 5th.

    I wish everyone strength in their fight.

  • NewportLori
    NewportLori Member Posts: 35
    edited November 2009
    Options

    Ang7, I have completed my chemo and my 14 caps are available. If you live near Orange County, we could meet for you to pick them up.  "Makingway" helped me with my cold caps for all 6 of my treatments.  She is welcome to use all of the supplies that I bought for my PCC treatments (picnic coolers, timer, laser digital thermometer, extra batteries, etc.) . She also helped another  local mutual BC friend with PCCs and used my same supplies.  The only additional supply expense would be the dry ice needed to cool the caps beyond the lowest temps achievable by a home freezer and perhaps some additional 2.5 gallon Hefty zip bags.  Best wishes!

  • NewportLori
    NewportLori Member Posts: 35
    edited November 2009
    Options

    No Sunshine:  I had a similar experience.  My Onc had no problem with me trying the cold caps, but he had no experience with them.  One of the onc nurses at his office was extremely negative from her past experience with previous cooling cap attempts and kept saying they wouldn't work. 

    When I kept showing up with a full head of thick hair for many weeks, she was incredulous.  However, when I began to show some overall thinning after my 5th chemo treatment, she seemed estactic to comment about the thinning.  This nurse was just preconvinced that the caps wouldn't work.  Too bad for her. I was supposed to become completely bald after the first or second chemo, which never happened..

  • Katiefizz
    Katiefizz Member Posts: 1
    edited November 2009
    Options

    Hi All,

    Started chemo a couple of days ago & used the Penguin Cold Cap - can anyone recommend any gentle hair products that i can use on my hair after ive washed it for the first time? Ive got a gentle shampoo and I know only to use a small amount and not blow dry or straighten, just wondered if there were any gels or anything that were gentle enough to use?

    Many thanks

    Katie x

  • Ang7
    Ang7 Member Posts: 568
    edited November 2009
    Options

    Lori,

    Thanks so much for the offer but I actually live in Virginia.  Seeing your post makes me wish I lived in California as I could certainly use all the help I can get.  I am working with Frank to be sure that I can get the Cold Caps before my first chemo December 9th.

    Thanks for all of your support.

    Hugs,

    Ang

  • gmp300
    gmp300 Member Posts: 196
    edited November 2009
    Options

    Hello Everyone,

         Hope everyone had a nice turkey day!

    Katiefizz--Your only suppose to use Johnsons baby shampoo and no conditioner until after chemo.  That is because there are so many different chemicals in hair products that might not mix well with your chemo drugs because there is some residue in your follicles.  It is better to stick with the tried and true to be on the safe side.  It was hard for me to get use to that at first because my hair is long and on the dry side but I only washed it once or twice a week in cool water and combed it out gently.  When your hair is hanging on by a thread you don't want to do anything to distub that.  I actually got use to it and so did my hair!

    Ang7--Hello- I just want to let you know that you can still call me if you need any tips before your tx.  Glad your talking to Frank.  Good Luck!  Geralyn

    Newport Lori-  Hi there!  Isn't it amazing that the chemo nurses don't seem that excited as you would think they would be since they work with chemo patients all day long and see how devasting it is for them to loose their hair!  You would think they would be shouting it from the rooftops!  LOL!!  I just think that they don't want to be hassled with extra work!  Pretty selfish if you ask me!  Glad you kept your hair!  I haven't heard of anyone who hasn't yet!

    Take care everyone,

    Geralyn

  • Ang7
    Ang7 Member Posts: 568
    edited November 2009
    Options

    Hey Geralyn,

    Thanks -  I will give you a call...

    I spoke to Frank because I am concerned about the fact that I colored my hair in October.  He told me to talk to my hairdresser and see what she used so we could figure out a good Cold Cap regime.

    Ang

  • NewportLori
    NewportLori Member Posts: 35
    edited November 2009
    Options

    Geralyn, only one of the chemo nurses was negative - the others were either curious or said nothing.  My oncologist was impressed enough with my hair retention that he called me at home and asked if another patient could contact me about using the caps.  Of course I said yes.  However, she was scheduled to begin tx immediately and she and her husband decided to skip the attempt to save her hair so she wouldn't have any delay in begining tx.

    Although I still have quite a bit of head hair, it thinned so much after tx #s 5 and 6 that I now wear a wig or hat when I go out.  I also lost almost all of my eyebrows and some eyelashes along with virtually all of my other body hair. 

    There were multiple factors that likely contributed to my ultimate substantial thinning.  I did color my hair 3 weeks before beginning chemo (at that time I didn't know I would be using the PCCs).  Also, my head is much larger than average and the caps did not cool some sections sufficiently (e.g. nape of neck, around ears, temples and forehead hair line).  Lastly, because it was difficult to get the caps to cool in a uniform fashion using dry ice and picnic coolers, I chose to use caps that were often too cold in one part if they were in-range in other parts thinking that too cold was better than not cold enough.  In the end, I believe this was not the best choice.  When the caps are too cold, they are stiff and don't form well to the scalp.  Also, I did have some evidence of scalp burning from contact with sections that were too cold. 

    There were a few other things I think my wonderful helper and I could have done differently in retrospect, and I hope that my experience will help other women in the U.S. who have to try using "in the field" cooling methods.  Feel free to PM me if you have questions.

  • Ang7
    Ang7 Member Posts: 568
    edited November 2009
    Options

    Yikes Lori,

    Since I colored my hair in October do you still think it is worth it for me to try?

    Thanks,

    Ang

  • NewportLori
    NewportLori Member Posts: 35
    edited November 2009
    Options

    Ang7, I have no idea if the coloring of my hair 3 weeks before initiation of chemo contributed to the thinning I experienced following my 5th and 6th chemo cycles.  Other than the localized losses in the areas previously mentioned, my hair was doing really well until then and I never needed to wear any kind of head covering.  For some reason, my hair really thinned following my last two chemo cycles.

  • NoSunshine
    NoSunshine Member Posts: 66
    edited December 2009
    Options

    Hi All:

     Here are pictures taken yesterday...a little over 9 weeks out from the 1st chemo tx.  These were taken right before I left for my 3rd chemo.  I'm so nervous that I will experience more hair loss since I nearly had a meltdown 7 days after my last tx that caused a mass exodus of my hair...but you really can't tell unless I lift it up for people to see.  I agree with Newport Lori that I don't think the "in the field' method is consistent enough to maintain a lot of the hair.  I still have faith that this will work but I can't stand the "fright" that I have during each chemo.  My chemo nurse (a different one each time) told my last night that it's usually around the 2nd or 3rd tx (I'm on TCH) that causes a huge loss of hair....so I'm not sure if I've had that huge loss or not.  I don't think I could stand another big loss.  I also have had scalp burns the past two treatments but not too bad...all on the top of my head at the part and the last one just "scabbed" up and nothing happened...no hair loss in that area.  Last night I had another area around the part that started burning after I removed the last cap and my head started warming up...but I don't have the bruised feeling that I havd last time...so time will tell. 

    Can anyone tell me if they have hair start growing back during chemo?  I'm just curious and don't notice any of mine except my bangs growing.  I did have to trim my bangs this weekend and found it odd that I'd have to cut my hair during chemo.

    Day of Third Chemo" The day of 3rd chemo"

  • Ang7
    Ang7 Member Posts: 568
    edited December 2009
    Options

    Wow NoSunshine,

    Your hair looks great so far!  I am doing TCH also, starting next week.  I do not even know what to expect.  Hopefully my husband will make a good "helper."

  • CoolBreeze
    CoolBreeze Member Posts: 250
    edited December 2009
    Options

    NoSunshine - your hair looks great.  Nobody but you would even know you are missing any, and I completely understand why you want to keep it.

    I'm not doing the cold cap thing - found out about it too late, and don't think I have the patience and I hate the cold.

    But, we have something in common:

     My puppy.  :) 

  • NewportLori
    NewportLori Member Posts: 35
    edited December 2009
    Options

    No Sunshine, your hair is doing great!!!  My bangs didn't seem to grow during chemo, but some of the areas where I had substantial initial loss have some minimal regrowth along my neck hairline and in front of my ears that is now about 3/4" long.  I'm 3.5 weeks out from last chemo and am hoping for rapid regrowth.

    Best wishes for continued success!

  • shadow2356
    shadow2356 Member Posts: 93
    edited December 2009
    Options

    Hello Penguin Cold cap users. I am trying to get the cold caps sent to me. I am in NY and the woman who has them is in Rhode Island. She said there are 3 boxes with 4 each and one box with 2. Does anyone out there know the dimensions and weight of these boxes? I am getting desperate as my chemo starts Monday. Thanks

  • Ang7
    Ang7 Member Posts: 568
    edited December 2009
    Options

    MaryEllen,

    I spoke to Frank yesterday about getting my caps Fed Ex.  He said that each cap weighs 3 lbs. and that I should take the # of caps, multiply by 3 and give that weight to Fed Ex.  I don't know how they figure the boxes?

    Hope this helps some.  I need to get mine from Florida to Virginia by next Wednesday.

    Ang

  • Toddy
    Toddy Member Posts: 1
    edited December 2009
    Options

    Hi I am in New Zealand, my wife used these caps during her chemo, her treatment was (AC protocol) and they worked well, just little thinning as expected. If you hear about somebody in New Zealand who is looking for Penguin Cold Cap so the can save their hair, send them to http://www.penguincoldcaps.co.nz/

     Best of luck to you all

  • Can-D
    Can-D Member Posts: 27
    edited December 2009
    Options

    Ang 7, I too colored my hair right before chemo and although I thinned (posted in detail in older post..page 4) my hair immediately started to regrow.  I cut my hair myself after chemo and have pictures posted on older pages at 7 weeks post chemo. I am 3 months out now and my hair is very thick.  The texture is normal as well.  Also, I used Latisse and my lashes are very long, thick and black now. I recommend that as well.

    I have 2 caps at my home and am waiting on instruction from Frank as to where to send them so if any woman or man needs caps, please tell Frank that I could send you 2 caps.