Nov 18, 2012 12:14AM mdg wrote:

Susan - First of all - hi neighbor!  I am in the west burbs!  The caps can be put on and do cover the whole head so yes - you can move around with them on.  I know the caps I used (Pengiun cold caps) are not for sale.  We rent them to use during chemo.  There are some other one's I think you can buy...I am not sure which one's for sure.  Maybe Elastogels...anyone else use something other than PCC's that can offer info?

Nov 18, 2012 01:06PM Hortense wrote:

susan3 - These are a lot colder than ice packs. Water freezes at 32 degrees F and these caps are at -26 degrees F

Nov 19, 2012 11:21AM Hortense wrote:

makingway - Following your excellent prompt about writing the Moderators about Cold Caps - thanks for posting it! - I did write them again a few days ago. Here are my letters followed by their responses: 

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" Information about keeping hair during chemo

from Hortense Nov 17, 2012 03:06 PM

Please post information about Cold Cap Therapy on the page devoted to "Hair Changes". It only mentions hair loss - as if it is a given, an absolute, which it no longer is - and does not say that there is also the possiblity of keeping hair through Chemotherapy by using Cold Cap Therapy. I used Cold Caps this summer and they really do work. I still have my hair and I have met others at my breast center who have used them successfully also.

I came very close to choosing not to have chemo as I didn't want to lose my hair and, in fact, had cancelled my first infusion at Memorial Sloan Kettering. I ended up moving to NY Hospital's Weill Cornell Breast Center in order to be able to use cold caps, and am so glad that I did. The center has had more than forty woman use them there and was very supportive.

Women reeling from a diagnosis of Breast Cancer turn to this site for information. They should be able to find out that there IS an alternative to the trauma of losing their hair during chemo and the "Hair Changes" page seems a logical place to have it.

Cold caps are widely used in Europe and their use is spreading here. You could post the website of the non-profit organization the Rapunzel Project as a source of information about keeping hair during chemotherapy: www.rapunzelproject.org This would allow women to do their own research and make their own decisions about if cold cap therapy is right for them or not.

Thank you.

~~~~~~~~~

Hi Hortense,

Thanks for your message. Our editorial team is actually in the process of adding that information to our core content as we speak, given the attention that Cold Cap Therapy will be receiving at the San Antonio Breast Cancer Symposium this December. Once those results are presented, our content will be updated.

Thank you!

--The Mods

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• RE: Information about keeping hair during chemo
• from Hortense Nov 17, 2012 05:48 PM

  I would like to encourage you to speak to Dr Anne Moore, Medical Director of New York Hospital's Weill Cornell Breast Center at (212) 821-0550, as she is currently doing a non- clinical cold cap study at her breast center. I have been part of it. www.weillcornell.org/annemoore/

  My surgeon at Memorial Sloan Kettering, Dr Alexandra Heerdt, called her about them after I defected hospitals and was fascinated by what she learned, and by the material Dr Moore sent her. From what I gathered from Dr Heerdt, she shared that information with colleagues higher up at MSK, and it seems that MSK is getting interested and may soon start some clinical studies. 

   

Hortense, thank you for the information.

Judith and the Mods"

Nov 19, 2012 02:02PM schoolmom wrote:

Two weeks post tx one......minimal shedding.....seriously, when I washed my shoulder length hair I always shed.....but not now.  Hopefully this is a good thing.  Next infusion in one week.  Hopefully, the caps are working.  I ordered my dry ice for next Sunday.  I want to be excited but cautious. 

Nov 19, 2012 09:35PM makingway wrote:

Tylm-Where are you having your chemotherapy? I recommend shampooing twice per week. Shampooing only once per week doesn't maintain a clean scalp. You want the pores to be clear, to aide in removing toxins etc. For best results follow my Shampooing Instructions http://www.penguincoldcap.net/ Many have said they have an itchy scalp or the feeling that the hair has been in a tight ponytail all day. Women NOT using the cold caps experience this also. Shedding can occur 14-21 days following chemotherapy treatment. It's a very individualized experience. Some have no shedding at all, others experience it after their 2nd treatment. Still others don't have any thinning until after all chemo treatments have been completed. Hang in there. By your 3rd treatment you'll probably find your hair has actually continued to grow WHILE in treatment. You might even see new hair growth where it was lost.