Topic: Cold Caps Users Past and Present, to Save Hair

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

Posted on: Jun 14, 2009 07:04PM

Posted on: Jun 14, 2009 07:04PM

Can-D wrote:

Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair.  I am on FEC100 X3 followed by Taxotere X3.  My dosage unfortunately is not a guaranteed success.  I am 40 days out from my first treatment and will have my third June 17.  So far I have thinned but have not required a wig.  I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there.  All in all, I am pleased to still have a good covering.  If you are using or have used the Cold Caps, I would love to hear your experience.  Take care, Candy

FEC100 X3 followed by Taxotere X3, Bilateral Mx w/ immediate reconstruction..Wake Me Up When September Ends!!! Dx 3/19/2009, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2-
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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?

Maria Visit my BC Blog at breastcancerwontdefineme.blogs... Dx 12/13/2010, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/23/2010 Lumpectomy: Right Surgery 1/27/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 3/3/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/19/2011 Surgery 6/22/2011 Reconstruction (left); Reconstruction (right) Surgery 12/10/2011 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Nov 18, 2012 08:08AM Laura5 wrote:

I am helping a lady who is using Elastogel. She purchased them from Amazon. http://www.amazon.com/Elasto-Gel-Chemotherapy-Hypothermia-Cranial-Resistant/dp/B000YC9LOU/ref=sr_1_cc_1?s=aps&ie=UTF8&qid=1353243795&sr=1-1-catcorr&keywords=elastogel+for+chemo  There are also a couple of others on there not intended for chemo, and probably don't get as cold I suppose.

youngmother, I had one thermometer, but carried extra batteries. Before long, your hair won't be nearly as greasy.

Dx 6/3/2011, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2+ Chemotherapy 8/25/2011 Carboplatin (Paraplatin), Taxotere (docetaxel)
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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

Cold Cap user - kept my hair Dx 1/24/2012, IDC, 1cm, Stage II, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 2/29/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/8/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/24/2012 Breast Hormonal Therapy 10/16/2012 Arimidex (anastrozole)
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Nov 19, 2012 01:56AM makingway wrote:

Thanks! Laura, Dancetrancer, Hortense for sending messages to the Moderators asking them to post information about Cold Cap Therapy. I don't know why they are waiting... There has already been published clinical trials presented at the San Antonio Breast Cancer Symposium in 2009 http://www.abstracts2view.com/sabcs09/viewp.php?nu=p5040

http://www.abstracts2view.com/sabcs09/view.php?nu=SABCS09L_1975

susan3-Elastogel caps can be bought instead of rented. The Elastogel advertisement shows they can be used for migrane sufferers.

Visit my website for helpful tips when using cold caps:penguincoldcap.wix.com/help Dx 3/2/2009, ILC, 4cm, Stage IIB, Grade 2, 1/19 nodes, ER+/PR+, HER2-
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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: 

~~~~~~~~~~~

" 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

~~~~~~~~

  • 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"

Cold Cap user - kept my hair Dx 1/24/2012, IDC, 1cm, Stage II, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 2/29/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/8/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/24/2012 Breast Hormonal Therapy 10/16/2012 Arimidex (anastrozole)
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Nov 19, 2012 01:42PM makingway wrote:

Awesome Hortense!!! I couldn't have said it better myself. Your message was both personal, and concise. Brings to mind one of my favorite quotes, "Be the change you want to see in the World". Thanks for making a difference :)

Visit my website for helpful tips when using cold caps:penguincoldcap.wix.com/help Dx 3/2/2009, ILC, 4cm, Stage IIB, Grade 2, 1/19 nodes, ER+/PR+, HER2-
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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. 

saved my hair with cold caps with oncotype 21 Dx 9/12/2012, IDC, Left, 1cm, Stage IB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 9/28/2012 Lumpectomy: Left Surgery 9/28/2012 Lymph node removal: Left, Sentinel Chemotherapy 11/5/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/28/2013 3DCRT: Breast Hormonal Therapy 3/21/2013 Arimidex (anastrozole) Dx 11/6/2017, IDC, Left, Stage IV, metastasized to bone/liver Targeted Therapy 12/1/2017 Ibrance (palbociclib) Targeted Therapy 12/1/2017 Hormonal Therapy Arimidex (anastrozole), Femara (letrozole)
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Nov 19, 2012 08:29PM Tlym wrote:

Using Penguin cold caps with deep freezer at my infusion center. Have been vey careful with hair washing, only 1-2x/week with cool water and no heat appliances. 17 days after first TC and have had a really itchy scalp and lots of shedding today-maybe 50+ hairs that just slide right off my head. I have a fair amount of long wavy hair but getting concerned. Will the shedding slow down? I REALLY need to wash (been almost a week) but scared to lose more hair!

BRCA2 Dx 7/3/2012, IDC, <1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 9/5/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 11/2/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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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.

Visit my website for helpful tips when using cold caps:penguincoldcap.wix.com/help Dx 3/2/2009, ILC, 4cm, Stage IIB, Grade 2, 1/19 nodes, ER+/PR+, HER2-
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Nov 19, 2012 09:57PM Tlym wrote:

Makingway-I'm at UCSF. I have been going about 5 days between shampoos, but the shedding has me scared to wash this week! I wouldn't say my head feels sore like a tight ponytail, just itchy. I'll take a look at your washing instructions. I definitely feel like I have to wash tonight, even if I do continue to shed. Frown

BRCA2 Dx 7/3/2012, IDC, <1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 9/5/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 11/2/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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