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 04:04PM

Posted on: Jun 14, 2009 04:04PM

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 17, 2012 04:44AM Laura5 wrote:

I tried sending a message, but I kept getting an error message about not using header text or HTML markup. I ended up PM-ing the mods.

Dx 6/3/2011, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2+ Chemotherapy 8/24/2011 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 17, 2012 10:39AM Hortense wrote:

That's a perfect spot. I have corresponded with them about making cold cap information easier to find a few times. They made a few changes as a result, but seem reluctant to post it so prominently. I will write them again.

My OBGYN didn't know about cold caps and because I had my hair had no idea I had just finished chemo. He thought I must have had radiation only after surgery. He was fascinated and is looking into them now.

Cold Cap user - kept my hair Dx 1/24/2012, IDC, 1cm, Stage II, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 2/28/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/7/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/23/2012 Breast Hormonal Therapy 10/15/2012 Arimidex (anastrozole)
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Nov 17, 2012 11:26AM Laura5 wrote:

I heard back from the mods, they are waiting for the San Antonio Breast Cancer Symposium this December. They wrote..."Once those results are presented, our content will be updated."

Dx 6/3/2011, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2+ Chemotherapy 8/24/2011 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 17, 2012 11:37AM dancetrancer wrote:

Very interesting Laura.  I just went to the SABCS site to see what studies are going to be released regarding scalp cooling.  Here's what I found:

Efficacy and safety of scalp cooling (SC) treatment for alopecia prevention in women receiving chemotherapy (CTX) for breast cancer (BC).

ALOPREV : first cooling scalp trial for prevention of persisting alopecia after docetaxel for early breast cancer patients.



Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Nov 17, 2012 05:35PM Laura5 wrote:

Dance, I sure hope they used Penguin for their studies.

Dx 6/3/2011, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2+ Chemotherapy 8/24/2011 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 17, 2012 07:33PM youngmomtofour wrote:

ndmk--I just turned 32 and had my first taxo/herceptin/carboplatin nov 15. aside from being a bit tired, and having a stomach that isn't wanting to eat much other than rice or buttered bread, or apples!(like after you have had a flu)..... I was expecting a lot worse. I had myself not being able to breathe I was so anxious about it--It was then I realized that if my mind could make breathing hard, am I not allowing it to take over me? Not any longer!! I will crush these dumb cells!

We used the penguin cold caps. be prepared that they are incredibly cold when you first put them on--have someone massage your shoulders(I didn't try the aleve as I was worried with all the other pre-meds I had to take) it does dissipate. the worst part so far I think is that my hair is SSSSOOOO greasy.

I am sort of on the opposite spectrum as you--I had 4 kids by the time I was 30. I have decided--that I will not get sick from this--that this will NOT define me---and that I will NOT lose my fertility over it, either! and so far, I think it is working! keep your head up, you can do this! I saw a girl younger than me at Lowe's today, who appeared to have her hair growing back from chemo--there are a lot more of us young ones than we realize who have this---and your mind can do amazing things--put it to good use!

Dx 9/1/2012, 1/5 nodes, ER+/PR+, HER2+
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Nov 17, 2012 07:34PM youngmomtofour wrote:

ladies, thoughts on what brand ( and where to get thermometers) I had a terrible thought into cap tem checking--what if the batteries die, or this is just wrong(although I cannot imagine anyone could have it on any colder---it was incredibly cold)so I thought I should get a second thermometer.

Dx 9/1/2012, 1/5 nodes, ER+/PR+, HER2+
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Nov 17, 2012 07:42PM susan3 wrote:

i haven't read all the threads, sorry. i wonder if the caps would help me with my headaches???? i am icing a lot. the caps might be easier. my whole head hurts when i get them , ummmmmm

Live and love fully Dx 3/2001, IDC, Stage IV, Grade 3, 40/5 nodes, ER+/PR-, HER2-
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Nov 17, 2012 08:03PM Hortense wrote:

youngmomof - My helper always brought two thermometers and extra batteries in case one gave out or the batteries failed. Definitely test the caps becasue they can be too cold. That's how I got two frostbite spots. The caps were too cold at -38C, but once we had them at -32C where Penguin said they should be, they were fine.



susan3 - I am so sorry, but I couldn't understand what you meant. It wasn't clear to me. Are you using cold caps during chemo and getting headaches from them? If so, take two Tylenol about 20 minutes before putting on your first cap. I never got a headache and I always used Tylenol.

Cold Cap user - kept my hair Dx 1/24/2012, IDC, 1cm, Stage II, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 2/28/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/7/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/23/2012 Breast Hormonal Therapy 10/15/2012 Arimidex (anastrozole)
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Nov 17, 2012 08:50PM susan3 wrote:

hortense, sorry, took something to sleep and not always clear..lol  no, caps are not giving me headaches. never heard of the caps before i stumbled across this site. i get a lot of headaches from meds and stuff, and stress. i was wondering if they could be better then my ice packs. and i wouldn't have to lay down, i could walk around with them on, right??????

Live and love fully Dx 3/2001, IDC, Stage IV, Grade 3, 40/5 nodes, ER+/PR-, HER2-

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