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 12, 2012 05:54PM TheLadyGrey wrote:

I highlighted my hair a little over 6 months PFC with Aveda. I'd brag and say I researched it, but where I was Aveda was the only option. It does look like a choice worth considering -- mild formulas with well trained stylists (they go through a fairly rigorous Aveda program) and lots of salons. The stylist who colored my hair in July has a pet wolf -- you have to love that in a stylist.

My hair didn't look nearly as hideous as I expected after 9ish months of no color because it basically didn't grow. I had it colored July 19th and it hasn't grown enough to merit going back -- maybe a quarter inch? I have had it trimmed once since PFC, and am not seeing a reason to spend the $$$ to do so. It is too thin to do anything with besides a ponytail.

When I look at the slow growing pace, I'm doubly glad I used the caps. I finished chemo mid January and based on grow out, I would MAYBE have an inch and a half of hair at this point.

I think Herceptin and Tamoxifin may impact hair growth, although I was never told that. I'm balking at the AI though -- that one appears to for sure impact hair growth as well as pretty much everything else I'm scared of (besides a recurrence of course -- except I'm strangely not scared of that).

Surgery 10/9/2011 Mastectomy: Left; Reconstruction (left) Dx 11/1/2011, IDC, <1cm, Stage IB, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Targeted Therapy 11/11/2011 Herceptin (trastuzumab) Chemotherapy 11/18/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 2/29/2012
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Nov 13, 2012 05:31AM PatinMN wrote:

TheLadyGrey - interesting that your hair growth has been so minimal. I think you're right about Herceptin and tamoxifen inhibiting growth at least for some people. So far on Herceptin my hair continues to grow normally. My oncologist has told me that I will start tamoxifen after I'm finished with my year of Herceptin, and after reading your story I'm glad of that!

Dx 7/13/2012, IDC, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2+ Surgery 7/31/2012 Lumpectomy: Left Targeted Therapy 9/19/2012 Herceptin (trastuzumab) Chemotherapy 9/19/2012 Taxol (paclitaxel) Radiation Therapy 1/7/2013 Breast Hormonal Therapy 3/31/2013
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Nov 13, 2012 09:12PM Hortense wrote:

ndmk - Don't worry about chemo, it isn't as bad as you think it will be. I was surprised. It doesn't hurt going in and probably won't affect you for a day or so. My husband and I would walk ten blocks from our hotel to the chemo center the following morning so I could get my Neulasta shot, then walk back again, and I felt fine.

Be sure to ice your fingers and toes during your Taxotere infusion to prevent nail damage and ward of neuropathy - nerve damage. I just met someone who didn't and she lost every toenail and many finger nails. Ziplock bags of ice or frozen peas work very well.

I had 4 rounds of T/C spaced three weeks apart and did shed during it, starting around the second treatment. It was heaviest around the third treatment, then let up, only to start shedding in earnest three weeks after my final chemo. It lasted long enough to make me very nervous and thin out the volume of my hair - I still have full coverage. Shedding didn't end until sixteen weeks after that last chemo. Sixteen weeks seems to be a number other women have mentioned as how long their shedding lasted after chemo.

My shedding was uniform and didn't leave me with any bald spots. I have plenty of hair above my ears probably because my helper cleverly used Penguin's gel brow bands just below my caps to be certain I had full coverage. If you have a big head like I do, try using the browband trick too.

My hair continued to grow normally throughout chemo and I have long and healthy roots to prove it. They are about 4" now, six months after I started chemo. So it grew more than half an inch a month which is a very good rate. Much as I would like to color my hair back to my usual blonde, I am going to wait the full six months after my final chemo.

301724 - I had two frost bite spots the size of quarters because we had the caps too cold the first time. They should have been at -32 C. We were more careful after that and had no more trouble. Both spots lost all of their hair, which was upsetting at the time, but they healed up quickly and to my surprise started vigorously regrowing hair right away. I'd been afraid I might be left with two permanently bald spots, but that didn't happen.

By the time I went for my final chemo I think I had about half an inch of growth, enough to cover the bald spots anyway. The only thing is the new hair in those two spots came in very dark which I have never had before. It's pretty funny.

Check your frostbites spots carefully, when mine started to grow I thought I was just feeling more flakes of skin, but what I was feeling turned out to be new hairs - an army of them. 

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 14, 2012 02:42PM ndmk wrote:

hortense, thank you for writing up your experience.  I was going to forgo icing my toes and fingers but after reading your post, frozen peas is now on my shopping list.  I am also going to order the eyebrow bands. I was going to pass on it since its an additional $100 a month but I figure I'm going this far to save my hair... 

sebm9, I actually emailed you prior to me posting on this forum! :)  thank you so much for your write up.  It was very inspiring and all my friends have it in their PCC binder for the day of chemo!! 

Surgery 8/29/2012 Lumpectomy: Left Chemotherapy 11/19/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx IDC, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2- Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Nov 14, 2012 04:37PM 301724 wrote:

Just back from chemo session #3 and into last 2 hours of cold caps. My husband (the engineer) has been using a thermocouple to check the temps and the variation in different parts of the cap are crazy. Hope we're managing to stay in the 'sweet spot.' Speaking of spots, have been using gauze on my frostbitten places from session #1 and adding more as needed for spots that feel too cold. This causes me more angst than anything else!

‘The greatest use of a life is to spend it on something that will outlast it.’ William James
Cold cap user
Dx 6/22/2012, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Surgery 8/15/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 10/3/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/30/2013 Aromasin (exemestane)
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Nov 14, 2012 07:24PM mdg wrote:

Hey girls - I have been helping a gal out using cold caps and she is 14 after her first TC treatment.  She has a very dry scalp - like a film on her scalp.  I know some of you had that...I did not.  Any information on it?  Is it dandruff?  Did you rinse with anything special to get rid of it?   Did you leave it alone or what??? I think some gals a long time ago on these threads talked about rinsing with vinegar or something.....any information would be helpful.  She is worried about it....I know some others have had that too. 

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 12/22/2010 Lumpectomy: Right Surgery 1/26/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 3/2/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/18/2011 Surgery 6/21/2011 Reconstruction (left); Reconstruction (right) Surgery 12/9/2011 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Nov 14, 2012 07:55PM Lmflynn wrote:

Hi Maria, I had this really bad... I have naturally oily hair and with the lack of washing got bad build up...horrible scales....Frank recommended adding apple cider vinegar to shampoo - pour shampoo on hand add ACV mix it a little and then put on hair.... I did this and it helped, I also started washing every 3-4 days. Hope this helps...Lisa

Dx 7/12/2010, IDC, <1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2- Chemotherapy 11/12/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 15, 2012 10:38AM Hortense wrote:

mdg- I got it too. Tell her to try not to worry. I think it's a bit like craddle cap, which is a form of dandruff that's scaley. 

At her delicate stage - if you meant she's just 14 days past her first treatment - she is at the point when women who are not using cold caps start to lose their hair, so she's at her most precarious time and when she has to be most cautious. I wouldn't do more than wash gently every 3 - 4 days, letting the shampoo soak a bit longer and rinsing it out extra carefully. Vinegar didn't do much for me, but it's worth trying as everyone's different. Washing more often did seem to help.

What finally helped me was using my fingers to gently massage my scalp during shampooing to loosen the scales - which is how cradle cap is loosened, but I would strongly warn against her doing it right now. I did it nearer my third treatment.  

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 15, 2012 12:19PM - edited Nov 15, 2012 10:05PM by makingway

Hi all cold cap users! I sent an email to the moderators of bc.org asking that they please include the cold cap thread under this topic, where it would most likely be first found. http://www.breastcancer.org/treatment/side_effects/hair_changes

Will you please also send them a message? The word needs to get out to those who've been newly diagnosed! Because of poor marketing it isn't! I can hardly believe that after 3 years in the US most people still aren't aware that this technology exists...To send a message to the Moderators follow this link http://www.breastcancer.org/utils/contact_comments.php

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 15, 2012 10:08PM makingway wrote:

I edited my post above to include how to send a message to the Moderators. I simply followed the 'Newly Diagnosed' thread until I found a 'Contact Us' link at the bottom of a page. http://www.breastcancer.org/utils/contact_comments.php

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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