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 06:04PM

Posted on: Jun 14, 2009 06:04PM

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 19, 2012 10:09PM Tlym wrote:

Makingway-I just realized I previously read your instructions and have been following your protocol. Hope the shedding slows down. It seems like more hair sheds everytime I just touch my head! Off for a wash. Wish me luck!

BRCA2 Dx 7/3/2012, IDC, <1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 9/4/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 11/1/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 19, 2012 11:37PM - edited Nov 19, 2012 11:37PM by makingway

Tylm-I hope the shedding slows also. I know how distressing it can be, especially on shampoo days because it seems much more comes out. Partly because we're not brushing, combing, styling and shampooing as we normally have so the accumulation between shampoos seems greater. At what temperature are you using the caps? Is someone checking their temps prior to each cap change?

Almost forgot-Good Luck! :)

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 11:42PM - edited Nov 19, 2012 11:48PM by Hortense

Tlym - Poor girl, scarey as it is, try not to worry. Everyone seems to shed during cold cap therapy, but the amounts seem to differ. I shed a lot and it was upsetting, especially when it started, because until it happens, it is impossible to really understand what "shedding" means. I had thought it simply meant a few more hairs than normal would fall out. I had no idea that hairs would be falling out steadily all day long for months or that I would lose 50 to 100 or more during a shampoo.

Take a deep breath and reassure yourself that while you will lose some hair, you will not lose all of it. You have over 100,000 hairs on your head, so losing 50, 100, even 200 a day will not make a dent. Shed hair comes off evenly so that it is not noticeable, you will not be left with bald spots.

Be super careful to be gentle when you shampoo right now. I used a hand held sprayer on low and a gentle setting in the shower or sometimes I would use the sprayer in the kitchen sink on a low volume. Use cool to cold water in as gentle a spray or stream as you can manage, deflecting it with your other hand to keep from having a hard spray directly hit your scalp. 

I found that parting my long hair and then wetting it so that the hair remained hanging straight down on either sides of my head throughout the shampoo, rather than piling it up on my head as I used to do, worked best and left me with the least tangling. Whatever you do don't rub or massage your hair, just pat or smoosh the shampoo through it. Let it sit a few minutes while you shower or bathe to allow the shampoo to work, then carefully rinse the shampoo out leaving your hair hanging straight. Pat on some conditioner then rinse it out also without rubbing. Drape a towel over your head and gently blot your hair dry with gentle pats without rubbing or moving the towel so you do not put any stress on your folicles. Comb out the wet hair gingerly starting at the bottom. If you need to use a hair dryer, only use the cool setting. No warm air, except on longer ends away from the scalp.

I had some nasty tangling during my first shampoo after starting to shed as hairs that had weakened or almost shed but not come out intertwined with the rest of my hair and formed big snarls. The problem was that I had gently massaged my hair to clean my scalp which was itching like yours - a bad decision on my part. Do your best to not disturb your hair as you cleanse it to limit tangling. It took forever to comb out my hair and I lost a lot that I probably would not have had I been more careful.

I would pick up fairly large amounts of hair from the bathmat after each shampoo compared to what I lost pre-chemo - I kept two samples of pre-chemo shampoo hair loss to compare with which was helpful as a reference. It was unsettling, but while I seemed to lose a lot each shampoo I always had full coverage on my head.

If you are following Penguin protocol, you will be fine. Have faith!

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 20, 2012 01:38AM Tlym wrote:

Makingway-We are using the caps at -32C and checking them with a digital thermometer when they come out of the freezer. We practiced with the caps at home everyday for one week prior to infusion, so my helpers were well experienced and knew how to get a nice snug fit on my head, so I don't think there was anything we could have done differently. Made it through the washing tonight and have been letting hair air dry. Itching seems to have gone away but still shedding. There was definitely a significant amount of shedding today prior to washing so I know it's from the chemo and not my normal shedding amount. Hope it will slow down soon. Thanks for the wish of luck. I know you have a lot of experience, so I'm going to have faith and trust in this process.

Hortense-Thanks so much for the advice and words of encouragement. As much as I had expected the shedding, like you, I don't think I was completely prepared for the amount that would be coming out. I have been collecting it in a ziploc, and to keep things in perspective, it really is only about 1/2 a snack bag's worth of hair. It's just disconcerting to see strands of 5 or 6 hairs at a time slide right off my head! And I keep finding more on my shoulders and falling onto my pillow. I will try to shampoo every 3-4 days rather than every 5-6 days to keep my scalp from getting congested and maybe that will help. I have long fine, wavy hair and lots of it, so hopefully the shedding will only be noticeable to me and my close friends and family. I know many cold cap ladies have said they lost somewhere in the range of 25-30% of their hair overall, results of which would make me very happy!

BRCA2 Dx 7/3/2012, IDC, <1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 9/4/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 11/1/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 20, 2012 07:58AM 301724 wrote:

I will be having my fourth (and last!) TC session on 12/5. My MO is thrilled with the PCC. When I went for my infusion this past week, the first thing she said was, "Look at your hair!"

I've asked for permission to film the cap choreography during my next session. And was just contacted by the cancer center who asked if I'd consider being featured in one of their publications. Go PCC! So pleased to have opportunities to get the word out. I'm the first one at my center to use the caps.

‘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 20, 2012 08:01AM dancetrancer wrote:

301724 - that is so AWESOME!  I wish my onc was so responsive.  I basically got a reluctant "nod head" when I said "see my hair?"   I don't think he liked being proved wrong, or else, he just was more concerned about my difficult side effects/distracted.  Probably a combo of both.  

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 20, 2012 12:07PM makingway wrote:

Tylm-Keep the faith!

301724-That's great your center is responsive to the importance of cold cap therapy. It's use can play such a huge part in the wellness of women. Too many clinics/hospitals I've been in have had the attitude of that of  dancetrancers experience. I attribute it to the lack of caring, knowledge, and frankly us cold capper's are just in their way. Does anybody else find it odd that WE are the ones who care enough to do the research? It really doesn't take much effort...

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 20, 2012 01:12PM - edited Nov 20, 2012 01:13PM by Hortense

Tlym - I kept bags of my hair, one for each shampoo, and just tossed all of them a week ago. Your shedding sounds similar to mine. I always had five or more hairs sliding down which can get disconcerting. Try to accept that it is a normal part of the process. Don't let it demoralize you. You really will be fine.

Good for you to agree to be in the centers publication! 

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 20, 2012 09:22PM susan3 wrote:

thanks for the info on the cold caps eveyone. my treatments are changing tomorrow, a/a stopped working, so the headaches will prob stop too. wish me luck!!!!!!

Live and love fully Dx 3/2001, IDC, Stage IV, Grade 3, 40/5 nodes, ER+/PR-, HER2-
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Nov 21, 2012 12:22AM Tlym wrote:

Thanks, Makingway and Hortense. Hairs still keep sliding off my head today, but I'm trying not to get neurotic about it. I think I've lost a few hundred hairs over the past few days, but I don't think anybody can even tell my hair looks different. It's still nice and full, so I'll keep the faith. Other ladies on my November chemo thread (non cold caps users) who started later than me have been losing their hair in clumps, so I'm thankful mine is more of a slow shed.

BRCA2 Dx 7/3/2012, IDC, <1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 9/4/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 11/1/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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