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 24, 2012 10:55AM SLB11 wrote:

Hortense- Thank you u for all the info! I've ordered the caps and they are on the way. I have read over the instructions and shopping list. I'm planning on going next week to get everything. I just want to make sure that in case I cant find something then I have time to order it on amazon. I did highlight my hair on Nov. 13. I had no idea I wasn't suppose to color it. :-( at least my hair still has another week before I start the chemo. I've been using dermorganics shampoo and conditioner. I think I've read that a few women use that also. Anyone have any recommendations for leave in conditioner?

301724- thank you so much for all the tips!! So instead of changing the part you suggest combing the hair straight back? This gives me hope that I will get through this.

Dx 9/11/2012, IDC, <1cm, Stage IA, Grade 3, 0/0 nodes, ER+/PR+, HER2+ Surgery 10/17/2012 Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 12/2/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/6/2013 Herceptin (trastuzumab) Surgery 2/13/2013 Reconstruction (left); Reconstruction (right) Dx 3/7/2014, IDC, Left, Stage IIIA, Grade 3, 3/10 nodes, ER+/PR+, HER2+ Surgery 4/6/2014 Lymph node removal: Left, Underarm/Axillary Radiation Therapy Whole breast: Breast, Lymph nodes Chemotherapy Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab)
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Nov 24, 2012 11:50AM schoolmom wrote:

Loafer:  So sorry to hear about the hair shedding.  I am new to this and on day 20.  Next chemo on Monday.  I did not shed at all the past month, even with hair washing.  On Thursday, day 18, I started shedding and continued yesterday and today.....minimal really.  Maybe 10-15 after washing Thursday and a few noticeable on my clothes during the day. 

Maybe you should contact geralyn at penguin cold caps and see what she suggests/thinks.  Good luck

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 24, 2012 12:12PM Loafer wrote:

Thanks school mom! I am just about ready to give up on this. It's expensive, time consuming and I'm still losing the majority of my hair. I've been using a helper who has been leaving the caps on for four hours after each chemo treatment - been through two so far- so it's quite an ordeal. I am losing enough hair to make a wig - it's embarrassing to go out with all the hair on my clothes - my house is covered in hair! Before treatment, I shed a lot, in treatment I'm minimally in the thousands with full trash cans. I did have very thick hair which is why my Onc thought I would be a good candidate. No bald spots yet, just massive hair loss, and serious thinning. Still holding out some hope.... Hoping a haircut will help.

Dx 8/18/2012, IDC, 1cm, Stage I, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/16/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 11/1/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/4/2013 Breast
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Nov 24, 2012 01:28PM makingway wrote:

Please, please, please follow my suggestions. I have a lot of experience with the cold caps. The suggestions I give are the result of it.

* Do NOT comb the hair back. Let hair fall down naturally. Use hair to provide cover for the ears-women that use other cover for the ears generally lose hair around them.

* Do NOT cut hair.

* Do NOT use a leave in conditioner.

Loafer-I am surprised at the amount of hair loss you are experiencing. Send me a private message and I will help to figure out what can be done to prevent anymore.

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 24, 2012 02:15PM 301724 wrote:

Thanks, Makingway. You have tons of experience. I had heard from others that combing back from the forehead - not the sides - made sense if one had bangs. It seemed logical and I think, could have helped me, but maybe not.

‘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 24, 2012 04:41PM Loafer wrote:

Thanks all. I've already cut my hair from mid-back to chin length - really had no other options - if I wanted to leave the house. My hairdresser was beside herself with the hair falling out. She only wet it down and cut straight across - did not blow it dry for fear more would come out - its winter here too! She said the majority of loss is around base of neck and ears. I don't pull it back (except for a bobby pin to get it out of my face) and use the required organic shampoo/conditioner. I wear nothing on my head and sleep on a satin pillow case. I did speak to my helper ( who has never had anyone fail) and she's being very supportive. Said it should stop falling out any day now....

Dx 8/18/2012, IDC, 1cm, Stage I, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/16/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 11/1/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/4/2013 Breast
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Nov 24, 2012 04:43PM Tlym wrote:

Loafer-I am also at day 22 and despite strictly following the cold caps protocol, am experiencing excessive hair loss as well. My quart size ziploc is now half full and hair has thinned considerably. I still have lots on my head, but hair as I know it has ceased to exist. Strangers have no idea, but those who know me can see the difference. If it would just stay at the current condition, I would be fine. But I'm worried it's going to continue shedding, and at this rate, I'm not sure what will be left by the end of chemo! I had a complete meltdown while washing my hair this morning and ran out to Nordstrom and bought a few loose berets. They don't fit snugly on my head but cover the top enough that on non-washing days I can pop one on and look halfway decent. Having tx#2 on Monday and worried about additional hair loss but will continue with cold caps and have faith in this process.

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 24, 2012 11:34PM - edited Nov 24, 2012 11:41PM by Hortense

Loafer and Tlym- You may be fine. You both are at the exact time people start to shed - between the 18th and 24th day according to my breast center, which warned me to expect shedding. Though until it started, I really did not understand what "sheding" meant.

Mine started about the 21st day, slowly for a few days, then it seemed to always be falling out which was disconcerting. Hair was everywhere around my house, just like you describe. It was all over my clothes, my bureau, floor, furniture and fell into my food. I would scoop up a handful after each shampoo (using DermOrganic also) which I put in baggies.  It certainly seemed excessive at the time, but I think it was simply the oldest, weakest hairs falling out after the chemo hit them, which I had been told would happen.

The heaviest shedding let up somewhat after the third treatment and, while it did not stop, it did slow down and I tried to relax enough to accept it. I shed more heavily again three weeks after my chemo ended for a few weeks before it slowed down again. Hair kept falling out until 16 weeks post final chemo when it stopped.

At times I wondered if I would go bald, but I didn't. My hair has thinned out, but did so uniformly all over my head so that I do not have any bald spots. It does not look the way it did before chemo - thick and healthy, but I do have full coverage which for me is much better than being bald. I have shortened it a bit, half an inch at a time, because it was looking straggly plus it had continued to grow throughout my chemo treatments and needed a trim.

I have lots of new hair growing from the follicles that shed. If I lift a section I can see it is far thicker at the base from the scalp up an inch or so because of all those new hairs. My growth is very apparent because it is my natural color, not my chemically lightened color. The old hair strands have natural colored roots that are a full four inches long now, meaning that they had kept growing vigorously through chemo because of the protection given by cold caps.

Had I not used cold caps I would have lost every hair on my head by the 21st day and been bald. Now, at four months post chemo, I would be anxiously waiting for my hair to regrow enough  to cover the baldness. As it is, I do have hair covering my head. It is not gorgeous - in part because I can not color my roots, but it is there still and I am so happy to have it. I can see new hairs coming in to thicken what I have, and in another two months I will be able to color my roots to get back to the overall blonde color I am accustomed to seeing. 

I would rather have some bad hair days to complain to myself about than go bald. Or much worse, discover that I was one of the unlucky percentage that never regrow their hair. I know someone who can only grow a few wisps of hair because chemo damaged her follicles so badly. 

Stick with the cold caps, try not to panic about shedding and trust that, as long as you follow the cold cap protocol exactly, you will keep your hair enough to have full coverage. You have 100,000 hairs on your head normally, you can lose a lot and still have enough hair to look presentable.

Good luck!

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 25, 2012 07:02AM Loafer wrote:

Thanks for the encouragement Hortace and Tlym! had been shedding all along and finally when it came out in fistfuls I had enough. I have bald patches around ears and back of neck area - my hair looks nothing like it did before - the mid-back length fell out since that was attached to my lower head. I looked in the mirror and what was mid-back lenght was now choppy shoulder length. That was when i said enough is enough and got a hair cut. Maybe the caps didn't reach these areas - not sure. I do have hair and new growth on the top of my head ( lots of grey in my part) and feel good about my decision to cut to chin length. Who knows, I may be coloring soon too - have nothing to lose :).

Best of luck to you Tlym on your second treatment! Mine was Wednesday before Thanksgiving and side effects are better than first - just tired. Hugs to you!!

Dx 8/18/2012, IDC, 1cm, Stage I, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/16/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 11/1/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/4/2013 Breast
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Nov 25, 2012 11:05AM Tlym wrote:

Loafer-My bald patches are on the front top sides of my head, exactly where there is a seam in the caps. I have long hair, so I'm able to do a middle part and cover those spots. The back of my head and behind ears, where most people seem to lose hair, are perfectly intact. Guess my helpers did a great job of fitting the caps to the usually troublesome areas. Never would have guessed I'd lose hair on top. I'm glad to hear your side effects are better this time. Get plenty of rest and hugs to you too!

Hortense-Thank you so much for your support. I am grateful to still have a full head of hair, thin, but it does cover my head and looks great from the back. Many of the women on my November chemo board are struggling with shaving their heads and ill-fitting wigs, so I'm thankful I'm just contending with lots of shedding. Can't wait for the day when I'm in your position and waiting to color my hair!

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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