Topic: Cold Caps and African-American Hair

Forum: Black Women or Men With Breast Cancer — Black Women with Breast Cancer who want to connect.

Posted on: Jun 4, 2013 10:55PM - edited Jun 4, 2013 11:01PM by kaydeesmiles

Posted on: Jun 4, 2013 10:55PM - edited Jun 4, 2013 11:01PM by kaydeesmiles

kaydeesmiles wrote:

Hello all,

I thought I'd start this thread to share my experience with cold caps and African-American hair. I just started chemo and would like to save some of my hair, and some sense of normalcy, if I can. BC has turned a lot of things upside down - and hanging onto a small part of myself would be encouraging.

There's a lot of information in the Cold Caps thread under Help Me Get Through Treatment.

http://community.breastcancer.org/forum/6/topic/735873?page=284#idx_8506

It's very good, and the ladies there are fantastic and very supportive. It's also a long thread and you have to sort of hunt and peck for the tidbits pertaining specifically to Black hair.

I've seen a few posts about the caps from 2009 and 2012 under the "African Americans with breast cancer" section (Shout out to pioneers TresBelle and Malaika) - I'm hoping to build on their efforts.

I'm happy to answer any questions you have about the experience and hope you'll share your stories and tips as well!

K

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Feb 17, 2018 04:43PM - edited Feb 17, 2018 04:44PM by FaithWalker22

Hey ladies! I am beginning my chemo journey next week and decided to use Dignicap. I have natural hair andappreciate your suggestions about wearing twists. I was wondering what to do with my hair so I'm glad I found this forum.

My regimen is 4 rounds of TC and Taxatore is known to be hard on hair folicles. For those of you who used a cooling cap, after your chemo was done did you have good results? How long did it take for your hair to come back?


Dx 9/29/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2-, Surgery 12/8/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 2/22/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Feb 24, 2018 07:02PM FaithWalker22 wrote:

As an update, I decided not to cold cap. I was going to try it (Artic) but after I really thought it about, it's a lot. I live alone and the hassle of getting 50 lbs of dry ice (my center doesn't have a freezer), storing the cooler in a well ventilated area for about 12 hrs before infusion, rolling it into the center, and then changing the caps every 20 minutes for 45 minutes before infusion, every 20 minutes during infusion and every 20 minutes for another 4 hours after chemo was daunting. I live 40 minutes from my center and that means I'd have to do about 2 changes in the car, My helper was willing to assist me at treatment but at home I'd be doing it all alone. And then dry ice needs to evaporate outdoors or in a well ventilated area. I don't have a patio or balcony on my apt for that and I didn't feel comfortable airing it out in a closed bedroom by a window.

For me (especially living alone) cold capping it was unnecessary stress. Plus, you can't really brush or comb your hair. For the duration of your treatment, you need to do minimal styling. I spoke to someone about black hair and they said our hair fairs well. It was recommended to keep the hair braided (no extensions) or twisted and limited washing. No wigs (except for short term special occasions) or hats so that your scalp stays cool. For me, I can't go 12 weeks (I have treatment once every 3 weeks) with natural braids or twists but that could just be me.

But if you can do it, I say rock on my sister! Hopefully you have the support to make it work. I just wish I knew all the itty bitty details before I got the kit. I should have asked for the video before I paid my money. The phone consult makes it seem easy but once you get the packet, it's a lot more to consider. I got the kit Wednesday and returned it unused today. It weighed 36 lbs (that includes the cooler it comes with. Imagine lifting that thing in your car once it has ice in it!) I know I'll get my deposit back but I may have to eat that first month payment ($379). Oh well, at least now I know and I can give others considering cold capping something to think about.

Dx 9/29/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2-, Surgery 12/8/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 2/22/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 25, 2019 07:55PM Tacoma38 wrote:

started chemo on the 22 of march and am using the cold caps. I don't think who ever invented these did so with African American type of hair in mind . I believe if you have a good grade possibly some benefit but clearly needs more study done for two types of hair as our hair is different but I will see how it gose. But just from the instructions . I can tell this dose not cater to african americans

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Apr 28, 2019 08:30AM - edited Apr 28, 2019 11:04AM by jajhoward

Hi Tacoma38, I am hoping someone answers your question. Cold caps did not work this spring for a dear, dear friend of mine—the mother of my god children. :( It was very disappointing. She has stage 3 breast cancer and is 10 weeks into an 28-week A&CT treatment. My friend has hair that is 4a with some 4c areas near the base of her skull. I could not find research that answers our questions about cold caps on different hair types. We understand that the success rate for cold caps has been highly variable between patients and their chemo, but still, it seems like the published research suggests that it works more effectively for patients we knew who are white or asian American. I have written a bunch of emails to researchers hoping they can point me to research that has looked at scalp cooling in reducing chemotherapy-induced alopecia in black women with very thick curly hair. I'll post here if they actually write me back.

If anyone has 4a/4c hair and experienced success with cold caps, I'd really appreciate to hear your story. I'm sorry you are walking through this tough diagnosis. XX OO

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Apr 28, 2019 08:32AM - edited Apr 28, 2019 08:33AM by jajhoward

Thanks for starting this thread. I'm following for a friend of mine. Sending everyone strength. XX OO JAJH

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May 4, 2019 06:40AM motherofmany wrote:

I did cold capping and I was successful...my chemo was taxotere and herceptin and I used penguin cold caps...i styled my hair naturally by using twist and it was the best thing I decided to do...it kept my self esteem and privacy, best of lu

Dx 5/2015, IDC, Left, 2cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR-, HER2- Dx 5/15/2015, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab)
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Feb 22, 2020 08:03AM NJSurvivor wrote:

I live in NJ in the States. I have HER2+ Stage 2 intraductal breast cancer in the right beast.

I had a consult with Sloan Kettering. They concurred with my oncolgy group who I decided to stay with. My surgeon is Sloan Kettering trained and I have an all female team with half being women of color.

I just completed the 4th of 6 rounds of TCHP.

I began Dignicap from the start. I had a cute short relaxed and semi permanent colored hair that was due for a touch up from my day of my diagnoses 12/3/19.

I stopped all chemicals, and the top of my hair was cornrowed. After the 2nd chemo cycle a lost a portion of the top of my hair. I was hysterical. I've modeled short styles for different hairstylist so this was a big blow for me. The cancer was too real.

My haistylist has trimmed my hair twice to try to blend it and allow missing hair to grow in.

I have had no more hair loss since. I use Wild growth oil to that area, sulfate/paraben free Cantu hair shampoo/conditioner/cowash/moisturizing spray and a mix of natural.oils on the rest of my hair.

I have had custom cut human hair wigs..which arent my thing. I wear African wraps, and stretch dress caps in public.

I'm hoping to preseve my follicles so my hair will grow and I can use light, curly twist om crochet braids. I wil go natural again using organic paraben free color whn my hair grows out.

I'd love to hear more and wish us all Godspeed on our journeies. We are not alone!

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Nov 27, 2020 07:02PM BlessedandHighlyFavored2018 wrote:

I will be starting TC x 4 next week. For those that have used Paxman, can you tell me how well it worked? I am natural and have thick hair at the roots. I am worried about getting good coverage. I plan to wet it well and put on conditioner. Any advise/tips would be most appreciated!

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Jan 25, 2022 09:53AM Nanderson18 wrote:

Hi everyone, my name is Nicole im 31 and I was recently diagnosed with stage 2 breast cancer. I started my treatment last Thursday (1/20/22) and was able to use the dignicap scalp cooling system (thankfully!) . I would love to know your experience with the cap and what styles you used in between treatments. My hair is natural but I typically wear silk press or sew ins. Would love to know what advice you have on this journey.

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Jan 24, 2023 02:09PM gratitude2023 wrote:

Hi All,

I’ll be having an AC + Taxol regimen. I’ve been told Penguin Cold Caps work best for AC. Any thoughts there? Also looking for general tips on using cold caps for 4B/4C hair.


Thank you!



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