Black Women with Breast Cancer who want to connect.
Posted on: Jun 5, 2013 01:55AM - edited Jun 5, 2013 02:01AM by kaydeesmiles
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.
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!
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Sep 8, 2013 11:07PM kaydeesmiles wrote:
Hi there HYDavis42 - this is kaydee
Are you doing the cold caps along with your chemo? I was really apprehensive about the chemo too. One of the best things you can do for yourself is to make sure you are super hydrated. I tried to get 2 1/2 to 3 liters of water down in the days before and after chemo. Also make sure you take the anti-nausea meds a directed the day before, day of, and day after to ward off the queasiness.
The infusion process itself is not painful - but many of us felt bad a couple of days afterward. If you are cold-capping it actually takes your mind off the chemo process itself.
Good luck to you and hold on.... you will get through this.
I'm wishing you all the best.
Sep 10, 2013 11:00PM Hydavis42 wrote:
Thanks Kaydeesmiles im not doing the cold caps mainly because im cold natured anyway and i just cant bear the thought of freezing while going through this. Did you do the cold caps and did they work for you? I will drink plenty of water tomorrow because my treatments start 9/12 and plenty afterwards to try and flush it out of me soon as possible. I have 4 dose dense treatments of AC and Cytoxan together followed by 4 treatments of Taxol...Whew I am holding on......
Sep 11, 2013 11:40PM kaydeesmiles wrote:
Hang in there Hy - you can do this. I was terrified and it was difficult on some days - but I made it through and am getting ready for radiation.
I am pleased with the results of the cold caps. I had no delusions that I would be able to keep all my hair. It is much thinner than normal. But I don't have any large bald spots and I have enough coverage to not have to wear a wig and that was my goal. You know that lady at church whose wig is always on crooked? Well, that would be me, I just know it. I just don't have the skills. Before all of this I mostly just pulled my own hair up in a bun and kept it pushing.
I will be thinking of you on Thursday and sending you many good vibes.
Dec 23, 2014 08:49PM tdiva22 wrote:
I am thinking about using the cold caps when I start chemo in January. I have mid back length thick natural hair (4C) and I am worried that the cold wont be able to get past all of this hair to cool my scalp enough. How did you guys style your hair so that it fit under the cap? Also, would it be OK to wrap my hair during the day when I go out since I wont be able to style it and I don't want it looking like a hot mess. Any other tips/advice would be appreciated. Thanks!
Dec 23, 2014 09:48PM Moderators wrote:
You may find the article on Cold Caps from the BCO main site to be of interest, even if no specific mention of African-American users.
We wish you all the best with your hair retention.
Dec 24, 2014 02:15AM kaydeesmiles wrote:
tdiva - i also had somewhat thick natural hair when I started chemo. i too was concerned about the cold reaching my scalp. i had my hair blown straight before my first round of chemo/caps. after that i did not. my helpers made sure to massage the caps as the got warmer when on my head.
wrapping your hair will likely put some stress on it and you want to avoid that as much as possible. i ended up just tying scarves loosely around my head to cover my hair.
in had ok results i would say. i did lose a lot of hair - but i had a lot of hair. i definitely had some patchiness by the end of my chemo. but i do feel my hair benefitted from the caps. it grew back quickly and my curl pattern did not change.
Keep in mind if your protocol includes adriamycin it will be harder on your hair.
The very best of luck to you,
Dec 28, 2014 08:43AM tdiva22 wrote:
Thanks for the info kaydeesmiles. Did you use penguin cold caps or the elastro gels? Also how did you where your hair under the cold caps? I was thinking about braiding mine so the cold can get to my scalp but I didn't know if that would be too much since my hair will be fragile.
Dec 28, 2014 09:30AM Akevia wrote:
I used elastro cold caps and I braided my hair in single braids all over for my head for treatment. My hair was natural also, you have to wet your hair before you put the caps on. I savedmost of my hair so I wouldn't have to wear a wig but 5 months later my Doctor wanted my to take a stronger chemo and I decided that I didn't want to do the cold caps again. Good luck
Jan 13, 2015 07:44AM - edited Jan 13, 2015 07:46AM by kaydeesmiles
tdiva - i did the penguin cold caps. i had my hair straightened with heat a couple of days before my first infusion so that it would fit under the cap.
after that i had some significant thinning (although i was never completely bald) and had no problems getting it under the cap. i think akevia's method of the single braid is probably smarter as long as the braids are VERY loose. penguin tells you not to use heat or do anything that would put tension on the hair (like braids) but what are we to do to get the hair in the cap ya know?
Jul 9, 2016 04:33PM Highlyfavoured wrote:
I was diagnosed in December 2015. Gone through 4 rounds of EC and 4 rounds of Docetaxol. Had my last round a week ago and I thank God every day for getting me through this and still being able to keep up with my full time job.
I have been stalking this forum since my diagnosis and found a wealth of information that has got me through this "mess" (that's what I am calling this). After my last round of Taxol I decided that I needed to give back to the community by sharing my experience, particularly on cold capping for afro hair. Hopefully I can help another sister through their "mess".
After my diagnosis I scoured the internet for information on cold capping on afro hair. Needless to say there is very little information.deelightful post was the most informative and helpful so special shout out to her.
From the get go I wanted to do all I could to save my hair because I did not want the outward appearance of breast cancer. I worked full time throughout my treatment, and the only person at my work that knew what I was going through was my direct manager.
The advantage we have over other races is that wearing weaves, wigs, hair extension is not unusual in the black community. I just went with the same wig i used to wear prior to chemo. I would normally leave out 3-4 cm of hair in the front to cover my wig. So my goal was to ensure i could save enough hair to make a decent leave out. My hair is natural.
Actually I better mention that I live in London and was treated under the NHS Guys hospital. I had my chemo every 3 weeks on a Friday. The cold cap is a free option and it is the type that is attached to a cooling machine.
Prepping the hair.
The first chemo round, I did not know you have to prep your hair. Nurse came round with some random conditioner and coated my hair as much as she could. Bless her, she did what she could. Successive sessions, I would prep my hair myself. I would put my hair in 8 chunky twists, completely smother and saturate my hair with Tresemme moisture conditioner, then go in with a generous helping of coconut oil.
We quickly realised that afro hair requires the largest cap size. Remember once wet our hair tends to swell. The cap needs to fit snugly on the head ensuring the top of the cap is in contact with the head.
There are different brands out there with different timings so please check your specification. Generally, because our hair is thicker it is recommended that we stay longer with the cap. This was explained to me at my second round by a Chinese nurse. This was important information for me because I had 8 treatments, administered by 8 different nurses. Only one had an inkling about our hair and how it behaves. In the end we added 30 minutes extra. So I had the cap on 1hr 30mins before chemo, during chemo and 45mins after chemo.
Taking care of hair
After treatment on Friday, I would go home and sleep, sleep and sleep. Saturday I would wash my hair with head and shoulders (I have a scalp issue) while my hair is still in the chunky twist.
After washing, undo each twist and coat it generously with deep conditioner and coconut oil. Detangling each section with my fingers and removing any shed hair. Be warned, there will be a lot more shed than usual and it will be distressing to see.
I tend to cover my hair with a shower cap and leave it for the whole day, more due to laziness than need.
After I rinse off the deep conditioner the next step is to coat each section generously with leave-in conditioner and Jamaican caster oil. At this stage I also get out my denham brush and thoroughly detangle each section. Again you will see more hair come out. Re-twist each section, pin each down and that's it. I leave it until the next chemo session. This way I manipulated my hair just once every three weeks.
Hair loss is going to happen. The best that cold capping can do is stop you from losing all your hair. I think i lost about 40% of my hair, but the loss was spread evenly across my head so I did not have bald spots. The loss did not affect the appearance of the hair i left outside of the wig. Chemo tends to loosen the kinks in afro hair so it blended well with my wig
Funny thing, there is distinct difference between the length of the hair left out and the hair that was protected under the wig. The hair left out grew faster and is considerably longer. Go figure. So all the noise in our community about protective styling to grow hair is bull.
I do have some before and after pictures but attempts to upload them failed. I will come back to this if i do figure it out.
And i second deelightful. DRINK, DRINK, DRINK and DRINK. When you think you have drunk enough, drink more. Honestly this will considerably reduce the side effects especially if you are on any taxol.
Mercies and Grace to all of us going through this.
Jul 13, 2016 12:39AM FaithNotFear wrote:
Thank You HighlyFavored for your post. I had my first chemo treatment in June with cold caps. I wish I had joined sooner. I definitely was little discouraged when I lost alot of hair this week. Thanks to you I know what to expect and how j should prep my hair for the remainder the treatments. Continual Blessings to You.
Dec 20, 2017 11:05PM Toni_Faith wrote:
I am due to start chemo 1/4/18 doing 4 rounds of TC. My plan is to use the Paxman cold cap and wanted to gain any insight for african american women. I am all natural with no chemicals for about 9 years. I have thick wavy/kinky hair..When my hair is straighten my hair is shoulder length down back. This has been extremly hard for me to prepare to lose my hair. The option to use the cold cap was recommended to minimize less lost as much as possible. I am blessed to have a best friend who does hair and specializes in natural hair care so she accompany me during my cold cap fitting..With the Paxman cap at my fitting i was told i couldnt have any braids or twist in my hair. My hair had to be out to wet it and apply the conditioner to my hair prior to putting the cap on. Would appreciate any insight and i will keep everyone posted throughout my journey
Dec 21, 2017 03:31AM motherofmany wrote:
hi Toni faith
Is there a reason you chose this company? I used penguin caps and they do not require your hair to be wet prior to placing caps on. I think this is easy for Black hair...also I too wear my hair natural during my chemo treatments. So far no hair loss after 2 THP treatments. I have been using the twist set to styling but twist loosely with out tension on the scalp. Good luck
Dec 21, 2017 10:00PM Toni_Faith wrote:
The paxman is the only system that my facility center uses. Glad to hear that you have no hair lost since your first two treatments. May I ask, how many treatments did you have? So how soon do you put your hair in twist? As thats what i was considering doing after treatments but styling 3-4 days afterwards.. Thanks for the feedback.
Dec 21, 2017 11:05PM motherofmany wrote:
Hi again Toni Faith-
so penguin caps says to wash hair 2 days before treatment...my treatments are on Friday every 3 weeks...so I wash on Wednesday and then I have treatment and penguin wants you to wash on the 3rd day after so I wash hair on Sunday...I use Cantu to twist gently and set hair...I twist usually daily but if to fatigue from chemo I can do nothing for a day and still look decent for work...I don’t comb hair except to comb out tangled before twisting and also to detangle after washing...also when washing you can only use cool water to shampoo and rinse...no heating scalp...I have 4 more treatments of taxotere...it was really rough not having any one to get help from on this sight but I feel pretty happy that I still have a head full of hair....good luck with your hair journey...
Dec 22, 2017 10:49AM Toni_Faith wrote:
Thanks Again Motherofmany! I will definitely take note and ensure that I am very gentle with my hair and make sure that my girlfriend/stylist is aware. Very positive to hear you still have a head full of hair.. I begin on Jan 4th on Thursday every 3 weeks with TC with my last day being March 8th.. Will keep you posted on my journey and would love to hear howthings go for you..
Feb 17, 2018 07:43PM - edited Feb 17, 2018 07:44PM 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?
Feb 24, 2018 10:02PM 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.
Mar 25, 2019 10:55PM 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
Apr 28, 2019 11:30AM - edited Apr 28, 2019 02:04PM 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
May 4, 2019 09:40AM 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
Feb 22, 2020 11:03AM 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!
Nov 27, 2020 10:02PM 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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