Cold Caps Users Past and Present, to Save Hair
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hi everyone. I just took off my last cap for the day about an hour ago. This was treatment #5. It's such a pain cold capping. I say this every time. One more treatment left. Can't wait. Then no more capping.
Hope everyone is doing well. I'm moving all the pics.
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Hi Gals, I know it's in this thread somewhere, but I can't find it. When did you have your first big shed? I'm on day 16 after my T/C and I notice a little more shedding than usual, but I just wonder if I will have a ton when I wash tomorrow. I shed a ton on a regular basis, so it's hard to tell if it's more now. I think I'm just getting paranoid. I'm using the Acure shampoo and conditioner (thanks Tunegrrl!) I love it. I'm already dreading my treatment next week, but I guess it will mean I'm halfway there!
I'm loving the pictures from you gals! Everyone have a great weekend!
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It is normal during non-chemo times to lose up to 100 hairs a day. Even before chemo most of my shedding was when i washed and conditioned. conditioner just gives more slip to hair but doesn't cause it to fall out from the root. it seemed like i lost a thousand hairs a day for days after first chemo with caps but average amount next two. (actually could count them).we do average about 100,000 hairs on our head!
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Thanks, Janetsam! I just keep waiting for the "big one".
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hi cat girl. I'm on your same regiment. I got my big shed after treatment #2. Since then it's been normal shed. And I too love Acure. I bought 2types. The hydrating and the clarifying. I noticed the clarifying works much better . It really cleans your scalp better like it dissolves the gunk without having to scrub. And still leaves your hair soft.
Hope everyone has a good day.
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Not really a reply. Sorry. New to site and can't see how to post. I am using Penguin Cold Cap. Ive had my 1st of 4 T/C 3 wks apart. My 2nd is coming up in 5 days. I want to know if anyone has found something...like a wand or powder to cover their roots that is "safe" to use. I'd love any feedback.
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hi everyone, looking for advice. I had trible negative breast c, I had surely to remove the tumor and my lymph nodes were clear. I have to do 4 rounds of chemo. Debating whether or not to do cool capping. I'm scared I'm hindering the chemo. Any suggestions please!!!!!!
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hi yup. I bought a root cover up powder called Wow. U can get it at Ulta. I also bought toppik to cover any scalp showing anywhere. These are used by many of the ladies on this forum. That's where I got the ideas from.
Good luck on your treatment. Remember big shed might happen after your next one.
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Hi Yup, I use WOW root cover and also bought some Madison Reed. They are both just powders that you brush on the roots. They were both recommended by others on this thread. They don't have the chemicals that the sprays do. It sounds like we are on the same T/C schedule. My second is this coming Wednesday and I'm using Penguin. I haven't had any unusual shedding yet.
Hi Shell40, In what way are you concerned that you'll be hindering the chemo by cold capping? I'm having 4 rounds as well and my oncologist wasn't very supportive of the cold capping. I told him it was a deal breaker and he could keep the chemo without it. My surgeon was very supportive and said my oncologist is living in the dark ages and all women should have the cold cap option presented to them. Do whatever is comfortable for you. I didn't want to risk permanent hair loss with the taxotere.
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Catgirl2--As a "plan B" I met with a wig consultant yesterday (my first of 12 weekly taxol started today). She told me that what was typical for women on chemo, NOT cold capping, is that you will feel scalp tingling around days 12-13 which is an indication that the hair is getting ready to let go, so she schedules her clients for appointment on day 15 for their wig. It seems that a lot of cold cappers say that "big sheds" happen after their 2 or 3 weekly treatments (depending on timing of treatments) so maybe it is tied so the timetable she mentioned. But is seems that the sheds are smaller after that point in time. Glad your MO ultimately said OK. Mine suggested cold capping, even though they don't officially support it, as she was persuaded by the presentation made recently at the Breast Cancer Symposium in San Antonio.
Shell40, the only risk I've read about cold capping is that the cancer could recur in your scalp, but it seems the likelihood is very low. So you might want to read/ask about that for your situation. I am using Penguin Cold Caps. One huge consideration is that you need a team of people to help cap. A very young, high energy, detailed focused helper could probably do it solo, but I need two people as my team members are older and don't have the sharp focus they did in their 30s. Good luck with your decision!
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Day 21 PFC. Barely any shedding so I am thinking I will be ok. I miss my really long hair but I am starting to like my chemo-curls. It has been quite a journey! Good luck to you all
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janetsam- you hair looks great! Thank for the pic! Looks like a cap success! So happy for you!
Hugs e
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fastgirl, thanks for mentioning the San Antonio presentation. I googled it, and it was about the Paxman system i used! Way easier than changing caps. Hopefully in a few years it'll be readily available in more places.
http://www.healio.com/hematology-oncology/breast-c...
http://www.healio.com/hematology-oncology/breast-c...
Janetsam, your hair looks fantastic! Congrats
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hi all!
I washed my hair yesterday it was so funky and matted... huge shed! I take baths and I thought the water felt Luke warm, almost cold, so I took a chance and dunked my head to get it more rinsed...warning! do not do this. Ive really taken a hit. I guess the warm water maybe opens the follicles and let's the hair loose is my guess. Use cold water! It also could have been that my hair was so dirty there might have been loose hair all stuck in there.....
Hugs E
I think I'm losing the hair battle....
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janetsam - you look great. Wouldn't even know what you've been through. Thanks for all your information, if I lose much more I may have to just start all over and the generic rogaine may be helpfu. My capping company says if I cut or wear a wig it would cause more shedding and would lose what little head start I have. The torture is waiting to find if the PFC shedding will take much more. I guess this whole journey is a guessing game. Ugh!
Elastogelgirl - I know, I know. I shed a lot yesterday when I washed 3 days after treatment. My hair looks passable on days when I wash, I have coverage but it's thin. I think if I didn't have cancer face, (thin eyebrows and sparse eyelashes) and I could doll up a little I would be ok.. but one night of sleeping on my hair I am a mess. It's matted, stringy and the thinning spots are more prevelant. I am getting regrowth on my eyelashes and around my ears where I lost all the hair, it is starting to grow back already. There is peach fuzz already. I may lose all that but it's there. You still have a lot of volume but I know itsscary and disheartening... I also notice my eyelid skin is really dark, anyone else have that..
My next step is a Pet-scan on Wednesday then if all is clear again, I go for radiation mapping. My MO wants to do lupron shots and anastrozole hormone therapy. I've heard will give the worst side effects but give biggest chance of reducing reoccurrence.
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luvmyys-thanks for posting..keep updates coming! Good luck with pet scan!
I'm happier now than I was a few hours after my clumpish big shed fell out this am..was pretty upset when I took my bald spot photo...the photos do highlight the loss a bit more than actual...there is some hair there....and now my hair is clean so it feels better...still better than bald! Still hoping I survive taxol with some left. I think I can get away without people noticing still.
It's not my normal mane of flowing styled colored shiny hair of course...but, I do notice hair on other women more now.. I see there are so many out there with extremely thin hair..... I never noticed so many looking so thin before. Probably why some would wonder what all the fuss is about.
Hugs all e
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Elastogelgirl: You still don't look like a cancer patient! I've also been noticing how many people have thin hair. I think that at the very least, you have a head start on growing back your hair. It would take forever to start from bald.
I washed today and my shedding has officially started. I've always been a big shedder, but this was more than usual. It's pretty scary, but I have quite a bit of hair and hope I keep some!
Have a good weekend!
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Catgirl -yes! That is the best thing not looking like a cancer patient in the mirror, in photos, just not bald!
You have a thick head of hair and a head start with dark hair and without the red devil Adriamycin..You are a much better candidate than I was!
I actually got a compliment on my hair cut! (my bandanna covering the dirt matt) this,yesterday at a restuarant where the waitress knows us! I almost spit up my lunch! So nice of her really. She is a frank type person too!. Such a weird ordeal sometimes!
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Hi everyone:
I've been reading your comments every day and thinking of you all. Love the pics.
Janetsam: You look absolutely beautiful! Hope your body is feeling as beautiful and healthy as your hair!
Elasto: I know you're worried about your hair and of course understand. But when it's down it still looks normal to a casual observer who didn't know you before. About the bath, I took baths everyday during chemo because I was freezing, sick and unable to relax. They calmed me down and helped me get through. I kept the door and windows open to try to ensure air was cool in the room. But Penguin says not to do saunas/hot tubs or anything that raises the body temp because it can cause chemo to reactivate. I don't know if that's true of course, and I had to do the baths for my sanity, but maybe stop them if you can. I wonder sometimes if my outcome would have been better if I had avoided baths. Also, I had more shedding than elsewhere in the same area as your spot. The hair grew back extra fast there. I want to give you hope that if you lose more hair it will likely come back quickly. Hang in there.
Kechla and Pamela: appreciate your comments about effectively dealing with recurrance fear - so grounded and wise. I am trying every day but still that monkey mind chatter of mine often swings through my brain with wild abandon. Prior to BC (for at least 20 years) I really was doing everything "right" or so I've been told - lifestyle, diet, safe products, wide spectrum of exercise, spirituality, etc. I've switched up some things - added more yoga, more "no, don't want to do that" , more meditation and more awareness of daily moments of joy. I have to actively look for joy sometimes, notice all the little things and feel true gratitude. As studies have shown, emotions affect immunity and a strong immune system can help keep cancer at bay. I'm trying to retrain my brain. I was working on this before cancer because of some other trauma stuff but now It feels even more critical to manage this aspect of health. Wanted to share that my yoga teacher mentioned a study done at UC Berkeley showing that of all the positive emotions "awe" has the most powerful effect on the immune system. Even more than love and joy. I found that interesting since I'm one of those "love conquers all" types. If the study's correct then maybe "awe conquers all". Everyone is different of course. And then there's the factor of the unknown. So much not known about why cancer occurs. That's why, Kechla, I loved what you said about being vigilant and then just letting go and living a happy life.
Luvmyys: Congrats on finishing! Hope you're feeling better with each passing day. Wow, so sorry to hear that your doctor started talking about all future treatments while you were getting chemo. Smart people lack common sense. Often. My doctor was wise and kind in that regard. - I wish you would have had my experience. She told me when I was done with chemo to go home and rest, eat well, laugh, and do things I loved with people I loved for three weeks and then we'd talk. I knew what was coming but she gave me time to catch my breath. Sorry. xo.
On hair color, my onc just wanted me to wait another 3 to 4 weeks because she thought coloring might slow down growth. I just can't wait anymore. Next weekend I'm getting a trim and doing some strand tests with my regular color and an alternative one. If my hair doesn't blow off in a week then I'll color my whole head (that'll be 15 weeks PFC) . My hair is so crappy that I want to be extra cautious. I'm having reconstruction surgery on Monday to remove scar tissue causing capsular contracture and exchange the saline implant for silicone. Nervous about the surgery but mostly about the outcome. Hoping that this will be the final surgery.
OK, wishing everyone a good weekend - hair and everything else. And, at the risk of being cheesy (in light of what I said above), I want to say that I find myself in awe of all of you. Truly. When I am feeling alone or scared or misunderstood I come here and I read what you beauties have written and things are better again.
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willa-thanks for the heads up on the baths and the heating of body being bad for the hair and the why! I definitely did not have all the recommendations I needed going into this..so, maybe, if I follow the rules better I will get to keep more of what is left? crossing fingers! I still have to wear hats and stuff for skiing so that one rule is still a problem!
I actually noticed that I cannot relax in my bath like I used to..lately I get out right away like I just could not relax! So maybe there is something to that idea about the chemo reactivation! I haven't enjoyed my latest baths at all. I thought something was weird about it.
I take baths for my chronic migraines. I luckily have been suffering less migraines during this whole ordeal. I'm sure they are hormone related. Plus I've really been working on eating all the right stuff!
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luv, elasto, i wonder if there is some kind of science backing up the cap company recommendations regarding not wearing wigs, scarves and not washing as one normally would? I have a little bit of medical background (nurse practitioner) a healthy amount of scepticism and and whole lot of fatalism. I think once the critical damage to follicles occurs the hair is going to fall out no matter what so in my opinion i think you shouldn't blame yourselves. maybe the hair that has already parted ways with the follicle only becomes apparent when you wash making it seem like it is the washing that made the hair to fall out. Elasto did you alternate the side you parted your hair during infusion? luv, my lower eye area darkened during my three infusions in the spring, went away and is now back with my last three. If it were me losing too much hair i would keep cold capping because there is some growth in-between infusions. Hair comes back incredibly fast and i think the caps would only improve on that. when i was bald i settled on a cotton bandana. i had a partial wig made from my hair which was quite nice but itchy as hell. i bought different scarves and hats but the cotton bandana was the most comfortable and looked the most like me. I can't imagine how a cotton bandana would increase hair loss though. if you have bald patches but can wear a folded bandana or band it would still be a nice look.
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janetsam-elastogel caps are done with hair wet under a shower cap..I get my hair wet and sort of stream it all backwards with no part line...we try hard to cover the thin parts with what hair I have left now..we don't touch it after this.
Good point you make about my part line though...perhaps I was not really getting the thick side there streamed back as much...maybe that was always more insulated there..I also previously had a teeny bit of a receding thin point at my hairline there on that side too. It was a thin site on my head already. If you could even say thin in regards to what my hair was!
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willa, i'm a big fan of you and hope you have smooth sailing on Monday, and breathtakingly beautiful results that *almost* make breast cancer seem like a nice idea. I hope your rack turns out to be as lovely as your spirit.
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Elastogirl--my hair looks like yours .When I lift the sides, I see the exact same bald patch but I wear mine down like in your first picture. It's all "smoke and mirrors" which I knew going into this journey. Looking at the research, ladies kept between 50-80% of their hair depending on their regimen with cold caps. I still think that's better than being bald. So if I use WOW and keep my hair down and look "normal" to the average person, the cold caps did their job. Hang in there. Also, I have taken a hot epsom salt bath at least once every 2 weeks during chemo. I have never noticed any increase in shedding
Shell40--you may want to look into these studies regarding scalp cancer after cold capping, very rare--https://penguincoldcaps.com/how-it-works/scalp-met...
Janetsam--Congratulations!!!You look amazing in your photo!
Hanginginthere--I don;t think a detangled would be a problem. I have used a defrizzer on my ends most days in between washings to keep from looking dry. I think the companies don't want you to have product build up on your roots, just keep the detangled where needed. Especially if you use a children's one that is mostly water so it's lighter.
Congrats Luvmyys! I'm 17 days PFC. Waiting to see if I get any big shed. My only big one was 19 days after the 1st infusion. The other ones have maybe caused a combful of hair on washdays so not too bad. My part right now feels tender, hoping it's nothing since all my patches are underneath my hair so far. Knock on wood, my part stays normal! I, too, have dark eyes. Without makeup, I feel the dark eyes and sparse lashes make me look sickly. Hoping that goes away soon!
Fastgirl--how are you feeling after the 1st dose?
Hopfull--one more to go!! I hope you are trudging through the SEs. Thinking about you!
Catgirl--so you got your big shed? It's pretty shocking when you do, but it should be the only BIG one. Everything else is just consistent during certain weeks, then slows in between.
Yup-- I use WOW powder too. It's amazing!
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janetsam and Hanging_in_there Meant to get back to you sooner - thanks for your responses! The port pain did go away, following your advice I ended up splitting a percoset twice a day for a few days. I can get by most of the day with a 600 Ibuprofen when I need to drive. The port is still what I'd call surface--sensitive - in other words when fabric or the mastectemy bra rubs against it...but my PS gave me some large sterile pads to stuff in the top of the M-bra to cushion against things rubbing against it.
Meanwhile, I called Arctic Cold Caps - they spent quite a while with me and eventually found an industrial supplier about 25 miles away who is compassionate to our cause and is willing to sell the dry ice to us cold-cappers at a discount - isn't that sweet? I mean, it's been impossible for me to work during this, and my rainy day savings is running perilously low! I've been really impressed by their level of service and the comprehensive package combined with a relatively reasonable rental rate & thorough training....
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Pamela23--Thanks for asking! I had a great day yesterday. Jittery (from steroids?) thru mid afternoon, but good energy. Spent 7 hours at the office, since I missed so much work last week with education meeting, echocardiogram, plastic surgeon appointment, port placement, meeting with wig shop (Plan
. Was ready to rest when I got home. I thought I could skate through all of this with only 3 people at the office knowing, until I learned about the need for chemo. So now just going to have to play it by ear. This morning woke up with a dry throat, but a cup of coffee seemed to remedy it. Temperature is normal.I have a styling question--tomorrow is my first wash. My PCC rep tells me that I can use a blow dryer on cool setting. Do any of you use a round brush to help with styling, assuming of course, that there is no tugging at the roots? I have naturally frizzy hair, totally gray, so I previously was an every 3 week color, blow dryer and flat ironer, so this journey is going to be interesting to say the least! Appreciate any thoughts. Want to be "smart" about this. For those of you who have finished this process, did you wear a wig at all during the chemo and post chemo time and do you believe it had any affect on your outcome? Thanks
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Dandelionwishes - The service you are getting for your cold caps is excellent, such good news. Keep all of us posted!!. I am starting chemo in a few weeks and doubt that I will be able to work through it either, a hard decision to make. Like Fastgirl, I wanted to keep things quiet as it is so much harder with co-workers knowing and though they mean well, saying the wrong things. We all know what those things are sadly.
I have heard that some styling is ok, on the ends or mid-way down as long as it is not hot or pulling. So a light curling or flat iron would probably be ok. My hair is now wiry too, due to age, so I rely on hot rollers to make it shiny and remove the wire effect. I think a flat iron on low, on the ends would make it look more normal. I also heard that anything on the head is not good due to pulling the follicles. Hats, scarves, wigs, etc. I wear a pony tail to the gym but heard that scrunchies were ok as they are loose so I plan on doing that. Have some silky ones that might hold my hair back enough to keep it out of my face. If I have enough hair left at the end of chemo to be worried about all of this I will be a happy lady!! Anyone else hear the same thing about styling that I did?
Good luck this week everyone, keep posting your tips and successes.
Anne
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Willa,thoughts and prayers to you on Monday! I'll be sending you positive vibes that this time around will be successful! You are my hero, your always such an inspiration to us all. Thankyou always for lifting us up.
Kechla, on finding your tumor on the second time, did you feel it or see it?did you have implant that make it tougher to feel? My BS said contact her if I see or feel a bump. I have thin skin I'm hoping she got all the b tissue she could. But it freaked me out
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Fastgirl-- I was too chicken to ever use a blowdryer but I do style the ends once between washings to get the frizzy looking hair look smooth for those 4 days. I would be scared it puts extra pull on your hair so just be careful! I washed today and got a lot more than I thought out but not anything like the first shed. I'm hoping that is it since it's 18 days past infusion. Seems the washings around that time after infusion (18-19 days) produces the most hair sheds when I comb out. after a washing.
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Hello All!
It has been ages since I spent any time on the boards or posted. So sorry to hear about Hortense and too many others.
I'm thrilled however to see so many cold cappers!! I just wanted to let Elasto know that while I did different chemo, I did use Elastogel caps very successfully :0). If you or anyone else has any questions let me know!
Hugs and healing prayers to all
Lynne
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