Cold Caps Users Past and Present, to Save Hair
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Radmonkey- Hi, great to see you here! I hope you get good results, keep us updated.
I'm officially 9/18 treatments, so halfway done. This chemo is starting to kick my butt. It was breezy in the beginning but now I feel like I'm in quicksand running towards the finish line. It doesn't help that with every passing week, I'm losing more lashes, brows & hair and I start to feel like a caricature of my old self. This cancer thing is no joke.
Has anyone experienced an extremely itchy scalp? I'm horrified of wash days. I honestly don't lose that much hair but watching it come out is traumatizing for me so I try to stretch it as long as I can. Do you guys think drinking water helps with the shedding? I'm so terrible with drinking water so I'm wondering if this is contributing to my shedding on taxol.
Words of encouragement would be great today. What has kept you guys going through this?
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I start 12 weeks of taxol on Wednesday. I am so thankful to be past the 4 AC's. My hair feels so much thinner and I'm scared with 12 weeks I'll have nothing left!! I also have started getting hot flashes at night sometimes during the day. I have never had those before and they are awful. I can't believe how many side effects chemo has!! But I try to remind myself this is a necessity and be grateful I have the opportunity to cure this thing!
All the nurses and doctors are amazed when I come in and have hair. Nurses stop by my station and watch for awhile while I cap. I will be icing my hands and feet for taxol ugh!!
I laughed because I've always hated spiders and hair when it gets on stuff. I can't go anywhere in my house without getting hair on my socks or in between my fingers it's like a horror show for me hahaha 😂😂😂😂 ya just gotta laugh sometimes
❤️❤️❤️💪🏻💪🏻💪🏻 Stay strong ladies you are my heros
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Michcall,
I used the Madison Reed powder root cover up. It's organic so it's safe to use. The hair dye is also organic so it's gentle on your hair
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Radmonkey - I am a whole year PFC- I did AC with dense dose T. I lost about 2/3 of my hair, I would say, but only I would really notice it. I used penguin. I had a bit of a patch on the top that got balder, and I lost the edges because I didn't use the headbands. The weirdest part is I think some people really don't believe I had BC because I don't look like a chemo patient.
Things I learned…
Agree totally with a dry run. We found it tricky to get the caps to the "right" temp and I expect they were often colder…better than warmer. There first time I couldn't deal with the cold in the beginning, and I wouldn't put the elastic over the top of my head like you are supposed to with thick hair. Pretty sure that explained the bald patch. I wish I had taken an Ativan instead and suffered through it…after the second cap it all gets much easier...
If the cap starts to feel "comfortable," it is probably time to switch! Sometimes we did the change every 20 minutes for the first 3 caps because it seemed they got warm too quick.
I did take biotin and all of the other things the penguin instructions.
Here is the sequence -
Before
After chemo - eyelashes gone, eyebrows not gone yet!
After DIEP surgery - still some more loss
Almost 1 year PFC
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MJPow- I am on week 10 of taxol. I didn't even experience shedding until the end of week 8. I get quite a bit of extra shedding but nothing too crazy. I would surmise I've lost 10% of my hair so far. I'm also scared that by the end of my 18 treatments, I won't have much left. Since you're past the AC, you should see a reduction in hair loss with the taxol!
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Zinny - Thank you so much for the advice. I get my PCC on Thursday and we are planning on doing a dry run on sat or sun. Question: What elastic over your head? I have thin hair and I'm worried about getting frost nip on my part. I was thinking about getting a spray sock,but then I'm going to be in a big treatment room with others. I might just put gauze on or part my hair the other way. No private rooms in Las Vegas.
Speaking of which, did anyone CC at your treatment center and had problems? I'm starting to get anxiety that the nurses won't let me do it or will tell my husband to leave in the waiting room. I will also have two cappers for the first two treatments, then only one. My husband and friend with take turns when my husband goes back to work. Very few cold cappers in Vegas.
Plus, I ask the nurses how long are the infusions, trying to get a time line and they are so evasive with their answers. Should I start cold cap at the facility or should cold cap at home and then arrive? AAAH!
thanks,
L (Type A personality and the unknown is driving her crazy)
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BTW, Zinny.... you look fantastic! I love the last picture.
I don't want people to think I'm a chemo patient too. I get these sad looks from people at work and other moms when I drop the kids off at school. I'm hoping the cold capping works.
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Radmonkey, I was told to (and did) change my part with each cap change, to avoid frost nip there. Worked for me.
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radmonkey
I did AC and DDtaxol. I lost a ton of hair. I had a good head of hair with almost no problem spots up until mid taxol.
So all winter my hair looked good to me I was confident it was nice to have those 3 months of pretty good hair. Midway thru taxol my hair shed like crazy! For three straight weeks it just felt like a slow moving disaster. I thought I would be a total failure. I started using toppik and scarfs. Had some scalp showing thru my thin strands and a wide part line.
My hair stopped sheddding at the end of my last treatment. I got by with all this without ever thinking I needed a wig. I would put toppik in and feel normal for a few days until it for dirty and would clump up...
I did not and don't excalty like my hair right now it's stringy and I can't do much with it but so so so much better than bald. People always ask me if I did my chemo yet when they find out I am going thru treatment. Only my closest friends and family can see my hair has thinned.
I'm now 6.5 weeks past chemo and my new hair is growing in fast!!. No toppik needed no bald spots. I have very weird hair but it's growing ganbusters. No shedding pfc at all. I'm weird that way.
Hang in there and don't mess around with the cold cap rules. I made a lot of mistakes with hats, helmets, sweating with a hot head, scarfs, baths, scruchies, brushing too much etc..
be strict with the babying of your hair!
Hugs E
Btw I think I lost 75 percent of my hair but you would be surprised how you can get by with just 25 percent.
I would cold cap again for sure
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mj pow-hot flashes! Man I hate them. I use fans but they dry me out!
My favorite cure is a humidifier diffuser mister. It's cold in tahoe. I don't always have it on, but when I feel a flush coming I turn it. Cool mist eases the flash very quickly and adds moisture to my chemo riddled dry skin.
They sell little ones you could take to work. So nice not to have fan noise and dry wind from a regular fan too.
I suppose if you live in a humid climate this may not help. It adds wetness. I sleep with it in my face and my sheets get wet but I love the moisture in my face.
I also think that the flashes can come when I just think about it. right now I'm flashing as I write this. If you have a hot flash tell yourself 'it just a moment'... think calm.
I started eating dinner earlier too. I find not eating anything three plus hour before bed reduces the night sweats that come from digestion. I get more sleep this way.
Hugs e
Btw my flashes are fewer and fewer now that chemo ended. Hang in there.
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Also, Radmonkey, you shouldn't start capping at home - wait until you get to the treatment center. I don't know what chemo you're getting, but my pre-meds (with weekly taxol) took about the right amount of time for the pre-chemo head freezing (50 minutes).
You might have delays once you arrive, and you don't want to be capping any more than needed! I had a dedicated medical freezer and private room at my center, and they knew in advance that I would be using that room. I assume your oncologist knows you are cold capping, right? Hopefully there's a way to let the chemo nurses know in advance - mine were very helpful with working out timing, etc.0 -
Zinny, you look great!
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PatinMN - Thank you for the advice. My oncologist is very skeptical about the cold caps. I'm determined to make it work to prove them wrong and hopefully to be more understanding about it for future cold cappers. I had a second opinion oncology consult with MD Anderson, and the nurse practitioner says that they are seeing good outcomes with cold capping which also gave me hope. I will be getting AC x 4 + DD T x 4.
Elastogelgirl - I saw your pics and I WISH for your results. I think we are our own worst critics. I bought some toppiks today.
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Radmonkey- i would definitely do it all again...I had very thick long blond highlighted hair
First photo was toward my last of 4 AC treatment. I started to really worry. I may have had thicker hair there in the bald area and it may have insulated the caps in that spot..
Below This was my low point during mid DD taxol (4 rounds) I had a massive three week shed! it was horrible!...my hair was dirty here so the scalp photo was looking worse. I was starting to think it was just over and I should shave it off.
lFeeling super low here during my huge taxol disaster shedding. Toppik in next photo to the rescue! for my own sanity.
Below is Fix up during My low point the same time frame as the two photos above. after I washed and filled in with toppik and tied back made me feel better...toppik works great.
1 month post chemo below. Coming in all salt and pepper. Not the color I thought I was...
This one was a few weeks ago. Maybe three weeks post chemo. Lost eyebrows and lashes.
Me today 6.5. Weeks post chemo top of head photos make it look really ugly. But hair is filling in fast! I'm not shedding at all!
This photo below is how I look when I fix up a teeny bit. My old blond hairs still help
I like this Tibetan head band it covers my grey and is not tight or hot! This is last Thursday 6 weeks pfc. I think this looks like the old me
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Hey did anyone do just the Taxol and used cold caps? My mom is going into her third Taxol treatment and has used the cold caps and so far no sign of hair loss. We had a week break due to her IBS and we go back this week. Should we expect hair loss after this treatment coming up?
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GinaDexter1982- Hi Gina! I'm on weekly taxol. Just finished 9/18 on Thursday. I made it 52 days without any shedding, & then had a bit of a shed during my 8th week. I thought this was really bizarre because i had made it so long. I'm not sure if the shed was due to user error or just because the cycle of my hair growth. I also spent quite some time in the sun that week, so I wonder if that has any effect on my follicles. Does anyone have info on that? Would prolonged sun exposure really cause shedding during chemo?
With that being said, it wasn't too much hair at all. It was just more than normal but still pretty negligible. Maybe 10% at most. Many women I talk to have pretty stellar results on taxol. Some don't lose any at all, but most I've corresponded with save 50% at minimum. Good luck and let me know how it goes! Always looking forward to sharing stories with other taxol girls!
Also, I'm finally allowed to post pictures so here's an update.
My hair on day 52 of Taxol. This was before my 10% shed.
This is me on day 60! Halfway through chemo
. Washed my hair today, no shedding at all. 
Good luck girls!0 -
Gina, most people who cold cap on weekly taxol don't lose much hair overall. It's hard for me to estimate, but I don't think I lost more than 5%.
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sherry, you look great! So glad you can save that beautiful hair
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sherryowang-omg your hair is beautiful. Don't worry I think you are going to have great success. Just follow the rule to a T. I broke a lot of rules...don't want you to have any regrets. Just try and baby that hair and leave it alone. Your half way thru! I lost a ton of hair midway thru my DDense taxol but I had also done AC. I think DD taxol is worse on the hair. Keep those caps on as long as you can stand it after. I wore mine until 10 pm,
I love your chemo 9 poster! Your doing great!
Hugs E
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I think those are pretty good results, E!
SHerry, how do you keep your hair smooth? Coconut oil
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https://community.breastcancer.org/forum/6/topics/...
Radmonkey - I posted my pics a couple of times the above link has 2 posts with pictures, and the first post on that page links to a whole lot of pictures throughout my treatment.
I had double dose AC every 2 weeks for 4 times, followed by double dose T every 2 weeks for 4 times.
I am 8 weeks post final chemo and still I'm losing hair. I have 10% of my hair. It looks about the same as the last picture I posted. I had VERY thick hair to begin with. Most barettes would not fit around all my hair. I have a little coming in at my forehead.
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Hi hanging in there! I think those are pretty good results too! Thank you for sharing your pics!
Question: I am using Kenra shampoo as recommended on the Rapunzel project website but someone pointed that there are sulfates in this shampoo. Should I continue using this??? I also bought eraorganics but it was "milky" and didn't wash my hair very well but it states that "5.5 pH, paraben and sulfate free."
Now that I'm more "hair aware" I do shed a lot on a daily basis. It is usually mid hair because I put my hair in ponytails. I guess I should stop.
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Radmonkey, I am using Acure shampoo, as people mention on breastcancer.org. I bought the Acure conditioner too (Amazon), but didn't like the conditioner -- I just could not get it out of my hair. Yeh, probably don't use ponytail. I used a barette until I had too little hair to use one. The think about a barette, it does not pull on your hair like a ponytail.
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MJPow--the hot flashes will get better. They were the worst during chemo. I'm not sure during chemo if there's much you can do but in January in IL when it was below zero windchill, I was in a cotton t shirt and panties laying right under the fan. I've always been someone who wore socks to bed!! Not anymore! 4 months out and I still get a couple warm sensations between 4-6am. I haven't gotten my period back so I'm sure that's part of it. Not on any meds yet. My point is, once you get through chemo, they'll slowly subside.
Zinny--these are the type of pics that gave me hope before doing the cold cap. Seeing success stories helped me make that decision. You look great!
Leslienva--you say the Madison Reed color is organic? Where do you buy it? I ordered a veg based one online and found out it's coming from the UK and won;t be here for another couple weeks. I am SO ready to color!! I need some shine to this dull stringy hair.
Radmonkey--talk to your MO's nurse and let her know you'll be cold capping and ask where the best place to sit for that is in your center. My center had private rooms and they reserved one for me each time. You are going to want to be by an outlet for your electric blanket. I agree with Patin, you really can;t start until you get there. I always had a blood draw and the saw the oncologist. My husband would leave and start putting them in the dry ice around that time. The nurses will work with you. I had mine on after they put in my IV. After the premeds, I'd have to wait a certain time and I just made sure I had the cold cap on for 50 min before they started the infusion. The nurses worked with us.
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sherryowang- thank u this gives me hope! Are you icing hands and feet? I've read how this helps with neuropathy so I am going to try it.
Elastogel- I always think of a superhero with your screen name! Of course you are with going through this. Thank you for the info on hot flashes they seem to be better this week not as many!
Radmonkey- I was nervous about all the same things. I messaged my oncologist and anyone that would listen and reminded them I was cold capping. The nurses were super helpful I told them I needed to cold cap 50 min prior and we timed it pretty close most days. I just went in to see the doctors assistant and she looked at me shocked and said You have hair!!!! Which was pretty cool. I'm through 4 dose dense AC's starting taxol Wednesday. The first one is so nerve wracking but you will get through it and then it will just go smooth.
Pamela- thank u so much for the info on the hot flashes
Lovesgreenthings- I think of you often you are 2 ahead of me how is taxol going? I start Wednesday! Gotta be better than AC
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Hi everyone,
Leslienva-- thanks for the response & info on Madison reed products. I can't wait to get rid of greys.
Pamela23-- thanks for the info on wow powder & L'Oréal spray. I looked online & Madison reed -madison-reed.com seeks from their site. Some products are in sephora but not hair color. I'm a few weeks behind you and can't wait to color. The woman who has cut & colored my hair is also looking into veg based hair color. I'll keep everyone posted.
Radmonkey---I am using Loma shampoo. Someone at my oncology office who also did penguin cold caps recommended it. Some local salons sell it. Hang in there, the capping is worth it.
Zinny-- you look great. Your pictures make me feel like my stringy thin hair will one day be gone and I'll have thick not frizzy hair again.
I'm so glad I found this community - everyone is so helpful!!!
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Zinny,
I told my MO I was cold capping, did not ask (!), and promised to keep it quiet and that there would not be any extra work for the infusion nurses. Everyone has been great so far and I kept my part of the bargain up.
Start the cold capping once you get there as there will be delays for sure and you don't want to have the cold cap on longer than necessary. Usually the premeds take a certain amount of time, ask the infusion nurses how long that is. I usually have the cold cap on longer than necessary each time, but not by much. But if I started at home, it would be hours longer. My premeds are usually about 50 minutes or so. If the time is off by a few minutes, do not stress out, it happens. I am Type A too but had to let some of this stuff go. Nothing bad happened having the caps on longer ahead of time. And you want that versus less time. I put my caps on as soon as possible after arriving as an FYI.
I would suggest having someone check the caps a lot earlier than the start time just to be sure they are getting cold enough, so as soon as you get there someone should be on that part of it. Sometimes they do not get cold as quickly and that will delay things. My infusion nurses have been great about holding up the infusion if needed. I think the nurses are happy that people are doing this as the patients are happier since they have hair. I just make sure to be VERY POLITE to them at all times and they reciprocate by allowing me some wiggle room.
The spray sock works great for my part and the plus side is once it is on your head there is no more worrying about that aspect. The cap covers the whole thing so it is not visible really. I leave the infusion center to go home to finish up cold capping with the whole thing on my head. Down the elevator of the Medical Office Building and out to my car. I get SOME LOOKS! Most people avert their eyes. I think they are worried I have a brain injury. It is kind of funny as I am smiling the whole time. . . .. have to find the humor in this.
Good luck with cold capping. Penguin has some great information in their kits so definitely follow those as much as possible. P.S. The elastic straps are for pulling the cap tighter and it really does help. So does pressing your hand on the caps to ensure contact all around. I still have just overall thinning but at about 20% hair loss now with 4 DD AC and 2/12 Taxol behind me. Pretty good results so far with the harshest chemo protocol.
Anne
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MichCali, Im from February thread. I had 4 TC as well. My last one was April 21. I still have some lashes and brows. Should I expect them to fall out
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Pamela, I'm from February thread. Looking here for those of you ahead of me helps me out as what to expect down the road. I had same chemo as you. Last one April 21. I'm happy to hear hot flashes will subside
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lordhelpme..my brows and lashes fell out a couple weeks after my last chemo march 23. It will be 7 weeks pfc this Thursday..Last week, at five weeks pfc,I started to see lash and brow regrowth.
My male pattern bald spots are completely filled in yay!
My hair is greasy here. Dirty was when I used to really see thru to my baldish scalp! The resolution does not show eyebrow and lash regrowth its teeny tiny still and slow growing.
My hair is not falling out at all! Ive started carefully brushing itsome, with my boar bristle Brush. I still don't wash much. I think brushing in my natural oils makes my hair strong and is key to long thick fast growing hair I've always done this and I was always a hair growing machine
Need to do something about those eye bags! I have eyeliner tattoos from about 10 years ago. They are a faded blue color now. Not suggesting anyone do that until healed up completely. It's a harsh thing to do to your eyelash area. I never had good eyelashes so I chose to tattoo. I've liked it. Not suggesting doing tattoos until completely healthy and healed!
I'm giving another thumbs up for Viviscal for my lash and fast hair regrowth it actually looks like I'll have more lashes that before. CVS has Viviscal. I avoided buying it at Amazon I've read the reviews,,,some thought they got counterfeit Viviscal products.
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