Cold Caps Users Past and Present, to Save Hair
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KCMC-I agree with Vivian. Longer hours. You need to cold cap longer after because the chemo takes a while to exit your system. She's right about how it is hard work.
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ykh- I think some of my hair started coming in without me noticing because it was so white/light. I started seeing it about taxol # 6 or #7. I have different lengths all over between a couple inches to just coming in! It looks very stylish haha. My left side where I think the cap didn't touch during an infusion was very sparce a couple weeks ago and now has filled in a dark brown very short but still covers the area. I have #10 Thursday!! It seems around the crown of my head its growing the most not sure why. I am not taking Visical or bioten as my oncologist and pharmacist did not want these during chemo. Others on this board did take it during. I willl start after.
Any recommendations on shampoo and conditioner for hair regrowth? I think I remember some of you said Nioxin?How long after chemo did you start? excited to get to this new phase!!
Also I know people use bioten and visical any other recommendations for hair regrowth?
❤️ Mj
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mj-I'm doing viviscal and extra biotin and I'm now a furry monster. Face fuzz, thick brows, dark curly hair under my blonde straight hair! A friend of mine ahead of me reports the same growth but now she is losing some of her previously thick lashes. I think our hair all over start growing in at once then begins to fall and grow a few times until a more normal hair growth pattern returns. Normal Hair does have a rest phase. I'm enjoying seeing all the hair 'everywhere' lol...it makes me feel like I'm recovering.
Btw- I'm using only a teeny amount of head and shoulders. I like the way it makes my hair not seem dry and I I don't use conditioner. My old hair is too thin to be drying it out or weighted down, Head and shoulders puts it somewhere in the middle. Using a super teeny amount of shampoo only. My hair is strong now I brush and wash normal. Hope it stays strong. It is a tad thinner on top than at the back of my neck, those places are where I lost most.
Head and shoulders seems weird and cheap..maybe crap. I just can't find anything that makes my hair as silky
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May I ask a stupid question? If a cold cap prevents the chemo from reaching your hair follicles and attacking them, doesn't that mean there may be cancer cells left behind? I wonder if anyone has actually investigated this.
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ping pong-not a stupid question. You could have mets in your scalp but it is extremely rare I think. My oncologist was not worried about my scalp. But I do have the tamoxifen back up plan. I would ask your oncologist about your individual scalp metastasis risk
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I had weekly taxol along with TCHP every three weeks for six rounds. I rented the Arctic Cold Caps and we bought dry ice every week. There were eight caps. I started them 30 minutes prior to taxol and left them on for four hours post infusion completion. In retrospect it would have been cheaper to buy eight caps from Elatogel instead of renting and then i could have donated them like I did with my gloves and booties. My oncologist discussed the issues of no chemo getting to your head because of the caps and said it wasn't a problem. There have been a couple of published studies about it as well. I had some serious shedding and lost eyebrows and eyelashes but was able to keep enough hair that nobody really noticed. My chemo ended in November of 2016 and my hair is filling in though with more on top than on the bottom i have kind of a mullet going on
The brows and lashes came back really fast once chemo ended. I just keep trimming the ends of my hair and it's fine. It was hard but so worth it. I am back at work and it would have been so hard to face the office with no hair. For me it was a privacy and a vanity issue and totally worth it. I agree with the vicodin comment. I took ativan before the infusions and my headaches got so bad I started taking Tylenol 3. The headaches had more to do with low red blood count and the shots to boost white blood.
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KCMC - I used Arctic Cold Caps, who provide elastogel caps as part of their kit, and I was on the same regimen as you. They said to start capping one hour before and four hours after. I didn't have to cap during Herceptin or Perjeta because those do not cause hair loss. Both Taxotere and Carboplatin take an hour each, so be prepared to cold cap for at least seven hours, and possibly longer for the first round or two. They like to wait for a bit in between each drug during the first couple of rounds to make sure you don't have an allergic reaction. I think I capped for 9 or 10 hours the first round.
I did pretty well for the first 5 rounds, only losing 10 or 15% of my hair. After round 5 it started shedding heavier and round 6 has been the worst. I'm almost two weeks PFC and I estimate I've lost somewhere between 30% and 40%, but it's still shedding pretty badly. For me, it's only noticeable on my crown, but Toppik seems to help with that.
Just to add to Elastogelgirl's list, you may find it helpful to keep track of time with a kitchen timer. You'll want to change out your caps every 20 minutes. Also, Arctic provided a Speedo swim cap to put over the elastogel caps to help make the cap fit a little tighter.
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I don't think I'll go the ice cap route, since it sounds like a huge headache (literally!) and I'm not that concerned about losing my hair. I'm much more concerned about neuropathy - I sew, make jewellery and I'm also a potter. I need my fingers!
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KCMC - I had the same treatment you will be having. Just had my last chemo #6 two weeks ago YEAH! It will feel slow, but you will power through it. Keep positive thoughts.
I used Penguin because I had one day notice before starting chemo, got the bone scan and CT scan results Monday night an started next morning. There was actually a local Penguin rep nearby who could drive the caps to me. She was amazing and I hired her to spend a few hours to teach my husband how to apply the caps. I loved that you can use the Penguin caps on dry hair and that after the first two caps of 20 min each, Penguin requires a change of caps every 25 minutes.
I would say I didn't lose any hair for my first 4 treatments. On treatment #5 I saw a few hair (5-10) come off when I combed through it. Since treatment six, I've actually seen hair come off when I comb, may be twice as before, let's say 20 hair at a time. I only comb my hair once/day. My hair doesn't look super great as it's dry, but it's +95% there so I'm very pleased with the results.
I bought the dry ice at Smart and Final and if there are these types of food wholesaler near you check for ice price. The grocery store was $160 for the first treatment and the same # of pieces/lbs costs $68 at Smart and Final:)
You need to know as few things about your treatment to get it right. Penguin gives you the temperature target based on your hair type, color, thickness etc. My hair is thin, blond, but I have lots and my temperature was -28 degrees. The rep said one of her other client with thick, dark and corse hair needed be at -34 degrees. you will need a good thermometer. One was provided with the caps.
The first treatment is longer by 90 minutes since Perjeta (60 min) and Herceptin (90 min) are given slowly to monitor for adverse reaction. For treatment 2-6, the order is 1) pre-chemo drugs (30 min), 2) Perjeta (30 min), 3) Herceptin (30 min),4) Docetaxel (60 min) and 4) Carboplatin (60 min). The Neulasta (white blood booster) will shoot in your arm 27 hours later on a timed release. I started to cap when the Perjeta began (an hour before the Docetaxel) and capped for 4 hours after the Carboplatin ended. This makes for a long day. I only took the two Tylenol given at the treatment center and did not have headaches.
Best of luck! It's all worth it:)
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Do I need to wear a hair net under the elastogel cap? Does my hair need to be dry or wet when the cap is applied? Thank you everyone for getting back to me I am going to use all your advice and really appreciate it.
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kcmc-with elastogel you need to wet your hair and wear a shower cap. Make sure there are no lumps in your hair. I used cream rinse the first few times but since your not supposed to wash after I started just going with water. Not sure if that was a bad idea..I lost a ton of hair at the end.
I would just wet my hair down really well with a sprayer then stream it all back from my forehead avoiding any real partline.
Important wear the shower cap or the caps will stick -freeze to your hair. Don't put the elastogel caps in the freezer at home they will get moist. Keep them in shape and dry when not in use. Elastogels get wrinkles you have to kneed them out and or flip them inside out periodically they work either way. Wrinkles will cause bad gaps and maybe frost nip... there are loads more to know like how to protect your forehead with feminine pads and stuff.
Get the instructions and practice at home before you start.
It's hard and there is a real learning curve.
Hugs E
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Hi ladies! Even with my artic cold caps , I am majorly shedding, all over but also a huge bold spot on top of my head. Toppik was great! I learned it here! Thank thank you! I am thinking that if after second tx I have the same shedding I will have to get wig!
I am Confused with the viviscal and biotin should I start during chemo?
Dcancer- did you get bold spots? How did you manage, I put toppik on mine but if it gets bigger I am not sure. I only had one tx, and s lot of shedding, at this rate nothing willbe left after 4th!
ping pong- you lucky you don't worry about the hair! Take care of hands! I was told to do the elastogel gloves during taxotere. Also, I saw in one of the posts that increasing the infusion time, decreases the neuropathy, but my MO said there isn't enough data to support that. My first round I didn't have the gloves so I held a cut of ice on and off! Got my second the nurse offered me from the hospital! It's so cold!! Also get some ice in your mouth!
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hi ladies! I wanted to check in. Tomorrow is MY LAST CHEMO!!! I washed my hair today, and my shedding has tapered. I have done 16 rounds of carbo/taxol. Cold caps have been a HUGE success for me.
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WOOHOO..... congratulations!!!!!!!! You look fantastic 😊 Thank you for taking the time to share your success - I start chemo 7/28 and it's reassuring to see that things can go back to normal
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You look amazing Sherry what a success and with 16 rounds wow congratulations. Thank you for sharing and giving hope to us who are trying to keep our hair. 😃
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Thank you Elastogel Girl, I finally got them on the phone and they seemed pretty helpful. Only question I have is do you regret using the detangler or that you stopped using it. She also said I should keep the Elastogel caps in my freezer and transfer them to my dry ice cooler day of. You suggested not to put them in the home freezer. Why? I think I trust you more than elastogel lol?
Thanks for all the advice!
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KCMC- my hubby did not want them in the freezer because they may collect water -moisture. They got plenty cold in the dry ice with just 2 hours lead time. I can't go against elastogel recommendation though. I just did not think the feeezer was a good idea or needed.
I did not need a detangler. I had cut my hair to chin length weeks prior to chemo I did not know you were not supposed to cut. I also did not want the detanglerstuff in my hair after capping. You may need the detangler. I just quit using it. But I did not have the best results in the end. I did a lot wrong like hats helmets and fussing with it to much.
At four months post chemo I'm about ready for a pixie cut. Not what I was picturing but my hair is growing back very healthy. And my old hair is thin and scraggly. Need to try and match it up.
I still would cold cap again.
Hugs e
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Sherryo--you look amazing!
Elastogelgirl--I want pics once you cut it. I am TOTALLY feeling like I have a mullet when I wake up. I have probably 2 inches of hair that wants to stand up everywhere. I have to wet it down every morning and my sides are so thin at this point, I look like Joe Dirt until I spray my hair down.
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pamela-I wish my hair looked like Joe dirt right now. It's not that long yet. It is coming in fast though.
I can't believe you are thinking of cutting yours? I thought it looked great! Are you taking tamoxifen? I'm worried about hair loss with it?
I'll post my hair cut photos. Going to stylist next week. Crossing fingers very worried. I'm not into short hair
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I know Pinguin recommends taking Silica while cold capping but does anyone know for how long? My understanding was it's replacing something that the stomach doesn't produce while having chemo but do you keep taking it after? TIA
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TWills - I didn't take much silica. I bought one bottle, and when it was empty, I quit. Not sure it made a difference or maybe I didn't take enough. But I really think the viviscal and evening primrose oil that I took after chemo helped the most - oh, and the castor oil. Plus I ate foods that promoted hair growth such as salmon, chicken, cantaloupe, avocado, walnuts, eggs, and walnuts, etc.
Sherry - wow! Great results. Don't be surprised if the cold cap company wants to use your pics for advertising - try to get big buck$$ for it!!
I am 3 months PFC !!!! Done with Rads on Tuesday 7/18! Hair doesn't shed as much, or maybe it's just normal shed now. I keep the back pinned up with a butterfly clip because it's only a few long strands. I, too, want to trim those long strands to make it even in the back and not worry about hair clips. But I will wait a little longer. I look so much better, and I feel GREAT. Still have some lymphedema in my arm, but I am still seeing the physical therapist who says there is still hope that I can get it back to normal and not have to keep the compression sleeve on forever.
I am not going to take the Tamoxifen. It's supplement city here, stress control, exercise and diet to prevent recurrence or new cancers.
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Are headbands allowed while cold capping? Can anyone recommend any good headbands (preferably silk)? Thanks.
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Thanks for the reply and info GoKale4320.
I definetlygotta get my diet right:):)
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gokale-I so don't want the tamoxifen! I totally get opting out...Did you do a pros and cons? I keep trying to figure out how much it really helps statistically? I want real numbers. I want out too!
About my diet..pre cancer I was a healthy active lifestyle retired 53 year old who surfs, Skis, bikes, hikes etc..-I'm not overweight I never could drink alcohol, I never smoked, and I excercise outdoors like crazy. I've been avoiding plastics, packaged foods, and red meat products for 15+years. I quit most dairy ten years ago. I eat a lot of fresh fish and veggies. I also completely quit using anti persperant and deodorant 25 years ago when I lost a friend to Bcancer. I use very little in the way of detergent products and no dryer sheets etc...i sub backing soda for most cleaning products. I also don't wear synthetic clothing and don't have fake leather furniture.
I was the last person people expected to get breast cancer...anyhow I'm just saying this because I can't just clean up my diet instead of tamoxifen.
I'm already pretty paranoid about touching packaged food fake clothing and toxic cosmetic products. I do love sugar and a bit of coffee. I did switch from a plastic coffee maker to a steel percolator 10 years ago. I even changed out my flip flops to sole cork sandals. Okay I'm a hippy! I probably stink. But just saying....
I did use a lot of paraben sunscreen! . I switched to using just paraben free zinc white out type products for about 4 years now. I also wear rubber wetsuits a lot.
I just keep coming back around to at least trying the tamoxifen. Clean Diet is Obviously good thing but it did not work in my case.
I truly think, as mammals, we were meant to be either pregnant or breast feeding right up to menopause. Monthly cycles would be rare in the wild. I have no kids and had dense painful changing breast tissue every month..in my case probably way too much estrogen. Might be why I had such thick hair right? Er Pr positive.
I was not even very perimenopausal at 53! Regular as clockwork. Chemopause fixed that!
I also keep meeting poor gals who have cancer recurred right after they quit the tamoxifen or AI's. scary . It's like I keep getting the message to just take my pill! Arrrgh
I go in for my script next Monday 😬😬😬
Hang in there everyone. I'm an emotional wreak! I should be happy my treatments are over but somehow I'm just kinda pissed off about not really being done! I finished rads two weeks ago and I think it takes a while to feel right.
Hugs e
PS one diet change I plan to adopt is quarterly fasting using Dr Longo's research on fasting for longevity. Basically fast mimicking for five days each quarter to rid body of unhealthy cells and reboot immune system
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Elastogelgirl - here's what I am thinking - Tamoxifen blocks estrogen, and that's all it does. Rather than block the estrogen, I seek to balance it with progesterone and increase the metabolism of the estrogen. So the supplements should help with that along with diet and exercise. I have read articles on the ElynJacobs.com website. Particularly:
https://elynjacobs.com/2017/04/14/natural-alternat...
So even if I took Tamoxifen, I would still have to ramp up the diet, and increase the exercise and control my stress. It's hard to find real statistics, but it sounds to me that when they say Tamoxifen cuts the risk in half, it's really like 3% vs. 6%. So when they say 50% reduction in risk, it's true.
I also see where you're coming from - you've got the diet and exercise and clean living thing down pat. What possibly else could you do? And that leaves you with Tamoxifen. Keep in mind that I have also been told that most women have little to no side-effects at all. So it may work extremely well for you.
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go kale- sounds like you've done your research. So it ads up to just 3 percent difference or a very small one
I don't know what my exact personal risk is but tamoxifen sounds like hell. And it's a known carcinogen.
I'm squirming around with it as much as I was with chemo!
Thanks for the article. And please include me in any further findings you have.
I get side effects from everything I ingest which is why my diet was so clean in the first place.
Hugs e
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hi ladies!
Just a quick post on Tamixifen! I took For almost 5 years and here I am with a local Recurrence. The chance of me getting a recurrence was 1-3%! Here I am doing chemo. Tamoxifen It's not as bad as it sounds and if your tumor was ER+ you will need to block it. I am premenopausal 45yo but my MO will change Tamoxifen to Aromatase inhibitors. Better studies now on aromatase inhibitors.
Elastogel- I never smoke somewhat good diet, little alcohol. At the end we don't know why are we here in this group. You need to do what you feel comfortable. A lot of things around us are poisonous if not dosaged correct!
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thank you all for your kind words
yesterday was round 17, my final chemo! I'm excited, but will be more excited after my taxol hangover wears off.I was wondering when it when be safe to cut an inch or two? I know penguin recommends not cutting for a while. I'm also curious as to when the shedding stops for good.
I'm so blessed to have saved so much hair, but the hair is almost as stressful as the cancer! I'm excited to not have to stress about it soon
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Mari- thanks I need the push and shove...I'm going at least to try and take the pill and get thru the adjustment period.
I can't stand it that you are going thru this again. It just kills me!
I so hate hearing about it coming back! I hope you fare well thru round 2.
Do you think if you did the hormone blocker for ten years or forever you would have not recurred?
Hugs to you❤️❤️❤️🖖
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I had not stopped when I found out the recurrence. I would have gone to 10 y tamoxifen, it didn't bother me anymore. I am telling myself I am blessed that it is a " "local" recurrence.maybe if I did not take the Tamix it would have spread? We really will never know these answers. I had a BMX last time, thought my tumor was less than 1cm and no nodes! I just have to go over and beyond to get this out! ( I have2 kids) this time is chemo, then rads, then AI. I can't stand the chemo, I don't think my hair will stay to round 4, lots of shedding, now I am thinking should have done PCC instead of artic caps. Not sure if they are diferent, but not happy with my results.
Now I am looking for vitamins?! Start now? After chemo? Which ones?
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