Cold Caps Users Past and Present, to Save Hair
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hi blue girl , since you've been done since October, has your hair started to grow back?
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i all,
I am 10 PFC. I had fun on panic attacked and even had to take a xanax at my last wash. Felt like I had a big shed...truth being told...I wasn't that big but just scared me. I used Artic caps and managed to save 70-80% of my hair although is continuing to shed. Here are a few pictures... x-mas with was right before final TC treatment and included today seating on a plane oday 10 days out.
My eyelashes are starting to fall out...boo! I have latisse so am hoping that will work. I wasn't the best rule follower as I never have been. I used conditioner and also a blow dryer from on time to time on cold with morrocon oil. I know but baby shampoo was so awful on my hair. Used Beelogy.... on Friday I b ok rule and used Clariol rinse to help with the grey...the kind with no ammonia, or anything too bad. It washes out in 6 washes. I will keep you posted as a few U.K. Sites seem to think it is okay. I just couldn't take another day of spraying my hair with Root Touchup or using wow or the stick, marker or anything else,
I just switched to Nioxen as it is thinner fo sure but thankful for every singl hair. A true blessing to make it through...
I start radiation on 19th...and hoping they caught everything. I am not sure I can do this again and just want to be healthy...
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For the Penguin Cold Cap Users: In the Penguin Cold Cap info., it says to take Silica 3x a day. I've seen some people take Biotin. What would you recommend?
IL311 - you look great!
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Catgirl, I did Penguins and I only took Biotin. Silica just sounds too "chemical" for me.
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hi cat girl, I'm doing penguin and use silica. I got mine at sprouts. But I'm sure biotin in good too just increase your dose.
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IL311, your hair looks great. Congrats on finishing chemo. Hoping mine looks decent once I'm done. Half way through. 3 more t/c's to go. And good luck with radiation. I'm sure it's not as bad as chemo
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Catgirl--the dry ice is probably what stressed me out the most. I googled dry ice in my area and found a place about 25 min away. But we also found that Meijer grocery store carries it too. Some Walmarts and Schnucks do too. The brand is called Penguin Brand dry ice. You can google it. We buy between 60-80 lbs. the day of so make sure you go the night before and they have it! Any chance your rep is Penguin cold cap rep is from Michigan? Also, I've been using Nature Made's "Hair, Skin and Nails" (lots of biotin in there) for years and continued, no silica.
Bluegirl--we'd love to see some photos for encouragement!
IL311--thanks for the pics, you look amazing!! I was thinking of you yesterday when I pulled back my hair and saw all my gray roots. I know that was one thing that's been bothering you since you started. I'll be interested to hear how the color wash works for you. PLEASE keep popping in and telling us how it's going. You may be a pioneer with that. The fact that the hair we still have continues to grow is the only thing that makes having grays ok with me. I can cover them with my hair down but I dread going out on a windy day! And forget pulling my hair back, my hairline, or lack of one in spots, is not pretty right now!
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Thanks gals! The dry ice is definitely the most stressful part for me. I find out a chemo start date on Wednesday. Still not sure how all of this is going to work! It sounds so complicated, but worth it if I can keep some hair.
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Good luck Catgirl2!
I have been taking both biotin and silica as it happens. My nails are smoother, less ridged than they used to be. I research the heck out of things, and those two supplements seemed to be the best things for hair. Some evidence for iron as well, and i take a supplement called blood builder (iron, B12, folate, vit C).
I'm a vegetarian and definitely feel best when i have been taking blood builder regularly. I doubled up during chemo to try to help my white and red blood cell counts. (I bounced back well between infusions.) I'm not ordinarily big into supplements. The only other thing i take is vitamin D (gummies, because they are delicious).
If your anti-nausea medicine is not doing the trick, be sure to tell your doctor. Zofran saved my hide rounds 3 and 4 (of 4). The wild dogs of upchuck still chased me, but never caught me.
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Catgirl2, on dry ice. You need to source the dry ice before signing up with Cold Caps. For me, I live within 2 miles of a Beer & Wine store that sells ice and dry ice and I've known about it for years as we all go there when the power goes out. And for awhile it went out 2-3 times a year. I called and talked to them about needing 45 lbs on every other Monday. The owner said about 6 of 7 other women have done this and gotten dry ice at his store.
Also the dry ice store opens at 9:00 am, my chemo is dependent on getting the dry ice at 9:00. It takes about 10 minutes to get out of the parking lot with the dry ice, all cracked up and placed in the cooler and then we drive to the cancer center. Then we get to the cancer center at about 9:50, just in time to put the first cold cap in. If chemo starts at 10:00, then we have to stop on the road about 15 minutes out and put the first cold cap in the cooler. If it starts at 10:30 then we don't need to stop on the way to the cancer center.
I don't know where you get a professional cold cap placer. But my husband and sometimes a friend help do the cold caps. Mine is on for 9 hours and it a lot of work and my husband is doing a fabulous job, but it is exhausting for him as well as me.
My instructions were to take 1500 mg Silica (500mg x 3 time a day). I bought 1000 mg tablets and they were huge. I got a pill cutter and broke them in half. It is still huge. (I got mine at The Vitamin Shoppe). I was having trouble getting down even half the pill and throwing them up half the time. ..... until
I began putting it in apple sauce. I ground 1500 mg of silica up in a mortar and pestle (I already had that) and put the powder in a small bowl of apple sauce. Stir well and add cinnamon. Silica is just sand, so it doesn't taste bad like a ground up antibiotic. I usually eat 1/2 the combo in the morning and half in the evening. I started out putting 500mg in a bowl of applesauce 3 times a day and ended up eating 9-12 oz of apple sauce a day .... way too much. Eating apple sauce every day makes you not want to eat more applesauce, but it is MUCH better than trying to get the big 1000 mg of Silica down.
Good luck, I was in chemo/ cold cap yesterday, so I haven't read all the answers yet and this may have been covered. Just thought I would answer when I had a minute.
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I would appreciate any comments on dignity caps. I am scheduled to do 4 treatments of taxotere and cytoxan did they work
Thanks
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Hi Ladies!
IL311 - You look great!!! Would never ever know you just went through chemo. Keep us posted on the Nioxin shampoo. Are you using fake lashes or going bare? I lost all mine this week on one eye, sparse on the other. I have Latisse and will use but had to order a magnifying mirror to apply because chemo has made my eyesight bad.
Welcome Catgirl2 and Positive2 - good luck on cold capping. This site is great help to make it through.
Ugh! Got my Acure shampoo package today. It leaked all in the box and they put in two shampoos, no conditioner. One of those days... cleaned and stressed (over my hair appearance) all day because having a new play date kid and mom over after school. The mom cancelled 15 minutes before scheduled time. Have to let it go...
Elastogelgirl - did you do your treatment today?
Hangin - hope your feeling good today! I was taking Silica, I ordered through Amazon then I looked on the bottle and it's only 7% silica.. no wonder my hair is shedding so bad.
Good night!
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Last infusion was at the end of October. Hair is slowly coming back, but also still shedding more than it did before starting chemo. I notice the growth mostly in areas that were bald. Almost ready to quit wearing scarfs or the "beanies" I got at a wig shop. Not as fast or thick as I was hoping for, but my hair did start growing more slowly after turning 40 (58 now), so maybe the growth rate is "normal" for me.
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For those using/used silica, biotin, other products - was this just during chemo? Was this to help reducde hair loss? Does it do any good afterwards?
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I took Silica during the chemo per the penguin cap company. I continued to take it until it ran out, about 3 months post chemo. Honestly I don't know if it made a difference. I haven't noticed any difference since I ran out of them. My hair did great with the penguin caps. It started sheddding more after chemo stopped. I still have a lot of hair even though it has thinned out, nobody else could tell the difference! It was so worth the money and time to do the caps:)
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IL311 - You look fantastic! Thanks for sharing pics and for your bravery (!) with the Clairol rinse. What a renegade you are.. I know what you mean about having had it with the root cover ups. I only do that now if I'm meeting someone who doesn't know what's going on. I'll be ecstatic to ditch all that. What a mess. On the Clairol - was it just the type you find in the grocery store and did you simply follow the directions on the box? I hope you start feeling better and stronger soon, although it might take some time. There IS so much gratitude at the end of chemo. Wishing you luck with radiation. Take good care.
Tunegrrl - I've been thanking you every day for the Acure rec. My hair is still shot to hell but it feels so much better. I even have fleeting moments where I think maybe I won't have to cut it all off. On another note, so very happy for you that you got the news you wanted and can avoid the MX.
Pamela - Best wishes for your last infusion. So close to being done. You hair sounds good all in all!
Luvmyys - Sorry for your terrible day.. hope rest of the week is better. I'd try again on the Acure.
I'm very interested in the fasting concept for chemo. One of my friends works exclusively with breast cancer patients (she's a body worker) and she mentioned when I started chemo that she thought this was going to gain popularity because studies are showing a positive effect w/chemo efficacy. I had a fairly strict MO who was only okay with the multivitamin and glutamine during active chemo and wasn't excited about fasting or any of the other ideas I brought to her. Plus I don't think I could have pulled off the fasting, esp with all the nausea. Elastogelgirl - you are something!
Hopefull, Hanging in , Elastogelgirl, Catgirl, and everyone else still capping or just starting - continuing to send good vibes and good luck to all of you.
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Positive2strong - I did the same chemo regimen you're doing and I used the Dignicaps. My best advice is to make sure they get them very snug on the top of your head. During my 2nd treatment the cold cap nurse wasn't there and the cap wasn't put on tight enough and I now have a pretty big bald spot. My regular nurse said that never should have happened. After the 2nd treatment I had her put a couple of large gauze pads between the rubber cap and the outside cap to make sure it was really tight. If it wasn't for the mishap on my second treatment no one would be able to tell that I had lost any hair, just thinner overall. Another recommendation is to take some type of small pillow with you to put on your shoulder to rest all those cooling wires on because they can be very heavy.
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Thanks Hopfull2 and hang in there and half way there is awesome!!!!
Thanks willa216, My hair is hanging in there and the shedding has slowed so just hoping this Clairol rinse didn't do any more damage, so far so good. It is the old fashion kind that washes out in 6-8 washes. I found myself on the UK site of Breast Cancer.org and saw several people used it so thought I would give it a try. By no means is it great but at least my hair feels clean for the first time in two months. It is $5 at Sally Hansen and just followed the box instructions. I will keep you posted.
Luvmyys Thanks! My eyelashes have fallen out in spots but I am just trying to wait it out and hope they grow back...
Pamela23 Thank you! Best of luck with your last infusion!!!!!!
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Cold capping experts. Sounds like a service business that could be lucrative. Instead of just suppling the caps and have people to get family and friends to volunteer. I'd pay for the service for the prospect of a better outcome.
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hi meow, it's so expensive. I hired one for my 1st infusion if I'm not mistaken it was $450 plus the cost of dry ice plus $80 plus the monthly $530 rental for the cold cap . Thankfully my sister had gone to that 1st infusion and my cold capper was kind enough to train her and My husband . She was so ni. She even checked in on me a week later and told me If I had any questions to text her.
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Wow hopfull2, did you get good results? It might be worth it to get the training.
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well I still have 3 more treatments. But so far so good. Still lost some mainly after my 2nd treatment which my capper warned me about. She showed us all the little tricks she used. But I definitely recommend hiring a cold capper for the 1st infusion. So one sees exactly how to do. Just hope they are patient enough and nice enough to want to show person your with how To do it. Some of them won't I've heard. Mine let my sister put caps I need and she stood by.
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Hi all, it Thursday chemo day (was supposed to be Tuesday) Weve been snowed in in Tahoe for 4 days! Been doing my fast mimicking diet since Monday. Fasting with cabin fever very hard
I'm now ready for AC chemo # three. The mountain 1.5 hour drive to Truckee from Tahoe south shore will be a heroic effort. It'll probably take three hours today if we are lucky.
My hair is making my happy this am. I feel like I've lost a ton! But I had a ton to start with. These photos are decieving. if you really look at the mini part line. you can see the thinning. It's like that all over the top. My hair was so think you could not see a part much at all before. Don't get me wrong I'm so happy so far! My hair just started to slow on the shedding, my scalp has been hurting for three days! Worrisome! . I sincerely hope I don't see another big shed like it happened around day 21 from first AC chemo. And 10 days out from the second.
My fasting was is excruciating this time. I am not as ketonic this am as I'd like to be. Nothing but water now for me until 24 hours or more after chemo. The fasting is my shield! I really like the idea of being able to protect my healthy cells thru the cold capping and especially fasting! I think the fasting helps my hair too!
Anyone who wants help with fasting ideas can private message me or do it publically here. I don't know how to start a topic on it.
Wish me luck making it thru the record snow ice and flooding! Up to my Truckee cancer clinic! 1.5. Hours away on a good day ! I just have to make it! My fasting make me need want my appt to to happen! much more urgently because of my fasting! I'm very hungry this am!
Hugs everyone. More later!
Note..I had super long heavy thick hair! After my first capping I cut 14 inches off. Cut to chin length made me cry! Ive had long hair all my life! It's me! But felt it was just too heavy for the fragile roots! I felt I would be far more successful capping with the heavy weight of my hair off!
I now like my chin length hair just fine. I'd be so happy to keep it. Plan to grow it again eventually. But you never know. I don't brush or tie it backlike this often. Only once a week at most.. only when I get really sick of the mess.
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Elastogelgirl--I think we all have those spots underneath our hair. As long as we can cover them up, we're ok, right? I was getting comments on my Christmas pics I posted on FB about how great I looked. It was all smoke & mirrors!! Lots of WOW! color powder and false lashes. As long as I can look normal during this fiasco, I'm good. That's what we all want, right? Just to look normal! Lord knows, we don't FEEL normal! My thought is, if I can finish this and still have people not know I went through chemo, the cold caps have done their job. Good luck on your drive, makes for a long day!! Do you wear the caps home and just change in the car?
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elastogelgirl,, good luck with treatment today. I'm her now too for my 4th T/C. Freezing cold due to cold caps even with my heated blanket. Almost done with pre meds.
Ladies enjoy your day. Hang in there.
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I start my chemo on Wednesday. I'm really worried about about using the Penguin Cold Caps correctly! Even if I keep my hair, what am I going to do about the grey when I can't color. I have my hair colored at a salon every four weeks and I'm sure that I have about 80% grey. This is going to be interesting. If I keep my hair, it's going to look terrible. What's a girl to do? I don't know if I would be pushing it to get one last color on Saturday before my chemo on Wednesday. I know the brand my hairdresser uses is mild as color goes, but it still has some levels of amonia and peroxide. I just don't know if I should risk it.
Pamela23 I'm with you about just wanting to look normal.
Elastogelgirl You look great! I hope your drive and treatment went well today.
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Hello!
Elastogel - You have a ton of hair! Looks good, no way anyone would notice. Hope the treatments and aftermath goes well. Be safe driving and enjoy the meal when you get done.
Pamela23 - did you wear fake eyelashes before? Are they easy to put on? I think of my sister, for a costume, wore them she would always have one 1/2 off and not know it.. that would be me.
Hopfull2 - Good luck today! Stay warm!
So ladies ..... I went to the wig store today. Almost got laughed out of there. She was very nice, I was referred to her by my Nurse Navigator.. The wig store owner just said I was doing much better than most cold cappers she'd seen and no way did I need a wig and didn't think I would. But did say everyone is different and I could lose a lot more but said I should be fine. She did show me this partial wig you put on top and it blends with your normal hair to add volume if I ever need it.. then I went to the beauty salon and cut off 1 1/2 inches. Don't know how it will help or do anything but it looks better not so scraggly. Cold Cap rep said yesterday a cut was fine. Just above shoulder, will look better under a hat. Also used Acure Hair Care stuff today, did really like it. Lost a lot of hair in wash today so that's why I ran to wig shop. I'll post pics one day when I feel comfortable..
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catgirl, I had a very similar situation to you. Salon color every 4 weeks, and at least 80% (probably more) gray. I did have a final color just a few days before starting chemo - my colorist got a special "organic" color for me for that time. I think my hair grew more slowly, at least at first, because that color looked great far longer than usual. When the grays started showing up in force I eventually started using...gaaaah, I can never remember the name of it. I got it at Ulta, it comes in a tube-like container and you apply it with something like a mascara wand; or there's another type with an applicator that looks more like a magic marker. That stuff did help; it doesn't completely cover, but tones down the gray. I know others have used other cover-up stuff much more recently than me, that they liked better than this stuff I used. Hard to find in this huge discussion thread! But hopefully someone will see this and point you in the right direction.
As for using the Penguin caps correctly, I had a local pro who taught my helpers and did my first session. But most just watch the video and practice ahead of time. I highly recommend changing your part with each cap change, drinking a LOT of water during chemo to keep that stuff moving, bring a neck pillow to support your head (the caps are heavy!) and dress as warmly as you can. I had an electric "throw" which was very nice. Good luck!
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Catgirl: I have dark brown hair and thanks to the lovely chemo reveal I have a whole lot more gray than I knew about. Some people look chic with gray. I am not one. Anyway, I think the product PatinMN is referring to is TouchBack. It goes on nicely (get the magic marker applicator) and isn't sticky or stiff. It smells a little and I think it will run if you get stuck in the rain. I also got Madison Reed. That's less horrible (in terms of Environmental Working Group safety) but it's powdery and I didn't love that in direct sunlight. (Thank you, Winter). I didn't use anything during chemo - my hair grew really slowly and I could do a deep side part and kind of put it back/up loosely to sort of disguise a bit. I was one of those people who was just about flattened by chemo (hopefully that won't be you!) so I didn't really go anywhere anyway. But I'm now 10 weeks PFC and this gray hair thing is driving me insane. I wish I had some great advice for you. I guess my suggestion would be to get a few different products now so you don't have to worry about it later. I think IL311 did well with root cover ups even during chemo - she looked great. If you haven't read her posts you might want to take a look. Best of luck to you with capping and chemo.
Happy almost weekend, everyone.
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Good morning,
Hair is holding up but my eyelashes and eyebrows not so much! I have also developed a rash on my face, looks like sunburn and comes and goes through out day. Anyone else have this? I am two weeks out last treatment. The eyelashes are noticeable and don't look like myself all of sudden. Anyone have fake eyelash advice? I have never used them and thinking I should give them a try but don't want to cause any damage. Skin advice? I purchases Aquafor, Cereve and Vanicream...hoping something works!!!
Happy Friday!
Lynne aka IL31
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