Cold Caps Users Past and Present, to Save Hair
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Hi all...today I broke down and ordered a wig. I've completed 4 AC treatments and 4 of 12 weekly Taxol treatments. My hair had thinned significantly but last week saw significant balding on top and hair is shedding so badly right now. I would guess I've lost almost 50% of my hair with 8 weeks to go, and I just don't think I can lose much more hair and go out in public without a covering. So the question now is whether to continue the cold capping. I'm using the Dignicap machine. Friends and hubby thought I would stop the cold cap now that I have the wig but I can't help but think that having some hair to start re-growth with is better than none. Any suggestions??? I'm leaning towards continuing the cold cap although it does make chemo a long painful day.
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Elastogelgirl - Thanks for your words of encouragement. I bought my first Toppik yesterday since I've thinned so much around the crown and along my part. The front of my head by my hairline is where I have the thickest hair left, so I'm extra mad that I might have screwed up there! But you're right, Toppik will come to the rescue.
SoniaL - I am also down to my last wisps of hair, and shedding a bunch every day, but I'm going to keep capping in hopes that I can save the new follicles that are growing in every day from being damaged. MJPow, who also was on ACx4 and Taxol x12, said she noticed new growth after the 5th or 6th Taxol. If you've ever waxed your body hair, you know how at least 1/8" of the hair is under the skin, and average hair grows 1/2" per month. If she noticed growth in the 5th or 6th week, that means her hair started growing after AC, and the cold caps kept the Taxol from affecting her new growth! If you stopped capping now, you'll lose the hair that is probably already on its way in.
I think I made a mistake after my 2nd and 3rd AC rounds in shampooing my hair. I lathered like I normally would, and I raked my fingers through my hair to lightly extract the hair that I thought was already shed. I think that I inadvertently pulled out some hair, even though I was monitoring carefully to not tug at my hair. I lost so much hair in those two shampooings after my 2ND and 3Rd AC! Or maybe that was inevitable. I should have just pressed lather into my hair, rinsed, use a little conditioner away from the roots, and combed my hair with a super wide comb after I was out of the shower and my hair was dried. That's how I wash my hair now.
My other trick I've discovered is dry blow drying. I let my hair air-dry frizzy. Then I take a tiny thin top section of dry hair, gently lay it on a boar's hair round brush, and blow dry it smooth. There's no tug because it's so light from being dry already, the heat is far away from my scalp, and the hair still smooths out.
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Thanks Elberama...that is good encouragement to keep going with the capping. MJPow's report about new growth is also encouraging so I am hoping that I will eventually see some new growth, or at least a slow-down to the shedding. I hope that your hairline won't be affected. Good luck to you!
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Hi everyone thanks for the love on finishing! I am so excited not to have to go get my blood drawn tomorrow and no chemo Thursday. I feel yucky but hoping every day I will get stronger.I have my radiation appointment August 16 and then will begin a month every Monday through Friday.
I might have asked before but those of you that are finished how long did you waitto use hair regrowth shampoos?
My hair is really coming in! No bald spots and everyone keeps saying how thick my hair looks on top!
Sending the caps back tomorrow yay!
Hang in there everyone
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Congratulations MJPOW! I'm 5 weeks post chemo and I'm staying on the same routine and using the same shampoo. Acure and Pureology Shampoo. I started shedding a little more over the last two weeks but considering I have not had much shedding before, I'm not surprised my turn has come. I still have 90% of my hair. I am also losing my eyebrows now which is strange that waited awhile too before falling out. Eyelashes are doing pretty good but I have been using a latisse type product called careprost which I bought from Hendrix scientific online.
Good luck and I hope you feel better each day
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MJPow--YAY!!!!!!!!! Congratulations on finishing treatment and capping!!! Nothing like the feeling of sending those caps back!!!! You have done great, and will continue to do so. Post chemo, even though it has its little surprises, is SO wonderful--everyday you will feel more and more like your "normal" self.
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MJpow-high five! Your so adorable! So happy to see you've finished. Yay!!! Rads will go fast and your hair will recover fast too!
Hugs e
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MJPOW, CONGRATS!!! I'm 10 1/2 months PFC and read here from time to time and your post brought tears to my eyes w your positive attitude. Thankyou and continue with it! I wish I had that much support w all your family and friends your so forunate !
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thank u so much everyone I feel so blessed even on this cancer journey there is beauty I just see it much clearer now. Cancer changes everything perspective life hair digestion!!
This was the second time around for me and hopefully the last.
You all are amazing and I'm so proud of you to face this head on. Stay strong 💪🏻
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MJPow - I have been following you (stalking a bit lol!) Congratulations! I did my first treatment last week and have 5 more to go. My hubby is my capper and boy was he exhausted at the end of it. To see stories like yours is an inspiration to me. So happy for you!!!!
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Congratulations MJ Pow you have been so helpful like the others with all of us who started caping recently. I count the days to finish like you today. For me 3 round to go. God bless you!
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Love the pic, MJ!! I didn't realize this was the 2nd time around--no foot notes. I think that's everyone's worse fear right now. What a strong woman you are! I was wondering when you're ready, if you could share your story with us. Or PM if you don't want to post it.
KCMC--How did the 1st one go? Not sure your regimen, but I was ok until number 3 when I didn't bounce back as fast as the first two. That's the beginning of the hardest part so hang in there!! I wrote down my SEs everyday so I would remember what to expect the next round. You think you'll remember, but you don't. It helps you stay ahead of them! Good luck!
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Congratulations MJ on finishing chemo. I love the picture you posted. Good luck with radiation. I had rad 13 years ago when dx with DCIS. I just felt tired near the end of treatments but no other side effects.
Now I'm finished with cold cap & chemo for the new cancer dx -- triple negitive. All of the communities have really helped!!!
I'm 19 PFC-- my hair is growing back in-- darker and more grey. ( although I used to color my hair every 6 weeks before so I'm not sure if it's really more grey or just I'm seeing more grey because I haven't colored in so long. I want to try a vegetable or non permanent color. I think someone on here mentioned they used Clarol Natual instincts. I tried looking back at previous posts but couldn't find it.
Has anyone tried Naturtint products or hair color from Madison Reed? My hair is still thin but I would like to cover the dark, grey top and make it all one color.
Thanks!!
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CONGRATULATIONS Mjpow!!!! I started chemo last Friday and have been a bit out of it! I wanted to thank all of you ladies for sharing your experiences and tips for capping. You guys were right, it is tolerable even for a cold wimp like me 😱. I don't think I would have tried it without your feedback!0
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congrats mjpow, yay your done. What a relief to be able to send the caps back.
Michicali, I used Natural instisemi permanent And it worked well. It's also amonis free. I did not notice extra shed. I used recently I'm 5 months PFC. My hair is still so thin. I had to cut some of it due to dead dry ends and breakage. So now I have all kinds of different lengths. Looks like if I had a pixie but growing it out. I started with beck length hair. I pray that by xmas time my hair is back to normal.
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Congrats MjPow!!!!!! So happy for you! It would be nice if you can post pictures before/during and after to show the progress.
I finished taxol # 6 today (6 more to go). I noticed some regrowth around the ears (but not on top) and the shedding seems to slow down this week! Even though, I am using castor oil (Jamaican Black) every nights on my eyebrows and lashes, I lost most of my lashes but the new ones are coming in already:) My eyebrows have shedded a lot but I can see the new ones are coming in just not as fast as lashes.
Best of luck to you!!!
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Pamela 23 - Thanks for the tip, my oncologist and pharmacist at the oncology center told me to keep a journal of side effects. They weren't what I expected. Had chemo on Wednesday, fine Thursday and Friday probably because of steroids. I was able to clean the bathrooms and kitchen. Haven't cleaned since I went in on May 22nd for Double Mastectomy DIEP Flap. Healing slowly but my plastic surgeon says I'll get to the end result just like everyone else just a bit slower. Lost 30 pound but needed to narcotics don't agree with me and I didn't even have to take an 800 mg of ibuprofen yesterday. So that pain is gone. Over the weekend I had a nasty headache and was tired slept 14 hours on Saturday went to my pool club on Sunday and slept 2 hours in the shade. Woke up Monday and was fine unit 2:00 p.m. nausea and diarrhea. Felt terrible stayed in bed all day woke up fine Tuesday, same thing 2:00 p.m. it started again. Yesterday was fine I invited my sons friends over I expected them to go to the pool but it was raining so had boys over all day yesterday but I was okay just tired. My sons are older 10 and 13 so they have become pretty responsible quickly and don't mind helping mom at all.
Cold Capping was hard on my hubby in the infusion center for 5 hours and 4 more at home. We only live 10 minutes away so not so bad. I am on carboplatin, docetaxol, perjeta and herceptin. I am triple positive but no lymph node involvement. When I finish the 5 more rounds I will be on herceptin for a year. No hair loss yet too early but I am waiting. I purchased Kenra and Accure. I washed day 3 after chemo which was Saturday and haven't since. I already purchased Topik knowing I will probably need it. I was very lucky my oncologist nurse lent me the cold caps somebody donated them to the Infusion Center. I buy my dry ice at a discount store. Found two places nearby. Thank god I did the first place I called on Monday before and they informed me they ran out. Geez, I found another place further away from home cheaper and they have the pellets which I think is better than the slabs. I also use ace bandages to wrap around the caps for a tighter fit. So tight I can't talk. LOL! My insurance company allowed me to purchase a wig so I did just in case, a nice one with real hair I can style just in case. I have my sons graduation and confirmation in the spring. I figure if capping doesn't work at least my hair will come back, my cousins hair never came back, so I was worried.
Hate to hear side effects get worse because we have a family vacation planned 11 days after my third cycle. Ugh! But maybe the journal will help. I will try to blog more often than stalk so I too can help all coming up behind me. You ladies are invaluable and I don't know what I would do without all you. I haven't gone to any group meetings yet because of summer and the kids but I will once they go back to school. So this sight is my group therapy. I have also met a nice lady on here we have been private messaging back/forth we were diagnosed at the same time. Just too bad she lives far away. I have sent the kids to a children's psychiatrist because I believe cancer is above my parenting skills lol! I do feel more in control since I have started treatment, more positive.
Talk to you all soon.
Monica
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Question for those who are cold capping without renting the cold caps-
Did you purchase caps or get them from someone else?
What size caps did you get?
How many you caps did you buy?
What instructions did you follow?
How often did you change caps during chemo?
How did you know how much dry ice to use?
I found elasto gel caps on amazon for around $40 and I can get dry ice locally. I'm thinking I can do this myself for far less than renting from penguin or polar. I'm sure there are more details I'm missing and there is probably a thread for this, but I didn't find it through my searches for DIY cold capping. Thank you in advance for your help ladies!0 -
tough cookie-I don't think the ones on Amazon are the same. Check the photos here's what mine looked like.
You need to make yourself a whole set of head bands as the chin strap is ineffective. Things need to be uncomfortably tight all over. Loose areas will cause balding.
Good luck.. I don't know if my photo is a place to buy but the price is going about 150 per cap I think. Any less than that and you've probably got the wrong cap.
Hugs good luck
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Tough Cookie the ones that were donated to my infusion center that I am using each have a price tag of $299.00 on each of the 4 packaging. The packaging says Southwest Technologies Elastogel 1746 Levee Road North Kansas City, MO Phone 1-800-247-9951, 816-221-3995 email is info@elastogel.com website: elastogel.com. I have four of them but Elastogelgirl answered a previous question of mine and said 3 would be plenty. I numbered every hat on rotation in the ziplock bag that they came in. When I called them they told me:
Keep them zip locked in your home freezer
Have an ice chest on hand
buy dry ice night before - I did not do this I bought morning of since my infusion started at 12 noon my husband was at dry ice factory when they opened at 7:00 a.m. but the dry ice kept for days outside on my back porch in the 90 degree NY weather so next infusion I will be buying the night before. Also have a second distributor on hand because my first choice of distributor ran out thank god I called the day before.
Pellets are better than the slabs of dry ice
Rotate every 20 minutes
Dampen your hair and put a thin shower cap on your head use a wide tooth comb and comb straight back. I got my shower caps at the dollar store.
Start one Hour prior to infusion process
Use ace bandages all around cap for a tighter fit - bought these too at the dollar store
Use a maxi pad on your forehead - dollar store too lol!
Use pantyliners for your ears - also purchased at dollar store.
I had no choice on size since they were donated and mine are a large and I am glad I got the ace bandages 3 rolls to tighten up everthing when lunch was delivered I could barely open my mouth up to eat
I kept mine on 3 hours after I got home. Probably should have been longer. I also took an electric blanket with me which helped and wore a comfy fleece sweat suit. Even though it was probably 85 degrees that day.
Good Luck in whatever you choose to do. They yellow around the caps are the dollar store ace bandages.
Best of Luck! If I didn't get these for free I was going to go with Penguin Cold Caps.
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Tough cookie one more thing I bought Kenra and Accure shampoos - I had chemo last Wednesday and washed my hair on Saturday and haven't since. Maybe Saturday again. No shedding yet because it is too early. Also only comb my hair once a day.
Monica
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tough cookie-if you are wetting your hair as is the elastogel method. Be sure not to get your ear pads wet. I got frostbite blister from a wet ear. I recovered in two weeks no probs with ear now. I was complaining about a cold ear then I felt nothing. If you have hot (cold) spots address them before you get frostbite.
I love KCMC approach to tightness! And yes we only used three of our four caps. We never put them in the freezer we were afraid it would get the caps moist and make them harder to shape to your head.
And again if the price is too low your prob not getting the right thing.
Good luck this is a challenge to add to your treatment but it can kinda refocus your mind on the hair fight and not the dreaded disease.
Hugs e
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Seriously considering hair extensions so the 2 inch little tuffs throughout my hair would be same length as rest of my hair......
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summer 2016--- hair extensions! Me too! I hear they are bad for you hair? Anyone?
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New to this world & starting chemo next week. Getting good advice on this forum for cold capping. Bought some caps.
Some questions:
How much dry ice do I need to buy for 4 caps?
Is it worth it to buy a decent cooler instead of the one I took camping last week?
My hair is below shoulder now & wanna cut it before chemo starts, how big a no-no is this? Doing this because I color my hair & it will be growing in with lots of gray. Thoughts? How'd you handle it?
Thanks for help. I am simultaneously perusing the forum for more info.
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Summer-- I was just fantasizing about extensions this morning! I pulled my scraggly hair into a ponytail to go for a run and my sides and around my hairline look ridiculous. I have about 2-2 1/2" of hair in those spots which sticks up without taking a heat appliance to it. I may call my local wig shop and ask them what they would recommend--think they'd have clip ins? I heard extensions are a lot of time and money and need to be changed every 3 months.
SJane--welcome to the forum! We had Penguin cold caps. My husband got the dry ice and he thought the thickness was more important than the actual weight. We'd get between 60-80lbs. On one round, he got thinner sheets and they started to break throughout the day and was harder to cover the caps completely. Also, Penguin sent an igloo cooler that is sold at Walmart for $25 so if yours is of that caliber, you should be fine. When do you start? I colored my hair mis Oct and started chemo mid Nov so I'd trim it now before you start anything. Elastogelgirl cut a lot more off I think, she may have some input. I just tried to PM you the guidelines for hair and the Penguin pamphlet that tells you what you need, but it only lets me attach a video, photo or link. This is a pdf file. PM am email address and I can email them to you if you're interested.
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Dont cut your hair! I had long hair. And day 21 after the first chemo it was so tangled that i had to go to a hair salon and she spent 6 hours to detangled it. I lost 30 % of my hair that was the longest part so now i have it short. Everybody thinks i cut it. And because they dont know i say yes i cut it because of the summer but i dont like it. So i use a clip all the time with a pony tail. But i still have hair. Good luck!
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sjane I cut 13 inches off my hair post start...just after my first Ac treatment. I did not know it was not recommended, I kept a ton of my hair thru my Ac treatments. Unfortunately I lost most of my hair toward the end during Dose dense taxol. It just came out for two weeks straight towards the end.
I don't think cutting it made a difference...especially since I did not lose much hair during Ac chemo.
Watching my hair falling all winter would have been more devastating with 18 inch strands vs 5-6 inch strands coming off the whole time. I also thought my hair was too heavy to deal with trying to wash and be gentle with it.
In the end my capping was not very successful.
I would do it again the same way,.. though I would have colored and cut prior to treatment if I'd had enough lead time.
I now realize another reason for my poor success. My loss have been worse than normal due to Prescription of a course of prednisone during taxol.. for a nasty all over rash I had. I lost a load of hair after that debacle. I also had been wearing ski helmets and hats and getting a sweaty hot head exercising all winter. I broke a lot of rules. I wore scarves too
I never wore a wig and I'm glad I capped. My hair is growing in so healthy. I had no shedding after chemo was over. But I have so little of the old hair left.
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Sjane--weight is an issue, so a cooler with wheels is the way to go. As someone mentioned, not very expensive at Walmart. Put a fleece blanket or towel on top of ice in cooler to help keep the ice. Good luck !
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hi. I too have been researching extensions. But it's not good for our hair. It may even cause bald spots. I was looking into tape extensions but even that's Not good. So I maybe purchase some clip ins from Sally's. I look like my old self again my lashes are super long and i got my eyebrows microbladed. I gained a bit of weight that I had lost. I'm In the process of reconstruction with tissue expanders in, just my hair is what's keeping me from feeling 100%. Ugggh, I hope it goes back to nonormal soon
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