Cold Caps Users Past and Present, to Save Hair
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Everyone, I just had my second TC treatment yesterday. Started shedding a lot on day 14 after 1st treatment and am still shedding like crazy. Hair is so thin on top that I need to wear a wide fabric hairband to cover it. Any advice or helpful comments? We had trouble getting the Elastogel caps to fit well the first time and were more successful yesterday. We had to chill them with plastic bowls inside to keep the proper shape. If they are folded in half they develop lumps the are really difficult to smooth out and do not fit properly. Does shedding continue through all treatments and does hair start to come in at all before treatment is finished? I have 2 more TC sessions. Thanks!
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Madison, it sounds like you didn't have good contact with the top of your head the first time. I didn't use ElastoGels but they are known for being a little more difficult to get a tight fit as they are not adjustable. The good news is that each infusion stands on its own and once the shedding from infusion #1 stops, you won't necessarily continue to shed throughout the remainder of your treatments especially if you had more success with fit on round two. Hoping the best for you, hang in there...
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I just finished 12 weeks of taxol last week and I kept my hair with chemo cold caps. Can anyone tell me when I can color and cut my hair? What about washing? i only wash my hair once a week right now. Thank you!
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I am going into chemo in Dec after surgery. I am trying to decide on cold caps or not. I really don't want to lose my hair, but I have heard that you need someone there to change the caps every 30 min, that you are not able to comb your hair, and you are only to wash it once a week. On top of that it sounds like many people lose a significant amount of hair. Finally it is very uncomfortable and not covered by insurance. What do you all know about insurance coverage? It sounds like many of you have combed your hair. I have hair that tangles incredibly easily. I lose hair every day just combing out the tangles without chemo. I could not go multiple days without combing it at all. I am leaning against doing it.0
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Thanks, jc254, that is encouraging . Does anyone know if after this shed it would be safe to use my husband's Rogaine? I have 2 more TC treatments but would really like to get some hair back on the crown. Will anything grow during treatments or do I have to wait until PFC?
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MadisonMom-The Elastogels should come with a cardboard insert to help the caps hold the shape. Ask if you can get some from the company. Also use an ace bandage type of strap to keep it close to your scalp. I found something with velcro. In addition to surrounding the outside of caps with dry ice I also put dry ice in small ziploc bags(half closed) and place them inside the caps to get them real cold inside and also hold the bowl shape. Change them a bit sooner than penguin caps.
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Hi makingway, we thought the cardboard inserts provided by elastogel would be too insulating. The second time we found plastic bowls that fit inside the caps and are more rounded to fit my head shape better and used those. We packed pellet dry ice around the caps and also put bags of ice inside the caps. We changed the first 2 caps at 15 minutes and then the rest at 25 minutes. We also found the second time that we needed to take the caps out 25 minutes before putting them on to allow them to become flexible enough to use. The insides are around -30' C then.I used wide elastic hairbands to tighten the caps to my head - 3 from chin to crown and one around from front to nape of neck. It is so tight that my face looks all squashed to the center. I think we did a better job the second time so hope the shedding will let up soon! Thanks for your input!
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Tshire,
You look fabulous!!! My doc at UCSF was the one who told me about Coke capping as I'd never heard of it before. It really worked great for me and even the most anti capping oncology nurse said she was shocked after I was done and had hair. She said she was going to speak to all the doctors and recommend that they recommend capping
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Hi ladies I was wondering how long after chemo ends does your hair start to grow back? I know it will be slightly different for everyone. I will have my last round of chemo next week. As of now I have no regrowth. Just trying to get a idea of when things may happen.
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Hi TallnTerrific, here's some general answers to your questions:
It is highly recommended that you have someone to help with cap changes.
You can wash more than once a week, every three days generally using cold water. No blow drying.
Shedding while using cold caps is normal. Some women lose very little hair and there are others who lose a lot. Most women make it through without feeling the need to wear a wig or other head covering. Results also vary depending on the type of chemo you receive.
You should treat your hair gently. You can use a wide tooth comb, but not a brush. I used Kendra Daily Provision leave in spray and it really helped with tangles.
Cold caps are expensive and generally not covered by insurance although a few very persistent women have been successful getting insurance reimbursement. There is also the possibility of financial assistance through the cold caps assistance project.
I hope this helps with your cold cap decision. Good luck with your treatment, whatever you decide.
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Frostbite question:
For those of you that got frostbite ("frostnip") as the Penguin rep called it, did you lose more hair in those areas? If so, did it grow back? Did it take longer than the rest of your hair to start growing?
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TallnTerrific - just a few thoughts. I completely thought the same thing as you when I was deciding on caps. Not washing hair? Gray roots growing in? Greasy hair? Ick! Why would that be good??? Then I realized that it would take me years to grow back my long hair again. Chemo was going to be crappy anyway so why not have all the crap at once? If I don't cap, I will be crappy during chemo and then be crappy for a year later with bald head, peach fuzz and that "cancer" look because of my hair. I opted for caps. OK - gray roots were not attractive, but I used temporary root cover color and had a few cute hats when needed. Greasy hair....well the first several weeks it felt disgusting, but then my hair seemed to not get greasy anymore (almost 5 years later and I still only wash my hair twice a week...it doesn't get greasy at all). Styling hair....I had long hair. I found cute ways to clip it back loosely with headbands and rubberbands. Quite honestly all through chemo I ran into people I knew that had no idea I had cancer let alone was doing chemo. I saw people at my gym NOT going through chemo with worse hair than me! No pressure from me at all...this is a very personal decision. I just wanted to share because I remember thinking the exact same things as you..... Good luck!
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MadisonMom- Sometimes when the straps are too tight around temples and nape of neck it can cause the cap to rise up off the top of head. Be sure there is good contact in all areas by securing the straps firmly but not too tight. It doesn't take long to get the Elastogel caps to warm up-As soon as they're pliable they are ready to go on the head. It sounds like you're doing a wonderful job! Keep up the good work, and post some pics!
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Madison, try using Toppik hair fibers to cover the thin spots at the crown. I had thinning there as well and the Toppik works great to camouflage those areas. (You can find it online or at Ulta.) You may notice some hair growing back before the end of chemo, maybe not. But hang in there. If you had decent contact elsewhere, you'll be in good shape after your treatment is finished. There are others who had similar fit issues, maintained most of their hair and just used Toppik at the crown until their hair started filling in, which will go by faster at the end of the day than you think it will. Hang in there!
TallnTerrific, I had all the same concerns. About combing, against protocol I purchased a Tangle Teaser brush, made for swimmers, which glides through wet hair. I washed, then conditioned with approved product and used the Tangle Teaser to brush conditioner through in the shower, which made it glide through even more easily. You want to keep the conditioner away from the scalp and very gently hold the section of hair you're brushing at the top and then gently work out the tangles. It worked great. You can wash your hair every two to three days on non-infusion weeks. Contact Patsy at PCC about getting subsidized for caps if you can't afford it. Also, there's a nonprofit in Austin, TX, that might be a good resource for subsidizing. I can't remember the name, but it was recently posted, so go back a few pages in the threads or maybe someone will chime in. Honestly, if the idea of losing your hair doesn't bother you that much, then maybe cold capping isn't for you. But it doesn't get that greasy after the first week or two and most of us keep enough hair (more than enough) to go through chemo and the thereafter undetected. It's a personal decision for sure, but that's my two cents. Good luck whichever way you choose to go!
Wildflower, I got frostbite on my LAST infusion. I had the same worries. It was fine. The skin will start to "lift" at the edges. Very gently remove what comes away easily and leave what doesn't. Over the course of a week or two, that damaged skin will peel away (like a sunburn, but a little thicker), and a few strands may come with it, but everything on my head grew back. Don't worry! Just try not to pull at the skin too much if it's not cooperating.
Happy Friday ladies!
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Tshire, you look great! Good shooting!
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Just posted a quick update (30 days PFC - dose dense AC and Taxol) in the thread regarding my wife's Paxman cold capping....with the assistance of a friend and a generous amount of WOW powder (from Ulta) she went out yesterday w/o a cap (got her port removed - hooray).
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I washed and blew dry my hair daily using the caps. My hair is thin to begin with. I have to wash my hair or it looks greasy and gross. I did buy dry shampoo but I only used it once. I would comb hair gently out of shower, blow dry without using a brush and then brush it a little at the end and that was it. Didn't touch my hair the rest of the day.
I am 3 weeks + PFC and still getting hair in my brush. Not a lot but still anxious for it to stop. My hair needs coloring badly but I don't dare do anything until all shedding stops. A haircut would be nice too but not ready for that either.
Just trying to be patient.
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hi ladies! Day 31, and two AC infusions done. I am happy to say cold caps are working. Here is my latest zip lock Baggie picture. Trying to not get too excited because I have 2 more AC and 12 Taxol to go but it is still amazing to have hair at this point!
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Hello Ladies!! This is my first post, I have been reading for a couple of weeks.
I will be starting chemo the last week of Nov, or first of Dec. I havent had the official appt with my MO, Scheduled for Nov 12 unless I can move it up. I had a hard time deciding whether or not to do chemo. After 2 appts with MO, and then back to Surgeon ( Better communication, female), I have decided to go ahead with chemo. I would love to try cold capping and have applied for a grant thru CCAPS. ( my biggest fear is losing my hair) Does anyone know if it is possible to get funded for cold caps??? I hope so!! Fingers crossed!
I love this wonderful forum where we can all share our experiences, and look forward to making new friends thru this
Jodi
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jodes001, I think I responded to you in another thread. I have finished 2 AC chemos and have lost little to no hair so far. My third treatment is a week from tomorrow. It is not easy but very doable. I use chemo cold caps based in Dallas and love them.
Suzanne50 you are the first person I've seen that washed their hair and dried it that much. I am so intrigued. I have huge events this weekend and would love to wash my hair more than once this weekend..and I haven't dried it since I started chemo either. Has anyone else done this?
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I am currently using the cold caps and I am on 16 weeks of A/C (four rounds) and Taxol (four rounds). I have my second A/C chemo on Friday. I am so hopeful I can save my hair. LRF Texan, your note has inspired me. I will have to have a mastectomy after chemo as they weren't able to get clear margins with two lumpectomies, and I tested positive for CHEK2. So feeling as normal as possible, as a working mom in my 40s, is really key right now. Please keep your fingers crossed for me.
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Malonejen,
Just remember every day you have hair is a day you wouldn't have without cold caps. Today was my hair wash day / all is good.
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Hello,
Can someone tell me the process? Do you wear the cap at chemo..how many times per week..how many hours per day, etc? I have super long hair and thick...I would like to try and keep it. However, I'm prepared to shave and #wigup.
Thank you,
Michelle
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lrftexan, you look amazing!!! How many more tx til you are done?
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dancertrancer,
Thank you so much. I have two more AC and then I go to the weekly Taxol for 12 weeks. I have been so blessed honestly. More than just saving my hair I haven't taken any time off work and have had only 2 days where I didn't feel up to par. The power of prayer.
MB12,
If you read the threads they give you so much information. I use chemo caps based in Dallas. The time varies but you wear them before, during and after chemo (only chemo day). I have baby fine hair so I have a lot less to lose but so far so good, and I am am one the hardest chemos on hair. No one can guarantee you success but it's sure worth a try.
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Welcome, maloneJen and MB12! Keep us posted on your journeys...
MB, there's also good information here, on the main Breastcancer.org site's page on Cold Caps.
We hope this helps!
--The Mods
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Just another plea to our capper graduates to PLEASE share your basic story and pictures on the new board that dancetrancer set up. We all know how important those were to us in making our decision to take a chance on the caps and being able to actually see that they really do work. To date, we only have 4 cappers who have posted, so please take a few minutes to help us get the stories more easily accessible to those who are just starting the journey. Thank you!
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MB12. start by looking at the Penguin Cold Cap site for the most general questions and info about the chemo regimens it works with and the process (which includes a capping video). You only wear the caps on chemo days, but there is a specific hair care protocol that goes along with capping. The PCC site will give you all the information you need to start thinking about the process. (Though if chemo is imminent, within the next two to three weeks, get going on gathering info.) Then come back here and ask for specifics. Everyone will be happy to chime in and give you their tips. Good luck. Capping works if your chemo regimen is compatible!
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MB12- You wear the caps during chemo, and then 2 hours after. I just got approved for a grant to pay $300 a month toward the rental. Check out CCAPS.org.
You have to have a person with you to change the caps every thirty minutes.Theres tons more info on the website!
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MB,
You only wear the cap at chemo... How many hours during that day depends on what you're getting. I have shoulder length hair and after 12 weeks of taxol herceptin nice a week, kept it.
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