Cold Caps Users Past and Present, to Save Hair
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thanks Daye! I'm so excited for one treatment left. So if I blowdry scalp should I just use cool? Do you know if it'll control frizz?
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Dlove- I think you would be fine to use cool on your scalp!
2-boys mom- At 12 weeks PFC, I went on a cruise, washed my hair every day that week and went snorkeling. I didn't see an increase in shedding, so I think you would be fine to start washing every other day!
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Hi ladies.... I have been feeling like complete poop for the past week. There were a few questions for me on here.I only wash my hair once per week, but I have always done that. Some people can't go that long, but I always have just because it's healthier. I think twice per week would be fine while using the caps. I hate hair washing day because that is when I really see a lot of shedding.
I do still use hair clips and put it in a pony tail. I'm just very gentle no matter what I do. No heat, No products. I have been all natural for the past few months and everyone says its a good look for me lol.
I am so annoyed with all the doctors saying Cold Caps don't work. When I was at the cancer center last week everyone was surprised about my hair. And impressed. When they sent me the caps I got a pamphlet with a list of MANY successful cold cap users. And hello.... look at all of us. We are not making this stuff up. It's frustrating that so many doctors are dismissing them.
Does the shedding get better or worse over the course of treatment? I'm halfway through and I feel like my shedding has gotten much worse over the past few days. Still no clumps missing and nothing to really freak me out yet. So hopefully it stays this way.
Also, the CCAP (Cold Caps Assistance Project) covered my caps at 100%. I paid nothing. On top of that, a local distributor has agreed to DONATE all of my dry ice for me. So they are essentially costing me nothing but the time it takes to use them. I am sooooo greatful for this. I did have to provide proof of income and a financial hardship, but nonetheless, it helped me out tremendously and I cannot thank these people enough. My list for thank-you cards after this is all over keeps growing by the day
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FL_sunshine- fantastic on the donation and covering of the cost! My shedding was worse after my second treatment then leveled and kept losing same amount. It picked up after I finished treatment but I never required a wig and lost about 50% or less. Just keep positive thoughts and some hair is a lot better than being bald!!! Good luck!!
Daye- thanks so much for the info! It is great to get advice from others on this site! Thanks again!
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So the top front of my head had started to hurt when I touch my hair. Does that mean it's going to fall out??? The weird part...is that area was probably the coldest on the cold caps.
Did anyone else's head/hair hurt and not fall out???
I'm 12 days past my 1st treatment...
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Jennliza, you're at the hardest/worst part of cold caps- waitng to see what will happen. Quite a few women reported that their hair hurt, it's not unusual and doesn't mean your hair's about to fall out. I haven't read of a single woman on your chemo regimen in the year+ I've been active on this thread who didn't have success using cold caps. There's no reason to think you'll be any different. Keep following the protocol and be gentle on your hair. Once you get to your second treatment with hair (and you will!) you'll start to feel more confident that they're working.
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Thank you for all the useful information and encouragement. Sloan is actually now allowing cold caps. I think they lost too many patients to forbid them anymore. However, I have to do the old dry ice/cooler method. I reached out to the Rapunzel Project to see if I could get one of their volunteers to assist or see if they could convince Sloan to take a donated freezer (no such luck there). I'm motivated to do it no matter the cost. I feel like that is the only thing right now that is making my upcoming treatment not seem like the end of me. I found someone on the penguin cold cap message board that had the same insurance as me and was able to get half of the cost covered. (Fingers crossed but if not, I'll just be actively selling my handbags on eBay!)
Silly question, but I have a 1 year old that loves to pull mummy's long hair. I know they suggest not pulling your hair back but maybe just a scrunchie (omg-makes me think of sitc episode where Carrie explains how bad scrunchies are to her boyfriend.) Anyone come up with any ways to keep their toddlers from yanking what's left of her hair out. I picture her yanking the scrunchied pony tail and the whole thing comes off.
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Hi Daniella,
So happy you are going to use the caps! What i found helped keep ME from playing with my own hair was to use baby claw clips to pull it back, a few on each side. They're light enough that they don't pull on the hair so I didn't have to put it in a pony tail. I know others have done loose ponys or loose braids as well. Keep your questions coming, we'll all help you get through this!
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jennliza I did TCH, had plenty of episodes of my scalp hurting throughout the course of my treatment. I shed, but never lost enough for others to have a clue I was getting chemo. The pain, IMO, is either a bit of frostbite from the caps being too cold or it is a sign of some shedding that is going to occur, which is to be expected with cold caps. Either way it did not lead to me losing all my hair, and I'm sure it will be the same for you - hang in there!
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daniella- I use a scrunchy pretty much every day, my 17 month old pulls my hair constantly.
I wasn't brave enough for scrunchies until after my 2nd treatment. I just keep it low and loose, still have hair
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I am now 4.5 mos. PFC (time flies!) and my hair is growing like crazy.
For those going through the capping now - I read through ALL the posts on this thread trying to establish patterns of shedding according to treatment protocols. There are several distinct patterns but overall, it's a personal thing. Many people shed heavily days 18-30 and some do most of the shedding right after the second chemo. Some see it pick up toward the end of chemo and others make it all the way through chemo only to lose a lot PFC. I really believe that we're going to lose a certain amount of hair sooner or later. With the exception of a few women doing ACT, everyone survived. Accounts of final hair loss have ranged from very very little to 50% (with only ACT persons having more). I lost about 50% and guess what? I still have enough hair that I didn't need a wig.
I started wearing my hair in scrunchies after chemo was complete and haven't had a problem. Now my hair is growing like a weed. I have my long hair and I have hairs about 2 inches long. Oh yes, you can just imagine the fashion statement I am making. As soon as the 2" hairs get longer, I'll have it evened out. Until then I just have these funny looking curls around my head. It's the type of problem I enjoy having.
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yesterday, chemo #5. Almost there. I'm really worrying about Pfc shedding, my hair feels so thin right now. But I have hair. I just keep repeating that to myself daily. I. Still. Have. Hair.
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wyomama - your hair looks fantastic! I sure can't tell there is any thinning, and it looks shiny and in good condition. Maybe not "normal" to you, but noone else can tell!
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wyomama - your hair looks fabulous! For someone who does not know you, I would never have any idea that you were going through chemo or that you felt your hair was thinning a lot. It looks full and healthy. Good for you for doing such a great job capping!
Daniella - I can tell you from my own experience in May of 2012 that Memorial Sloan Kettering definitely lost people like me who wanted to use cold caps. As a consequence, it had to have lost a lot of money because cancer treatment is big business. I was told by my Penguin Cold Cap representative that she had been contacted by five other women who were also going to be treated at MSK that same May who wanted to use cold caps. I do not know what the other women ended up doing, but I left.
My surgeon at MSK told me during check ups that after looking into cold caps through the fall and winter MSK decided to change its policy in the spring of 2013 to allow patients to use them. Unfortunately, they are still not being told about them, or that they might be able to save their hair, so only those who happen to find out in time and ask, do it. Some, like you, still have had to push for the right to use them.
I'd had a lumpectomy at MSK and expected to have chemo there too, however, no matter how I argued and reasoned, my oncologist told me the hospital would "absolutely" not allow me to use cold caps. She even resisted my wanting to ice my nails, even though MSK was running a clinical trial on icing nails at that time.
I finally got mad and decided I was a consumer as well as a cancer patient and that I had the right to ice my head if I wanted to. So, I picked up my skirts in annoyance and flounced across the street to New York Hospital's Well Cornell Breast Center where I was prepared to fight to use cold caps, only to be told with amusement that 40 other women had already used them there and that I was welcome to use them also. They had a medical freezer for the caps which made capping far easier, and the doctors and staff were extremely supportive of capping. They have had many more women use them since then and just finished a formal FDA clinical study of Dignicaps, which is another scalp cooling method.
I was given Taxotere Cytoxan, the same chemo MSK would have given me. Only, I kept most of my hair instead of going bald within two weeks as MSK told me would happen. I thinned about 35% overall, but always had full coverage. The caps are COLD, but, do-able if you want to save your hair. Keeping my hair was important to me as I have always had long hair. It is my identity. Keeping it helped me remain positive and upbeat in my outlook which is strong medicine in itself. If I had lost it, I would have felt as if cancer had won that round.
I met young women there who used cold caps as they didn't want their small kids to see "Sick Mommy" and get scared. Chemo can make you look pretty sick and grey at times, but having hair on your head helps make you feel and look as normal as possible. It certainly would to your child. Try not to let the child pull on your hair if you use cold caps, it will pull out hair that have roots in a very fragile state. My daughter loved to pull my hair at about your little one's age. Both of my children twined their hands in my hair for comfort when I held them. It was lovely.
I lost my eyebrows and lashes, but they came back pretty quickly. Some on here seemed to have kept theirs by using certain products like Latisse, but I am blue eyed and it would have turned them dark which I didn't want.
Good luck!
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I will be starting chemo in two weeks, and have just arranged delivery of 14 cold caps and 4 headbands. I am in treatment at UCSF so they have a freezer for use, and they can stay in there between treatments. When I talked to the rep today, it seems like 1 hour (50 min) before, then during, then 4 hrs after? Wow. Maybe like 8 hrs? I am trying to arrange the appointments so i see my BS and MO in clinic the same day, so I don't know how it's going to work. It seems like a ton of extra effort, and with the AC chemo that I think I'll be on, my BS said 50/50 chance to keep my hair. Sometimes I think I should just shave it all and save my self the headache (literally) but then I think I should really go for it. Frankly the hair loss aspect is scarier to me (right now anyway) then the treatments, maybe that will change. And no aluminum in your antiperspirant? Stinky, fat and bald is no way to go through life!
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wyomama your hair looks amazing! God bless! I hope you have continued success! Love the pics.
Hope49- I guess I'll be wearing some serious scrunchies to keep the little one off my hair. Trying to teach her now not to touch mummy's hair. (Yeah, right)
Hortense - thank you for the info. I haven't even met with my MO yet! They switched MO's on me without telling me! The new Mo is a little younger so hoping she doesn't give me a hard time about the caps. Even if she does, I don't care; I'm using them. My hair has always been super long and like you, it's part of my identity. I totally agree, look good, feel good. I don't want to look sick. I don't want. Y husband to roll over in bed and find a bald head where once was all my pretty hair. It's my only silver lining right now - I pray it works. And I'm going to my derm this week for a latisse rx. I can't imagine drawing my eyebrows. I'm not very good at that and would end up with angry chola brows. Lol
Did anyone do anything to prepare their scalp and hair before chemo? I have about 4-6 weeks until I start so been using this shampoo/conditioner line from Follicle Forever. Also started some extra hair skin nails vitamins, iron and omega-3. I am so overdue for color but decided to just skip it. Let everyone see the long gray straggly hair (from not washing during chemo) and think I went crunchy. Penguin cap rep suggested taking 250mg of silica 3xs a day. My local natural market looked at me like I was nuts when I asked for that amount.
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Look at all that BEAUTIFUL hair Wyomama! Wahoo! So happy for you.
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gatomal, yes, you should plan on about 8 hours of cap wearing. I had a medical freezer at my facility too, and it did make life easier (and cheaper than buying dry ice each time). My freezer had 28 caps in it, I think, and there were times when we went through more than 14 - like when some weren't cold enough. (The freezer had issues!). Others were using the caps while I was, so my helpers cleaned the used caps thoroughly after use before putting them back in the freezer. Make sure you're scheduled for early in the day, so you don't run into closing time at your facility. Some on this board have been kicked out while trying to do their cold caps!
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Daniella - Instead of taking big silica pills, take liquid silica as it has been clinically proven to be absorbed better by our bodies as well as proven to strengthen hair shafts and thicken hair. I buy a liquid form called BioSil which is available on Amazon from several providers. Five drops in a bit of juice daily makes it easy to take as it doesn't taste good with water.
Taking BioSil has done wonders for my hair, so much so that my salon is now recommending it to women with thinning hair. It takes a number of months before you see difference, but that's to be expected as hair needs time to grow.
Biotin is another supplement that is good for hair. I wash mine down each morning with my BioSil spiked juice
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So for those of you who are done, how long did you wait to cut your hair, and did anyone try cutting off more than 1-2 inches? I'm now almost 9 weeks PFC and I think the shedding is under control. But it'd be really good to chop off about 4-5 inches of hair, it's gotten ragged. I'm just worried because I think PCC says "dramatic" haircuts can make your hair weaker, and more will fall out.
Gatomal, ditto what PatinMN said. It's important to start early in the day, I'm one of those people who had to hang around a public hospital lounge area wearing my last cap after the infusion nurses went home. But, I think it was certainly worth it, if anything just to feel more normal when you're done.
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Well the shedding has begun....exactly 2 weeks to the day since chemo....
I'm taking calcium, silica and biotin.....and using rapidlash for my eyelashes/brows.
I hope this works!!!
Did anyone have better results if they wore the caps during the week after chemo?
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Wyomamma - Yeeehaaaaa! That is some fine head of hair you have regardless of what you may think.
CoastalPat - I cut off about 5 inches at around 3.5 mos PFC with no problem and I had it colored last week and still no change. Boy does it feel better.
Ladies - Insurance reimbursement check to the tune of $500 arrived today. I did not read the details of the explanation of benefits. I honestly expected nothing because my plan clearly states that preauthorization is required for durable medical goods. I had no time to deal with insurance in preparation for chemo. I followed all the instructions provided on this thread by TMB. Thank you TMB!
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That is awesome WW! I wish I had pursued it, but I was too overwhelmed at the time, plus those tips had not been presented yet...love to see how the CC movement is progressing!
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DaniellaD,
My one-year-old son has already caused so much breakage around my hairline. He gives me hugs by squishing his face into mine and he uses fistfuls of my hair at the temples to bring himself in close. His hugs are definitely worth it, but to keep him from making bald spots I plan to make a super-wide headband out of stretchy silky fabric- basically a hair sock. Hmm. or an infinity scarf I can pull over my hair. Please post if you come up with something else that works. :-)
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harrysmom - I was totally thinking of doing that for something to wear during the day and sleep. My hair is really long and my little one basically uses my hair as a support when I carry her by holding a clump at the nape of my neck. I know pcc says not to wear any scarves or headbands but I like your idea. It just has to be something that was stay cool. How do you fashion your hair to sleep? I was considering wearing an old school silk cap since I won't be able to tie it up in a bun. What about tassie- it's a terry cloth large headband sort of thing that you can pile your hair into. They are sold to wear when washing your face or doing a mask but it might work bc you could pull the edges off your hairline and the scalp portion is open.
Wyomama- how to you wear your hair to sleep? Even with a silk pillowcase, if you toss and turn your long hair would go all over without some sort of way to hold it in place. Maybe I can learn to sleep sitting up like the little sister in that old movie "Friday" - lol
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I either sleep with nothing in my hair or I sleep with a low and loosely tied ponytail.
My hair is in a low and loose bun right now. It's too hot to leave my hair just down. I just try to be gentle.
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I just had my fourth treatment of TCHP--and still have my hair!! My onc was so surprised as she was skeptical. My tumors have shrunk to nothing--now just deciding on lim or mast. She was more excited about that but was very happy that caps were working.
After my first treatment I was so nervous that they wouldn't work, but have had some shedding--about 30%. I had extreme itching after that first one and swore from all my scratching that that was it--I was going to lose it. So far so good. My only thing is my hair looks awful b/c I have very curly and greying hair, but I figure it's better than being bald and having no hair at all. I can get away with using the wide tooth comb and some organic mousse and defrizzing spray---still not my normal style.
Hang in there---we were all first timers, and now I'm in the last half of all of this.
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there is an after hours cancer resource center in the hospital with another set of freezers and a bathroom that I can use after hours. They actually give you a key card for access, so that sounds really great. We are trying to schedule infusion with BS and MO clinic the same day, so I think I may actually be in the clinic waiting room while changing cold caps. I'd like to work with the front office staff to just sit me in a room so I don't have to put on a show for folks not going through chemo. Just another way to lose your dignity.
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Hi Ladies,
Well it appears as though the shedding has finally started. I'm at day 17, 3 days after AC infusion #2. Washed my hair this morning for first time in 5 days, so I knew there would be more strands than usual coming out. Not too bad though - the days is half over and I have a baggie with about 30-40 pieces in it. Most came out during the comb thru after the shower. My brazilian is coming in too :-) which I don't mind, and my nose hairs seems to be disappearing as well. I don't think I need to shave underarms or legs anytime soon either. I was dreading this day, and I'm sure the shedding will get worse, but I like the idea of keeping my hair in a baggie so I can compare day to day and keep the panic down.
Hope everyone is having a peaceful weekend with minimal shedding!
- Kelly
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kpmacmill - I had a big baggie collection by the time I was finished. I look forward to the day when you can happily throw those bags away. But for now they are a good way to track what is going on. Without the comparison, it's easy to think that it's worse than it is.
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