Cold Caps Users Past and Present, to Save Hair
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Elastogelgirl - Thanks! It appears that your hair loss is very similar to mine. The bottom of my hair is fluffy and looks fuller than it really is. It looks healthy because I applied Joico reconstructor to my ends before I washed it, in order to prevent it from getting extremely dry with Nizoral shampoo. I applied conditioner after shampooing. I bought Toppik, but it takes so much work to apply it! I am wearing summer hats and caps only. They cover my grey and my bald areas. I cut about 3 1/2 inches at the bottom after my first shedding, as I was getting clumps that were hard to comb. It is interesting that I had layers and didn't cut the top layers at all. I lost more hair from the top layers, which I didn't cut, than from the bottom layers where I removed 3 1/2 inches. Also, I shed quite a bit less after using a shampoo that is not organic and one of the ingredients is sodium lauryl sulfate. Go figure!!!
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Vivianlu--I am SO sorry you had to go through what you did with your hair. It had to have been traumatic. I hope you've made peace and have a plan for here on out.
Willow-- I had 4 rounds of TC--Taxotere/cytoxan (Sherryowang--your on a different TC--you're a rockstar w/ 16 rounds!) and the taxotere is known to make you bald after the 1st round so anything you keep on your head is a win. I took Tylenol Migraine before leaving the house for chemo and also a Xanax. Honestly, the chemo part is really non eventful. It's the cold capping that keeps you from falling asleep! It felt really cold for about 5-8 min and then your head actually numbs up. I brought an electric blanket to keep warm also and I was fine. I HATE cold and I was doing this in IL in the winter. So it IS doable!
Pambc--you look amazing--I do want to warn you that I shed for MONTHS afterwards and lost another 20% of my hair PFC. here is a pic from a couple weeks PFC in early Feb
Here is a pic from this month
I have not cut it since October! The sides are pretty nonexistent at this point but no shedding. What's here is here to stay.
Also I'm on my SECOMD eyelash shed--sorry to break the news. Many of the November group is on their second shed. Breast cancer is ''the gift that keeps on giving'. I'm almost 6 months PFC, thought I'd be passed getting depressed about my looks again.
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Pamela23 - You look great! Don't feel depressed. You look beautiful! You don't show any difference between your new growth and your long hair. You look like if you have a lot more hair on your first picture compared to your second picture. Do you have extensions on the first picture? What did you do different? How many times are our lashes expected to fall PFC/TC? Sorry you lost your lashes again. They looked very full on prior pictures you posted. The American Cancer Society has a "Look good feel better" workshop. I already signed up. I hope they will teach me how to disguise the lack of eyelashes.
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Hello ! Thanks for sharing your pics girls, we are learning how to expect. Cali although you have a bald spot it seems that your hair is long.
Elastogelgirl you look very nice with your pink scarf and it is a good idea to buy one. How many chemos did you have?
Pamela you look amazing really you are the best example that the cold caps worked for you.
Really you cannot notice that you had chemo. I wish i would have started like you. Last saturday my hair was perfect until i lost half of it trying to detangled. It was long, now it is short. I am afraid of what they are saying that after the second chemo is another big shedding. Tomorrow is my second. But i will keep trying until the end. I don't loose anything. I have the caps here.
If i can keep some of my hair i will feel good.
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Pamela-you look great as usual. You area pretty girl! I'm sorry you keep losing hair. And lashes again. I have not had that yet. My PFC experience was almost no hair loss just growth after about 5 weeks I think.I lost half my eyebrows from the middle inward I looked ridulculous, then the middle grew in dark whilst the outer half remained thin. Now it's just all crazy thick brows like I have always had. My lashes fell once and grew in better than before. Used latisse. And viviscal.
Vivian thanks for the compliment on my scarf. I'm happy to have it while my hair comes in all weird. I think you will be okay. With your shorter hair. The length was probably going to be hard to hold onto if you lose a lot anyhow. I cut 13 inches off my hair before chemo. If I had tried to keep it I think I would have had more problems. Keep capping and hope for speedy regrowth! it will even out quicker too?,
I had 4 rounds AC chemo followed by 4 rounds Dose dense taxol.
I'm on my last Rad of 28 tomorrow! I'll be ringing the bell around noonish! Hurray! Boy my armpit hurts though and ITCHY!
I feel like ringing the bell will be anticlimactic since Tamoxifen and then an AI for years and years is next! It really doesn't seem over! But certainly not complaining about being done with the first three assaults! Nor should I be a complainer about tamoxifen it's the best chance I have I should be happy about the stuff......I just want my old self back! This stuff ain't for sissys! You guys are all super women
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thanks for all the posts, pics and comments! I trust what you ladies are sharing - how it actually feels and what results are like - compared to what the capping companies say. I'm so inspired by all of you 😇 And I know I can do it too!0
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HapB it would most likely be a good idea that you do take care of your hair even though you only had 1 treatment the chemicals have reach the hair follicles. Be easy at least for couple months. May I ask why no more chemo?
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Pamela23 - I hadn't read your post entirely. I now understand that the first picture is PFC. You had so much hair then. I can't believe you lost so much PFC. I am 5 weeks PFC. I hope I don't shed much more or I will look like Gollum. How often did you wash your hair PFC? How much did you shed when you washed PFC?
Willow22 - I am glad you found this topic before you started chemo. You are aware of the best and worse case scenario. I found it after I started having unrealistic expectations encouraged by my PCC rep. I thought I would keep 80% of my hair. It was difficult when I started shedding so much every time I washed my hair. I hope you do great with chemo and capping! Keep in mind that we are all different.
Elastogelgirl - Congratulations! You are done with radiation!!!
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VIVISCAL MAY INTERFERE WITH RADIATION TREATMENTS
FYI - I have read several posts from ladies wondering when to start taking Viviscal. The Nutritionist at the UCLA Radiation department just told me to stop taking Viviscal during Radiation treatments, due it vitamin C content. I had been told at MD Anderson Cancer Center in Texas, this year, to avoid taking Vitamin C also. The nutritionist told me that taking Biotin during radiation is OK, so I will stop Viviscal and will replace it with a Biotin supplement during radiation.
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Cali--My last chemo was Jan 18--the 1st pic is early Feb and the last one was a couple weeks ago. I have almost 2 inches of new growth which has decided to stand up at my front hairline this week so I just headband it and let whatever sticks up, stick up. It looks cohesive for about a day and upon waking, never looks the same until I wash it again 4 days later. I'm still doing that schedule. It really came out SLOWLY this first 3 months PFC. I didn't know I'd lost so much until I looked back at pictures. I was getting 2 small combfuls of hair after washing for a few months. About week 15, I only got 1 combful which was normal pre chemo. I'm not talking huge combfuls, but enough to pull it out and have it fill up again. Or pulling my hand through my hair I'd get some. And I saw it when I'd sweep or find hairballs in the washer. I heard lashes can come out up to 3 times the first year. I'm still holding on to about 70% of them but have noticed spaces between lashes in the past week on both eyes and one morning I found 5 lashes on my face!
Vivian--hang in there! I like to say "a bad hair day is better than a no hair day"! When this is over, you'll still be ahead of the game and you can feel good about doing everything you could to keep what you have.
Elastogel--I used Latisse throughout chemo--I had used it for about a year leading up to it--and once they started falling out I stopped. But once it started growing back, I started back up. My right eye looked great, my left one never got as long and like I said, I'm seeing signs of them falling out again although I'll still use it. I need to get some Vivisical though. Hooray for your last radiation!! be warned, you may start feeling a bit lost in the next couple weeks when your not scheduled to be somewhere nor be told what to do. I felt there was an overwhelming feeling a couple weeks after radiation of "now what?" Take the next few months to heal. Lots going on underneath and you'll feel some zings here and there to remind yourself that you need to heal.
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yhk- sorry was on a short vacation I bought some cheap hair nets off Amazon just looked they were called Tinksky invisible hair nets a pack of like 100 was $7.50.
Everyone's pics look great! Tomorrow is chemo day and I have 4 left of 16! My hair is so thin but I am getting fuzz around my crown it feels like soft bunny hair. My left temple area is so thin but hoping it starts to grow soon.
Willow- seems everyone is a little different ho they react to the cold for me it was awful and I too took Ativan plus a pain pill. They have had to give me tons of nausea meds as well but some just take Tylenol!! You will see as you go!
Does anyone else's typing get changed as they type with their phone? Ahhh for some reason this website changes all my words lol
Pamela-pretty pics
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Vivilanlu8- I totally know what you mean about being afraid to wash your hair. I just washed my hair tonight because I have my 2nd chemo treatment on Friday, but last weekend is when my hair started shedding and my edges began to come out. I was terrified to wash my hair tonight because every time I touch it or comb it shedding occurs. My hair has two knots in them in the back and after I washed my hair the knots and tangles has gotten worst. It was impossible for me to comb them out, I mean really big tangles as if someone put super glue or gum in my hair. After washing my hair I had a lot of hair coming out. My hair is now thin underneath and the sides of my hair has come out. I now have to go to the salon and have them cut out the big chucks of knots in my hair. I mean it's really bad I spent hours trying to get them out. I don't know what else to do. I am hoping they would be able to cut them out and It won't be so bad. However, I have to wait maybe a week after my treatment or I will call the penguin cold cap reps to see what they suggest. I am trying to stay strong and positive I know it's hair and it will grow back but it's this shedding process and trying to figure out hair styles when I leave the house. I won't complain someone on this post made a great point, it's best to have bad hair days then no hair days.
Is anyone else experiencing extreme knots and tangles? Maybe I've done something wrong during this process.
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MJPow- Thanks for the response. I have not typed from my cell phone yet so I am not sure. And yes I am not going to try to soft brush my edges anymore because I think it's too hard on my hair even though the PCC rep said it would be ok. I am at the point I really don't know what to do. I am thinking about cutting my hair only underneath because that is my problem area and where all of the tangles are.
Pamela23- Be encouraged. You look great! If I saw you on the street I would not be able to tell you went through chemo.
Cali58 and Elastogelgi you guys look great as well. Looking in from the outside I would not be able to notice your hair situation.
Everyone on this tread keeps me inspired and going. Every time I start to feel a little down about my hair and my appearance, I log on to this site and read some of you all posts, so thank you for the pictures, tips and support.
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GreMercy i called peguin to ask help with the 2 pony tails that i had tangled like a mat sticked with gum. she suggested to go to the salon. The hair dresser spent 5 hours trying to detangled by moments not all the time. I had tried 3 days before with products nothing worked. At the end she detangled them but i remained with only 2 little pieces hair of those pony tails. So better to cut them. I lost the pony tails that were the longest part of my hair in each side. So i have short hair now but i have it. I had the second chemo yesterday and i have curly hair so
I am not going to comb it until my next wash on saturday. I am in pony tail everyday for now. And nobody notice anything. I hope i will continue like that with the hair i have left.
Keep going i think like pamela better bad hair than no hair. Good luck.
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Rdeesides----- I consider my use of Dignicap successful. I did not want to lose all of my hair. It did thin all over. There were days in the shower that I thought I would be bald all over! I had a bald spot at top of my head and both temples. However, only those who knew me would know that I had lost hair unless they saw the top of my head.
I must admit that I made the nurse loosen the chin strap as I could not take it super tight. Keeping the cap close to head is key. My nurse also knew that the cap tends to not have great contact on top of head therefore she would stuff the top between cap layers with paper to push down for more contact. Also, with Dignicap they unplug you for restroom breaks causing a slight heat up then they plug it back and it must reach cold temp again. Therefore, I made certain to take only 1 restroom break through my treatment.
I shampooed as little as possible. Used a Wetbrush to gentle comb hair morning and night. Had silky pillow case. Used zero hair products and all natural shampoo.-----Where did I cheat.....it was freezing out and I wore knit caps and yes they pulled my hair.
I did not go bald and that was my goal. Hope this is a help
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Willow22-- I had 4 rounds of taxotere and cytoxan. I did the penguin cold caps. I brought a blanket, wore a short sleeve shirt with a sweater that has a larger opening near the wrist so I could push it up for blood work and iv. I also wore merrell type shoes. I get cold easily and I know everyone is different. I found that the first 2 caps of the day were the worst--my head felt really cold. Sometimes, I found if I closed my eyes for 5 minutes and laid back in the chair, I felt better. I never had chills or felt cold on the rest of my body. I think my head became numb after. I also brought some crackers or softer foods because I found it harder to eat with the strap underneath my chin. I also tried to drink a lot of water a few days before, during and after chemo.
My hair thinned and shedded. I'm 15 weeks PFC and still shed a little but not as much. My hair really thinned around the sides and in the back. BUT I am seeing new growth come in. I used a wide tooth comb--never brushed it and comb very gently. I used madison reed powders (sephora or on their website) to cover my grey or loreal spray.
I lost most of my eye lashes but they are starting to grow back. My dr didnt want me to use latisse. I have sensitive skin. But there is a product called Grande LASH MD
LASH ENHANCING SERUM--- grandecosmetics.com that was recommended to me. Has anyone tried it? I just ordered it from their website although I guess it is available in some salons.
Elastogel---congrats on being done with radiation. I had radiation 13 years ago and also had itchy skin. My dr recommended a cream called EpiCream. You will need a rx and it's probably not covered by insurance but the company has coupons ( or a lot of dermatology offices do) so you shouldn't have to pay that much. It comes in a big pump container. It really helped with itchy skin. I love your scarf!
Pamela23--you look great!!!! Sorry you're losing your eyelashes again. I'll keep everyone posted if the GrandeLash serum works.
Radmonkey--I would bring a measuring cup in the shower and turn the shower sort of off so the water pressure wasn't hard. Then i would fill the cup and wash and rinse my hair by tilting my head back and then dumping the water on my head until the shampoo was rinsed out. I also used a wide tooth comb and combed before I washed it. I think this helped a little. I just started giving up the cup and tilting my head back carefully under the shower.
Cali 58--congrats on the new growth! Your hair looks thick underneath and from the bottom.
I'm very glad for this site, all the information and support really helps. I'm scheduled for my diep flap reconstruction ( another community board) for next Tuesday. I'll be healing from that trying to keep my positive thoughts and prayers.
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AAARRRRGGH. Just got word this afternoon that I do not qualify after all for a really promising clinical trial for ovarian cancer maintenance (remember, I'm an ovarian "interloper"). After making it through 12 brutal rounds of Taxol and Cisplatin, the next recommended maintenance therapy is monthly Taxol treatments for a year, which will threaten this hair we worked so hard to keep. This time, it's not fair or feasible for me to sit on the free set of caps I got on loan from the local cancer center, so I need to buy caps for monthly use.
Does anyone have any Elastogel caps they could sell to me? The original plan was always to buy a 5-helmet kit to donate to another cancer support center, but they stopped selling them online right about the time I was in the market to buy some.
Thank you very much in advance!
(help save this mane!)
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I am in the middle of my second battle with BC. My first was in 1999 when I had a lumpectomy, chemo and rads. I lost all of my hair at that time. This time, I was diagnosed I had a BMX and chemo. I have been cold capping throughout my chemo and have not had such good luck. I had my 3rd TC treatment 1.5 weeks ago. I have one more treatment left and will continue to cold cap only in the hopes that the regrowth process is faster. We followed the Penguin guidelines to a "T". I am not sure what caused us to have such terrible results. I want to post this picture so that others do no have the same false hopes that I had. We spent so much time, money and hope looking to save my hair and ended up disappointed beyond belief.
June 19th, just after 2nd TC treatment.
July 6th , 1.5 weeks after 3rd treatment.
It just keeps coming out.
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ykh- IYkh- I bought hairnets from Amazon. These held up very well for me during cold capping and kept the Velcro away from my hair.
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rdms - I'm so sorry you did not get results from cold capping. I'm not sure why but it appears different people get very different results. I just completed with my final and fourth treatment of TC on June 29th. I just hope and pray my hair stays but it sounds like I have a long time to wait to make sure. I would be very disappointed too!
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rdsm--I'm sorry about your results. It's IS a lot of time and money, and being that there isn't something you ignored in the rules, it must be incredibly frustrating. I am happy that you are sharing your experience so others can keep a realistic idea of what to expect. I pray the new hair comes in faster and healthier. I wish we could make another thread with jus before and after pics so new members didn't have to scroll through so many of our pages. Maybe I can find a way to start that.
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Pamela23: great idea. I've started a thread before and it's pretty easy.
On another note, there is a FB page that I am a member of but it's supported by Penguin Cold Caps so I don't feel like it's a true representation. I know they don't guarantee results, but all I saw were success stories. My results have hit me very hard emotionally. I'd rather have gone bald quickly than to be dragging the process out for so long. I am not trying to be a pessimist but trying to share my experience so people know that there is a chance it may not work. The cancer battle is difficult enough without throwing additional stress into the mix.
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What a shock rdsm i can imagine the way you feel. If i see my hair after the tangles and i feel really sad. Today i went to shop around for some wigs. Just in case i end up without any hair. I am been realistic and i will continue til the end waiting for the regrowth faster. But i am going to buy a wig to be prepare. I cannot go to work with no hair.
Thanks for sharing your pics. And it is good to know what to expect.
Blessings for all of you.
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if i had my second chemo yesterday when do you think i have the next big shedding? When i wash my hair on Saturday or again 21 days after the chemo?
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Elastogelgirl,
I've been washing my hair in the sink hair forward, with undiluted shampoo (and of course I did it today before reading your description). I'm going to try both the diluted shampoo and if I can persuade my husband to wash my hair, then I'll do the piano bench trick. I wash even less than once a week, maybe every 10 days or so. I just don't remember.
Why exactly is having it forward in the sink bad? I'm 3.5 months PFC and still shedding, although I have hair growing in underneath. Although it is thin, it does look a little better because of the 1 inch of hair coming in. It has been all white coming in, but I found a brown hair or two that is 1 inch long. Not sure if the brown is new growth, or just broken off old hair.
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Pamela - thanks for your detailed response. I will probably have 10 hairs left if I continue to shed for 2 more months. This is so stressful. It's always better to be prepared and know what to expect, though. Your hair is growing nicely. You are so petty you would look good even with no hair. I hope this is the last time you lose your lashes.
MJ Pow - I am glad to hear that your hair is already growing back.
Vivianlu - It looks like you still have a lot of hair.
Michcali - Thank you! My hair is very thin. It looks like I have more, but it's just fluffy. I wear hats and summer scarves around my neck to disguise the lack of hair when I go out. I had a diep flap in 2003. I asked my plastic surgeon to do the incision in my abdomen as low as possible. It helped make the scar less obvious.
Lizjo - Your hair looks beautiful. Sorry to hear the news. Hopefully Taxol will not be so harsh on your hair.
rdsm - thank you for sharing the pics. Like you, this is my second battle with BC. I wish the Penguin CC reps were forthcoming and compassionate. It seems like some of them will tell us anything in order to get their sales commission. Pretty sad! I hope your hair will grow faster after cold capping. Besides, your hair loss should not be permanent like some people treated with Taxotere. I started to see hair growth at 5 weeks PFC. We go through so much. It's a very stressful journey. I, like you and many other girls, suffer every time I wash my hair. I may have found the page you mentioned. It only contains success stories. That's the only page I found pre-chemo and I was certain I would get the same "great" results. I am glad I found this forum to find out the truth about cold capping and find support with this group of wonderful ladies. Each and everyone of you is so courageous!
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Vivianlu--I didn't have a second big shed. But it was a consistent shed between chemos. Unlike the first one where chunks come out, you'll get a few combfuls with each wash and find hairs on your clothes/floor constantly.
Rdsm--We are all doing this to preserve our hair because we value it, I don't blame you for being pessimistic or angry or sad. We all have an emotional attachment to our hair. This was "hope" for all of us to keep a normal thing through this abnormal time. I'd have an array of emotion, as each of us do each time a chunk comes out or each time we see a picture from pre BC. It hits you a bit in the stomach. I keep reminding myself it's not forever but it feels like it sometimes. Out of the other SE's I'm dealing with, I know this one will be OK in the end.
Hanging-in-- I washed my hair in the bathroom sink up until 2 months ago and I'm 6 months PFC. I combed it first and patted it dry and used a spray detangled to comb through it and air it dry. Mine was all white coming in and it slowly changes.
HapB-- good question--I'm not sure why it continues to fall out but I read that stresses to the body can show up as hair loss up to 6 months afterwards. Maybe surgery on top of chemo for those who did that routine was stress enough to continue for so long?
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I found this article and thought it was helpful. Figured I'd share...
https://smarter-reviews.com/lp/sr-hair-vitamins?tr...
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hanging in-if I flip my hair forward when I wash it it gets horribly tangled. Instead I start with my hair combed back then wash it all in the same direction it stays the same way when I comb it again. Hope that makes sense. I try not to make more tangles.
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I agree with you elastogel--now that I'm doing it in the shower with it rinsing down, it's much easier to comb!
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