Cold Caps Users Past and Present, to Save Hair
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holy moly. I bet you're exhausted. What is your regimen? 4 AC plus 12? I honestly don't think I could cold cap through all that. My hats off to yo
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Ok.ladies. I finished 12 Taxols. 6 hrs each time of capping . total 72 hrs of freezing head...
So far my hair look good. Not a lot lost. Of couse thinned a lot but not noticeable to others only myself. I wonder if my hair just all come out after, When I think I am out of the woods. Hope to get feedback here.
Eyebrows thinned but I usesome eyebrow kit to make them darker... Also using Brian Joseph's gel..but scared they will come out 4 to 8 weeks after as some of you saying..
Anyone didn't loose eyebrows and eye lashes?
It was not a bad ride for me through Taxol. I was more or less feeling myself with plenty of energy and able do Exersise and have active life style.the only real problems started around Taxol#10. I have huge legs swelling. It's so bad..it's scarry. I was even send today for eco and liver sonogram But it seems ok.
I was also prescribed diaretic pill...but so far no result. My both legs swollen so horrible but left one even bigger then right. I do Exersise every day anyway but legs a bit better in the morning and then it's a disaster..they blow up!.Anyone had experience ( I remember Runner did) with steroid water gain and how to get rid of it?
Here my last hour of Cold Cap and my funny weekly picture..
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SusanBP - that is such a super long day! I bet you are exhausted!
Aimless - enjoy your vacation!
Victoryak - congrats on being done with chemo! I had different drugs than you but from what I have read many women have had great success with the weekly taxols - I bet your hair will do fine!
I am starting to feel like I am going to be a total loss post chemo if this shedding keeps up - really hoping that it slows down in the next few weeks to at least a manageable rate. I am terrified to wash it this weekend
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I saw this article yesterday. I am impressed that she is sharing her journey publicly and so bravely. But it also makes me sad that more people don't know about cold capping.
http://www.hollywoodreporter.com/news/shannen-dohe...
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geez...she looks rough. I think that's Hollywood though and not the cancer. Surely somebody told her about cold capping. I'm guessing she didn't want to mess with it.
Speaking of rough, I look like a troll today. A tired troll. Why is my abdomen still so fat?! I still look 10 months pregnant
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I finished 4x TCH and very pleased with the capping results. Had one big shed 18-21 days after first tx and have lost approximately 35% of my hair with no bald spots or noticeable thinning. I am now 24 days PFC and am having another big shed! Have any of you experienced this this late?
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Heidi - I am 32 days pfc and still shedding heavily, started to get heavy about 21 days pfc and has continued. From what I have read it isn't unusual but totally stinks. I was also really happy with the results through chemo and hoping this doesn't end up killing all of my hair pfc
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It's 5 days PFC. My hair thined, mess but still there..I really need a haircut . I am thinking maybe next week just to have a trim...Will it ruine my hair? Shall I wait?Should I expect more dramatic shed with Taxol on day 21 as other chemo regiments couse? as for washing hair, are you doing it twice a week now or still once?
Hope for feedback..
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Victoryak, I trimmed my hair just an inch or so about two weeks PFC. It made my hair look a lot better, and I felt so much better afterwards! I think it's OK to wash your hair more than once a week - even during chemo, Penguin recommends a couple times a week. Just maybe avoid blow drying it for a while and let it dry naturally.
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Thank you! I think I might make a hair appointment for next Wed. So to be on more safe side.....2 weeks mark
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I'm here to offer some encouragement to those who are post chemo and still shedding. I've been following this thread for about three years and have never read of an instance where someone finished chemo with a reasonable amount of hair and then lost it from post chemo shedding. I shed for 4 months PFC (it's not unusual) and I was worried. Then one day it just stopped. Keep following the hair care protocol and hang in there.
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amyabs: Sounds like we are in the same situation! How are your eyelashes and brows holding up? My brows have thinned but lashes all still there, I think...
jc254: Thank you! Do you remember approximately how much you lost PFC? The same amount as during treatment or more or less? Four months sounds like a long time
Did you end up using a wig or topper?0 -
OK, I have to fess up to you all…
I have totally stopped following all of the babying my hair rules. I was just so sick of the bad hair!!
Used a deep conditioning hair mask a few times, scrubbed my head with each wash, using my usual Aveda shampoo, using the blowdryer ( ok not on hot) and some product. Have had two haircuts, an little trim about 6 weeks out and then a proper cut at 11 weeks PFC.
I wash it a little less often than i did before, and style it a little less. I am still shedding a little, but not a lot. The conditioning mask helped the Troll hair a lot!
The dandruff has settled down ( thank goodness!) and I look like "me" again:) OK me on a bad hair day some of the time…
It is growing in fast! OR at least it seems fast. The baldy bits by my ears now have about 3/4 inch of hair.
I had been taking biotin and silica, but ran out. The silica cost about $30 for a month's supply, so I haven't rushed out to get more!
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jc254 - thanks for the encouragement. Some days I feel so silly worrying about the hair when I have cancer but somehow it is a good distraction
Did you shed heavily all 4 months or did it slow down at some point? I am also hoping I have some regrowth here before too long to help balance out some of the loss.Zinny -so glad you are starting to feel like you again - I think your new cut looks great on you!! I can't wait for those days to come when I feel like me again, lol.
heidi16 - brows are thin but still there and my eyelashes are thinning but still hanging on. Not sure what will happen there...I was prepared to lose those post chemo but not necessarily all of my hair, lol.
I will be 5 weeks pfc tomorrow and the hair is still falling fast and furious. Sigh, one of these days it will slow down.
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zinny, I'm going to report you for breaking the cold cap rules!
Just kidding. I got a haircut 3 weeks after my last chemo. I needed it bad. I started using a brush (carefully) on my hair and I blow dry it. I still only wash it twice a week. After I wash it, I shed some but I think it averages out to be a normal amount since I'm still being a little cautious on the other days. At this point, if it's going to fall out, it will. I don't think there's much more I can do. I'm tired of troll hair. That said, I haven't used a flat iron or anything that pulls on my hair. It's fun seeing all the little sprouts of hair filling in. It feels like a new start.
In other news, I haven't had night sweats in a month and I haven't had a hot flash since Wednesday! Maybe my ovaries are starting to wake up and make me some of that evil estrogen. I'm sleeping SO much better now!
I hope everyone has a great week!
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I've already had one haircut after my first chemo, and I"m scheduled for another one this weekend. Then my 3rd chemo will be the following Friday. Why is it considered a no no to cut your hair? I keep VERY short hair typically and get haircuts every 4 weeks under normal circumstances.
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hang in there taxotere girls...I lost 70% but my bangs and hair at nap of my neck stuck around. Guess we needed more ice and one more cap first round. Well, here I am with my tom petty hair that I felt compelled to trim and go without a hat last two days. I am almost seven weeks out. Now even pessimistic, worrisome me admits....regrowth has started!
Watch out for the Zometa infusion they do 2x a year. My doctor owed me a favor and somehow got my insrance to pay for the good bone juice. Yesterday I had it, Drove myself, fine. Home, fine. 2 am all hell breaks loose. So glad I had ONE oxy left. Between that, the last of my zofran....I missed work (didn't miss one chemo day other than infusion day). I slept 6 hours during the day and choked down enough bread so the ibuprofen doesn't upset my stomach. Given how bad my pelvis and leg bones hurt, I felt like Hugh Jackman's Wolverine character when they replaced his bones with titanium. This will give me some comfort going forward as active treatment stops (for how long no knows). I have my arimidex, little bit of hair and high hopes.
I am most most pleased (well mixed that a coworkers sister was diagnosed) but I am loaning her my caps and all the insructons and adbice. If she wants....
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Hello all, when I'm feeling sad and hopeless (about hair), I turn to this forum. I'm 3 weeks pfc, hair washing day - no denial - my hair is not making it (well, I guess more than if I had not cold capped). We're on vacation - I've been wearing a mesh-baseball cap all day - and while going in a swimming pool (in the shade). I'm not sure if that is why I've had SO MUCH shedding. But enough blaming myself - this is so hard. I bought a topper wig - which is really a wig "lite" - and will now wear it in public - when I'm not wearing a hat. I don't think Toppik and hairbands are cutting it any longer in public. The balding plus the horrid texture - now I just wait for regrowth. Just needed to vent to those who "get it."
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Visited my oncologist today for checkup at Northwestern today and saw a young woman with what I presume to be her parents with two coolers. I was so very excited given the less-than-enthusiast response I received while in treatment in 2014. I encouraged them, though they didn't seem to need it. So thrilled to see so many trying it. My thoughts are with you all. It's not an easy path but works for so many. Stay strong!
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7 of 9- where in Cleveland are you? My immediate family all live in Chagron Falls. I just got back from a long visit with them.
Everyone else, my hair is so horrid it's almost laughable. But it's still there (for now) I'm like 9 weeks PFC and still shedding. Yippee! The only way I can distract myself from the Yuckiness that is now my hair is to put sunglasses on my head. That's like my main accessory. Can't do a pony tail because even the smallest hairband won't stay on my thimble thickness of hair. Plus it pains me to even attempt it. So basically it's now turned into wired cotton candy texture troll hair in lovely shades of light brown, grey, with a stunning hint of green from my parents over bromined pool. My poor sons gorgeous, white blond, curly hair, is now alien green. We're quite the pair!
Here's my before and after. Do you even realize how sad I am that I never ever took pics of myself in any of my family pics. I have maybe 10 selfies with my son from the last 3 years. Now I wish I had take one a day:(
Anyhow, the top 2 are before (last sept) and the bottom 2 were last week. Man do I look rough. Like an old tired out truck driver who's been on the road non stop for the last 20 years. I have AGED SO MUCH IN 1 year:(
Add in the weight gain (that's not going away) and the puffiness and swelling ( that I am STILL getting)and I'm a real winner
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Phalia - From your posts I thought you'd have WAY less hair! You look totally normal to me. I have maybe 1/2 of that much hair (and started with about same amount judging from top pics!) and I still have 2 rounds left. Ugh. I think I may have literally had the worst results with penguin cold caps on TC out of every single woman on this forum.
7of9 - SO glad your regrowth has started! Where on your head did you notice it first?
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phaila- your hair does not look bad at all and neither do you!! I am sure your hair is not what you are used to but really people who didn't know what you were going through would never guess. I thought you would have a lot less than that as well based on your posts!
Aimless - I am sorry about your hair, it is stressful to watch it fall after all the work with capping to keep it going. I hope you are enjoying the other parts of your vacation though!!
Phaila, I have a lot less hair at my temples and hairline than you do so there is no way I could pull it back with sunglasses - it would be very obvious I am missing a lot if I did that. Are you still shedding a lot or has it slowed down? I am 5.5 weeks pfc and still get 100-200 pieces of hair shedding a day (basing that on the fact that just combing it out in the am each day I get a huge pile) - hoping that slows down soon! RIght now it is a race to see if it starts filling in before I will need a wig or scarf to cover it up. I have definitely lost more over the last 3 weeks than I lost through all of chemo
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phaila, your Hair look great! Really!
I also gained so much water from steroids.I am 6 lbs up and it is not going away. Had more tests done on me to see why my legs so swollen. All normal. What do I do? Now do I get rid of all these swelling? Why is it taking so long? I hate to look at myself in the mirror. Plus I have more fat or water in my love handles and belly ..
My MO is so funny.after seeing my swollen legs yesterday( I was in the office doing Herceptin injection...omg it was so good Not to wear cold cap!) he said you swollen because of cold caps😛 he was kidding....
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aimless- I'm sorry. This is hard. Having hair fall out is so tough- especially for us women. It's cruel.
I have one more treatment to go! Part of me can't wait to be done, and the other part is dreading signing up to be sick again. I get really nauseous after treatment for about 5-6 days, like having the flu... And I have a 3 month old baby... So rest doesn't really exist.
One more though! Just one more!
I saw this meme and it made me laugh, I know this happens to me, and one day when it really is a spider, I probably won't even notice!
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hey amyabs- still losing a butt load EVERY SINGLE DAY:( I have no idea what's going on. I'm just waiting every day for it to do that magic "all of a sudden it just stopped shedding" thing I've been reading about. It looks like a lot more hair than there is because it's all kinky wiry and weird poofy. There is seriously nothing there. Yes I don'thave anyon guessing I have breast cancer but with every hair that falls out it gets more and more depressing...
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Thank you all for your stories and encouragement. Sorry for the very down post yesterday. Vacation is wonderful. Today is the best I've felt in months - my tastebuds are retuning to normal, (a peach tasted like a peach!) I can walk a flight of stairs without resting halfway, my eyes pretty much stopped watering (yep, THAT was annoying), and I haven't taken a zofran in days. So, I'm reminding myself that I've gone months not needing a wig - and if I need one till my missing hair grows back, it's all time gained. The reason I was so clear about wanting to do cold caps was the desire to maintain my privacy. I think cancer is stirring up a lot of "sayings" that ring true to me - like - You can only control what you can, this too shall pass, don't sweat the small stuff, and all the rest of that garbage about inner beauty. I keep counting the months till I "look" like me -but feeling more like me is amazing. (Still have a way to go - radiation all of August - but I'll take each improvement!)
Phalia, you are beautiful - and though you're not seeing "you" probably when you look in the mirror - I'm sure everyone who knows you does!!
Viktoryak - I can SO relate to being at the MO and NOT doing cold capping - I did IV fluids several times in the infusion "suite" - like a vacation!
icandoallthings - You have a 3 month old? - your "username" is perfect. Yes, one more round - and from the perspective of 3 weeks past my last treatment - eye on the prize - I kept reminding myself that my worst day was my LAST worst day. The meme is great...I think I will have ghost feelings of hair on my back and neck for a long time.
amyabs...hang in there...I was already needing scarves, headbands and toppik by round 3 - so I think this is just my fate. I think you'll make it!!! (meaning your hair will).
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Hi All,
Today was my last treatment (#4) YAY!!! Any advice on sending these caps back? I have the original box she sent them to me in but there were some cracked boxes (she did send me replacements for free), i am afraid they will charge me $1.000.000 per box if they break on her end LOL.
Yes i should be sleeping but i set up for the Dominos man to deliver pizza for my kids as I slept on the couch but they woke me up yelling at each other deciding who as opening the door LOL. What a night for hubby to have to work at least he was there to be my capper and a what a good job he did. So far I have a quart size ziploc bag half way full of shed. My eye brows are thinning and i have one quarter size bald spot on the top of my head that i think i did to myself from itching craddle cap, but as of Monday its starting to grow back they are so cute i call them my little babies LOL
Thanks for listening!!
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aimless,
I've posted when I'm down. Everyone here gets it and it's part of why this board is here. I'm 2 months out and I still get depressed pretty regularly. I've still got a lot of side effects and I still think I have cancer face. I can't quite figure out why I don't look like me but I don't. I'm getting little eyelash stubs but it's more than that. So hang in there! You made it through
And speaking of stupid stuff people say. One of my best friends told me she believes everything happens for a reason. It hurt my feelings so bad. And no one in my family called me or anything for 3 months- most of it while I was doing chemo. I got the ever so awesome,"let me know if you need anything" and never heard another word. Ok well rant over. I just started getting cranky when I thought of all the dumb things people have said to me. Oh wait, I have one more. A colleague told me how lucky I was it was caught early. Yeah I'm really lucky. I'm stage 2 thanks to lymph node invasion and had to do chemo and will probably have a recurrence no matter what I do. I won't even get into how much money I lost taking off work because I was too short of breath even walking across the room. (I had to go in for IV fluids more than once, too). I came close to needing a transfusion.
Ok now I'm done! ☺️
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Runner, . I totally get you! I also have some " friends" who kind of disappeared ...like they don't have time anymore maybe because I don't do parties as before? They find exuses not to come over but see others who have no cancer. What a fun to seat and listen to me. On the other hand I have some very supportive friends. One of my aquitances said. " you see there no parties anymore without you unless I don't know any...." in a mean time she stopped inviting me over to her house but invited other friends...she got pissed at me because I didn't tell her about my cancer till last minute...when others knew it...yee..
About catching it earlier. I heared about it to.. And that I look good.when I am not usual myself. Maybe for cancer patient I look good...but it's not me! I am also swollen my eyebrows very thin and missing some hair. My legs a fat from water swelling. And one of my male friends says: you look awesome..you legs are better now..before were to skinny
And today I had a down day. For 12 weeks of chemo I was active, getting up, Exersising every day.( f..k I am up 7 lbs as of today...and I eat right) .doing things.seeing people and today I broke ....I don't know maybe I am selfish, but I hoped my husband will do something special for end of chemo . but he just said find something yourself! And wouldn't agree with any of my offers of 3 days getaway ...like or.. Its to far to drive. So I had fight with him yesterday.. And friends I also thought that will try something special.. No, ...everyone is busy. Only my friend who had cancer 2 yr ago took me out to fancy restaurant to celebrate. Maybe I have wrong friends.or am I selfish? For me and of chemo is big thing...why no one celebrates it?
Anyway. I broke today. I felt sorry for myself.I spend whole day in bed till 4pm. Crying ...not wanting to do anything. I felt no-one cares. If I am not here life goes on..without me...friends adjust and don't care and even family all will be ok.
Anyway, at 4pm I got up , want to spin class and told to myself. Life has to go on...sometimes I think why?
I have radiation starting in a few weeks..and Herceptin...and scare of reoccurance....but somehow I have to live through it...
That's it. Now I am done.
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Hello,
I am now almost 9 weeks into chemo. I am doing FEC80 x 6. I have been using the Paxman cold cap and wanted to let people see how I am doing on it. I have always had really thick hair and so I feel it has thinned a fair bit. It is certainly nowhere near as bush as it used to be. I will post pics for each cycle:
This is me before chemo
This is me at end of chemo 1
This is me after chemo 2
This is me now at almost 9 weeks (after chemo 3)
I am pretty impressed with the cold cap - although OMG it makes me cry using it. I feel sick for about a week afterwards even thinking about it. I cannot stand the clink of ice in a drink, or the thought of Christmas snow or icy mountain tops...grrrrr...I basically will never eat another ice lolly ever.
It has thinned massively and the condition of my hair is absolutely terrible. It is so dry and frizzy and only olive oil can tame it after it has been dried. But it is worth doing. Even if my hair suddenly drops off tomorrow, it has given me almost 9 weeks extra with my hair.
Anyone know anything about shedding? I am getting very small amounts coming out now and I had read that on FEC your hair starts to come back at about chemo 5 or 6??? Can this be true?
Hope you all have had success with cold capping.
Dolly
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