Life After Cold Caps: a place for ex-cold-cappers to share
So, you've taken off that last frigid cap and exhaled.
Woo-hoo! You managed to save your hair through chemo. (in spite of all those who looked at you like you were crazy or told you to save your time and money I might add)
.... now what?!
This is a place for all ex-cold cappers to share advice with each other as we enter the PFC stage where our hair still needs to coddled.
Comments
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Ooohoooo! I get to be the first to post. Thank you, Texas, for starting this thread.
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What a great idea, I took my last cap off last wednesday and I too have so many questions Thanks One Texas Day
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Well my last cap came off 4 years ago...but I remember how DRY my hair stayed for awhile! I ended up getting a bit of a shorter cut to trim off lots of dead ends.
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What timing! My Color Wow! and Rootflage both showed up just after I started this thread. I have been feeling quite blah with my dark roots as I am used to having blonde highlights around my face which I now realize just HOW MUCH of a difference it makes.
I tried the Rootflage this morning and have to tell you was surprised at how much of a difference it made. It doesn't cover the entire root; I guess it could if you didn't have 5 months of growth like me
. It gave me highlights to break up the roots and seemed to brighten up my whole face.I will also try the colow wow and will come back to let everyone know how they both fare after the initial applications.
My hairdresser who is a genius told me to come by with all the products I am trying so she can help me and give me her thoughts on all of them. What a lucky girl I am!!!!
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Texas - How long PFC are you? I have a lot of grey hair coming in but I'm afraid to do anything as it is only 3 weeks pfc. Today would have been my 5th infusion if I had to do it. Yea. So glad to be done. Interestingly, I am not as grey as I thought I was. Lots of strands but I don't have grey hair like I assumed.
BTW, did you see my other post with the big news???
I have baby hairs!
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Baby Hairs! Woo-hoo!
My last chemo was 3/20. Tomorrow would have been my next. I still have to go to center every three weeks but thank goodness it is only to get Herceptin. Gonna read a book and relax this time.
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Ugh- nearly had an anxiety attack at my 6 month MO check up. Started breathing quickly when I walked in the door and started shaking when they took blood. Just did not want to be there. Everything is fine, though and that's the important part.
My MO told me I have made her a believer in CC. Yay
She will refer anyone interested my way if they have questions. -
how often does your oncologist want you to visit after chemo is over?
Also, when do eyelashes, eyebrows, arma nd leg hair come back?i am 4 weeks pfc
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Mitchie - I'm 3 weeks PC and so far nothing for my bald spots on lashes and brows. Some people lose them after chemo is over. I'm hoping that won't be the case. A friend told me that nothing happens for the first month and then shortly after they magically appear. I'm not so sure.
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how often does your oncologist want you to come in after chemo is over??? I think my oncologist wants to see me too much, and wants to do body checks, etc. my stage 1a cancer has been cured, four rounds of chemo for prevention.....i think he wants me to come monthly, but online it says evry 3-6 months.....
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My MO wants to see me every 6 months which is OK with me
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hi girls...thanks so much for starting this thread. I am happy to say that I am almost 3 months PFC. I am feeling great and getting back into my "new" normal of a routine.
WW...I did have thinning of my eyebrows and lost my lower lashes 2 months PFC. That was actually a little traumatic because not experiencing a lot of hair loss. They are coming back in. It is actually kind of cool how your body works.
My other body hair probably started growing back a month or so PFC. It is coming in fast.
I am on my 2nd month on Tamoxifen with no side effects. I saw my Onc after a month and don't need to see her for another 3 months.
I have also been asked by the local PCC Rep if they can use my before and after pics. She also interviewed me and is hoping to send it to the local TV stations and see if we can get the word out about PCC. So I guess I am being used as a spokesperson and so happy to help out in any way that I can.
Texas...how was your treatment and how did your hair hold up with 6 treatments? I have a friend that is starting in about a week and is freaking out. I tried to reassure her but I was not HER2+. This is why she is having chemo. Any insight would be great. Thanks.
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WW- I dyed my hair at 9 weeks PFC, I could not stand it another minute. It did not seem to increase shedding. I did use a dye without ammonia.
I lost my eyelashes about 6 weeks PFC, they all fell out! It took about 1 month to completely grow back.
Hang in there everyone, my worst shedding was after chemo, but now 15 weeks PFC it has stopped.
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I was told that brows and lashes don't grow during chemo and I am hoping that is the reason that they haven't yet grown back in. I am one month PFC and hope to see them come back around this next month.
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Lisa,
I had six cycles of TCH every 3weeks and now only get the H for every 3 weeks for another 12 cycles. I prob lost 1/3 of my hair during chemo but the majority of that was breakage. I really think a good deal of my hair loss was from putting caps on that were too cold and doing a horrible job drinking water. I already have lots of growth and besides the dark roots and not being able to style it, there is only one thing that I am really struggling with right now is my hair line on one side completely receded and the area right behind it broke off so I feel the guy from the movie fifth element,... For those who get the reference. It is odd because the area at my hairline where I had so much loss has always had a much different texture than the rest of hair, super-fine and never seemed to grow as long or as fast as all my other hair.
Honestly, the loss of 80% of my eyebrows is bothering more than all the rest right now
Steph
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Hi all- great to have this forum. I am 3 weeks PFC & still experiencing some slight shedding. I was a steady but slight shedder during treatment- seems like I lost the most above my left ear. Steph, haven't seen the movie but I definitely have some receding on the left- maybe we are mirror images. I am also 9 months on the H & just started tamoxifen.
Anyone have any advice on swimming? I am going to be in the desert next week & would love to dunk my head at least once or twice in the pool but I'm afraid of the consequences. Foolish, probably but it sounds so nice. I'm going for my first haircut next Fri & I'm going to have a consult with a hairdresser in P. Desert who specializes in colouring chemo hair. I think the hardest thing at this point is that I expected to feel more like myself at this point- I think some lower eyelashes would help!
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Summer, please let us know what you learn from the hairdresser. The Rootflage has helped me feel a little less blah with these six inch dark roots, but the sooner I can get some real color on my hair the better!!!For the blondes out there, the rootflage is great but I was not impressed with the color wow. It was too hard to get on and didn't really seem to make that big of impact. I woul recommend the rootflage and it comes in 3 shades of blonde.
I am going to see one the most experienced people in the country when it comes to hair extensions week after next. I am just looking for a little help filling in the areas that broke off. I am not planning on going all blonde bomb shell just hoping for some help here and there. This first appt is just for a consult to see if my hair is even healthu enough and if I can even accomplish what I am hoping for given that so much of the problem area is on the very top not on the underneath side of my hair.
I have a girl friend who is one you can trust to give you the absolute truth and she also happens to be fortunate enough that she runs in some very high-style, affluent circles. She has always sported this cute little short haircut which she can totally pull off, but she did try hair extensions once (and not on the cheap I am sure). Yesterday, she was very vocal that she thinks me getting the extensions is a very bad idea and now I am torn. I really don't want to do anything to further damage my hair but if it would make it look better in the mean time, it might be worth it.... I just don't know.
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I am right there with all of you, tomo is 3 weeks PFC and I cant take looking haggard anymore!!! I am normally highlighted with caramel highlights over dark brown, Now I am washed out hightlights 2 1/2 inches of dark brown mixed with gray, and yes I also have a receding hairline over my left ear. My right is not looking so great but better. I can see some growth, so I am very excited about that.
My naturally thin eyebrows have thinned,but so far are holding out. My elelashes also thinned but I havent worn mascara more than 5 times in 5 months for fear of causing any undo stress on them.
When are we out of the woods with falling out eyebrows and lashes?
From what I have read we can dye with natural no ammonia after 3 months, but would love to try after 8 just as a pick me up,
has anyone done that and what product did you use?
Sue
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I dyed my hair at 9 weeks with an organic product from Whole Foods. It contained peroxide but no ammonia. My hair held up fine, dyed it again at 13 weeks. Did not notice any difference in shedding. I was very nervous, but couldn't stand the gray anymore.
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Did any of you use any product to color your hair during treatment? If so, what did you use.
Thx, Lisa
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I am almost 4 weeks PFC and my shedding has really picked up, has this happened to anyone else, I know everyone is different but I wasnt nervous before about getting too thin, but if this keeps up that will certainly be the case.
How did everyone else do?
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so I am going to get my hair colored a week from today, and then will be ordering a top piece. When that comes in, I will have a session for cut and hair piece style/cut/color. I am excited. I know this is earlier than they recommend but I have found a stylist here in Dallas that specializes in helping cancer and other hair loss clients and my shedding has pretty much stopped.
Wish me luck!
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Sue, yes, it happened to me and many others. My sheddding wasn't too bad during chemo, but I continued to shed for four months PFC. There was a period for several weeks where the shedding got scary heavy and I was nervous. The wonderful women on the cold cap forum calmed me down. The shedding really slowed at three months PFC (that's when I colored my hair) and completely stopped at four months. In the end, my hair was thinner but looked fine. Just hang in there.
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thank you jc, last nights wash almost had me in tears. I am 5 weeks PFC on Wednesday. It needs to start behaving now. I know I wont shed for 3 months, there wont be anything there LOL. The problem is the part over my ears is starting to really thin, theres not too much to camoflage that area, my back thinned but is ok
And the fact that I grew in so grey makes it look even thinner.
Sue
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I am still convinced that we will lose a certain amount of hair at one point or another. Some lose more earlier and some later.
So...my hair is really growing in in certain areas like around my ears but my husband cannot spot anything on other areas of my head. Body hair is also starting to make a come back. Is it reasonable to assume that the rest of my head hair will start filling in shortly?
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Hi WW,
Yep, you will get lots more filling in, but for me it was not noticeable for awhile - no matter how closely I looked in the magnifying mirror I could not spot new growth. Then as I noticed the hair over my ears and nape of my neck coming in curly, if I let my hair air dry I noticed curlier strands about 2" long all over the place - they must have snuck in while I wasn't looking LOL I think the areas you lost more will be more easily detected when you get new growth and the overall shedding will be harder to see coming back, all of a sudden one day you'll notice. I could also tell by my before and after ponytail pics I posted awhile back that it had doubled in size. So now my hair is a mix of pre-chemo straight and enough new curlier/wavy that in the humidity it really starts to balloon up! And for the first time in my life, it actually holds a curl if I use a curling iron, so that's been kind of fun. So, hang in there, I'd say once the new growth gets a couple of inches long (maybe 4-5 month mark) you'll start seeing it.
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Hang in there, Sue, the shedding eventually stops usually pretty abruptly, too. Just continue to treat your hair gently for the 5-6 months and then you'll be ready to color, style, etc. During tx and the 6 mos after, my highlights grew out luckily no grey so I just kind of rocked a sad looking obmre style for awhile! On washing days, I used a cool blow dryer to get it to damp, then carefully set my hair on velcro rollers and let dry the rest of the way, with a little cool shot of air and light spritz of DermOrganic styling spray. that gave me lots of body and at least one decent hair day for work. the next few days I just pulled it back into a low barrette until it was time to wash again. although I didn't believe it, the time really did go by quickly and before I knew it, I was taking a long hot shower and reuniting with my round brush and hot blow dry. Give yourself time and you'll get there...much better IMO than having to grow ALL your hair back.
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Hope - Thanks! It's not 3" roots. It's my obmre style!
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Thanks Hope, it seemed as though treatments 1-3 were okay, my hair held up really well, and then right after the 4th it really starting sheddding and by the end of chemo I too was saving my hair in a baggy I was losing so much. Now it is 7 weeks PFC and just this morning it seemed as though the shedding is starting to slow. I do have new growth but its grey almost white, Im 57 so this whitish color has really aged me especially since it is around my crown. Im counting the days till I can at least do a vegetable color, summer doesnt help cant hide in the house LOL. Although I agree with you, this is much better than having to grow all of it back. Ill just feel better when I can look in the mirror and see ME looking back LOL Thank God for makeup and hair color haha dont want to sport this new look
Its so wonderful to be able to come on here, read what everyones experiences have been and know somewhat what to expect. We can talk all we want to other people, but no one really knows what it feels like but us.
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I started using lots of keratin and that made my hair so much stronger, prettier and less brittle.
I went and had a topper ordered. I didn't need one but I had lost so much of my volume and once I saw one and tried it on I had to have one. So those folks explained that I would need to color my hair to match the topper but told me my hair seemed pretty healthy at this pt.
So less than 3 months Pfc, I have colored, trimmed and have an exquisite hair piece that I only have to use when I feel like it. I COULD NOT BE MORE PLEASED. Can you tell I am happy?
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