Cold Caps Users Past and Present, to Save Hair
Comments
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I've asked about PFC shedding on the PCC forum. Waiting for an answer. Some women have it, some don't. I'd love to know what's causing it. I did AC and TAxol, so i've had plenty shedding. i'm hoping to make it to my next/last treatment with some hair left. PFC shedding would be terrible! Hang in there gals!!
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I wonder if we should keep the caps and use them for a month or two PFC. Maybe that would alleviate the shedding. has anyone tried this?
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lost 2 clumps of 10 strands today
I'm day 15 0 -
Dexxy - I am day 15 too and have been shedding since yday, dont despair, lets hang in there:-) I noticed most of my shedding is at the back bottom of my head (i guess that aprt where the caps did not maybe fit properly???) the middle hair is still intact and the front is intact too. This week has been a good week in terms of SE, i feel so much like ME:-) next chemo is next week thurs and am dreading it:-( looking forward to seeing my sis though (she's coming from Toronto to be with me on my 2nd treatment:-) Hugs to you.
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thanks Snoopy -I know We'll get through this, just wasn't expecting it today. I'm holding out for Sunday when the big shed is suppose to happen for us, most say day 18-24
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Mdg. I know , I know..... Hang in there. I think week 18 PFC was my turnaround week. Definitely after chemo shedding was the worse for me. I have all the baggies of hair chronicling 'the shed'
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I am a heavy shedder and easily lose 20 strands a day brushing/washing/living, even before chemo. During chemo I probably lost 40+ strands a day. My PFC shedding lasted for about 12 weeks and was about on par with what I lost throughout chemo. For me, it wasn't heavier, I think I just expected it would stop within a few weeks of chemo ending. As it continued, I realized the importance of continuing the hair care protocol for up to 6 months PFC -- because the shedding and weakness can last so long.
I had TCx4@3, followed by rads. I had no add'l surgeries or anesthesia; I believe my shedding is entirely due to chemo. It would be great if a PCC clinical study could examine this part of it.
Susan
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Susan - did you continue to wear the caps at home after chemo?
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fyi LADIES - i was just on the PCC Forum. I asked about henna. I was told by a rep from the company that we can use vegetable dyes, 3 months from our FIRST infusion. Not our last!!
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LivCar, I did not use the caps between treatments; Frank was not recommending that back then. (Gee, now I can tell I'm an old-time early user!) However, I did swim every day -- a full hour in cold water. I'm convinced the cold water helped me with my hair. I swam every single day other than infusion days, btw.
Btw, for any swimmers out there, here's what I did: my pool uses primarily ozone instead of chlorine, so I didn't have much to deal with chemical-wise. Before each swim, while showering, I'd wet my hair with cold water til it was saturated, then put on the swim cap. This kept my hair from absorbing any pool water. Then I'd rinse my hair thoroughly after the swim, with cold water, to keep the hair as clean as possible. I only shampooed 1x/week, but took advantage of the daily rinse -- letting the water do the work and not agitating other than a final comb-through with a very wide-tooth pick-type comb. Towards the end of chemos I would add a bit of conditioner to a couple rinses/week, to help with softness and detangling. I did not get conditioner on my scalp, just the shaft and ends. I timed my activities to take advantage of my daily swim, i.e. my big hike each day would often be before the swim, so the shower cleaned me from both activities. Or if I was going out, I'd swim/rinse/shower first and have my date afterwards. (All the swimming and rinsing was also good for getting the chemo-sweat off of my skin.)
I never imagined I'd have such an active schedule while going through chemo! It was great.
Susan
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Susan: I am still washing once a week and air drying my hair. I am following the recommendations but still shedding for now.
As far as the ladies just starting...just so you know, I still have a full head of hair. It is thinner but no one can tell except me really despite all the shedding still going on.....hang in there. This is a long process.
I do have a question...I finished chemo on 5/4 and we are leaving on a beach vacation on 8/5. I am still shedding a lot at this point and it's only a few weeks away. What can I do on vacation about my hair? I usually wear a beach hat (straw hat) but I know they don't recommend hats. The sun would for sure be too hot on my hair. Can I even get my hair wet in the pool???? I am not sitting in the house all week because of my stupid hair. Any input? I am dreading it. I also scheduled a professional photographer to take family photos of us...I thought by then I would be looking better and be able to style my hair a bit more like my pre-BC life......that ain't gonna happen though.
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mdg: You might want to try one of those all-rim hats, where the top of the head is open (and breathable, so not so hot) but the brim holds your hair in place and provides much-needed sun protection. I used to have a great visor for playing tennis: a nice long bill, open on top, but it tied in back with a ribbon -- real cute.
For your photo: the big smile on your face will dominate your look! Enjoy your vacation and celebrate your finishing treatment and being together!
Susan
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Hey Maria .. i asked around to some of the other PCC girls because i had the same question about hats. We have a pool at our home and i wanted to be outside with the kids. I've worn loose baseball caps, as well as a cotton do-rag scarf (pink and girly). The scarf actually worked the best because it let in air, and i never felt it rubbing on my head. I have also worn my wig once to a wedding. Others wore hats every day. Particularly the girls (and i could be one fo them soon), that lost hair at the top of their heads- they had to cover it. Some wore wigs every day. In my experience, the few times i wore a hat or
scarf did NOT result in an extra hairloss. Here's how i wore the scarf - hope the photo turns out -
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Hey Cold Cap Girls:
Question about hair loss during PCCs. Did you notice the bulb on the end of the hair when your hair shed?
Is this normal? I so worry about permanent hair loss from taxotere. I hope that the PCCs are preventing permanent hairloss from occuring. I have lost a lot of hair for my already fine hair, just want to make sure that the hair that is shedding is going to grow back in the near future.
I am up for a hair wash today and will have to premedicate first (xanax) as it is my huge shed cycle days 18-24 from last tx. I have also noticed that my hair has shed so much more daily since tx#3 often coming out in groups of 5-10 strands.
Hope all is well with everyone. I am in for my 4th and final TC this coming Tuesday. Then hopefully one more huge shed, PFC shed and on to regrowing!!!
Take care everyone!
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DeRox, Yes, when I shed hair during chemo, most of the time the bulb was attached. That does not mean permanent hair loss. I lost about 2/3 of my hair and it is coming back without problems (if curly is not a problem). I continued to shed three months post chemo. It looked very thin after the third chemo, but although I continued to shed, it looked about the same and not worse for the rest of the course. Hang on and hang in there. It's just another Penguin bad hair day. This will end soon enough and you will smile again at your hair.
Mdg- Enjoy your vacation and try not to worry. Just use plenty of sunscreen and a great breathable hat to keep off the direct sun. Have you thought about a parasol for walking about? Get a cheap Chinese one with flair, perhaps. Think about finding a really great summer hat for that family photo. Have it match your outfit. Flaunt your beauty- you know it's there.
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I hear ya. I've had A LOT of shedding since starting Taxol. Thought this would be easier but it seems to be worse. I had a lot during the 4 DD AC ... i guess i was hoping it would lighten up with the drug change. I have just enough coverage to look'ok'. If i have post chemo shedding i'll have to go to a wig. I had my third tx tuesday, one more in 2 weeks. Hoping i catch a break!!
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Hi All:
To DebRox: Yes the bulb was there on a lot of the hairs I shed. Don't worry its not permanent hair loss!!! My hair got thin and wiry and messy during chemo, especially because I couldn't style it or use any products, but it grew from ear length to almost shoulder length, but very sloppy looking and very curly. Now, at 3 mos. past chemo, I've cut once after a month, just a little trim, no big deal--didn't really do much, and then after 2 mos I had a real haircut, but very gentle, no pulling or any products and only drying on cool setting, but what a difference. It is very short anhd looks great. Most of the crazy curls are cut off the bottom, just a little curl on one side of part. I would reccomend a real short haircut for coolness in the summer and it gives hair a thicker look.
All in all, don't worry about the bulb thing. I also think we all obsess too much over the shedding--after chemo you will still shed for awhile--everyone is different and it will stpo at diff. times for everyone. It will all come into a more realistic realm as you get away from the chemo treatments.
Best to all.
Keep Positive!!
Nancy
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Hi All:
To DebRox: Yes the bulb was there on a lot of the hairs I shed. Don't worry its not permanent hair loss!!! My hair got thin and wiry and messy during chemo, especially because I couldn't style it or use any products, but it grew from ear length to almost shoulder length, but very sloppy looking and very curly. Now, at 3 mos. past chemo, I've cut once after a month, just a little trim, no big deal--didn't really do much, and then after 2 mos I had a real haircut, but very gentle, no pulling or any products and only drying on cool setting, but what a difference. It is very short anhd looks great. Most of the crazy curls are cut off the bottom, just a little curl on one side of part. I would reccomend a real short haircut for coolness in the summer and it gives hair a thicker look.
All in all, don't worry about the bulb thing. I also think we all obsess too much over the shedding--after chemo you will still shed for awhile--everyone is different and it will stpo at diff. times for everyone. It will all come into a more realistic realm as you get away from the chemo treatments.
Best to all.
Keep Positive!!
Nancy
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Hi all!
Just to let you know that I finished my treatment 4 TC, 4 weeks ago. PCC worked for me. I am happy,I look normal, nobody knows that I had chemo, only few people that I trust. I shed a lot specially in the nape and ear area, but not noticeble to anybody. I am still shedding a lot, but some days I hardly shed. After my last treatment I decided not to use the night cap, and my hair looks better. Also I always used my curling iron, very gentle without pulling my hair, so my hair is always looking good, I got the idea from another lady that told me that she used curling iron. I didn't used the caps in between weeks just on the day of treatment. For the ladys that are on treatment, I want to let you know that the PCC works, just be gentle to your hair, shampoo only once a week, used cold dryer. Be patience, Even if you see that your are shedding a lot don't worry you are still going to end with a lot of hair. I have thin, and my friends can not tell the difference on my hair.0 -
Did anyone else loose a lot of hair along their part line? My part now goes to the far back of my head and is thinning quite a bit.. Not sure how to disguise it since it's showing scalp. Any thoughts?
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Tiki that is greet ! Congratulations. I like that you are happy with your hair!
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Tiki Thank you, this is very helpful. I am on day 17 post my first TC treatment and I started to shed and was freaking out. I thank the ladies on this forum, you all have been so helpful in offering your encouragement and advise, happy to say that the shedding dont stress me anymore. I am being patient and staying positive that I will still have a head full of hair at the end of all this:-) mt 2nd TC treatment is next week.
Thank you ladies again & hugs to you. Have a wonderful weekend!!
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Hi LivCar: Did you use a strip of gauze alng your part line when you did the caps? That is what Frank reccomends and it worked for me. No shedding there and no frost bite there or anything else. If you haven't already done it use a thin piece of gauze along your part line. Frank also suggested changing your part line each time so diff parts of the scalp would be exposed to the extreme cold and not the same place all the time. I didn't do that, but others did. Good luck, your almost done!! Yeah! Hooray for you!
Keep Positive!
Nancy
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keep positive - i didn't use a gauze, and i didn't have any frost bite. i did change my part. Guess it wasn't meant to hang on! i just need to figure out how i'll cover it! ugh ...
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LivCar: my part has widened as well and goes down the back of my head. I have to check my hair with a mirror and comb over the hairless spots when I clip my hair up.
I do have a cow lick back there and since I'm not washing frequently my hair is stuck together in clumps, so it looks lke i have bald patches at the back of my head. My hair loss has been diffuse, but since last tx#3, it is coming out in groups 5-10 strands. I can only hope it slows down soon! I expect a big shed when I wash my hair. The last 2 washes were heavy.
I have been using gauze and changing my part during cold caps. I have not had any frostbite on my scalp.
At this point I'm hoping for new growth starting in the fall. I'm not sure when after last tx I can expect to see new growth. I'll have to go thru day 18-24 shed in august, then I hope to start hair recovery and growth sometime thereafter and it can't come soon enough!
So LivCar, you are not alone. Hang in there , one more tx for each of us. Then we can talk about new growth
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I am day 25 counting from my first DD AC and have had two treatments. I have lost about 50% of the hair from the top of my head only... particularly near the part line and crown. I did use gauze last time and will try the silk idea next time. I had most of my hair loss in the past week and it seems that is what others have experienced. I can go out in public as is but people would wonder why my hair is so thin and stringy on top, but they might not guess chemo but would think its some sort of med or illness. So that's something, I guess.
I never had red or scabby parts on my scalp but rather yellow crusting that turned into itchy brown stuck on patches and soreness on the top where I have loss after the first treatment. this might have been mild frostbite...
I think mistakes I made are scratching some of the patches, putting hair/scalp oil on for 3 days after my second treatment which felt great and calmed my scalp itchiness super well but may have facilitated loss. In the first two weeks I washed 2x week but had very little loss then so don't know if that contributed or not.
I think it is obvious the caps work for most, particularly with TC treatment and if you follow the protocol to the letter.
Even though I am pretty sure I am losing the battle, I will use them again next treatment this coming week to keep whatever hair I can (with the silk on top). Not sure what I am going to do with my half bald head, and may end up with a scarf or wig... but we'll see.
Just two more treatments. I am half way done and that's awesome no matter what!
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HELP MPLEASE - I just washed my hair and the back hair is completely tangeld, I cant seem to detangel it, I am soo scared, what should i do? I used the Burts Bee shampoo and conditioner and have been putting conditioner but its not detangling, please please help. I am scared and in tears
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Snoopy: how about morrocan oil cream? And use a wide pick?
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Thanks DebRox; i actually asked my hubby to run to cvs to get me the morrocan oil. Thanks. I have the wide pick comb, maybe i should get a wider one. currently i have conditioner in my hair left it for a few mins. I am soo scared, its really tangled at the back. Oh God, please let it detangle. I am in tears, feel so helpless and scared. Thanks
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Snoopy: just apply it to the ends and start detangling there and work your way up.
My hair tangles easy and morrocan oil hydrating cream in pump bottle works wonders. Wishing you the best.0
