Cold Caps Users Past and Present, to Save Hair
Comments
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Just finished second T/C. Some minimal shedding, but hair is hanging on! Yippee!
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Hi ckk--- I think it is different for everyone and depends on your shedding....I colored with the no ammonia no peroxide 5 weeks PFC, and then every 4-5 weeks after..as it washes out...for the next 6 months. I'm a little over a year PFC now....and all the short hairs where it thinned ...nape of neck, hairline, around ears....has finally caught up with my old shoulder length hair.
I am so happy I used the caps, at my recent year check-up...I reminded the nurses and techs to call me if anyone is interested in the caps....just recently got to help someone who is about to have her second TCH....and got another call on Friday....makes me so happy and fulfilled to help others see there is an option....
I too will love the day when the medical field is "making fun" of us for packing caps in dry ice and lugging coolers to the centers that "tolerated" us....cannot wait to hear about the machine!! Good luck and keep us informed....0 -
ckk- I was a double processed blond before chemo. I wore my hair 3 shades lighter than my natural color so I needed the real stuff to color my hair. I waited until 3 months and 3 weeks before I did a color test with my hairdresser. He highlighted some pieces and we waited a week before I went back. My hair held up fine and he highlighted my whole head at the 4 month mark.
A couple things: I did stop shedding 5 weeks post pcc. I also had cut 4 or 5 inches off my dry ed out hair. I am a little bit the 5 month mark and will add more blond in a week or so. There are women who wait longer and some that color sooner.
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soccergirl, Did you use foils or a cap for your highlights?
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I did foils. It was so wonderful to color my roots!
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Okay, I've seen the instructions for cold cap usage and I have to ask if all of the rules are truly that critical. I'm now afraid to scratch my head. Some questions:
1. Can you take a hot shower? Hot bath?
2. Do you need a shower cap when showering? Or is a shower cap bad?
3. Can you scratch your head? What about parting your hair with a comb?
4. Is pinning my hair up gently strictly verboten?
Did anyone not follow a rule without incurring serious consequences? Thanks!
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Lmflynn,
Did you experience shedding PFC? I'm starting week 7 PFC and my hair sheds daily and it sheds a lot. It held up great through chemo - but it has thinned a tremendous amount since then and at the rate I'm gong I'll be lucky not to be bald soon. I'm taking iron, silica, etc.
Is this shedding clearing the way for new hairs? So far I'm not seeing any come in. Anyone ever lose all of their hair post-chemo after successfully getting through chemo with the PCC system? Anyone know why I'm still experiencing that annoying head tingle sometimes?
thanks all!
Lucky
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Susan,
I was diagnosed with very low Vit D levels about 2 years before my bc diagnosis - it seems like there are a lot of us with that conincidence. Must be something to it - I will be telling all my friends to make sure they're supplementing.
Thanks!
Lucky
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ckk congrats on your last TC
. I have always colored my own hair and looked online and found two haircolors that seem safe to use. Palette by Nature and Act Naturals. I am not sure how good they are but am thinking of trying one once I am finished.tc9876, You can take hot showers and baths. You just want to avoid hot water on your hair. I've gotten into the routine of washing my face before I get in the shower, then just washing up in the shower without sticking my head in, tempting as it is! A shower cap should be ok. My greatest urge to scratch my head was after my first treatment. It went away after a while. I just tried to scratch with the pads of my fingers. I use a wide pick to comb my hair and gently part it if needed with a comb. I used a small butterfly clip sometimes. You many want to avoid barrettes that can end up pulling on hair when you take them out or weigh it down.
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tc9876 I would wash my hair in the tub with cool water then clip it up while I took a hot shower. I always just put the fan on and made sure the bathroom door was open so it wouldn't get to hot and steamy in the bathroom. I wore my hair in a pony tail a lot - I worked out daily and always had it in a pony tail for workouts. I was just super gentle putting it in and taking it out to make sure I did not tug on my hair. I parted my hair. You can see my results on my blog..there are photos.
Luckyjnj: I had lots of shedding during chemo but it seemed to get worse post chemo for me at times. I kept shedding for a few months but then it stopped. I kept thinking at that rate I would be bald, but I never was. You can see my hair on my blog. Now 10 mo's post chemo it is super healthy and looks great. I did cut the length off but I am loving my new shoulder length cut! I think I like it better than my long hair!
As far as color, I use the Clairol Beautiful collection (no peroxide/no ammonia) about a month or so post chemo. I used that several times from the end of May to October (I finished chemo the first week of May). I then switched to Naturtint (available at Whole Foods and many other health food type stores - or order from Amazon). That is a more natural color that stays in longer. I color it with Naturtint every 4 weeks now and it leaves my hair feeling good...not dry or brittle.
For those of you going through this...you will have hair! We all had moments/days/weeks of doubt, but most of us ended up with hair! Hugs! You will be done soon and you can move on with your life - with your hair too!
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Mdg,
I just checked out your blog - your hair looks fabulous - loved yoru stripper boob story. Thanks for the encouragement. I keep thinking if the shedding doesn't stop soon I'm going to be totally bald - you know how it is.
Thanks again,
Lucky
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I just finished my second TC chemo last Thursday 2/23 and the shedding has definitely begun. I am staying positive and hoping that I will keep some of my hair. It is thin to begin with, so we will see. I'm rinsing it only in cold distilled water and using paraben/sulfate free shampoo and conditioner when I do wash. l'll keep everyone posted.
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tc9876, I remember, all of the rules did seem overwhelming at first, but you will soon get use to them. Before long they will seem natural.
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Mom2JJ, did you have any shedding before your 1st chemo? I have my second one tomorrow and have had minimal shedding so far.
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Luckyjnjmom,
I shed more post chemo than all through chemo...thought a few times I'd lose it or have bald spots....but I never did....promise you'll make it through!! I shed for 4-5 months post chemo....I was on the long side compared to others...but today I love my hair....but there were days ....when I was still washing in cold water, living with thinned hair, not being able to color as I did...but it is all worth it!0 -
tc9876; I am so thrilled to hear about the next generation of Penguin Cold Caps! Can you post a picture for us? Are you part of a trial study or are these available to others? I had excellent results with PCC and am so grateful that I learned about them on Good Morning America. We will be so eager to hear more of how they work.
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tc9876, that is so exciting that you are using the new machine. They now have one at my infusion center. I live in MI as well, so I wonder if we go to the same place. I have been using the existing colds caps and since I'm half way through chemo, it doesn't make sense for me to switch to them since the existing caps have been working so far.
I am also African American. I have shoulder length relaxed hair. It is a challenge maintaining AA hair using this system. But it is doable. I've been doing it since Dec. 19. I'm on ACT. I finished 4ACs and 1 Taxotere, and have 3 Taxotere's to go. Taking it day by day and praying that my hair will make it through this. So far, so good.
My take on a few of your questions:
1. Can you take a hot shower? Hot bath? - I do both. Hot showers and baths are stress relievers for me during this chemo experience. Sometimes I just need them.
2. Do you need a shower cap when showering? Or is a shower cap bad? - I always wear a shower cap because I don't want my hair getting wet when I shower or bathe.
3. Can you scratch your head? What about parting your hair with a comb? - I do scratch my head sometimes. Nothing bad has happenned. I don't part my hair except after washing it.
4. Is pinning my hair up gently strictly verboten? - I'm not sure. I always leave my hair down. I find when I put it in a ponytail, the ponytail holder always manages to steal several of my strands.
Good luck and let me know if you have any other questions.
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Thanks all for the feedback. I will PM you Victorious.
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Hey you MI gals! I was treated in MI and just moved to Chicago in August.....I heard they were getting a machine. That's great news!
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Lmflynn,
Thank you so much for the encouragement - when I'm at my wits end with the shedding - this is exactly what I need to hear - from someone who's been through it and is now on the other side. Thanks for taking time to help me through this!
Take care,
Lucky
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Regarding the machines, Geralyn (from Penguin) told me that there are only about 10 of them circulating around the U.S. and she is still working out the logistics for them. I will be the VERY FIRST ONE to officially use them in this hospital. I'm nervous and excited. I will try to post a picture of it for all to see.
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tc9876, I just finished TC x 4 and kept all of my hair (so far). In answer to your questions:
1. I take a hot bath every day. I love baths and I will not be without them! They did not affect my hair at all.
2. I haven't showered since my surgery. No shaving necessary, and I wash my hair in cold water at the kitchen sink, so why bother? I take a hot bath every day.
3. I scratch my head gently, and part my hair with a wide tooth comb after washing. Neither has hurt my hair.
4. I haven't pinned my hair up since starting the caps. I do sweat at the gym, but rinse in cold water when I get home.
I think that you'll find that you will relax as time goes on, and realize that your hair is okay. I relaxed after my 2nd treatment. I have had almost no shedding since day 21 post tx #1, knock on wood. We'll see what the next few weeks brings!
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Luckyjnjmom, are you taking iron? Some users have said that it stopped their shedding quickly after PFC
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I have read several recommendations on here for adding vinegar to shampoo. I periodically use an apple cider vinegar rinse in place of condition to remove build up..the concentration is 1 tablespoon per 2 cups of water....do you think it would be ok to do a few times through treatment?
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Ejef3,
Yes - I am taking iron - at pretty high dosages actually, I had a little incident after my BMX and lost a lot of blood - so my iron was quite low. I think it might be a little low still but it had come most of the way back to normal by my last chem on Jan 11th. I'm also taking silica supplements - and black currant seed oil which is supposed to promote hair growth and thickness. I'll let you know it turns out - if I ever stop shedding:) thanks for your comments,
Lucky
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There were some gals several months back that rinsed with vinegar on this thread. Try using the search function and see if it comes up. It may have been Snoopy. I can't remember for sure. I would also ask Geralyn or Frank.
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Hi mdg. Loving the MI connection on here!
Ckk: you've had wonderful success so far with the minimal shedding. I shed regularly and hoping it stops now that I'm only getting Taxotere.
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Hi, I attempted to email the company headquarters, my question was forwarded to Geralyn whose response was they didn't know the affect, so better safe than sorry. Was looking for information from those who have used it while using PCC. Everything I KNOW about ACV rinses tells me it would be safe...hoping for other experience.
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RE: Searching
I find the search funtion on this board very cumbersome. Is there any way to search a specific thread? Not just use key words to search a specific board?? Thanks
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Lucky: I shed for a good 4 months PFC. I thought for sure I'd go bald. My hair felt less full (volume-wise) but I had complete coverage throughout. I am an early PCC user and did not know to take iron to help stop shedding; your system will have its own reaction to chemo but you'll find that one day the hair will just stop shedding. That's the point at which you can resume warm water hair washes, styling, etc. Then get ready for hair regrowth zoomies!
hot bath/shower: absolutely! but just not on your head. I also clipped my long hair up (gently), kept it from pulling etc. In fact, used a swim cap every day and had to v e r y g e n t l y put it on/off without tugging my hair.
Susan
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