Cold Caps Users Past and Present, to Save Hair
Comments
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livCar, i will pm you later tonight or on Sunday, im doing my other mx tomorrow in SF and reconstruction, its about time..lol
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Snoopy Hope it went well today. Take Tylenol only no advil/alleve. They are blood thinners. My hair finally stopped shedding, I have had a few strands here & there. I hope that was the last of the big ugly sheds. My hair is growing like wildfire. My side bald spots where I wore my glasses are filled in and I think my hair grew 2 inches during chemo.
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Nmoss: I am jealous you have stopped shedding! I am still shedding but not as bad as a few weeks ago. I washed again today and and have been shedding quite a bit all day. When I gently comb in the morning a lot comes out. I am seeing lots of new growth though...I thinned at temples and it is really coming in. My hair also grew a lot of length during chemo...roots were at least 2 inches. I have trimmed it twice now since my last chemo - collectively I have trimmed 3 inches off the bottom. It looks better trimmed. I hope the shedding stops but I am glad it has slowed down a bit from a few weeks ago. I am still only washing once every 5-6 days.
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Maria: How many weeks PFC are you now? I'll be 6 weeks on Monday and my shedding continues. New hair coming in but I want the old to hang on.
NMoss: That is great news that your hair has stopped shedding.
I think I might get the prenatal vitamins today.
Off for my boob xray to begin the dreaded radiation Monday.
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Good morning Ladies, Its day 2 after a long day of chemo. I'm doing great and think that my down day will # 3 or 4. Just getting through the not knowing what was going to happen really helped with the whole process. I was also lucky the steroids didn't keep me awake and, I don't have to do any of those neulasta shots yeah! my MO said she's not prescribing for premeno women unless their numbers go down so fingers crossed. So i know you are all waiting to hear about the cap, IT WAS AMAZING, i felt only slight discomfort at 10 Cecilius for about 5 minutes and then it was smooth sailing in fact I'd be thinking it wasn't cool enough and had have my husband check it all the time. No discomfort, no burning and not having to change the darn things out. We shall see in the end what we all think. Having thick hair can be worse with any cold cap as there is more of a layer of protection so to cooling doesn't reach the scalp as quickly and for asl long as it would with some with fine hair. I was sitting next to a women who was on her 2nd round of BC, 5 years later and new primary, she did the double mastectoy this time and 6 rounds of TC when she walked in i didn't even notice any hair loss. Yesterday was her 6th treatment. how great is that! I told her she was an inspiration to be to stay positive and not stress the hair away. They did all worn me about the big shed around day 18-21 and to not freak out because that will be the worst of it, there is continual shedding but nothing like that first. Not looking forward to that day, but hey if I can get through this then it will all be worth it.
I also to let women out on the east coast know that if they are interest in the DigniCap the are doing a trial at Wake Forest Baptist Medical Center, Medical Center Boulevard, Winston-Salem, NC 27157 it would be worth checking
here are a few pictures of me in my head dress please feel to ask any questions
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Hi ladies, i had my firdt TC chemo yday and my first PCC experience:-) you should see my and my "crew" waltzing through the cancer center with our 2 cooler boxes with wheels LOL.. they gave us a private room, which was really nice. My nurse was also very nice, supportive and compassionate. I had my first 2 caps 20 mins each during pre-meds, had the 3rd cap for 30 mins, 10 mins during finalising pre-meds and 20mins during the first infusion of Taxotere, I also had my finger nails & toe nails on ice (ouch this was painful). I tried to munch on ice chips also. During the infusion, i had the caps for 30mins each time, my helpers were very good and serious with their job:-) by the time i finished the chemo i had my last cap on. I actually walked out of the hosp with my cap:-) the drive to my house is 20mins so when i got home i switched and continued with the process for 2 hours. Pheeww, thank God 1 down. I am hoping the PCC worked well yday:-) oohh i took tylenol extra strength before i started with the caps, s this really helped with getting a headache or feeling uncomfortable, i was okay through out.
Oohh i forgot to mention i also had the Zoladex shot yday (to help keep maintain my ovaries during chemo) i will have to have the shot once a month until i finish chemo. Have any of you ladies had this shot before?
Should i put on the caps again sometime in the coming weeks before my next chemo? for how long and when? Please advise.
Thank you ladies.
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Ladies~ I am so excited to see the next "wave" of Cappers join and share on this site...I forget who said they read all 125 pages, but when I started I read all 38 or so...... We are empowered women and I feel like we all have that in common, even if we come from all parts of the US.
Wanted to check in ...I am 6 months PFC this coming week...just spent two weeks at the beach with most of my family ...young and old..... FINALLY I feel almost like I have my old hair...washed it in warm water, blew dried, curled the ends, in the ocean, in a boat....hats, clips....it has been so wonderful!
I see so many that are experiencing what I did, scaling, peeling, itching, shedding....I swear on this trip I lost like 50 hairs total! It stops and no one can tell....it's thinner, but it's growing a ton!!!...my sideburns I notice especially.
You all will succeed as well, esp. TC or TCH ...I know AC is harder, but so many successes on these pages....keep it up ...dont get discouraged.
Anything I can add or help p,ease ask...PM or on thie site...
Maria.....you are almost done with your shedding...I promise....0 -
nmoss -when did you notice new hair growth? did you use caps at home in between treatments? Good for you!!
dexxy - thanks so much for the updates on the dignicaps. i'm really interested since our protocol calls for an excrutiating 4 hours post infusion! You mentioned a study in Japan. Any chance you'd know how we'd get our hands on that study? Is there anyone on AC using the caps? Good luck .... and be gentle with your hair!
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My daughter finished cheno May 5, had double MX with tissue expanders June 15, last set of drains and first fill on July 5. All in all, the whole process was not as bad as we had expected - and we expected "bad" after all the reading we did, but that is not to minimize the discomfort and the emotional stress she had. Even with the not as good elasto gels, she has hair, her nails stayed fine throughout even though we were not consistent with the frozen peas, lashes and brows are thinner but ok. The drain belt and bags from Am Cancer Society store were great. All heart tests on herceptin have been normal. she just started tamox so we'll see how that goes. Even a month after chemo, the onc is still amazed taht seh has hair - i guess he was waiting for it to all fall out the week after the last chemo.
I hope all you newbees have the same or even better expereince that Steph42 has had and here's to a cancer-free future.
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Hi liv car
I am doing AC and the caps. First treatment was Wed before last and I have had some crutsting and peeling of the top and front of my scalp , scratching that has led to some hair loss... I am trying not to... and I have light shedding ... But this is only after my first treatment.
I know AC is harder on hair and many things, but I feel trying the caps is worth it, it gives me a nice project and I feel more empowered.0 -
Brcababe1 - i've finished 4 DD AC, and 2 taxol. 2 more to go. I've lost a lot of hair, but can still clip it up and make it unnoticable. I have 2 kids. This has allowed me to walk around my home and look normal. My kids are happy and have forgotten about chemo. I can't imagine looking at their little faces if i had a scarf, or was bald. I'm thankful every extra 'hair' day that i get. No one knows i'm in chemo ... with some luck, this hair will last long enough to not give me away. AC you'll find is not as bad as they say. Taxol is even easier. Good luck!
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Lmflynn. Thank you for your uplifting post. It gave me a real boost. I just finished week 19 PFC. For me the PFC shedding has been the most challenging in regards to hair. Thought it stopped then it started again. I look forward to warm water and a real shampoo and permanent hair color, ohh and a trim. I barely remember what a brush feels like. I think I have 'hair fatigue'. Hopefully I am through shedding this time for real... I hope. I hope.
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Arlene; I am 8 weeks PFC. Shedding still going on.... I have been wearing my hair wavy (since that is what it does naturally) since it's summer now. With it wavy, it looks thicker than my usual style which is blown straight. I think everyone thinks I just have a new hair style....doesn't look odd at all.
I knew I lost some hair at the temple/side burn area especially on the R side but I did not really know how much until it started growing back in! Now I have to kind of hide it with my hair hanging down. If I don't tuck my hair behind my ear, you can't see it. It does look like I shaved part of my head a bit or something and it is growin back. I am fine with that..it's not noticable with my hair down.
At this point I am still only washing about once every 5 days. During chemo I was washing once every 7 days. The days I wash my hair it looks pretty good and is super soft. After e few days I am not really liking the look so much, but it's all OK. I can deal with it. I am getting it professionally colored before our August 5th vacation.
Snoopy and Dexxy....glad you got through #1! That's geat. YOu are at the beginning of this journey, but it goes fast and you will get through it. As LivCar said, having my hair made it easy to be "normal". My son doesn't even know about chemo. He knows I got special medicines, but doesn't really know more than that. I go everywhere and do everything I did before chemo with my hair. I go into social events without everyone in the room knowing I had chemo and cancer. There is something to be said for that.....hang in there ladies. Read my posts from when I started and read them now...it's all good! Good luck!
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LivCar-I don't exactly know all the details on the study in Japan I have the numbers out of 275 women 55% felt they had no hair loss 21% had a little and 22% some the remaining 3 had enough they felt like they had lost enough to want to wear a wig. It was interesting because when I was getting fitted with my cap a representative from the company was there, she was there to check the machines and the program. The is speculation that hair loss amount are based off of our genetic makeup, so our ancestry can play a big part in this. Not so much of that we can control
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Thanks Maria. Yikes, I hope the shedding stops for us all soon. If mine doesn't, I will definitely need something I think waiting 11 days to wash was a mistake and I'll wash sooner this time but definnitely not 4-5 days. I'll stick to the 7 day schedule until I see some slow down. I still haven't lost my lashes or eyebrows but did finally lose the down south hair and no signs of it returning yet. Leg hair still gone too but I'm just fine with that except in my mind, that is a sign when the body hair starts returning.
Good luck to all you just starting. In the beginning it seems forever, but it realy does go quickly except for those of us who are with the Herceptin for a year.
Happy Saturday everyone!
Arlene
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Dexxy is the after care protocol the same as PCC - cold once a week shampoos, little manipulation, change shampoos etc? Did you ask if there is heavy PFC shedding? Is the cost comparable to PCC? I think Dignacaps are very interesting and hope you get great results.
Does anyone know if it is sulfate free shampoo we are supposed to be using? Someone gave me some Deva 'no-poo' sulfate free shampoo. I am not sure if it is OK to use...0 -
Sashette~ it was right about 19 or 20 weeks PFC when all shedding slowed and then went to way less than normal....but I totally understand the stress and "fear" that you'll shed so much it will be noticeable....I had it many many times!.....
This family vacation I did just decide I would wash my hair when I wanted and not turn down the temp when doing it...even though I think it would have been fine I was still doing it with tepid water ....I'm still not using gel or mousse... But I splurged on hair spray too this trip....
Have decided I'm going for my full color and highlights in the next few weeks....Had it done once but had my stylist not get too close to roots etc....
Sashette...you are almost there....and probably already there if your experience is like mine....
New cappers....I had horrible scaling and pretty sure frostbite on my part line....I used a 2x2 gauze folded out to one layer and made sure my helpers moved my hair around at cap change...it got better for #3 and 4 and I did not change from -32 degrees....
I can't wait to hear more about the Dignicaps....!!0 -
sachette - the dignicap protocol is pretty much like the PCC, although they are not as strict I'm think when it comes to my hair its best to follow the guidelines that have worked for so many. So yah I'm only washing once a feel with a mild shampoo in cold water. I did only have to wear the cap for a little over an hour after my transfusion, not sure if that's going to make a difference but I guess we'll know when this is all over. I'm sure the PFC is the same but I'll see if I an ask. They did warn for "the big shed" around day 18-21 and they did say don't freak out because it will seem like a lot but then it slows way down. The lady I was sitting next to just finished her 6 round of TC and she looked awesome so we shall see.
as far as cost, since I'm in a trial its free, i know right, how great is that. But if all goes well with this round they will open another trial for 100 women and hopefully stage 2 sisters. right now they were only taking stage 1. If these things do what they say will, honestly they are awesome, I didn't even feel any pain just a little freeze in the beginning and then cool sailing
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Arlene...my lashes just went recently. Not all of them though - the top still has some. I took a close look with my glasses on this morning and noticed tons of short ones growing in! The Latisse is working! I hope in a few weeks they look better. Brows are back. Hair on legs is back but growing slower than before...I don't have to shave as often. Hair on my arms is back too.....
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Hi ladies, just wanted to know if i should use the caps in between chemo sessions? and if so, for how long? Also, can you please tell em more abt latisse? I asked my doc but she did not knwo anything about it. Thank you.
Its day 2 after my first chemo and i feel okay, jsut a weird taste/feel in my mouth.:-)
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Snoopy: I did not wear caps at home as my caps were at the med onc office...they have them there and I could not take them home. As far as Latisse...my med onc knew nothing about it and then looked into it for me and wrote an rx with 3 refills. It is expensive...insurance does not pay for it. It was about $100. There are some generic one's I think - someone wrote about it back somewhere in this thread. It is less expensive. I definately have tons of short lashes coming in. I lost about 80% of bottom lashes and about 40% of top lashes I would guess. They look so thin where there are lashes on top and then the inner/outer corners don't have any long ones...only the very short new one's growing in. For now it does not look to odd as I still have enough long ones...I hope they stay put for a while until the other ones grow in......
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Hi everyone! Once again it's been a while since I've come on here but I am following all of your stories via email. Congratulations to those of you who have recently finished and welcome newbies.
Susan - thank you on behave of all of the sisters for sticking around more than a year PFC to continue to give support and answer questions. That's so great!
As for me, I'm just about 1 year PFC (4 days away) and I'm doing great. Last month I moved back into my apt. after 2-1/2 due to a nearly complete renovation (which came out great and went relatively smoothly).
I had T/C x 4 from May to July 2010. I only really lost my sideburns and overall the hair was a little thinner but definitely not noticeable to anyone. My shedding continued for more than 2 months PFC but it wasn't any heavier than it had been all along.
After 2-1/2 months I colored my hair at a salon that uses organic stuff. I did that again 6 weeks later and then returned to the normal hair color. After a few months it seemed that my hair was always so frizzy (not that it was so great before - it's curly/wavy and gets frizzy in the humidity) but this was really bad. Every day was a bad hair day. I couldn't take it anymore and 5 weeks ago I did the Keratin treatment (with a tiny bit of formaldehyde). I had done that a couple of times a few years ago. I am SOO happy with my hair now. Even the bad hair days feel so much better than the best hair days I had before. I can see why people get addicted to this stuff. My hair seems to be handling all of this well. It is probably thicker than it has been in years. The shedding a year out is still less than I remember it for sure. Now when I wash my hair after 2 days of not washing it, the shedding equals what I used to shed when I was washing every day.
I hope for all of you that are experiencing this heavy shedding PFC that it will stop soon and then you will see that the shedding will be a lot less for hopefully a very long time.
Best of luck to all of you.
P.S Chey...nice to hear from you. I was thinking about you and hoping that you were doing well!
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Snoopy I wore the caps 2-3 days after TX for 2-3 hrs.
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Drim, It is great to hear from you! I always wonder how you are doing and what you're up to. Can you believe it's been a year? CONGRATULATIONS sister!
It's amazing how word has got out since the Good Morning America story last fall. I coach a new PCC user pretty much every day at this point -- mostly word of mouth from work, friends, and some from the PCC list. It is enormously gratifying. Though it's been a year, I remember exactly how I felt when I rec'd my diagnosis, as well as the panic and fear that set in when I learned I'd need to go through chemo.
I've had more than a few friends choose to not go through chemo, some with recurrence, and I hope that some day SOON fear of chemo and fear of hair loss will not be factors in that decision. I remember starting caps -- fully expecting it to be a hoax, and not having real detailed info on how to proceed -- and I'm grateful to put my cancer experience to benefitf others, so that women don't have to reinvent the wheel. It's been enormously rewarding to have a greater purpose to it all. Pass it on :-)
Cheers,
Susan
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I agree with you Susan~
My husband and I have been able to help 4 couples with PCC demos and phone calls etc.
It really makes you glad that you can give back in some way...
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Ang7: I know I couldn't have done it without you! I hope we get to meet in person some day.
Susan
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Aww, shucks Susan!
Thanks so much. I would love to meet you in person...
It would be great to have a Penguin Graduate Reunion.
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Nice to see you 'old timers' hang around and provide advice and encouragement. Chemo was, as they say, doable. Next step Radiation which begins Monday and then Arimidex and finish Herceptin. Hair still hanging on!
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Hey graduates ... is there anything we can do/put on our scalps to keep it healthy? i'm finding i'm losing some hair because it's so dry and fly-away. i put conditioner on from the ears down, but haven't rubbed anything on my scalp. i feel that logically, if my scalp and hair at the roots had some nutrients, it might do better. I've done 6 of 8 txs ... i'm barely hanging on and am concerned how much will be left with the PFC shedding everyone is talking about. Anyone try anything on their scalp?
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Good to hear from you Drim! I'm a little over 6 months PFC and my hair is growing in all over from where I shed. Little pieces sticking up on top of my head and definitely the side burns. Got my hair cut yesterday and my hairdresser said she could see it everywhere. I had no idea that much was gone. Nice that visually no one or even me could tell.
Wish I had some scalp advice. Mine is still dry and I get flakes like dandruff, but I still only wash every 2 days, sometimes every other depending on what's going on in life.
Anyone remember why you don't get your hair cut right before starting? I'm helping a newbie and she wants to cut her hair 2 days before first chemo. I know it's about trauma to hair, but a cut doesn't do anything to the scalp if they are careful right?
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