Cold Caps Users Past and Present, to Save Hair
Comments
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Willa216 - yes I had 6 cycles of TCHP, and right after started HP every 3 weeks until next Mar. Started Arimidex Aug 1st.
I washed my hair today and had to take an Ativan to get through the anxiety and the shedding. I'm going to see my dermatologist next Monday to ask his advise on what I should do with my hair. Doing nothing and just waiting tosee if the shedding stops is driving me crazy. None of my friends understand my anxiety, and keep telling me"it's just hair", or you're too sensitive, etc. I'm so glad at least ladies of this community are so helpful and kind.
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This is the amount of hair I lost today after washing. It's a lot, isn't it ladies? 7 weeks PFC?
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KD, I'm 7 weeks pfc - and lost a similar amount with washing yesterday - plus I'm losing a bunch with combing in the morning. (I just flush it, I don't want to see how much it is!) I have so little hair left on my head. But I am getting regrowth. Are you? It's a race - can I get to a place where I have a short (sassy?) haircut one of these days- or will I just look like hell for 6 more months? I don't know - it's totally an up and down thing. I can't believe how much emotional energy I spend on this. I work as an administrator at a school - the teachers have started to come back to set up their classes - and I am facing all new reactions to how I look every day. It's not easy. I do have a wig (a topper) which I will probably rely on more in the weeks ahead. Still - as I've said before - if I have gone this long without a wig - it's a win. The shedding has been worse PFC (or is it just that I have so little hair, each loss is greater in scope?).
I'm sorry for all your sad, difficult, negative feelings - you Viktoryak, Willa....and I feel your pain. I'm grateful for this forum - a plan to "unload" is so important.
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Aimless - thank you so much for your sympathy. I lose average of 120 strands a day also, I do have some regrowth, no bald spot. I'm on medical leave until mid Oct, and if my hair does not get to a place where as you said I can get a short and classy haircut, I will quit. I work for a well known large organization and only my manager knows about my condition. I work with the CFO office daily and can't imagine looking the way I am at work answering CFO and VPs and staff. Our building has 27 floors and imagine how many ppl I have to explain my freaky look to everyday. That's why I'm very curious to find out what my dermatologist will recommend next week. I'm so sorry for venting, wash days as you are aware are tougher than other days. I still wash my hair in the kitchen sink
(. Thank you all for your support. 0 -
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KD2016, mine kept falling, then fell some more after surgery, then stopped:) That day will come for you too.
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What I don't get is in 1983 at age 39 my mom had breast cancer for the first time. She did not lose hair just very little. Her second time 30 yrs later she lost all of it. But I read that the regimen after first is stronger bc resilient cells. I was 10 yrs old at the time. Why in 2016 the drugs seem like they are more powerful that we lose our hair?? I knw that it's come along way and things are more tailored but it makes me wonder. My husband also thinks it's a big business.
Willa I feel ashamed of this too , have only told a handful of people. I have been there for my mom and she was very accepting w her cancer twice. I don't knw what it is w me. I'm not a prideful person but a private one. I really don't want to suffer in silence just feel stuck. I don't have a lot of people that I trust and I don't like being center of conversations. I've always had women/ girls view me as an outsider my whole life. I have t had a best friend in over 15 yrs.
Another thing that I hve a hard time with is I had a chance to get a prophylactic mastectomy I could of avoided all of this if I would of seen another dr. I'm brac1 like Angelina Jolie. My breast dr said to do it but Stanford that did my genetic profile said not to. But I wonder what would of happen if I'd talk to 1 more dr for 3rd opinion. Can I ask why you had second pathologist look at your report??
KD that looks about right but I have more that comes out. Here was
my last shower after 2 infusion I pray that it be like that anymore
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Aimless where did you get your topper?
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Meow: I can relate to you on so many levels.
On your regrets as far as prophylactic mx. I feel your pain. I struggle daily with a similar issue. I went to Stanford for about 20 years to a doctor and imaging facility that I trusted implicitly. I even drove 5 hours to go to them when we moved 10 years ago because I felt safe there. As it turns out I had a 2.4 cm tumor and a 2.0 area of DCIS in my breast that was never diagnosed as anything but fibrocystic changes - for years. It was cancer all along. I have been torturing myself with all the What Ifs. What if I had gone to see a different doctor, what if I had gone to a different imaging facility, why did I think consistency was key? Why?? Then when I initially had the biopsy it was HER2-. I got a mx with immediate reconstruction because the tumor was so large compared to my breast. I was told I had no other option even though I would have done anything to have a lumpectomy. After the surgery the pathology report came back and the tumor was actually HER2+. Apparently the original biopsy just caught a part of it that was HER2-. So if I would have known that upfront I could have had TCHP chemo and likely avoided mastectomy altogether. All this to say that I got a second opinion at UCSF on the surgical pathology because of so many issues at each step of the process in my case - many I haven't even mentioned. I spoke to several oncologists, several general surgeons and several plastic surgeons and honestly nobody said the same thing. The second pathology report was different and now I am at a different stage with a harsher chemo. It is unbelievable to me that it is so hard to get agreement between pathology reports and between doctors for best treatment approach. But, and here is the thing, this is how it is. You could get a 3rd opinion, a 4th opinion, etc. and maybe you would have agreement but just as likely not. Again, I can relate to your pain a million times over. Each day I try to say I will use my energy for what is happening now and not for what has gone in the past. But it is hard and I 'm embarrassed that I still cry each day. I try to tell myself I did the best I could with the information I had at the time. We aren't doctors and we can't know all medical details. We look to them for help but they can't know everything either. Moving forward I am trying to look at decisions with an eye for "regret reduction". So I try to ask myself how will I feel if x happens, can I live with it? Regret is killer. I wish I could help you in some small way. I think it takes time and perspective and gentleness and patience with yourself. I wish that for you if it feels right. We do the best we can in our lives while we are here and when we do less it doesn't mean we didn't try. I hope this isn't too soap boxish. It's a bit much for the hair thread
FWIW, I think it sounds like you're getting great care now and that is truly key.0 -
hi everyone, it's been a long time since I've posted, but I've been reading you comments and I wanted to share what is happening with my hair. Im 10 weeks PFC, cold caps worked in the sense that I still have some hair so I avoided that permanent hair loss threat, but I lost most of my hair, no specific bald spots but overall so thin I can't leave the house without a cover. I have regrowth so my hair is many different lengths, my right side is especially sparse and so the regrowth make it look like an assymetrical haircut made by a very drunk person.
Also my roots and the new hair were completley white, which made my scalp so much more noticeable, so at about week 7 PFC I decided I've had enough and i went to have it colored, I figured i didnt have much to loose, I went to a place called original & mineral which uses dye that is ammonia, peroxide and ppc free, and its so great! Nothing happened, no more shedding than usual, my scalp didn't get irritated and the optical illusion it creates makes it seem like i have double the amount of hair, if I can ill post some pictures. I still use scarfs and hats but now I can also use the topper without the white roots showing
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Willa, I am so very sorry I regret posting such a "poor" me post. I knw that there are other women w worse or same experiences. Everyday will be different for us we always carry a burden of some sort perhaps for the rest of our lives. We've lost our "innocence " to some extent. You went through a lot and I wish I could hug you. Don't be hard on yourself because some of theses cancers I was told possibly show up later or in other breast. I have a friend that had triple neg like me few yrs ago but no braca gene hve a lumpectomy and she has a lot of pain w it and feels hard lump. She told her dr and he says it's scar tissue I told her don't let it go and see another dr. Hoping its nothing but she hasn't seen another yet Also my mom had couple of friends that had issues w lumpectomy and cancer came back. They didn't live another 10 yrs. my mom had reoccurrence 30 yrs later but if she'd done BiMx she could of avoided stage lll. I'm not trying to scare ANY ladies reading this because EVERYONE'S SITUATION IS DIFFERENT!! There is really good results w lumpectomy nowadays, I just want you to have some peace of mind w your mx. Even though the chain of events was shitty for you. It may be a positive thing in future? I'll be careful how I word it bc were not over that hump yet. I went to " specialty imaging center" for people that are high risk like braca and they missed my tumors on both breasts. Last year in August was my 3D mamo , perhaps could of avoided chemo and didn't know I had DCIS on right side at all until surgery and left side turned inVasive then I was told DCIS stage 0 no chemo. 6 months later I had B MRI and that's how it got diagnosed.then stage 1B w multiple areas of more DCIS. I can't understand how did they miss it way back last year in August!! My mother was ignored by her dr for months when she told them she felt a lump and she had BC years earlier.
So Willa we need to hang on literally one day at a time. Somtimes Im hanging by a thread. I have 3 young kids and need to snap out of it for them. I know all there is is bandaids or temporary fix. I don't understand how your situation was missed for so long. It makes me angry bc we are helpless and have to see drs but they drop the ball. My husband for years has called them quacks. He has seen too much in past. I tried to take charge of my health it took 3 years to get my dr to test me for Braca and less than a year of my results I've had double mx and chemo! WTF!( excuse me) On your change of treatment is it confirmed w more than 1 dr to switch?
Don't be embarassed and try not to be upset. I had confirmed results and I let it go knowing that I shouldn't put my trust in the system bc of human error but for you ,you were given info that wasn't correct it is not your fault !!!Try not to go there if possible we are mourning at different times but there will be time that well look back and see our strength And I am here for you!!! Like the ladies here too!! Contact me anytime if you need!
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wow, Cody, what a difference! I am getting worried about the gray also. I am so fortunate that I am not even shedding as yet (a week a away from 3rd a/c) but the gray makes me look like I am balding. If I can keep this up into taxol, I may try what you did. Looks great
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Meow - I got my topper from my hairdresser. We ordered it from a catalogue (he had hair color swatches). It's a raquel welch topper (some call them a toupee fall). He cut it, styled it and cut bangs into it. It's human hair (not cheap - around $600), but I'm really glad I have it. As the weather cools I may be wearing it more. It makes me feel more like me. Will we ever "feel" normal again. And can I just take a very long nap till that happens? (;-)
Cody - I can totally relate to your hair - and I think in another week or two - I'm going to go to the "organic" salon I went to before I started chemo to do my color too. Thanks for the boost.
I'm praying for us all - Meow - you never need apologize for 'down' posts. The generous ladies of this forum taught me that. That's what this forum is for.
75% done radiation.
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Cody - thanks for your update! What you did looks great. I'm so glad to know there are options and appreciate you sharing your experiences and ideas. Hope you are doing well each day PFC (and your hair is too!)
KD - I wanted to say that I spoke to the penguin rep today about Perjeta because I may need to use it. She said we have to treat Perjeta as a chemo agent and cap with its use- maybe you know this already and are doing so? Not sure. I'm sorry you're feeling so bad about how things are going with your hair. I wish there were an easy fix for all this angst.
Meow - thank you for all your kindness - what a big heart. I'm sorry you had imaging/diagnosis issues too. I think there are more than we realize. By the way, I didn't take your post as a "poor me" post at all. While I wanted so much to help you feel better and understood, I think I came across as complaining. I was hoping to just let you know you're not alone. I think you're doing an amazing job. I can't imagine dealing with all this crap and being a mother to three young children whom you love and adore and need so much from you.
Aimless - do you feel normal in your topper or do you worry it will fly off your head? I got a wig as back up. It's a reasonable match to my hair and my husband says it looks good - but he's pretty gentle with me right now as I'm a little off my rocker. I can't imagine wearing it. It's like a dead badger on my head.
Wishing everyone good things.
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Hi all
I haven't commented in a while but I have been reading all your comments. I am a year out from my last chemo and I still have days where I feel down and wish for my pre cancer life back so to the ladies that are having bad days don't feel guilty and don't think you have to snap out of it because you don't. Hair wise mine is growing in nicely now just shorter than I'm use to but it will get there all in all I was prob around 50% happy with my results now a year later I'm around 70% happy with how my hair is looking but everyday is one more day closer to being 100% happy.
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Hi Willa, When I wear the topper I pop a headband on to make it feel more secure. I was hesitant to clip it to my hair at first -but now I figure what the heck. Just a thin one with grippers that just makes it feel better anchored. I could do it without, but I've gotten used to the feeling of it on that way
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I'm 5 yrs out and now have incorporated my bc cancer history into my new "normal". It takes a while to assimilate everything that happens to you after diagnosis. Be easy on yourselves!
BTW, I'm extremely happy and feel very healthy. And I am extremely grateful to still be alive and able to enjoy life.
You can't change what happens to you in life. All you can do is roll with the punches as best you can, and try to make the best of it. Well, you can focus on the negative, and get stuck there - been there, done that - but trust me - that only makes you more miserable.
Refocusing myself on what I have to be grateful for every day when I wake up, and every night before I go to sleep, has really changed my outlook on life!!!
Hang in there ladies!
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to all the past cappers, what did you do with all the hair regrowth? Did you end up cutting your hair short? Or just hide it under the longer hair
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So, my first treatment is tomorrow... Took my decadron this morning. Feeling a little loopy from it. Should make for an interesting day at work. I'm nervous about the SE to come from that. I had to take steroids a few years ago for an allergic reaction and did not like the SE's at all (do not ever walk through smoke of a fire that may contain poison ivy). Also have not washed my hair since Tuesday. Yuk. I made a homemade dry shampoo from cornstarch and lavender essential oil that helps a little, but looking forward to the day my hair decides it does not need to produce a fountain of oil. My husband says I must feel worse than I look (sweet of him to lie...) We practiced the caps last night and it went pretty well. Of course they were only 15F. Husband seems pretty proficient and has been reading all the material they sent and watched the videos. Very nervous for tomorrow.
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Ok, here's a silly and trivial question: Is everyone PFC still sleeping on the damned satin pillowcase. I must say - I miss my regular pillowcase.
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Kechla -- You can do it! I really think you feel SO much better after your first treatment and capping is over. Also, if they offer it, take the Ativan in your premeds. Relaxation is good.
Aimless -- I never got the satin pillowcase, so I think you're good to stop.
I don't see the original comment, but I wanted to say that I did NOT treat perjeta as a chemo drug. I had Taxotere, Herceptin, and Perjeta. I capped for 40 minutes before Taxotere, 1 hour of Taxotere, and then 4 hours after Taxotere which included my 2 hours of Herceptin/Perjeta. I had Herceptin/Perjeta alone before surgery and chemo and had ZERO hair loss, so I knew it would be OK.
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Kechla - good luck!
Aimless - I'm still sleeping on my satin pillowcases more than 3 years PFC! I actually think my hair gets less messed up sleeping, which means I don't have to wash and style it every day.
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kechla, good luck today! You will do great! You will be so busy with caps, time will fly! Your husband sounds like mine. Took charge of the whole operation like a drill Sargent! I am a week from my 3rd infusion and have zero hair loss! I do take an Ativan and 2 Tylenol right before to counteract initial shock
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Good morning ladies.
Willa - yes I did treat Perjeta as a chemo drug when I was getting chemo. Immediately after chemo I started Herceptin/Perjeta infusion every 3 weeks for a year and obviously not capping now. My oncologist totally disagrees with the notion that Perjeta causes hair loss. It's an antibody same as Herceptin but a newer drug. However, anything that impacts our hormones, may cause thinning of hair in some. Frankly at this point not sure if I trust cold cap reps much.
Aimless - having said that, I still sleep on satin pillow case, and even do not drink caffeinated drinks and follow all protocols despite all the shedding.
I'm seeing my dermatologist on Monnday and will get clarity on everything cold cap ppl have been telling me/us.
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kechla, good luck, the first 10 minutes can feel unbearable and then is ok - then the next one feels pretty damn cold and i think i cried a bit - and then after that it was mostly ok, just heavy and LOOOOOONNNNNNNGGGG. You will do great.
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Willa and Meow, big hugs to you both. It is not self indulgent to vent here, that is the point of being here! And it is totally normal to have all sorts of complicated feelings. I think all of us have the "what ifs" - what if I had eaten differently, worked less, managed my stress differently, eaten only organic, had more/different tests, etc etc. At the end of the day, some of us "lived perfectly" and are still here, some of us had all the right tests and treatment and are back here, and so there is no point in looking back and what if-ing. (AT least I tell myself that quite often!)
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Aimless,
I never used the satin pillowcase, although I bought one and tried to sleep on it for the first 2 nights after my first infusion.. I hated the slick greasy feeling of the material. It made my face hot and I felt like the pillow was always about to shoot out from under my head any minute. I went back to my cotton pillowcases and never used them again. I didn't notice increased shedding or tangling either.
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Thanks for the encouragement! And the honesty! I think I do better (mentally preparing) when I know what is coming.
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I'm filled with deep gratitude for this place and all of you here.
Kechla: Agree with everyone that you will do well on your first day! I did cry the first few minutes of the first few caps not because it was unbearable but because I think it's just the body's (well, mine, anyway) automatic WTH response. Tears just fell even though it wasn't terrible. Also, on the husband front, I felt a little bad about asking so much of mine but honestly I think he is enjoying having something concrete to do to help. Capping's action-oriented and he can be crazy bossy and I actually appreciate it. Win/win. Good luck! Sending positive vibes your way.
Aimless - thank you for the topper advice! I hope you're feeling more comfortable with each day at work and all the returning people/students.
Aussie, Dancetrancer and Zinny - your words are so wise and comforting and full of grace. Some days I feel like I can do this - all is okay with the world. I feel strong and appreciate all the small and good moments in life and other days I just, well, do not. I think it requires practice - like anything. Thank you for taking the time to write.
JCS and KD - I'm glad you both said you didn't treat Perjeta as a separate chemo. I'm not sure what to think about the penguin rep... My onc did say Perjeta can cause hair loss but she likely means thinning hair as opposed to total alopecia
Meow - special hello. I hope today has been good to you xxx.
Love and peace.
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Kechla, my hair used to be extremely greasy and I could not go a day without washing. The first 3-4 weeks of chemo were horrible for me, my hair was so greasy it looked as if it was wet (sorry if I'm grossing anyone out). Soon it got much better, as chemo dried my hair out and I was OK for about 4 days without washing. Just letting you know, it will get better.
I agree with the ladies who suggest taking Ativan and Tylenol prior to capping. Good luck tomorrow!
Aimless - I'm about 15 months PFC and still sleep on my silk pillowcase. I guess I just got used to it.
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