Cold Caps Users Past and Present, to Save Hair
Comments
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DebRox: That's the nurse that'll be high-fiving with you at the end of this! I know the feeling, as I was the first user at my cancer center. Remember, they have never seen a chemo patient on your protocol NOT lose their hair before. Even about 15 years ago when there were some truly awful "caps" (basically shower caps with lots of ice in them, nowhere near the sustained -32ish celsius temps required), the nurses saw failure. This will be the first time they see success. Keep positive and remember that the hair care protocol between chemos is every bit as important as the cold caps themselves. Sounds like you'll start shedding soon, but it's normal.
Arlene: You'll do great. You've been through the worst of it at this point. Radiation (for me) was a total non-event. Seriously, 15 minutes a day including checking in, dressing, undressing, and getting my parking validated. Took no time, had no SEs, used a little aloe in the very last week, all is well.
Cheers,
Susan
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i finished 3/24--still shedding a great deal--on my second round of eye lashes---and just broke my hand tuesday night): i am going to try a few foils on june 30---i agree i just stand up and strands come out---hate to wash- gets worse then---but--still have some left and new is growing!
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I am shedding so bad this week....worse than during chemo! AGH!!!! I just want it to stop already. I had bloodwork done by my holistic md so liver and kidneys are fine...just post chemo shedding I guess. I just thought it would stop or stay the same....not get worse. I have not even combed it in 2 days.....I just gently clip it up. Gross.....especially after 6 days of no washing and working out several times...ick!
I did see my PS nurse yesterday for my pre-OP check up (for exchange surgery in 2 weeks) and she has not seen me since chemo #1. She could not believe it when she saw my hair (gross and all). I had to unclip it for her and she was smiling from ear to ear so happy it worked so well. She said she has been telling people about me and they had been asking if it worked...she said she even asked the PA who saw me last time I was in because she wanted an update. It is nice to see people be happy it worked instead of all of those nurses that want our hair to fall out to prove us wrong. She was always interested and supportive of my trying to save my hair so hopefully she can spread the word to other women going through this. This reinforces to me that despite how much hair I know I have lost, others can't tell........to them I have hair like everyone else. I do have to say this shedding now is the worst I have had....it is starting to let doubt creep in that my hair will hang on. I keep telling myself others had bad PFC shedding too.........trying to keep the faith.
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Ok, day 17 the shedding has started!!! How long does the major shedding last? Strands seem to be just falling out. Ugh!
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Hi Ladies:
It is scary when the shedding starts. The first one does seem to be the worst and it should settle down.
Maria: You have SO much hair left that you should be just fine. Try not to worry as that makes it worse. You are going to be just fine.
Today is Day 28 post #3 so I'm shedding but it has slowed down and now I'll wait for the Post #4 shedding to begin but at least I have new hair coming in and is that weird. Skinnest pony tail I've ever seen but I'm dealing. We'll see what the next few months bring.
Arlene
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Thanks Arlene but this is way worse than any shedding I have had so far. I am starting to really freak out. I put my hair down and there were tons of stragglers hanging down from the length of my hair. When I collected thm there were sooo many that I counted them (I have never seen so much or ever counted them before). There wer 65 of them. I have not even been combing it because it is SO bad. There is no way I can even think about washing. Why is it so bad this long after chemo all of a sudden? This is drastrically different. I had blood draws tbis week and liver and kidneys are good....dr called today. Did this happen to anyone else after chemo? I finished on 5/4. I feel like I will lose my hair now or something. This doesn't seem right.....help.
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To Mdg:
Have you changed any thing in the way you handle your hair? Wash more often?/Changed shampoo or conditioner?/Colored your hair? I finished 4/21 and did shed more after chemo than during, but not that much more. I am still shedding, but when I showed it to my sister in-law she said it was less than what she sheds when she combs her hair--no cancer/no chemo! Maybe we are watching the hairs fall out too closely and are obcessing about it.
Keep Positive!!
Nancy
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Mdg. My last chemo was 2/25. So I am week 15 PFC. Yes I had/have major shedding PFC. I think I was shedding about 100 strands a day it would just fall out day after day after day, way more than I experienced during chemo. Yes, I was stressing out about it, I too wonder if I will have hair. Someone posted their shedding lasted about 3 1/2 months PFC. Sure enough 3 days ago my shedding suddenly drastically changed maybe 15 strands for the last 3 days. I hope the shedding is over I would like to keep the hair I have left. I am only washing once a week. Keep it pinned up as hair is all over my clothes etc when down. When I researched normal hair loss it said 40 to 100 strand a day is 'normal'.....
ArleneA congratulations on finishing! Yay!0 -
Hi ladies- I was the same ....about 3 1/2 - 4 months PFC I all of a sudden quit shedding. To be honest just like Maria...I let doubt creep in because it seemed it wouldn't stop...then all of a sudden I noticed sideburns that I didn't even realize I'd lost and the rest of my body sprouted (literally) everywhere else and shedding went to minimal...less than before chemo...sure it has to do with old hairs versus the ones that are young and strong.....I kept probably 80% of my hair in the end. No one but me can tell it's a little thinner and limper....every day now it gets closer to normal...by last chemo was 1/13/11.
Btw...congrats Arlene!!M0 -
I took a picture yesterday I'll try to post when home.
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I have not done anything different. More keeps coming out. It keeps falling on my arms......what do I do? I did start tamoxifen on Saturday but had to stop because I have surgery in two weeks and PS won't allow it for 2 weeks prior to surgery.
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Maria...I promise you...you will keep your hair...mine was similar...I cried once because I was sitting on the couch about 6 weeks PFC and I collected hair after hair from my arms and I would sweep the ends of my hair to "catch" before it fell...and filled up a sink..but all turned out ok.... Remember "thinner and a little more limp" but you will have all your hair!
I know all of us think it's over when we pack up the caps and send them back...but there is still 3-4 months of getting your hair back....but put it in perspective...that's the time that those that do lose their hair just start their journey back to "normal" hair... the road is long either way....we just get there ALOT faster.0 -
Lmflynn; did you still keep washing? If I lose this many hairs doing nothing....can't imagine how much will come out washing. I only was once a week....
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Hi everyone. I am getting ready to start chemo next Friday and haven't been able to get in touch with anyone from PCC. I have called twice and sent several emails. I also faxed in all the paperwork two weeks ago. Did anyone else have this frustration? I have heard from one person on here that they may not get back to me until right before my chemo starts but it is in 7 days and I am freaking out. I am going tomorrow to look at wigs just in case.
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Momof4girls. My caps were overnighted to me. Frank was very attentive and easy to get in touch with. Hang in there
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Maria....sent you a PM.
MOMOF4... go to the PCC website and call the Michigan #... Geralyn was a PCC User and also helps Frank...also believe Cheyenne has been on this site was a user and is working for him too. Try to find her posts about 5 or so pages back.... Good luck..Im a planner and also freaked a bit but it all worked out...keep trying!0 -
Maria - I think I had that type of shedding during chemo. I am 6 weeks out and am hardly shedding at all. I was on TCH. Do you think it differs by chemo type? It would be helpful if we all added our chemo type when we respond! Hang in there...I remember stopping doing yoga because I could not stand the hair falling off my head, down my arms, then to the floor. Ughh. Now, that has stopped. Your shedding will stop, too. Really, it will.
I wonder what stress does to hair...starting work tomorrow. I know you did last week. I will let you know if i suddenly have a major shed!
Momof4 - I would recommend that whenever you email be sure to .cc all the contacts. I was worried right until the very first day of chemo. It did work out, but it was a lttle stressful!
Annie
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mdg: I felt my post-chemo shedding was much busier than during chemo also. It also surprised me, because mentally, once chemo had ended and my last three-week post-chemo cycle had concluded, I thought the shedding would stop. It went on for a good couple of months. It felt much thinner to me but visually one couldn't tell. It looked a little limper because of the dryness, but roared back so fast it wasn't funny (turns out it had already started growing back during chemo, but I didn't notice). Then, it slowed and within a week or so finally stopped. That's when I knew I could use warm water again.
Not everybody has this happen, but enough of us do that it should be one of the many many variants of "normal".
Hang in there!
Susan
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Hi everyone, I am starting TCH chemo treatments end of June and I wanted to try the penguin cold caps. I live in Queens, NY and am going to the Monter Cancer Center in Long Island for treatment. Does anyone have any good contacts in this area or can direct me to where I need to go to obtain a penguin cold cap? And, is this something I need a approved by my oncologist? Thanks for the help!!
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Momof4: Get in touch with Geralyn.....she will call you back within a day. I just talked with her two days ago...she's around. If you don't have her number, PM me and I will get it to you. Don't worry....she can make it happen! She's a real sweetie and a former PCC user so she gets it!
Annie: I was on TCx4. It may vary by type of chemo but then again I think all of us just shed much different...I think it varies by person. It's hard because then we just don't know what to expect. I am telling myself "today is a new day" and maybe so much hair won't fall. I have to wash tomorrow because we have a BBQ and I think I will sedate myself for that......xanax may help me get through the wash. I never thought I would have to sedate myself to wash my hair.....BC has brought me to some strange places in the last 6 months............
Susan: thanks.....I know it varies by person. Thanks for sharing that it is not just me. My internist saw me yesterday and commented on how great and thick my hair was. I know others can't really tell, but they do SEE every hair fall out like I do.
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I am having the exact same shedding issues, I am 5 weeks post final treatment and I am shedding so much that I am having doubts myself about keeping my hair. I know you shed 40-100 hairs a day normally but when you have very little hair left every hair is important and you cannot afford to lose 40-100 strands a day. It is so frustrating
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Sashette: My shedding lasted for about 3 1/2 months PFC, I think I posted that a ways back. Yes, one day the shedding just kind of stopped the way yours has. Sounds like you may have reached the finish line! Enjoy that first warm-water hairwash, make it a long one!
Btw, once the shedding stopped, it stopped totally. I'm normally a heavy shedder, but until about one week ago, I didn't shed at all, just a few hairs in my hairbrush. Nothing even during my daily hairwash. This week my normal shedding resumed. It surprised me!
mdg: You'll be okay! The only time anyone could tell I was going through chemo, was when my eyebrows finally departed several weeks PFC. Nothing a little brow pencil couldn't correct. About three weeks PFC I attended a party and got to meet Bruce Springsteen, and have a treasured photo of me shaking Bruce's hand -- hair in tact, boob pretty much in tact, and fake eyebrows not even melting in the 100-degree heat, and cancer free. It was a darn good day :-)
Susan
Susan
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Hello ladies; I just met with my Med Onco yday and looks like I will need 4-6 cycles of TC chemo. i am planning to start after 4th of july wkend (want to celebrate my bday first:-) and I am planning on using the PCC. Will be placing my order very soon. ``````
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I have a question regarding eyebrows & lashes shedding - when do they start to shed? someone mentioned the use of latisse, is it something that i should ask my med onco to presribe? and if i use latisse, when can i stop? Please help/advise. Thank you.
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Snoopy..my brows thinned but have not departed in fact I had to pluck some stragglers the last few days so they are growing again! Lashes are still there for now. I have latisse only used it a few times....but haven't used it in weeks. My med onc got me the rx.
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Sebm9...that was a good day ! I have some of his music as some of my ringtones. Love that Bruce! Thank you for sharing...... How long are you PFC? Today I once again had very little shedding. I was raining hair before now it is dramatically different overnight, last 4 days, stopped..whew. I like it better this way. My hair wash day is tomorrow so we shall See...
Snoopy73. I lost my brows and lashes after chemo. I used Latisse all during treatment and after. I Am still using it 15 weeks PFC. My brows are back. But lashes are still shorter than normal, but they seem thick.0 -
Maria, I had a lumpectomy and I am suppose to start rads Monday, I postponed rads to go to U of M for a consult about getting a mastectomy with reconstruction instead. I hear after rads reconstruction outcome is not as good. Can you PM me, it sounds like you had both, would love to hear your input.
Thank, Lee
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Mdg and others post-chemo--sounds like you are having the kind of shedding I had after every treatment. I'm guessing some of your hair just hung in there longer and is finally giving up. But you will have lots of stronger hair that will be fine. Take your drugs to get thru your wash! (I had my hairdresser do it once a week so I didn't have to look!)
Leeann56; I did exactly what you're thinking, as my lumpectomy left me with a defect and I didn't want the rads to limit my recon options. I'm happy. PM me if you want to know more. Lucky
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To Aimska: You have to google "Penquin Cold Caps and call the phone #'s listed. The #'s are U.S. #'s, but ring in England where the Penquin Cold Caps company is located. The call will be a regular U.S. call, but figure it is 7 hours later there so be aware of time when you call them. They will help you with everything. Keep calling and leaving messages and always say when you will be starting. Tell your oncologist, because unless they have a freezer for the caps, you will have to bring them in with dry ice and a cooler. You can PM me and I will try to help you.
To Snoopy73: If you google "Generic Latisse" you will find a number of sites that sell the generic latisse and you don't need a prescription for it and it is 1/2 the price. Regular latisse is $100.00 for a tiny bottle and the generic is about $56.00 with shipping. It works great. I have used it all thru chemo and I haven't lost my eyebrows or lashes yet. I am 7 weeks out from last chemo.
Keep Positive! Smile and Laugh as often as you can!!
Nancy
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Hey ladies~
There is a current thread titled "Cold Caps" which could use some of us chiming in on there if you are so inclined...
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