Cold Caps Users Past and Present, to Save Hair
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Schoolmom good luck, we are in your pocket.
(((hugs)))
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Chit, chit, chit! Ladies please take a look at this. Today is day 18. The top photo is the pile of hair that came out today between washing and combing this AM. The 2nd photo compares this morning's hair loss with what I lost yesterday from combing. The plastic baggies are not sandwich bag but rather snack size bags. Please give me feedback. This seems like an awful lot of hair. I am scheduled for my 2nd infusion on Tuesday. I know some of you didn't even start shedding until after the 2nd infusion. What do you think?
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Yes, it's very scary to see hair coming out like that especially almost double from day 17 but it eventually stops and then it starts growing again. Yippee. I lost at least 1/3 to 1/2 of my hair judging by the 3 to 4 inches that is growing back. b know I continue to lose hair many weeks after the infusions stopped and that too is unnerving but CC do work for most so have faith you will be another one of their success stories. Good luck
Amy
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I know it is hard. I struggle with it every day still, but try to put down the comb and fight the urge to run your fingers through your hair to see how many strands you can count. And drink that water.
I am terrible with uncertainty so I have this little stupid game I play where I decide I am going to run my fingers through my hair and depending on the strand count, I will have my "sign". My pt. is I can give advice all day long but I struggle with this too. Not sure when I will feel in the clear.
Hang tough Sista!
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I only finger combed my hair for months. Too afraid to comb it. Just a couple more days and you will show up to your 2nd infusion with hair! That means you will have hair at the end. You are not going to be bald. Everyone is different, everyone sheds differently. You are going to make it.
Update to my PET nightmare post. I just got back from a 5K walk......did it in exactly 1 hour. No breathing issues etc. Hoping this lung thing is a bad dream and not my diagnosis. I just dread the thought of possibly doing chemo again. Trying to keep positive until Thursday. Check in later.
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Oh schoolmom I so hope this is all just a big mistake, too. Thinking of you, I know you must be very anxious trying to control the worry. Hope you get answers soon. Hugs!
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Schoolmom - My heart sank when I read your post. I truly hope that the scan reading is incorrect and that the new CT scan is clear. I'll be thinking of you.
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Warrior, you will always lose more hair when you wash. That's why washing is kept to a minimum. Look at all the hair you still have on your head. Even if it continues to shed like that for awhile, you will be the only one to notice.
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I've just been diagnosed with breast cancer and will begin treatment next week. Can u pls give me any tips you have. I'll be using the pcc. Thank you! Lai Sha
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Thank you everyone. I'm glad no one looked at my photos and started to scream. If anyone thinks my amount of shedding looks like a lost cause please be honest and let me know.
Texas - You really nailed it about the temptation to keep pulling to see how many hairs come out this hour. My DH thinks I suffer from trichotillomania.
SchoolMom - I feel sickened by your situation. It's more waiting. Thursday cannot come fast enough.
Lai Sha - Welcome. Do you know what your chemo regime is? Did you receive the schedule and instructions from PCC? Will you be using a freezer or dry ice?
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Schoolmom - lots of prayers coming your way that there is no more cancer in you. That the chemo did its job. For all of us.
Warrior -don't freak out. I lost a lot after my first chemo tx. Then I was reminded to keep kneading the caps and it was so much less the next time. Now, almost 11 weeks PFC I've lost more than I expected. Checked my "organic"shampoo and found it was not as organic as I thought it was. I think we have to be super vigilant to the hair follicles. They are super weak and need to be babied as much as possible. All that being said, my husband and friends insist that unless they knew what I've been through they would never know. My hair looks great. So there you have it. We are so hyper vigilant. Others aren't. Don't freak out. Just make sure you are following all protocols.
I am done chemo, done radiation, having surgery to remove my ovaries in a few weeks. Wishing it will all stop. It won't. So just enjoying every single moment of every single day with my awesome kids and husband and friends. Not a bad way to live life
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Schoolmom....praying for you! I am so sorry that you have to go through this. You have been through so much already. Hugs!!! All your cold cappin' sisters are behind you....
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Schoolmom- thinking about you- hang in there!
Warrior Woman- try not to worry (I know it's hard). You are going to make it!
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Ugh! Day 19 and combing alone produced almost as much hair as washing did yesterday.
How many hairs need to come out at once for it to be an official clump?
My nerves are shot.
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Warrior woman- I lost a lot after 1st TC,and I mean a lot! By my 4th, I was hardly losing any. Now 6 weeks after last tx, I am losing tons again. The great ladies here have assured me that it is normal. You can trust they know what they are talking about. Try not to worry to much!
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WW, I hope I am not overstepping here and getting into your business.
But when I was freaking out early on with my hair loss, my DH said I was focusing too much on what was lost rather than what was still on my head. It is easier said than done. I don't have the same head of hair but I still have hair and if others notice at this point, it is because I an not coloring it and styling it like before
So, maybe the baggies need to go in the trash. This process is so nerve wracking already, that I can't imagine if I had a visual of how much hair I had lost. Again, I hope I am not in your business especially since lord knows I am in the middle of this same battle myself and come here freaking out quite regularly.
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Too funny everybody! You're not in my business at all. I seriously appreciate the hand holding. I'm posting my weird anxieties here for the world to read and all of your comments are really appreciated. The bottom line is that I will get through this no matter what. I think it is easier to worry about hair rather than cancer, WBCs, my collapsing veins, aching muscles or how seriously ill I am. With that said, I am holding onto my baggies. LOL!
Marley - When you say that you lost a lot after your 1st TC, did it look anything like the amount posted in my photos above?
Did anyone have anything that came close to this much? I will be much happier if / when it starts to slow down.
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WW - For what it's worth, I found every wide toothed comb I tried took out far too much hair, so I switched to using a wet hair brush - a vented plastic brush with thick, round ended bristles set about 1/4" apart. I was able to gently comb through my hair by sections, holding each section in turn and starting at the bottom - like a Disney Princess - and work the tip of the brush up each section. Often I would use just a few bristles on the narrow end section to work out a snarl.
I did have a short period when so much hair was shed at once that I had a couple of serious tangles. I was able to work through most, but did have to carefully cut through the last one when I realized it was too much to untangle. I think that was around my second infusion, perhaps just after it, so probably at about 3 - 4 weeks post first chemo. Please don't get discouraged if that happens to you, because it will pass.
I kept all of the hair I lost in baggies and looking back, it really was not that much. I had a big shed between the 2nd and 3rd treatment - as do many cappers - and the remainder of the time, my shedding was fairly steady.
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Warrior woman- yes it was that much and more! I had it in my mind that I would not continue the cc because I was going to be bald anyway, why deal with the hassle. It really slowed down after the 2nd TC treatment. I still have lots of hair.
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I ordered an extra wide tooth comb on Amazon- I already used a "regular" wide tooth comb- and used that throughout chemo. I went back to my comb about 3 months PFC. I did find the teeth were pretty far apart on the comb I ordered.
I didn't keep baggies. I did check to see if the hair was coming out from the root or not- I've mentioned before I had a lot of breakage- but then I threw it out. But everyone has their own method. Just try to relax as much as possible. And remember you ordinarily loose hair everyday, you are just loosing a little bit more.
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Warrior I lost at least that much in the timeframe that you are in right now. I was also horrified and in despair. But I kept most of mine- thinning at the part but I used toppik fibers and it came back in quickly. No one knew.
remember this is the time when non-cappers will be losing it all and going for shaving. You lose the old hairs but the healthy ones survive the onslaught of the chemo. and the ones you lose start coming right back in. That does not happen without capping - it does not start growing until quite awhile after you stop chemo, if the follicles have been heavily dosed.
Hang tough and just try to not touch it or pull on it any more than you need to, you will survive this!!!
best of luck with the nerves
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I wish to extend my sincerest appreciation to everyone who is helping me through this. It's day 20 and yes I am shedding but I have plenty of hair. And guess what? Tomorrow is day 21 and my 2nd infusion. Unless something really crazy happens today, I plan to walk in tomorrow with hair and plenty of it. If I were attempting this without the benefit of your help, insights, experiences and support, I would not know what to do. And so, to everyone who has hung around long after your cold capping days - Thank you!
We're in the middle of a serious snow storm and I won't be able to pick up my dry ice until a few hours before my chemo tomorrow. This is all part of the grand conspiracy to make me crazy. But hey, if it wasn't a challenge it wouldn't be this much fun! ***Sarcasm***
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WW- You are going to be just fine. Sloan Kettering told me I would be bald two weeks after starting T/C chemo, so you are doing quite well according to their standards. As they wouldn't let me use cold caps (they allow them now), I marched over to NY Hospital for my chemo. I was told by my onco nurse there that shedding started between 18 and 22 days after the first chemo and that's exactly what happened.
Take care of yourself. Drink lots of fluids to flush your system, and ask your oncologist if you are allowed to take probiotics. They may help boost your immune system and prevent you from getting infections. My OBGYN had me take them after coming down with a raging vaginal infection, but that was shortly after my last chemo. He felt I should have been taking them all the way along.
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Does anyone have the new gummy bear implants? I have capsular contracture in the right reconstructed breast and need to replace the implant or have flap surgery.
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Hortense - Interestingly, my MO has not objected to anything I asked to take including biosil, liquid silica and probiotics. As I had a fever of 102.5 this past go around, I imagine I'll be getting a neulasta shot and I'm ready with the Claritin.
reneerDSM - I will have my implant surgery a month after I finish chemo. I am still debating the anatomical cohesives or the rounds. There is extensive discussion on the exchange threads and there is also a Gummy thread. Which reminds me...
Sciencegal, mdg and anyone else who did their implant exchange post chemo - I am wondering if the anesthesia and surgery had any adverse effects on your hair post chemo. I have this terrible image of the nurses messing with my hair when I'm not conscious.
Thinking of Schoolmom.
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I had port removal surgery a month after PFC and did just fine with my hair.
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Have the caps on my list of questions for the oncologist tomorrow. Still don't know whether I will commit to the chemo or not. More bummed about loosing the hair then the boobs.
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WW - I am right there with you on the cold caps and stressing about excessive shedding/hair loss. I'm 25 days out from my first treatment (dose dense AC), with three days until my third treatment, and while I'm seeing significantly more hair loss than usual while combing my hair and showering, it's probably only 3x my normal daily hair loss. Good luck with your treatment and getting the dry ice! Always an adventure! How are you dealing with the pain of the cold caps? I haven't experienced anything like it before and dread them more than anything else about chemo right now. I can't even bear to open the freezer or look at the stupid coolers in the garage.
Quick cold cap/hair loss story from this weekend: I met a friend of a friend who is close to my age (mid-30s), had a similar diagnosis, and finished her treatment about a year ago. The FIRST thing she said when I told her my chemo regimen (same as hers) was "Oh, I have to tell you, you are going to lose your beautiful hair." I explained that I was using cold caps, which she had not used, and that after more than three weeks from my first treatment I haven't seen much noticeable hair loss on my head at all, unlike many other parts of my body. She continued to be INSISTENT that the cold caps won't work for dose dense AC and that I should prepare to lose my hair, because it's easier if you are prepared, and even if I haven't lost my hair yet, the effects of the AC are cumulative, so by the fourth treatment it will be gone for sure. It took all of my power to listen politely and not either punch her or leave the restaurant. I later found out that she chose not to have a port (with AC) because she didn't want a constant reminder of her cancer (like being bald!?!?). I managed to bite my tongue about the port as a reminder vs. baldness -- with all the crap we are going/have gone through, who needs someone being judgmental or know-it-all-ish about their treatment choices and outcomes? Needless to say, this new acquaintance is not going to be consulted when I have future questions about going through treatment.
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lawyergirl - I'm in your cheering section! I had dose dense AC and the caps didn't work for me, so I'm hoping to read another success story!!
Thinking of you schoolmom!
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Schoolmom - just wanted to poke my head in and let you know that you are in my thoughts and prayers. So nerve-racking I know... hang in there.
Kay
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