Cold Caps Users Past and Present, to Save Hair
Comments
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MlMomma, everyone's shedding pattern is different but I can tell you that around the hairline is a common place to lose hair. That's where I lost the most. My best advice is to mess with your hair as little as possible. I only combed once a day. Scoop up the hair that sheds, throw it in the trash and concentrate on the hair that's still on your head. Your hair looks fine even though it might not look like your normal hair.
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I had a lot of scalp pain, but I still kept my hair.
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Hi, Momma :-)
My oncologist also said this;
"Everyone's different. If you come in for our next visit and you still have hair, then we know it is the cold caps.".
And guess what? I proved to him that the caps work!
You will too!
Oh, and I also had that tingling feeling on my scalp early on. I honestly thought all of my hair was going to fall out.
For the first few weeks after my first chemo, I would wake up several times during the night half expecting to find tons of hair that had fallen out. (And I am not exaggerating)
But, thank God that never happened!!!!!
I know how hard it is, but try not to worry.
Just make sure the caps are tight on your head and that they are cold enough.
I wish you all the best.
Lynda
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Hi MIMomma- that's exactly what my hair looks like around my ears. Have faith. .. it will not all fall out. Like I mentioned before, my worst shed was around Day 20. It stinks I can't wear my hair tucked behind my ears (which is the way I always wear it) but I'm 3 treatments in.... Day 48. My hair is thin but I still have it. The shedding will let up.... stay positive. I know it's hard but it will slow down. ♡ Kim
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Thank you all for taking the time to talk me off the ledge! Isn't it crazy that after biopsies, surgery and now chemo, this stupid shedding is what is giving me the most stress?! I will say that the initial diagnosis was the pinnacle of stress, but the hair loss is a close second for me. And I don't even have great or gorgeous hair. But it is the whole idea of being branded with the big C for everyone to see that the bald head symbolizes for me. I'm sure you all know what I mean. We are not breast cancer...we are everything else but breast cancer. And I for one want to get back to that everything else as quickly as possible.
Which gets me back to the shedding. I know that major shedding starting around day 18-21 or so is very common. For those who had this type of shedding, how many days did it go on before it started to let up? Did people then have another similar shed at the same number of days after their other infusions? Was there any hair growth while still on chemo or did that not happen until after?
Sorry for all the questions but I feel like I've already lost 3,000 to 5,000 hairs since Sunday. And things don't seem to be slowing down yet. I'm so afraid I messed something up with the first capping and now I'm screwed. Arrrgh!
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Good morning MIMomma - I shed heavily for about a week and then it just about stopped. I was also thinking the same thing during that time .... omg, is this going to happen after each infusion?! Answer = no, not for me. I had my 3rd treatment and I did start to shed again but only a few hairs here & there. In between my 2nd & 3rd treatment, I almost stopped shedding completely. This shed I'm going thru now is light. Maybe 20 hairs when I comb in the morning and some throughout the day (4 or so come out when I comb thru using fingers). Still stresses me out but nothing like first one. The weak hairs are going to come out either way so don't be afraid to touch your hair. Try to minimize combing. Yes, I hear ya ... most stressful part of this whole ordeal. But, my husband keeps saying "you would be much more stressed if you were bald." I AGREE!! You didn't mess anything up ... we all go thru this. Stay strong!! Kim
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Hi MIMomma1. Try ordering some Toppik. It won't make the shedding stop, but it fills in the thin spots and that will stop you worrying so much. As Geralyn says: WORRYING CAUSES … alopecia. (I laughed the first time she said it to me, because I was also freaking out.) Order some Toppik hair filler, poof it on in the morning and know that just looking like you have a regular hairline or part will help. Seriously. And what everyone else said. What's going to go is going to go no matter what. It's the old hairs. Just forge ahead and have some faith.
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Yes!! I completely agree w pch!! The Toppik works very well. I ordered dark brown and it's REALLY dark, fyi. Depending on your hair color, you may want to order a lighter shade. And yes, MIMomma, no need to worry cause worrying causes ....
love it, pch!0 -
PS MIMomma1, Looking at your pics, I lost some there too, and was this not like the regular shedding? It's hard to get a good fit around the edge of the cap there and the hair comes out quite differently. It just sort of falls out, which might feel scary. Same thing happened around my sideburns and the hairline along my nape. Just a half inch or so. That's about cap fitting. The next time, get that band fitted around your forehead just above the bottom line of the cap and over the sides and that will minimize it, you know like a 70s headband but a little lower. You'll be fine. It didn't happen again after my second treatment when we got that down. I just had my third treatment and I still have plenty of hair. And where I don't, I have Toppik! COURAGE.
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MIMomma - I also shed heavily on days 18-20 and 22 (day of my second treatment). I noticed a bald spot near my ear but at the hairline right after my second treatment. Thereafter I shed each day but nothing like those days. I'm following the advice given here to only comb once a day and believe that helps. It will get better. I'm only one week post second treatment. Hang in there. Your hair looks great by the way:-). I am also so thankful for the sharing on this site.
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Thanks so much pch, goldenpaws Dakio and everyone else for the advice and handholding. It has been such a relief to have this place of release and you all have been so kind. I'm typically not a sharer...I'm usually the rock everyone else relies on. So this board has become the space where I can let it all out. I hope you all don't mind seeing my crazies.
Today was treatment 2. My nurse gave me a little more of the love I was looking for in regards to my hair. She said most patients walking in at this point are bald or almost bald and that my hair looked great. I have been very lucky. Although my MO has been noncommittal about the ccs, the nurses have been very supportive about the process...making sure we get one of the private rooms, waiting for us to be all set before starting the first chemo, offering to help with the cap changes, seeing if we needed help getting everything back to the car. I think they are very curious about the whole process. Maybe we will start a group of believers in my little area of Northern Michigan. Wouldn't that be great.
I'm going to bed now. Hopefully tomorrow will be a day with less shedding...for me and everyone else here. I'm also going to go online tomorrow and look into the Toppik everyone is suggesting. Are there also any hair growth products I can try now or do I need to wait until PFC?
Good night and sweet dreams!
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Hi Ladies,
I know it's been awhile, I got sucked into reality TV & have been off the thread for awhile!...everyone sounds like they're doing great & I am so happy for all of the continuing & new users. I am happy to report after 19 weeks of chemo, I only have ONE MORE DOSE LEFT this Wednesday!!!
Though the caps still didn't do too well on me with the AC/Taxol, I plan to cut the few random 10% or so of long hair I have left next week after chemo (I've been using the clip in extensions) BUT I never went bald......I do still have 3 inches of hair all over my head (like I said before...it just broke off, never lost it ALL directly from the scalp...OR its growth?)...it thinned a lot, but I am grateful I had SO much thick hair to start with...though its gonna be a long Pixie cut, I'm scared it will be too thin & my scalp may show in certain spots, so I ordered a shoulder length bob wig from a local wig shop. As a kindergarten teacher returning to work in 3 weeks I can only imagine the "honesty"of the kids & the remarks/questions I'll get regarding my hair....So I plan on wearing the wig to work & special occasions.....I'll be sporting the long pixie at home & the rest of the time not at work..
I'll try to post pictures of my 5 month hair timeline next week...Best of luck to all of you!!!
Lori
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CurlyG23,
Ok guys just for shits and giggles.....is my PCC white and gold or black and blue????
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^ LOL ^
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hahahaha
:-)))
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Suladog. Hilarious. It's totally white and gold.
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Suladog, I've been meaning to ask you...what did you end up using on your roots? I thought a couple weeks back you were screaming for a touchup, but the last picks of your hair (with your dog/love the AbFab reference) your hair color was so beautiful.
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ha! That's why I get the big bucks. I know it's totally black and blue
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Sula,
HAHA...That was a good one!!! so tired of seeing that damn dress!
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Hi all,
First time posting, though I've been stalking this feed for the past few weeks to try to prepare myself. I'm having my first chemo this upcoming Monday, March 2.. I'll be getting 6 rounds of TCH-P, and will be using Cold Caps to try to prevent hair loss.
I have fairly thin hair, and it gets greasy quickly when I don't wash. I've tried to ease in to washing less over the last month to "train" my hair, but it still looks pretty greasy by day 3. I know that everyone has had different experiences, but any tips from other ladies with thinner hair would be greatly appreciated!
I'm also checking out wig shops tomorrow, just in case.
The anxiety about Monday is starting to kick in full force. It's not necessarily the chemo that scares me, but the fear of the unknown on side effects, hair loss, being able to keep working during treatment, etc. Only one way to find out, I guess... Not something I thought I'd deal with at the age of 27.
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DaniellaD,
Belated thanks for the deodorant recipe, I smell like a Pina Colada! Makes me want a cocktail!....
BTW, need to ask my OC if I can have a margarita eventually once my last chemo is done next week...She okayed me for a glass of wine (which I rarely drink) on Valentines day, other than that, she said they like for us to avoid it since everything the liver is going through....Anyone else's OC's give you opinions on cocktails once this chemo craziness is over? I really miss my Friday night cocktails...
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wpmoon...so sorry you have to be here. It's a stressful day ( really like the first hour) and then you get the hang of it, and feel way less stressed. Once you get a day behind you, you'll feel a lot better. Get your stuff ready this weekend, like your pre-cut moleskin and if you have any pain meds or ativan, I use it for the first caps until my head gets cold. Good luck, and keep us posted! Ask any questions you have
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wpmoon,
Gatomal speaks truth. The first few minutes of the first cap are the toughest, then it evens out from there. I finished my 5th of 12 weeks taxol/ herceptins today. My mo prescribed 2 norcos for me before chemo as I cannot take Ativan. I had it during my first time chemo 25 yrs ago and I get the opposite reaction the rest of you get. I take a prescription for ADD and so certain sedatives don't work on me.
I never wear any makeup on chemo days since my face looks like the inside of a Dr. scholls, what's the point? I cut a forehead template out of waxed paper that comes just below my hairline, that I stick on. Then I cut a piece that goes just up to the hairline and tape it on to to template moleskin. this prevents me from getting sticky tape too close to my hair and defeating the whole purpose. I took the hint from someone else here and wrap panty liners around my ears...... "Who are you wearing?" "Kotex dahling!!!"
It's not my best look but I've paid good money to look a lot worse, and that wasn't saving my life.
I have a different protocol than you do, but I've done tougher stuff in the past at a very young age and this is a whole freaking lot easier SE wise. My worst problem has been the opposite of constipation and that's easily manageable with a bit of Imodium. Other than that I'm back to working which I'm happy about.
You'll come through this like a champ. I've learned so much from everyone here. You are in the right place
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MiMama1,
I used touchback, dark auburn ... It's like a big magic marker thing with a little comb o help one get at the roots better, which someone here recommended, plus I also picked up Style Edit in auburn which was also suggested .by another cold capper That's spray on color. Dunno how well it all matches but it does the job and it's just temporary so when I have to wash my hair I have to do it over. I wash before chemo then on the day after I color the roots as I don't want to risk getting anything on the PCC. The touchback was like 29 bucks and the style edit was 19 of course I liked the Touchback better because it was closer to my own color.
Hope that helps
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Thanks Suladog! I think my gray/white roots are making any thinning look 10 times worse. So between your suggestions and the Toppik many of you have suggested, I think it's time to do some online shopping.
One more question for everyone: dry shampoos? Anyone using them, love em, hate em? Any specific product recommendations? I'm like wpmoon with fine hair that gets very greasy and flat by day three of no washing. If I could fluff it up a bit with a dry shampoo it might look fuller and better. Thanks!
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Wpmoon,
Sorry you have to be here, as well as the rest of us. Nonetheless we'll make the most of our situations through the support, encouragement and sharing of each of us. Passing along some of the advice I received before I started chemo as well as some tips from my experiences. I've had two TC treatments thus far. Be sure to view the PCC video from their website and have your PCC helper practice putting it on tightly, especially around the back of the neck, around the ears and front hairline. Be sure to cover your forehead and ears with moleskin and leave no open spaces. I had small spaces near my hairline and after my first treatment had frostbite marks there. Get dry ice and pack coolers the night before (if your doctor's office doesn't have freezers). Buy some Imodium (in case of diarrhea) and Miralax (in case of constipation). I wound up needing one dose of Imodium after each treatment. Have some Benadryl available in case of a rash. Cornstarch helps too. Both alleviate the irritated feeling. Stay well hydrated during your treatment and days after. Rest whenever your body tells you to and for as long as your body needs it. You'll be fine! I wish you all the best. Ask any questions you have.
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MIMomma1 - I use Suave dry shampoo and I love it. Simple, cheap, let's me wash my hair every 2 to 3 days instead of daily, which is bad for it. I did not use it during cold caps, b/c I didn't know about dry shampoo...but if I had I might have...I'm sure it is against CC protocol so you'll have to decide for yourself whether to risk it or not!
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Thanks Dancetrancer! I'm gonna hunt it down and look at its ingredient list. I'd love to find an organic/all natural dry shampoo since I would think if you can sprinkle Toppik on your hair/scalp you should be able to sprinkle a small amount of organic dry shampoo on it as well.
Wpmoon, this doesn't have anything to do with capping, but I also kept a drug log with each of my infusions (just finished #2 on Thursday). For each day starting with the day before a treatment, I write down what I take and when. That way I not only make sure I take everything I have been ordered to (steroid) but also to keep track of other drugs (like dulcolax, anti-nausea drugs, clariton for the neulstra shot) to see what is working/not working so that I can adjust if needed next time. And I would stay a step ahead with the drugs. Even if you don't feel nauseous, start taking the anti-nausea drugs that first day and continue for several days (I kept them up for a week and never felt sick). Hope that helps.
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I use Deva curl no poo since I have very dry curly hair, no sulfite a, para been or silicone in their products .. Luckily I have been using this stuff for the last year do Indidn't have to switch products. I hate washing my hair in cold water though... Brrrrrrr!!
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WPmoon, you'll probably find that once you start chemo and the caps, your hair won't get as oily. The chemo tends to dry your hair out. I used to have to wash my hair every other day, but I could easily get by washing it only twice a week while on chemo.
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