Cold Caps Users Past and Present, to Save Hair
Comments
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FL_Sunshine - hang in there! Here is a pic of my new growth at the side/nape of my neck at 6.5 months PFC.
The rest of my hair filled in all over and was slightly curly. Made my hair look a bit frizzy at times, but I liked it - gave me lots more body. You can use morrocan oil to help keep the frizz look down where the new hairs come in and might stick out a bit - if yours grows in mine like did.
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Thank you for the pic! That is the exact spot I am bald also
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FL Sunshine- you're almost done!! Yay!
This is my hair today (7.5 months PFC) the hair at the nape of my neck is wavy, which is so weird. The hair over my ears is 3-4 inches now. I have more fly aways than normal around my hairline and part, but I don't think it is too bad! I just can't dry my hair upside down for now or else all of my new hair would stick straight up! I haven't had any really awkward stages of regrowth
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Hockeycat,
I hate the way my hair looks. I usually put it into a loose ponytail. Some above said bad hair is better than no hair. I believe that. I use products at the bottom of my hair. My hair is curly/frizzy and Dr. Bronner leave in conditioner works well.
The only reason I'd stop is if cold caps didn't work. Otherwise, I'd say stick with it.
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thanks, daye. I'm so jealous of all that new hair, lol. I can't wait to be there.
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Cold capping is working, but man, that first cap, for like five minutes, is SO cold. Like -15F. Between that and the aloxi and emend, it's rough. Even with some Ativan. The worst is that some old guy was staring at me across from his chair and I have moleskin attached to my forehead, ears, temples (to keep from getting frostbite) then we wrap this huge blue cap on top. The pain is so intense, your head throbs, and I asked my husband to get me a paper towel to just put over my face so I could cry without this guy starting at me. After five minutes, it gets better, then the second one, first five is a little better, but tears again, and paper towel. But then, it's totally doable. It does make the process much longer, but so far it's working. I hear there is a big shed after the second treatment so I'm waiting.
Are you cappers getting weird looks? Or are people just curious and ask you what you are doing?
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Gatomal- I'm cold capping with the Paxman, so the cap has a hose which attaches to a machine. I'm pretty sure people think it's some sort of chemo in the head area! No one asks...they just stare
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Yeah, they are staring at your luxurious locks, even if you may look like a cyborg!
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I was thankful to have a private room. I wouldn't like being stared at...especially the first time for chemo and caps - as I agree it is overwhelming to manage all the emotions and sensations all at the same time. So sorry that guy stared at you. Ugh! Oh well. You don't need anyone's approval for what you are doing. Let'm stare and wonder. It's YOUR hair!
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DaniellaD, dancetrancer, barremom64, SueBe - Thanks you all for your support. I was so weak last night with fever and body ache. My scalp is always on greasy side, so I used to wash every other days, or whenever I exercised. As my hair is at shoulder length, I cannot put ponytail either. I was a bit overwhelmed… Still have at least 3 more treatments to go (possibly 5). Hope my hair will become less greasy soon. I need to learn how to manage this crazy hair!
For my first infusion, I took a chair in the corner facing the big window. It has a nice view and I couldn't see anyone staring at me except when I went to bathroom. I'm gonna take that chair again next time.
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Hockycat - don't give up! It does feel overwhelming and you feel gross, but just think how much worse you would feel with no hair for months..... When I got disgusted with my hair, I just tried to pull it back and not think about it. Is it at all long enough to pull back? If not will a soft headband help just get it off your face and back a little? I used a headband and thin, soft hair rubber band to keep my hair back. On really gross days I put a cute hat on if I had to go out. It will get less greasy in time....I am over three years out and I still only wash 2x a week....and I workout! My hair never gets greasy......never. I use to wash it daily. Have faith......yes, you will obsess over your hair, but it is better to do that now than for months after while you wait for it to grow back. Hugs!0 -
HockeyCat - I'm with you living in this hell of grease, too. But we have hair. Mine is streaked with grey like you can't believe. Do the sort headband thing or tie a scarf. I think that's what I'm doing today. Someone mentioned baby powder but as a lifelong greasy haired person who has used dry shampoo since PSSSSTTTT in the 80s, it's not the best alternative - plus it has talc. I will tell you one better natural solution - corn starch mixed with a little cocoa powder (if you have dark hair). Just use a big fluffy make up brush to apply and stay away from the roots. I think PCC is worried about the roots so if you can just get your strands, you should be ok.
Another thing I know nurses used to use way back in the day was Seabreeze on patients who couldn't wash. That has a high alcohol content so probably not a good idea.
Rinsing seems to only make me feel greasier. I put a couple drops of apple cider vinegar in the water to try and pull some of the grease and chemo toxins out. I can only wash once a week and my dryness won't set in from chemo until probably week 4.
Oh, and did I mention that I broke out in tiny pimples all over my face the day after my last infusion? Yeah, I'm a teenage dream over here. I'm hanging in there because I know this too will pass. Then I will be back to my normal self with pretty skin and long luscious hair...and once I dye it, I'll be back to my former trophy wife status
(joking) Like I said to you and the other September starters - We got this. Stay with me. XXOO0 -
Hi Daniella- Just curious...Why are you washing only once a week?
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mdg - My hair is just long enough to pull back but it looks like bunny tail than pony tail. LOL. I need to get soft hairbands. That will help to hide my crazy bang and some gray hairs. Thanks for the tip! I washed my hair last night, put some hair oils to the end, blow dry with cold air (took forever!) cheated to use flat iron just a little (lowest temp, only on the end of my bang) I have a big meeting at work today and my friend's birthday part to go to this weekend. I didn't want to look too ugly and sick… It looks decent and already lifted up my sprit. I'll baby my hairs for the rest of the week. I promise!
DaniellaD - I haven't tried dry shampoo yet. I'll try corn starch + cocoa powder when it gets to greasy next time. Too bad I cannot use it on my scalp, that's where it get very greasy quickly. Sorry to hear about pimples. You are still trophy wife! You are going through weekly chemo with cold caps while you are taking care of your baby. Hang in there Sept. Sister! I'm with you.
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Keep the faith, cappers! Your hair will look pretty sad for a few months but once you are able to go back to your normal routine, you'll have a full head of hair to work with, and you can just move on…no waiting for months/years for your hair to grow back. There are ladies from my Jan 2013 chemo group that still haven't been able to get their hair back and would happily have our tangled grey locks if they could.
HockeyCat, glad to hear you are holding on and getting creative with styling. While I luckily didn't have any greys, I had to grow out highlights and although the ombre look is in these days, mine looked pretty sad, but I just didn't look in the mirror and told myself it looked great. (pictures I now see from that time show otherwise
) I used conditioning treatments (Sea Chi) just on the ends and DermOrganic volumizing spray then I dried it on cool (I agree, takes forever!) until just damp. Then I carefully put it in larger velcro rollers, sprayed again and let it dry all the way…the result was a lot more fullness and at least one good hair day when I needed it. The following days, I used a low barrette in the back so at least it looked decent for work. I thin using the flat iron just on the ends, carefully should be fine if you don't do it a lot. As yucky as you may feel your hair is now, I think you may regret giving up once all is said and done, but I don't think you'll regret continuing one this is all over and you still have your hair. Just my two cents Agreed the caps are COLD and a bit of a PITA, but I found after the first one, I could settle in, and the constant changing made a long day seem a bit quicker. I appreciated not having to focus on the seriousness of what I was going through, the caps were a good distraction.
As for the stares, every time I had to go to the restroom, people looked. I think they all figured I had some kind of brain tumor.
You've got this, girls!!!
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Hi Everyone, I would like to know if your insurance paid for the cold cap or did you pay out of pocket? I read they can be rented at Penguin Cold Cap at $580 a month?
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Saw your post...STILL waiting for any money back from BCBS. It has been 5 years since my treatment and my first attempts at reimbursement were denied. I finally sent a letter using the premise of a letter posted on here from a fellow Cold Capper. Spoke with someone last week and they said my claim was being "looked into." It is a lot to go through for what is rightfully mine. They would have paid for part of a wig, no problem.
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Barremom - since my treatment is weekly, I only can wash once a week.
I read somewhere that someone was using Giovanni tea tree shampoo. That's good for oily hair. I may try it bc the dermorganix is sort of creamy. I don't need that extra moisture right now.
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gotcha Daniella!
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Hi, Bubu.
I was charged $633.00 last month. I actually thought it was only going to be about $500.00, but apparently I was wrong.
Just an fyi-this is for 8 cold caps.
Hope this helps.
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Hi Joey - thanks for letting me know. Is it $633 for 8 cold caps? and you only needed it for a month? They advertised on website is "per month", i was confused. I just learned from another person here that there are options out there, so that's a bit comforting.
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Hi, Bubu :-)
The first month (7/21/14) cap rental along with the security deposit was $1,133.00.
Then, I was billed $633.00 on August 18th.
I will need them for another 2 months.
Plus having to buy 80 pounds of dry ice for each infusion does add up, but I still have
my hair, so well worth it to me!!!
P.S. I haven't tried submitting this to my insurance co, but I may try.
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Bubu - The time you will need caps depends on how long you will be having chemo. I had four sessions spaced three weeks apart so needed to have them for two and half months.
Some ladies have been able to share the rental cost with others also having chemo at the same time at their center. Penguin allows a discount for sharing.
I have only heard of one woman who was reimbursed by her insurance. She had exactly the same plan as mine, but my claim was denied. Now that I know that Ang7 has been trying for five years, I will give it another try, just for the hell of it. Maybe the more of us who try it will start making a difference. Insurance makes no sense to me anyway. I had an eye doctor claim that was denied several times, so finally I had to pay the bill. Then, eight months later, out of the blue, a check arrived to pay me back because the company changed its mind.
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Penguin does NOT allow you to share caps with others. You sign an agreement that states you are responsible and cannot share them. I'm not advising you not to, just keep it between yourselves.
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Actually, Penguin DOES allow sharing. There is a form it sends that has to be filled out. I have seen it.
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hope49 - you are right! I would regret if I gives up now. That 6-day fever weaken my body and mind... Now I mostly recovered from various side effects, I'm getting my positive groove back. I can do it! It's gonna get hard again once I start shedding (probably next week?) I'm so glad to have you BC sisters here who support each other and you ladies are the best.
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Hi All- UGH! Just when I was asking when shedding started for all the past cappers, BOOM day #16 I was hit was a major shed! No matter how much I'm told it's part of the process, I still can't help to feel discouraged! Every time I even lightly run my fingers through to lightly "comb" so many strands and strands keep coming and coming. This is only after one infusion-next one this Thursday 9/18- so concerned I won't have a hair left on my head.
Reassurance anyone??
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barremom.....I felt like that too...I assure you I ended with a full head if hair! We all understand how you feel! Caps will work!
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reassurance.....boy do i remember being there. I am coming up to 2 years from when all of this began for me. The ladies here all help each other through each step of the way. The capping and hair loss is different for us all but the feelings are shared. I lost mainly after #3 and 6 weeks PFC but all is well. Hang in there ladies. This too will pass.
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Barremom, none of us have experience with the Paxman system so it's hard to tell you what to expect. Even with Penguin Cold Caps, the shedding patterns vary widely among different women. Is there a Paxman rep who's helping you with the trial? They are probably your best source of information. Hang in there.
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