Cold Caps Users Past and Present, to Save Hair
Comments
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Also qq for you guys - is it safe to comb or brush the hair or does that make it fall out faster? I've been avoiding brushing b/c of that and am just sort of running my fingers through the ends to pull out those stray hairs...
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Hi Robyn- welcome. Cold caps work very well with TC and it's not unusual that your oncologist didn't mention them. Don't be surprised if your doctor dismisses the idea at first. Do your research and be prepared to push back if necessary. Very few women have success getting insurance reimbursement but there is some financial assistance available for those who qualify. I suggest you check out the Penguin Cold Cap website and the cold cap thread for newbies that Dancetrance, a former cap user, recently put together with lots of good information, including links to cold cap studies (Thanks DT!). Look on the previous page for a post from Dancetrance where she provides the links.
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Hi ladies,
A couple of questions about the Nioxin shampoo that some people use post chemo - does it contain minoxidil? Or is there something else in it that makes it good to use for your hair, post capping? I'm 14 weeks pfc, seemed to have stopped shedding, but am still using the same shampoo I used during chemo (Kenra Clarifying Shampoo). Just wondering if I should be switching to something else at this point to encourage hair growth/promote the health of the hair I kept through capping.
Thanks!
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Milkchess,
I asked my dermatologist the same thing, and she said that was just a myth that regular washing or combing the hair would make it come out (unless you're yanking on it and generally being rough on it). She said that the hairs that appear to come out during washing/brushing are just loose hairs that have become caught in the other hair and the washing/combing just removes them.
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hi all, here is my info on getting my cold caps covered. I'm still working with the insurance company because they sent the check to my provider rather than to me but I got it covered using the following below. Good luck!
I have United Healthcare. The first time I called and asked I just said "do you cover cold caps?". I got the answer no. So I called back and went this route:
- I asked to speak to someone who manages "prior authorization" or "gap extension".
- In case they needed me to mail them the order, I made sure my order from the MO is for "cranial prosthesis" in case I had to submit it. Also, I asked for 4 orders so that I could submit the order with each billing in case I had to submit a separate one for each bill.
- IF you have to submit the order, make sure they don't send the payment to the MO (like they did with mine for the first 2). Even though I didn't tell them to do that on my claims form - they sent the check over to the hospital. The insurance company is working to get the money back to me since they messed up.
- Diagnosis code: 174.9
- HCPCS (procedure code): D5924
While I didn't get push back, I told them if they were willing to pay for wigs because of hair loss. This is about preventing hair loss caused by a chemotoxic agent that will cause undoubtedly cause hair loss and in taxotere's case, there is a 6%-8% of permanent hair loss. Also, my company was willing to pay for 2 wigs (probably more - except I didn't ask for more; the cost of 2 real hair wigs would be equivalent).
My insurance also required a Tax ID but after I told them the company is based in the UK and don't have one - they submitted it without it. I am also saving all my receipts from dry ice and other supplies to see if I can tax deduct it, even my parking fees. I will let my accountant determine if it is all deductible.
Lastly, I was super surprised by what my insurance pays for such as acupuncture and nutritionist consult. Sad part is I had to ask. In other words, we have to advocate and investigate for ourselves. I am sure many of us are already taking our health into our hands since we are all using cold caps and probably most were not told by their MO about this option in the first place.
I wish you best of luck on getting this covered whether it be for the whole thing or even a part of it.
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Wildflower, I used Nioxin and nothing epic happened either in terms of regrowth or anything negative. And I agree, re: washing/brushing (especially using the Tangle Teezer). I think the science part is the temperature of the scalp during/right after chemo. I think the rest is caution (personal opinion).
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milkchess and hopeismyname,
I am about 3 weeks post final chemo with TC x4 and used PCC. I had major shedding around days 18 through 28, mostly on the upper sides and back. I attribute this to how I sleep and the hot flashes I got mainly at night. I had less shedding between dose 2 and 3 and it picked up again right before dose #4.
I really didn't think I was going to have any hair left by the end especially since I have short hair to begin with. I thought often to just shave my head and not deal with the stress. My hair got so thin you can see my scalp through what was left on the sides of my head which really was demoralizing. But in hindsight, I am glad I stuck through with it. Now that I am done, I know the worst is behind me and I have less of a ways to go with getting my hair back to where it once was. I am already seeing new hair growth too!
I have about 60% of my hair after all is said and done. I have to use Toppik but recently bought a great hair topper to help cover the thin spots. The topper works great for me. No one can tell.
Hang in there! This group is a great support.
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Aj93-
Wow, that's great to hear. I totally feel that way. It's like shaving right now would offer relief now, but be more difficult in the long run. Or I keep with the caps, suffer now, and feel relieved later on. I feel like I've already lost about 20% and I'm only at day 18! Today I gave myself a slight undercut since I was losing so much above my ear already!
Also, thanks for the tips on insurance. I have UHC as well and they told me the same thing on the phone about not covering the caps. By "order", is that like a prescription slip? I received one of those but not sure if that's different.
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Hey wildflower
I use Nioxin to not sure if it contains minoxidil or not I can't say that it's been super good my hair doesn't look any thicker (just the opposite) I do have a lot of re-growth and my hair does appear to be growing rather quickly but thinking that is from the biotin and Hair, skin and nails vitamins I'm taking. Can I ask you a question? When you say you seemed to have stopped shedding do you mean that no hair comes out at all anymore or is it a amount that isn't excessive?
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Hi Aussiegirl,
I seem to be back to about my normal pre-chemo rate of shedding.Which in my case means 3 or 4 hairs in the comb if I comb it when dry, and maybe 10 hairs or less in the sink when I wash & comb out. So in that sense I guess I have stopped, but not completely, but since that's about what it used to be pre-chemo, I guess I'm back to normal? I think maybe my port removal surgery at 5 weeks pfc might have caused more shedding for a longer time as a result. I think Dancetrancer said she shed for 16 weeks, yikes.
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Yeah I will be 18 weeks this Thursday and when I comb my hair dry there is only 1-2 hairs coming out and when I wash there a a few more haven't counted them but definitely less than pre chemo so maybe I gave stopped to? Hoping it stops completely though.
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Aussiegirl,
Seems that's what "stopping" is going to be like for us...that was my norm before, so I guess it's as good as it's gonna get...I'm also back to washing every other day and blow drying on the lowest setting.
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That's good to know about the washing I'm trying for every 3rd day but I'm finding I really need to do it every 2nd day as that's what I've always done. Still too scared to use straightener (flat iron for my American friends😁) and hair dryer I also really need a colour but at the same time by not having one I can see how much it's growing by my dark roots😂😂
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Girl, if I didn't wash it at least every other day, it would look sooo nasty!
When is your husband saying it will be safe to try coloring?
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He hasn't said think he's too scared to give his expert opinion in case he f&@ks it up😂😂 myself I still feel my hair is too fragile to colour just yet I will prob wait the full 6 months although lots of women on this thread have coloured way earlier than 6 months.
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LOL! He's a wise man!
How are your eyebrows and eyelashes doing?
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They are doing nicely actually. I lost all my bottom lashes and my eyebrows about 6-7 weeks PFC but they grew right back in quickly and haven't had any problems with them since.......touch wood. How about you?
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Brows disappeared toward the end of chemo but have returned. Lost all my bottom eyelashes and nearly all the top ones too, about a month after chemo. I started using Latisse about 3 weeks pfc and they grew back very quickly, and thicker and longer than before. That stuff is expensive but it really works! They should make a version that you can apply to your head!
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Yes they should!! Well there's only 1 more month of 2015 (thank God!!) and next year can only go up this year has sucked BIG TIME!! Next year will bring us all good health, good times and LOTS of hair.
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aussiegirl: by "order", I meant a "prescription", but I really didn't need it. Good luck!
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aj93 - can I cut and paste what you wrote about your insurance approval process on the FAQ thread? Thanks!
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For those who finished the caps, did you guys experience bald patches (besides the hairline area). If I'm getting some, does that mean the caps aren't working? 😁
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Milkchess
I didn't experience bald patches but my part did widen and also at the crown of my head you could see scalp but it has filled in already I'm sure I have read in this thread (I've read the whole 493 pages) of people having bald spots but still feeling like their capping was a success hopefully they will comment for you. By using the caps your bald patches should start to re grow and fill in pretty quickly. Hang in there.
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I was doing great through the first two AC treatments, then started to shed a lot right after the third and all last week. I have lost about half my hair. I am kind of shocked. I was gently gathering it at the nape of my neck with a very soft scrunchie in order for it to look professional and neat for work, but I don't have enough hair to do that now. It just falls right through. Penguin thinks my hair "broke off" or something. They are encouraging me to keep trying and to lower the temperature of the caps. I have scraggly, straggly hair and five more chemo treatments. However, I did manage to have hair for the first 8 weeks. I will keep trying, I'd rather have some hair than be bald.
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Malonejen,
What did they mean by your hair "broke off"? I never heard that before. My hair was sort of damaged through over-processing prior to chemo, and I did notice some breakage while capping, but didn't know that could be a major factor for hair loss while capping.
There seems to be a point where most people have a big shed during or after chemo so maybe that's what you just went through. I was on another chemo regime, so I don't know much about AC - maybe some other AC cappers will be along shortly to give you some support.
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I'm not sure what is meant by "broke off" -- the woman at Penguin looked at the pic I sent her and said it looked like that. I am praying to have some hair left after the next AC. I have very fine, straight hair, and I am seeing my part balding and bald spots just underneath where I have hair, and there is very little left in the back.
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sending you a pm
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Malonejen
I totally relate to the scraggly, straggly hair my hair is like that now although I'm 18 weeks PFC. I have new hair coming in all over the place so I know it will get back to how it once was but for now I have to wear it back in a little clip when I go out so I don't feel self conscious. Keep using the caps you'll prob find that your new hair will come in quickly because of it. All the best.
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Well, I sent a few pics to my PCC rep and she thinks the caps are working for me even though I've lost maybe 60% already after one TC treatment. Also have two significant bald areas on the top back.
everything looks fine with a beanie on so I'm just going to keep going and hope for the best. Not giving up yet!! 0 -
Good luck Milkchess!!
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