Cold Caps Users Past and Present, to Save Hair
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Hello!
I have completed six chemo sessions and used Penguin Cold Caps and have managed to maintain most my hair thankfully
I was wondering if anybody has had any luck with insurance reimbursement. I am with Empire Blue Cross and have filed a claim for a cranial prosthesis and was told that that only covers wigs. The other issue was that because Penguin Cold Caps was a British company and didn't have a US address and tax ID they would not be able to cover it. Anybody have a similar experience and/or advice with this issue?
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Leesa, hope your hair continues to hold on
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LadyNY59~
Best of luck on reimbursement...
I have been reapplying to CareFirst BCBS for SIX YEARS!!!!!
They keep telling me I "need something else." I have gotten so much information for them from Penguin Cold Caps.
Well, if they think I will get tired of this and give up, they are wrong.
I will keep dancing the dance until I get some money back.
Ang
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thanks for your comments re my recent post. I'm 22 days post my first taxol treatment and all is good with my hair, no thinning, hair looks as it was , just totally unstyled these days
Im due for taxol 4 on Wednesday and seeing my oncologist on that day too.
With regards to hair loss elsewhere than your head, what did you all experience? Eyebrows, lashes, legs etc. does this fall out when you start losing on your head, or later?
Here it Australia,my private health fund pays for my cold caps which is great, so it's costing me nothing. Locally where i live, one of the public hospitals also provides free use of tppp
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Angiesgo glad to hear all is good so far. If you don't mind me asking what private health fund are you with? I'm in Perth.
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I'm with Medibank private and having my chemo via the private hospital system, I had 3 hospitals to chose from privately that did the paxman scalp cooling. The Royal women's hospital in Melbourne which is a public hospital also offers the scalp cooling but it's a bit harder to get a spot due to the demand.
Do any hospitals offer it in Perth
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I've finished my treatment I'm 6 months post final chemo but I didn't think I could claim back through private health I'm with Medibank Private to wonder if it's too late now?
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Very few women have been successful getting insurance reimbursement for cold caps. Below is a copy of a post by aj93 who was successful. Her original post can be found on a thread titled "cold cap FAQ's-for newbies". There's a lot of other really good cold capping info on that thread for any potential cappers who are lurking. Sorry, I don't know how to link it here.
Here's aj93's post:
hi all, here is my info on getting my cold caps covered. Many insurance companies don't cover it but I realized that I needed to speak directly to the department that managed prior authorizations or gap exceptions and not the representative from the customer service side of the company. 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/prescriptions 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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Ang7 - I'm sorry you've been going through that hell with them for so long but I guess if enough of us are pressuring them they'll understand how important this is. Keep fighting the good fight.
jc254 - that was very detailed thank you I'll try a similar approach and hopefully that works.
Much obliged ladies! Thanks again and I'll be sure to post about any updates/progress with the insurance company.
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The FAQ thread is here:
Cold Caps FAQ's - newbies - how to save your hair from chemo
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Leesa
I will be sending you positive thoughts for tomorrow. May things go smoothly again.
Kind regards
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Hi Ladies,
I am having my first chemo this Friday afternoon. I will be using cold caps - dry ice method. I am nervous about the timing of the caps as well as making sure we get them to cover all of my hair. I have very thick hair. Has anyone had difficulty putting the gold strap on? The Velcro that goes under my chin really hurts because it is directly touching my skin. Also, the chin strap plus the gold strap are so tight that I can barely swallow. If we loosen the strap, there is space around my temples. Any suggestions? Did anyone use any type of hair net or cover so that when you switch the caps, the Velcro doesn't get tangled in your hair? I am not sure what moleskin is, but did anyone use it? How do you apply it? Thanks for any suggestions.
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HI Jan, welcome!
I also originally had the chin strap so tight that I could barely swallow. It's ok to loosen it a bit. Did you order the gel bands? If so, the gel band gets pulled along the side of your head up past your temples and should help prevent any gaps in that area. Be warned though that hair thinning around the temples is pretty common.
Put something under the chin strap so it doesn't rub directly on your skin. You can buy moleskin at Target (Dr. Scholls makes it) or you can just use a thin washcloth or something similar. I didn't have any problems with hair getting tangled in the Velcro.
Good luck
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My hair got tangled in the velcro. We ended up realizing that if we only loosened a few of the straps, not all of them, we could slide the cap off like a helmet. That meant less velcro exposed to the hair, so less tangling!
I was told put the cap on very tight with the chin strap at first, then get get all of the other straps on tight, then loosen the chin strap and tilt the head back and forth - if the the cap doesn't slide, it is on good and tight - not necessary to have the chin trap super tight then for the rest of the 30 minutes. I used a bandana over the chin strap to keep that cold thing off of me...brrrr!!!! any type of cloth/barrier will work - some cut a hole in a sock and slide it over the strap. Whatever works for you.
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Makingway, there's a page on Facebook about the taxotere lawsuit.
For you Aussie ladies, there's an excellent company in your country called Moo Goo that makes great organic products. Their deodorant is the only one without aluminum that works for me. Their products are available in the US now, as well.
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Leslienva - thanks for the Moo Goo recommendation. I also believe they have good skin care products that are excellent to be used if your having radiation, helps with keeping the skin on the breast moisturised etc
I had my 4th taxol yesterday (two thirds to go!!!), so im now Day 23 from my 1st treatment and my hair is as normal, no thinning at all. I saw my oncologist yesterday and he was so happy with the outcome so far, he has highly encouraged most of his patients on certain chemos to give the scalp cooling a go as he is a firm believer. He did say that the weekly Taxol but be slow in showing hair loss so im not totally celebrating yet but he is impressed to see me yesterday and I looked just like I did when I first met him prior to treatment began.
jan - best of luck with your 1st treatment and cold caps, I found the first 15 minutes to be the hardest, after that your head goes numb and you get used to it.
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3rd AC checked off yesterday. That only leaves 1 more of them before switching to taxol.
My hair is still shedding. Will it continue to shed like this throughout all my treatments? (This wouldn't leave much at the current rate.) Or will it gradually quit shedding & what is left is what I'll get to keep?
Capping process went well, but they were much harder to tolerate. I'm guessing the thinner hair is the reason here. I put gauze on the thinnest spot on the crown of my head, but it didn't help much.any suggestions
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leesa, you and I had exactly same stats, TNBC stage 2B!! I did cold cap through chemo. 4 AC and taxol, I did cold cap. The shedding will slow down after AC especially if you do weekly taxol. I finished chemo with 70% of my hair and I started with really thin Asian hair. You can private msg me with any question Lucy
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hi Lessa. We are on the same schedule and I have the same questions re the amount of hair loss I can expect while doing 12 taxol. Finished with 3 of AC and have retained about 40% pretty thin on top and I've purchased Toppix to fill in the bare spots. Haven't tried it yet, will do it this weekend to practice before I use it to go to work. Hopefully someone can let us know what to expect with 12 taxol cycles. Thanks
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Leesa & Mikie, I had the same regimen as you both.....After my fourth AC, I would estimate that I had lost about 20-25% of my hair. Once on the Taxol, I lost another 10% over the course of 12 weeks and then once I was finished, I lost another 5 - 10%. Overall, I would say that I lost about 35-40% of my hair (I had very thick hair to begin with). I did notice, though, new growth coming in on my thin areas while on the Taxol. I was able to use Toppix to fill in thin areas. During the height of my shedding which was towards the end of chemo, I had a week where I lost 300+ hairs daily - yes, I counted. But once that subsided, shedding just improved. Hope this helps. Hang in there!
Angie
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Hi Angie,
Can you use Toppik while still having Chemo?
I notice it has a comb that comes with it, that looks like it can pull hair out. I use a comb that is more like a pik.
Hair around temple, where my bangs are, is greatly thinned. I have long hair which I used to wear in a bun, but now wear clipped at the nape of neck, and my hair tends to part, and the parts are very wide. A friend told me about Toppik.
I would be be glad to hear any advice or experience anyone has had with it.
For curling my now very thin and getting longer bangs I use Goodys pillow soft curlers which are great, and I carry them around for a pick me up when, during the work day, my bangs start to droop. I am putting off having bangs trimmed, fearful the hair stylist will pull on them and more hair will come out.
Hugs to all cold cappers, and cheer leaders,
Windward
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Windward, Yes you can use Toppik while doing chemo. I was like you and wore my long hair pulled back at the nape of my neck a lot & my hair tended to make a widening part as well. I just sprinkled Toppik in my part line and used my fingers instead of a comb to work it in. It really helps!
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You can also use one of those large soft makeup brushes (like for blush) to put the toppik on.
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Hi Leslienva and Angiel,
Thanks so much for the great advice and suggestions. Off to order Toppik and play beauty parlor, and collect this mornings pile of shedded hair.
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I finished the last of my four rounds of Taxotere three weeks ago. I'm officially declaring my Penguin Cold Cap experience a huge success! I lost some hair behind my ears and at my temples, but kept probably 95% of my hair! It was WELL worth the cost and agony of it all!
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Sara - I would agree! You look marvelous! Congrats!
Please consider sharing your success story here, where I am gathering them together on a thread for newbies contemplating cold caps:
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I'll be starting my cold cap adventure this Thursday...wish me luck!!
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Hello ladies! Thanks for these great tips and success stories. I started my cold cap process 3 weeks ago with my first round of Taxotere/Herceptin/Perjeta. I am on Day 20 and will have my second treatment this Wednesday. First of all, the cold caps are not that bad! I'm using Penguin Cold Caps, and my wonderful mom is helping me. I didn't really have a problem with them. I think the cold hair wash is worse than wearing the caps. I have one question. Today is Day 20 and I haven't lost ANY hair ANYWHERE. I thought it usually happened around Day 14. Any ideas? Is it different with Taxotere only? But I thought Taxotere was one of the worst ones? Thanks!
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Hi JCS28, It sounds like we are on the same cycle, timing wise. I had my first round of Taxotere 3 weeks ago, but I'm using Paxman for cold capping. I start round 2 (out of 6) tomorrow. Linda, from Cold Comfort Canada that rents out the device, mentioned that they apparently have great success with Taxotere. So I wonder....and hope that I will keep my hair to the very end. The only shedding I'm visibly noticing is from the nether region. There has been some shedding on my head, but I've made it to round 2.
Crossing fingers that we keep our hairs!!!
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