Has anyone made a wig from their own hair?

Lisey

I love my hair.. it's kind of my signature thing. I didn't mind seeing my breasts leave, but I'm not thrilled about losing my hair and having it never come back. I've found a website that says it can make a wig for about $2500 out of your own hair and make it look very natural. Has anyone done this and how did it turn out? One last thing;.. this is my hair, so I'm not even sure you can make a wig out of my hair... thoughts?

Wildflower2015

Lisey, you have such beautiful hair! Instead of having a wig made, have you thought about cold capping to try to save your hair and not go bald during chemo? A number of us, including myself, cold capped successfully during chemo. There are several threads on these boards that are devoted to cold capping, capping success stories, etc.

Good luck with your treatment☺

Lisey

Wildflower, thank you... it's like the only thing about me that feels unique - and it covers my lack of a chin and huge ears! : ) 

I'm a newbie to all of this... only a month ago I was just a happy 40 year old planning vacations and taking  pottery classes... now I'm head first into this evolution into turning into Golum. 

I've seriously been waivering between the idea of cold capping and this wig idea.  My concern is that from what I'm understanding cold caps aren't typically successful, - I'm also terrified of freezing my brain and any issues with the cold. Also if I am to be on Tamoxifen/AI for over 10 years, my hair will end up thinning and losing it's curl anyway.  I so wish I had a crystal ball to know the right choice.  I hate the idea that vanity is keeping me up at nights about this, but out of everything I like about myself, my hair is it...  If I did shave it off - can they make a wig that would keep it's red color and shape - or is that an exercise in futililty?

ChiSandy

Lisey, have you gotten OncotypeDX results yet? With a stage IA Grade 2 Luminal A (ER+/PR+/HER2-) tumor, chemo is not necessarily a given, even at only 40--especially if your ODX score is 17 or lower.

Cold capping will not freeze your brain--but it may hurt like hell if you're not very cold-tolerant and it is a huge PITA (not to mention expensive). Not all chemo facilities are set up to do it, so you might have to BYO equipment. With cold capping, average hair retention is 50-75%, but if you have thick hair to begin with any loss probably wouldn't be noticeable. And your MO needs to be onboard with it--not all are.

Lisey

I'm betting I'm not Luminal A,  My PR+ is only 5%, and unfortunately this site doesn't allow us to state that when we say +/-.  I'll jump for joy if I'm A, but odds are I'm Luminal B - I find out my Oncotype Dx and my Ki67 score next Tuesday. 

ChiSandy

Good luck, Lisey! Fingers crossed!

Lisey

Thanks Sandy, I'll be posting an update on the whole Luminal B thing on that thread when/if I find out what is the deal.  Not a club I wish to be in but proud to have good sisters all around in these forums.

exbrnxgrl

Lisey,

I can't give you any feedback on a wig, but wanted to let you know that I have been on sn AI for almost 5 years snd have a very full head of curly hair. No loss of my loopy curls and, perhaps, a bit of thinning , but I am almost 60, so aging probably plays a role in that. Best wishes

Mom4four

My sister had her hair made into a wig in Seattle, the man did it all in one day that was in 2007, I will ask her for his name if you want.

Why2015

Your hair is beautiful and it will most likely grow back!

There are many synthetic wigs you can buy which will look natural for about a fifth of the cost.

Most people I've talked to who have lost their hair due to chemo have used synthetic wigs. I'm using one and I get compliments on it all the time. I can't say that any wig is comfortable to wear especially in the summer.

You might check into having some fittings at a local hospital that may have a wig shop. Human hair wigs a sold as well. Best of luck to you and rapid healing

Wildflower2015

Lisey,

Before you decide that capping doesn't work, please look at the following threads:

Cold Cap Users Past and Present: https://community.breastcancer.org/forum/6/topics/...

Cold Capping Success Stories with Photos: https://community.breastcancer.org/forum/6/topics/...

Cold Cap Newbies: https://community.breastcancer.org/forum/6/topics/...

I am 10 months out from chemo and I can tell you that in the last year there have been a number of women on these threads who capped successfully. Yes, it didn't work for a few (some were on a harsher chemo regime), but most of the ladies I remember did have success. It may seem like an overwhelming amount of information and a steep learning curve, but every one of us learned to do it! It was so worth it to me - keeping my hair was the one bright spot in the whole cancer crappalooza.

These are the reasons I decided to go for it:

1. Risk of permanent hair loss if you are given the chemo drug taxotere - it's hard to figure out exactly, but the percentage of women who suffer permanent hair loss is somewhere between 6-8%, and I have heard even as high as 10%.

2. If I lost my hair and it did grow back, there was no guarantee that my hair would return the same as before regarding texture, color, thickness, etc.

3. I just plain hated the idea of being bald (vanity!!) and knowing it could take up to 2 years to get my hair back to anything resembling normal

In your case, you might also want to think about these things:

1. Capping Cost - there is a financial assistance program that can help save you money if you rent the Penguin caps. Otherwise you can buy the Elastogel caps which are quite a bit cheaper.

2. Wig cost - I don't know what it costs to make a wig, but either way, you are spending money on the very same hair. It's up to you whether you want to spend it on hair that is still attached to your head :-)

Oh yeah, and the cold was tolerable - it only hurt for the first 5 minutes or so, and then my head stayed pretty numb throughout the rest of the treatment.

I hope no one thinks I am pressuring you, but girl, you have an amazing head of hair and if it was mine I'd be doing everything I could to hang onto it!

Lisey

Wildflower, following your links I'm now again looking into cold capping. I'm almost to the point of insisting chemo if my OC says no this coming tuesday as I'm reading more and more on the brand new studies about how Luminal B tumors are really unaffected by estrogen therapy. (if anyone is interested there is a luminal a vs/ b thread I started that some other wonderful women have been helping to post studies and it's getting real over there)

in any case, cost to me is not a consideration in my health - so what would be the best quality cold capping company with the best results you'd all suggest?

AmyQ

Lisey,

I purchased a human hair wig and had my own hair woven in to provide a sense of normalcy. In the end I never used it because Penguin Cold Caps worked very well. Given that I have a very thick head of hair, I estimate I lost 20 to 30% of it. Not noticible at all.

There's a new system out there much less trouble than PCC called Digi Caps or something like it. No changing caps when they warm up, a compressor much like a freezer keeps the cap at a constant temperature and attaches by a hose to the cap. If that were available when I was going through chemo, I would have done it in a heartbeat.

Good luck to you.

Amy

exbrnxgrl

Dignicap is a Swedish company. Their product was FDA approved sometime in the past year. Here is a link to facilities that offer them:

https://www.dignicap.com/availability/

Lisey

Well that's a bummer. I'm in Denver, with Kaiser. No availability for me for the Dignacap. I'll keep looking, any other companies you'd recommend?

AmyQ

Penguin Cold Caps are the ones I used - they worked but are labor intensive keeping them cold, changing out every 30 minutes, storing them at a certain temp etc. I wanted to add that while my oncologist did not recommend them she did not prevent me from using them. What's interesting is her facility had a freezer used specifically for Cold Caps and hers was one of the very few in our area so why she had the freezer but advised against them, I'll never know.

Amy

Wildflower2015

Lisey,

Regarding cold cap choices:

The Dignicap system is very new in the U.S., as it was just approved by the FDA a few months ago. I have no experience with them, and don't recall anyone on these boards using them either. So I can't really speak for Dignicaps one way or the other

Since you asked my opinion, if the cost isn't an issue, I'd go with Penguin. There seems to be consistently more overall success with Penguin users vs the elastogel caps. Just to clarify, if you're not using Penguin's patented caps, you will be getting elastogel caps, regardless of the company (such as Arctic Cold Caps) you choose, or if you buy them online yourself. There are only 2 kinds of caps available - Penguin and the elastogels.The Penguin caps are designed to lay flat while freezing, as opposed to the elastogel caps, which are more bowl shaped. The bowl shape means you have to pay more attention to freezing the inside of the cap, since it won't completely flatten out like the Penguin. Some people put additional dry ice into the inside, not sure exactly how they do it. I don't know, it sounded like a pain in the butt to me :-P In contrast, the Penguins have multiple velcro adjustment points so you can take the flat, frozen cap and tighten it on your head for the best fit. The elastogel caps use velcro straps, but because of the way the caps are molded (kind of like a swim cap) you may have more trouble with spaces between the cap and scalp if the caps don't fit the shape of your head too well. At least that is my understanding, if I'm incorrect, I guess the elastogel ladies can provide better feedback :-)

For ladies with extra thick hair (that's you!) Penguin also can provide additional gel straps for extra cooling. I didn't have to use any because my hair is baby fine. I suggest you view the Penguin videos, and maybe give the rep a call.

Regarding the luminal B issue - our stats are pretty identical regarding the ER+/PR- , so I'm guessing we'll see each other on that thread, too.

cally-2

My hair looked similar to yours. I sent my long hair to a place in Florida called ChemoDiva.com and had it made into a hair piece. Your hair needs to be cut before starting chemo. I wear a hat or some type of head piece with it. It cost around $300.00. I like having my own hair.

SpecialK

I did the same as cally - www.hatswithhair.com can also access the site. The piece I had made was called an underhair. You do have to wear a hat, I wore fedoras mostly, but it is far more comfortable than a wig because the top is soft, and much cooler. I had long straight hair and my hairdresser cut off ponytails that they used to make the hairpiece. I live in Tampa where the company is based and I had the opportunity to meet the owner - she is amazing. The cost was about the same as my wig - which was a Raquel Welch lace front - very well made, and many insurance companies will cover partial cost with a prescription from your oncologist for a "cranial prosthesis" and the receipt.

debiann

I was given a wig by my cancer center. Nothing fancy, but cute. I wore it ONE time. I felt so crappy during chemo, that last thing I cared about was my sweaty, bald head. The wig only made me feel worse. I stuck with hats or scarves. The bald thing was much less traumatic than I thought it would be. My hair grew back quickly. I stopped wearing scarves two months after my last chemo. I enjoyed the edgy, spiked look when it was first growing in. The chemo curls, I must admit, were challenging. But even after 2 years of AI's all is back to normal in the hair department. Same thickness and texture as before.

I love hats with hair idea. I think that type of hairpiece would be a lot more comfortable than a wig plus much less expensive.

Good luck to you. You do have beautiful hair, I can understand your concerns.

farmerjo

Lisey! Crazy to see you here, too! Your hair is beautiful! Mine is long and thick, as well.

I am trying to locate a good company to create a full wig of my hair.

My MO said no to cold caps.

Lisey

FARMER JO!!! Right?!! my MO SAID yes to cold caps at least over the phone. Have you looked at the studies? So many studies show no issues with scalp mets. Did the MO say why?

farmerjo

They have issues with dry ice...even though I would bring it contained in a cooler.

They are a reputable facility, northern Baltimore suburbs.

Lisey

well.. I'm going to have to ask my Onc on tuesday about that issue as well. Cold caps will be a must for me, they seemed to be fine with them over the phone argh....