Just found out triple neg - help pls. |
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Nancy 
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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 Posted: Mar 21 2009 at 11:58am |
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hey gals,
We also have a member on the site who will send all of you a beautiful head scarf or wrap....free. The women who have gotten them say they are georgeous. Here is the link and the toll free number.
Hugs,
Nancy
888-884-3653 Edited by Nancy - Mar 21 2009 at 3:22pm |
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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LRM216
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Joined: Mar 18 2009 Location: Marietta, GA Status: Offline Points: 1196 |
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Posted: Mar 21 2009 at 1:16pm |
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Once again, Pam and Nancy - much thanks for the new info re head coverings.
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Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
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Luv2sing
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Joined: Feb 19 2009 Location: United States Status: Offline Points: 108 |
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Posted: Mar 21 2009 at 1:56pm |
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Hi Nancy, Tried the link but it doesn't seem to be active. It says the domain is for sale.
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Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Mar 21 2009 at 3:16pm |
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Luv,
I will email Laurie and get back to you.
Nancy
try the link now. It came up for me and click to the right of where it says good wishes program and TNBC.....free headscarf for women with breast cancer. I did email her. But the link did work for me. Edited by Nancy - Mar 21 2009 at 3:27pm |
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Luv2sing
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Joined: Feb 19 2009 Location: United States Status: Offline Points: 108 |
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Posted: Mar 22 2009 at 4:27am |
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Thanks! That is not the site I saw when I went the first time!
The scarves are beautiful!!!
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Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Mar 22 2009 at 6:33am |
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Luv,
It was not you it was the site. It came up domain for sale when I tried it also. I got an email back from Laurie, deleted the first link, and put it in again. Sorry for the frustration. You gals do not need that. Many times when a link sits inactive it will not come up at all.
Hugs.....hope you have a great day...
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Luv2sing
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Joined: Feb 19 2009 Location: United States Status: Offline Points: 108 |
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Posted: Mar 22 2009 at 3:27pm |
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Hey Nancy,
I emailed her and she actually responded shortly after (I'm impressed) receiving my email. Here's the funny part ... apparently she went to my myspace page ... on the page is a link to a friend of mine named Valerie Joseph and thought I was Valerie
 . Valerie was diagnosed in 2005 with BC and later found out she was TN. As the years went by it became financially challenging, so some of her friends set up a website to advertise an auction they were planning for her and to accept donations via the site.
I placed the link on my myspace and blackplanet pages to help out. FOUR MONTHs LATER, I was diagnosed with TNBC!!!
 She was just as shocked as I was and came down (she's in NC) to see me, talk to me and share her wisdom. This is also my friend I previously mentioned who just got back the good report from PET Scan last week. I responded and explained who I was and who Valerie was, but I just found it so funny!!
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Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Mar 22 2009 at 3:43pm |
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Luv,
Laurie has been so great in responding to all the women here on the site. That was quite a mix-up with you and your friend.
You should have your friend Valerie get in touch with Laurie also, and tell Valerie that I sad WHOOPPEEE !!!!!!!! for the great report on the PET scan. Did you pick out a scarf? Which one? Laurie wasn't on the site when Lori was dx, and I have not seen a picture of any of the gals with theirs. Some day we will have all your photos to look at when we write to you. Of course I have gone to your webpage and I saw your picture and that of your family.
Let me know when you get the scarf.
 Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Luv2sing
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Joined: Feb 19 2009 Location: United States Status: Offline Points: 108 |
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Posted: Mar 22 2009 at 7:01pm |
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Nancy, When Val came she brought me two head scarves, but the material is more for the cooler months. The one I picked on the site is called 'samba', I love the colors. She prefers to wear wigs cause she always wanted long hair . If you were on my site her picture is the b/w with her and her son mentioning her site. Hope you liked the pictures. Did you go thru the photo albums? One of them is pictures of me going thru my treatments and stuff called 'My Triple Negative Journey'. My family has a bad hx of cancer. My father had esophogeal cancer, my mom intestinal cancer, my oldest brother leukemia and other brother adrenal cancer which eventually spread throughout his entire body (that's his memory box on my site). They all succumbed to their cancers and my mother and two brothers died before reaching the age of 50, my father reached 54. I'll be 46 on April 20th and we've already claimed the victory that I will see MANY MORE BIRTHDAYS!!!
Once I get the scarf I'll take a pic and send it to you.
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Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Mar 22 2009 at 7:28pm |
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Luv,
I did go through the album but will do so again. I got on your site when you first joined, but apprently you keep up dating it. I did not realize that you have lost so many dear loved ones. My heart goes out to you sweetie, and they just have to find a cure. You will see many more birthdays Luv, and I know you are having a bad time with this chemo, but you will get through this...and we will help you all the way.
Your family story is just like Pam's. She has lost her entire family to cancer. Her sister was just dx with leukemia, the only remaining family, and the medication will cost her $800.00 a month...$800.00 they do not have.
Luv, have they tested you for the BRCA gene mutation? I cannot remember if you mentioned that. Seeing that both of your parents had cancer there is a distint possibility that the BRCA gene mutation is there. Please ask for the test. This affects not only you but your children as well.
I would love to see the picture with the scarf and I bet you will look beautiful in it. I have to check out the scarves and see which one Laurie is going to send you. They do all look beautiful. By the way...Lori will be 47 on April 21st. You are just one year younger than her.
Much love and many hugs,
Nancy Edited by Nancy - Mar 22 2009 at 7:46pm |
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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outnumbered
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Joined: Feb 02 2009 Location: New Jersey Status: Offline Points: 525 |
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Posted: Mar 23 2009 at 6:27am |
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Pam mentioned tlcdirect (on pg 4 of this thread). I was wondering, has anyone gotten a wig from them? I am looking at a monofilament but was concerned about the quality of the synthetic hair. I have seen and felt wigs from other manufacturers, but I do not know whose these are other than their own. They are pretty inexpensive.
Thanks Edited by outnumbered - Mar 23 2009 at 6:28am |
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
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Jackie
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Joined: Oct 14 2007 Location: United States Status: Offline Points: 36 |
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Posted: Mar 23 2009 at 6:36am |
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Outnumbered,
I don't know about monofilament, I do know that I wore a synthetic wig for about 8 or 9 months. I bought synthetic because it did not require me to dry and set and "fix" the hair like wigs with human hair. I did spend extra money for a hand-tied wig that was lighter in weight, not hot and easy to wash and dry. I just swished it in wig shampoo, rinsed it and let it soak for 5 minutes in wig conditioner. Then put it on a plastic wig holder to dry. In a couple of hours it would be dry. Then you shake it out and comb or brush it a little and it is good to go. I have naturally platinum looking blonde hair and they were able to match it and order the wig. I was surprised that it was a "Raquel Welsh" wig as I had assumed that would be a lesser quality. Everyone thought it was my real hair unless of course they knew.
I hated in a way to stop wearing it as it was so easy in the mornings when I was dressing for work or other appointments.
Good luck on your search. I went to a local wig gallery (Angel Hair Wigs) that was owned by a former nurse who cared for cancer patients. She recommend this type of wig.
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outnumbered
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Joined: Feb 02 2009 Location: New Jersey Status: Offline Points: 525 |
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Posted: Mar 23 2009 at 6:51am |
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Thanks Jackie. Monofilament is synthetic hand tied but the front is tied to a lace like thing that when you part the wig, scalp shows just like your natural part. I have liked some of the styles of the Raquel Welsh wigs I have seen online. I am glad to hear that you liked the way it felt. That helps me. I like a style that is at the TLC website but they do not list who makes the wig. I have also seen several from Renee of Paris I like and I have felt them and they feel pretty nice also. I am just hesitant to order online without touching it first, but I do not like anything my local shops have.
Interesting story. I went to a place that is specific to BC selling wigs and prostesis, hats, bathing suits, etc. It was not affliliated with a hospital. They quoted me a price of $695 for a wig that was list on the web @ $300. You could even get it cheaper than $300 on sale. When I questioned them, they said the price was for personlaized fitting and trimming/styling. I have never had a $395 haircut before, have you? I reported them to ACS. How dare they take advantage of us like that!
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Mar 23 2009 at 7:30am |
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Sara, If you find a local place for wigs, let me know. I went to one place in Trenton and was gouged. This time, I have a prescription for a cranial prosthesis, so insurance will pay, but I want to get something that looks more natural than the wig I got last time.
Hugs,
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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outnumbered
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Joined: Feb 02 2009 Location: New Jersey Status: Offline Points: 525 |
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Posted: Mar 23 2009 at 7:40am |
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Caryn
There is a guy in Hamilton I am checking out. A friend of mine went there and is quite happy. I will let you know if I get there. I am emailing him today to set something up. I have also been to a wig shop in Somerville, small selection, and a boutique at Steeplehase Cancer Center in Somerville, also a small selection.
The place I went to that gouged me was in East Brunswick. Thank goodness I googled the wig to check it out before hand. I am not sure if they mark everyone up, or if they only marked me up since my insurance covers $500. Since my insurance covers that much, why would I want to blow it all at once. Maybe I will get a hair/hat thing, or a second stye. There is special place you know where for people/business like that who take advantage.
How you feeling?
Hugs,
Sara
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
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Jackie
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Joined: Oct 14 2007 Location: United States Status: Offline Points: 36 |
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Posted: Mar 23 2009 at 7:54am |
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Hi Outnumbered
We have four really good wig shops in the Raleigh and Cary area. I went to a few. Angel Hair is not affiliated with a hospital. The owner ordered mine for me to match my hair. Maybe the local place could order as well. My wig was supposed to be $295, but she discounted it for me and after I bought shampoo, a wig brush, and wig hairspray, with tax it was $283. It was well worth it for me as I look REALLY bad in hats and scarfs!
Where are you located?
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outnumbered
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Joined: Feb 02 2009 Location: New Jersey Status: Offline Points: 525 |
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Posted: Mar 23 2009 at 7:57am |
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I am in NJ I have been to a few places, I think I am just not easy to please...
Edited by outnumbered - Mar 23 2009 at 7:57am |
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
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Jackie
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Posted: Mar 23 2009 at 8:05am |
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Yes, I was hard to please as well..thus the special order.
My insurance did not cover it even with a prescription from my oncologist. Even my cancer policy did not cover it.
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Mar 23 2009 at 8:25am |
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Well Sara hold your ground and make sure you are happy with what you decide to buy. You will be wearing this for awhile so you want to be happy with your product.
I have not purchased a wig from tlc but have bought other products and if I recall their return procedure is easy enough. But I do underestand that buying and returning can be stressy and a nuisance.
My daughter wore a wig that she was very happy with, it had a natural part and did look very real. I do not know what kind of wig it was though.
I feel like the shops who specialize in items for those of us who will have hair loss, surgeries, special clothing do tend to overprice. I have wondered if it has to do with insurance companies in part and the arrangements they make between the two of them.
I haven't purchased wigs but have bought the prosthetics/bras and found them, the swimsuits that I glance at to be very high! You can look at these items online as you have the wigs and see the prices and some are terrible. Most people going thru a major illness do not have that kind of money themselves to spend on wigs, prosthetics/bras, clothing etc.
It's a good thing insurance helps on this type of thing but if one wants to shop on their own for extra things most of these items are out of range for the casual shopper.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Jackie
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Posted: Mar 23 2009 at 8:44am |
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Sara, Sorry I didn't see your name before! My daughter is Sara without the "h" as well!
The Raquel Welch wig I bought had the natural part. The store owner told me that the hand-tied wigs most often do have the thin mesh that allows your scalp to show through and therefore give you that natural look.
Hope you find what you like.
Jackie
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