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Old 03-20-2007, 09:51 AM   #1
Joy
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went a little crazy

So after the test showed stable disease and it was decided to continue on Navelbine and herceptin for a few more weeks I had my hair done. I missed being in the salon a lot. I hadn't had it done in almost 2 years-pretty much cause I didn't have any. I went...PLATINUM with some chunks of DARK brown and it's pretty fun. I've never done anything that nutty before, but I figure it is time. I still have a few more months in my 30's and the 5th graders thought it was "cool". What more validation do I need?

I just hope that whatever decisions are necessary in the future that I get to keep it for a while. I know it is silly, but I feel better and healthier if I at least LOOK like a normal-ish person. It does a lot for my optimism-anyone else?

I'm wondering who would win the 'number of times been bald' contest? I have been 3 times.
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joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression

Last edited by Joy; 03-20-2007 at 09:52 AM.. Reason: spelling
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Old 03-20-2007, 10:05 AM   #2
Malena
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Good decision Joy to experiment new and crazy hair style!!!!!
I'll start doing something with my "new" hair (they are around 5 cm now), I would like to have them red!
Sorry, I'm a tenderfoot!! Just one time bald!
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Old 03-20-2007, 10:42 AM   #3
kareneg
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Smile

Your hair sounds really nice have fun with it! Well it looks like we are tied I have been bald three times myself, I am so glad your having fun with your hair enjoy!
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Love and Hope
Karen

IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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Old 03-20-2007, 10:44 AM   #4
Andi
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I think it is great you decided to do something "special" with your hair. Isn't funny how after we have been traveling down this road, we don't care as much about how things may look to others, but instead how they feel to us? At least I noticed that about myself and I feel it is a positive thing to come from this stupid disease. I am thinking about adding some highlights to my hair because it is just kind of a dull mousy color. Last year I had some natural highlights in it when it grew back and I liked how it looked. Anyway - more power to you and I hope things go well for you health-wise. I have only been bald once, for about 6 months.
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-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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Old 03-20-2007, 10:44 AM   #5
hutchibk
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HI Joy - I am on my third time bald, too... will be as long as I stay
on Taxol (w/Herc) which I hope is a long time, 'cause it's
working and keeping me stable. But it means I stay mostly bald
(I do have some kooky hair, like a 95 yr old man) - and NO brows
or lashes. I would give an arm to have eyelashes and eyebrows!

Good for you! Have fun with it, you deserve it! I am a hair-stylist -
albeit a bald one... and I hope I get another chance at having hair.
I want to do something fun next time around, too.
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Old 03-20-2007, 11:03 AM   #6
Grace
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First time out without a wig!

Joy--you're always an inspiration. I dyed my hair red on Sunday and today I visited the cancer clinic for the first time without a wig. My hair is about one inch in length and I tried spiking the hairs on top to give it some style but without great success. My oncologist (male) has a great hairdo (stands up in the front) but it's a bit longer than mine. I almost asked him how he does it but decided not to. Any thoughts are welcome! I am very ready not to wear my wig again.
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Old 03-20-2007, 12:05 PM   #7
Sandy H
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Thumbs up Awesome!

Well, I see you have become the new you! Congrats for stepping outside your comfort zone! Doesn't it make you feel great? I highlighted my hair just before going to Florida and with the sun and all it is really light and very wavy. Never had wavy hair in my life except from perms which I stopped having years ago. Since I returned from Florida everyone thinks it looks great and I had a perm! I have also lost my hair at least 3 times. When my oncologist saw me this time he just looked at me and said "what happened to your hair?" He was so busy I still don't know what he meant. I simply said, "oh this is my hair and not a wig". I think he thought my wigs look better! Anyway, enjoy the change. Everyone keeps telling me how much I have changed!! I don't let people bother me anymore if they don't like it they can look the other way. Now, how is that for being in control? I wear clothes I never would wear before, eat foods I never liked and oh I could write a book. My best friend who is a bc survivor and I spent one day and talked about how we had changed and we both were able to write down the exact same changes!!! Now, how cool is that? hugs, Sandy
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Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 03-20-2007, 08:11 PM   #8
michele u
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Joy, you should post a picture so we can see!! I colored my hair 3 different colors recently. It's a bold move but I thought---Go For it!!!!
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dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
35 rad tx
vaccine trial Seattle
NED
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Old 03-20-2007, 09:18 PM   #9
chrisy
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Hey Joy, good for you! Fun with hair - it is amazing how our small pleasures change! I agree, you should post a picture with your "new" hair. When minr first grew back I spiked it all up and thought that was really fun, I never would have had the nerve to do that before. But I sure know what you mean about hoping you get to keep it.

By the way, I missed your post with your test results, congratulations on your good news - and I'll keep sending good positive vibes, hoping things stay that way!

I love your posts and really look forward to hearing from you.

My question is, what are you going to do for an encore??????

Take care
Chris
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 03-20-2007, 09:21 PM   #10
Catherine
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Joy and other Hair Advocates (Renegades?)

I agree, once our hair comes back it is a reason to celebrate. Coloring my hair red and adding blonde streaks was my daring act. I knew from reading the posts that the color may or may not take. My stylist was ready to do her best. So the red was not as deep as we wanted, but it was fun. For a while it looked a little like Lucille Ball, then it went salmon colored. I have been having a lot of fun with it. I seriously might try purple next time. I have told my friends I do not want to be traditional anymore.

Hugs to all and especially you who have lost your hair more than once. WOW!!

Catherine
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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