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Old 01-01-2009, 12:37 PM   #1
Joy
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Having hope for all in 2009

I wanted to start the new year by expressing my absolute pure love for all of you! This is a swelling from my heart that I feel quite often and felt that it should be shared. Please spend your New Year's Day doing what you enjoy and setting the year up right. In the face of so much of our unhappy situations I can't help but to think that if collectively we do this and cultivate good times and hopeful thoughts (little or grand) it can only help. I am thinking about and praying for all of us a lot today (like most days).

A quick update. Round two of E/C/H/xyzabc blah, blah, blah. SO far I am faring okay. This is so much better managed now as compared to 8 years ago on A/C blleeeechhhh. Hair loss for the 4th time caused some bathroom tears for a few days. Then it just got silly. For a day I looked like a skinny old troll doll, then like a creepy toy from "Toy Story", then like Ramona Quimby's doll Chevrolet (for those children's literature lovers), and now...a baby ostrich. I did not see that look ranked high in Glamour's new looks for 2009, but maybe I could start an haute couture trend.

I did get my hat with hair from "hatswithhair". This is my second one and I do like them. The cap is soft material with real hair in a choice of beautiful colors (mixable and blendable if desired). It is more comfortable than a wig, but you have to wear a hat always. I have swam in mine and in the past. This time though I went brunette with blonde highlights and it is long, but what the heck. I am also going to get a blonde wig in the near future. And then we will really give Luca's neighbors something to talk about-hee, hee, hee.

Anyway I do not know yet how effective this stuff is. I hope to call on Friday for the latest CMP's, CA 27.29 and hope that things are good, duh.

Anyway my very best to all of you and thank you for being there over the years I need you and we all need each other.
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with love and gratitude,
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
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Old 01-01-2009, 08:58 PM   #2
flynny
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Thanks for the good wishes. I pray that 2009 will bring you lots of good times and your "new cocktail" will treat you well.

Happy New Year!!
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-Sarah-

Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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Old 01-01-2009, 09:23 PM   #3
eric
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Joy,

Reading your note is a great way to kick off the new year. Thank you! Not only is it well written but I can feel the emotion behind your words. I guess that's because I feel the same way. I can't begin to express my admiration and gratitude for the people on this site, including you. I agree that positive words can only cotribute to helping in '09.
By the way, I'm glad to hear that your new relationship is going well.

Eric
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Old 01-02-2009, 07:52 AM   #4
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
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Wink

I raise my latte glass as I solute your friendship and the many wonderful qualities you endure that help me through some pretty hard times. Cheers to My Joy.

We all do need one another to aid us through this fight. What a pleasure is has been to get to know you and all the others in this family.

Love to all. May 2009 bring us that much closer to a cure. We ALL deserve it!!>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 01-02-2009, 04:11 PM   #5
Lori R
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Joy,

I've been thinking so much about you lately, so I am glad that you posted.

Your posts are always so upbeat...the hair (or lack of it) certainly is an emotional challenge. After my chemo rounds of taxotere, my hair has never come back. I still look like the troll with a fringe of hair around the sides. I too look at it occasionally and just cry. Then snap out of it and move on.

I hope you enjoyed the holiday with familly and friends.

So good to hear from you!!!

Lori
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2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 01-02-2009, 06:28 PM   #6
vickie h
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Dear Joy, I have been thinking of you over the holidays, so I was pleased to hear from you...it's always a treat. I am going to look up the hatswithhair site as I am on my 3rd loss of hair and looking like a little old man at the park, feeding the pigeons. I pray your new treatment will keep things at bay and that you will have Luca's love to keep you buoyed in these rough seas. I, too, am hoping for that next treatment as my mets are getting worse. You have always been an inspiration to me over these past few years and I want you to know how important you are to me. Happy New Year, sister, and thank you for the words of encouragement. I love you, vickie
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Love and Hugs, Vickie

Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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Old 01-02-2009, 07:15 PM   #7
Rich66
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The baby ostrich look is about to break. Hang in there
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Old 01-03-2009, 03:38 PM   #8
chrisy
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Joy,
Thank you for posting - I really miss you when you're "gone", then again I disappear from time to time myself. But it's different when it's YOU! Just when I'm thinking of going into hiding, you put something out there I just HAVE to respond to!

I have to say I love the descriptions of your hair devolution! Did you bypass the cindylou who look? I'm fashion challenged enough without having to keep up with your hair haute couture - I swear I saw myself on "what not to wear" recently.

But you sounded SO cute as each of those things... and I know how hard it is to laugh at that when you feel like crying. You're awesome, girl.

And I have been trying to get the new year started out right. Hubby has been hiking in the Grand Canyon the past few days, so I spent new years eve eating junk food and watching "dog the bounty hunter" (ring out the bad!) and the past 2 days, getting my head straight to face the new year.

My sister gave me a Rascal Flatts CD for Christmas which I've been listening to today; cranking up the song "STAND" which reminds me so much of you, and so many of our friends here...with apologies to the copyright holder, here's the chorus:

'Cause when push somes to shove
You taste what you're made of
You might bend 'til you break
'Cause it's all you can take
On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, then you STAND

That's you, dear one, and all the rest of us!

Much love and wishes for health and happiness in 2009!
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 01-03-2009, 04:40 PM   #9
ElaineM
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Wink Having Hope for all in 2009

Thank you for your wonderful post. I think "HOPE" has to be our theme for 2009.
Hope, health, peace and joy to all in 2009 !!
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 01-05-2009, 09:12 AM   #10
schoolteacher
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Joy,

Thank you for your inspiring post. I agree that Hope has to be our theme for 2009. Let us know about the results of your tests.

Amelia
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