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05-29-2008, 12:39 PM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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well...
guess who is starting the herceptin dm-1? Yes, it is me! Please tell me this is a good thing! I have to jump through all of the hoops and should qualify. I will join you fellow commuters as i will have to travel to Denver a lot. My alk phos is gradually rising and ALT, I think, is slightly elevated. The trial is set to close in June and my docs did not want me to miss the window of opportunity.
I feel overwhelmed and a little scared, but I know so many of you have done so well on it. I just want to be one of you all. Could really use some encouragement and reassurance. I have so much to live for these days, more than ever and have felt kind of down about it all.
Thanks
__________________
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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05-29-2008, 12:52 PM
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#2
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Joy,
Let me be the first to offer you heartfelt encouragement and support in this trial you will soon begin.
I'm so happy you were able to be a part of it and feel confident it will work wonders for you.
Asking God to give you His peace, strength and joy and thanking Him for all the blessings you've been given thus far.
Love to you Joy...
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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05-29-2008, 12:55 PM
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#3
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Senior Member
Join Date: May 2008
Posts: 62
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Joy and others,
Hey all you DM folks. Thought you were at Dana Farber.
I am in Denver and have two guest rooms, private downstairs with a bath. Not too far from Univ Hosp. Is this where you are headed?
I'm here if you need me. Feel free to PM.
Carla
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05-29-2008, 01:37 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Joy, I've been following your postings of late and although I have no advice I'm thrilled and excited for you begining this trial. Just to wish you luck and hope you do as well as other's on it...I'm sure you will!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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05-29-2008, 01:51 PM
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#5
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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I wish you all the best my dearest Joy, lots of positive thoughts going your way. I hope it will be just the ticket you have prayed for..
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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05-29-2008, 02:15 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Joy,
Best of luck to you as you begin this new trial and hopefully this is going to be successful for you.
I love reading about your life. You make me smile and bring JOY to me.
You so deserve a break!
Hugs ~ Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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05-29-2008, 02:27 PM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 476
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Joy,
The window of opportunity is wide open for you and I wish you the best.
Ann
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Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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05-29-2008, 02:49 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Cool!
Joy, I think this is great news! Is this the 3 week or the 1 week trial?
Either way, I hope you have some good books on tape or whatever now that you'll be joining the weekly DM1 day-trippers. They are very, well, anal (can I say that?) on this trial which is a good thing as the drug is so experimental. I'm glad they monitor everything so closely so they can get the dosage answers they need and keep us safe. Even though I had to get my last treatment pushed back 
Of course, you've been round the block enough to know that everyone responds differently with respect to side effects. I started to list all the ones I've had in gory detail, but then I remembered you wanted ENcouragement, not DIScouragement!
So, I'll just say it is more toxic than regular herceptin but not as bad as chemo. In terms we can all understand, on the spectrum starting with lemonade --->margarita--->tequila shots, it's sort of a slushy weak maggie.
I know you will do great on this trial!
__________________
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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05-29-2008, 02:57 PM
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#9
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Joy,
I always look for your posts....you are one of the most
interesting, adorable members....From what the trial
is presenting thus far it appears to be doing a great job.
I wish all the best for you as you begin your treatment.
Please keep us updated...and as far as encouragment,
I am sending you heaps of love and support.
Hugs,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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05-29-2008, 03:35 PM
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#10
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Sending bucket loads of love and hope for smooth sailing and fabulous results! ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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05-29-2008, 03:38 PM
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#11
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Good luck to ALL!!!!!!! This is great news for everyone. I know trials pay for a lot, but don't forget Angel Flights America and The American Cancer Society Hope Lodge. Free flights and lodging for patients and family.....
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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05-29-2008, 03:59 PM
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#12
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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As always, you're in my thoughts and prayers, Little Sis. Try not to be too worried. You'll do great! Love ya, Big Brother Bill
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05-29-2008, 04:58 PM
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#13
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Great news!!!
Hi Joy,
Welcome to the DM1 Herceptin club. I am sure you will love this drug. It has very little side effects with most people. However, expect your liver enzymes to rise. It is a normal side effect. By the way, chrisy, my treatment was also withheld today. Joy, I hope this treatment will put you into remission for a long time.
Best wishes,
Barbara H.
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05-29-2008, 06:09 PM
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#14
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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Best wishes Joy - I've been reading your posts and feel so inspired by your optimism and courage! I'll be praying this treatment works and that you'll have safe travels to and from Denver.
__________________
xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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05-29-2008, 06:35 PM
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#15
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Dear sweet Joy,
Yet another one of our amazing warriors! I sure hope you find this combo easy to tolerate and that it does the job! I just know that the happiness you are now feeling in your personal life will carry you through these tough times.
All my best,
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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05-29-2008, 07:26 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Joy,
I'm sure this is a "good thing" as Martha says. Hoping all goes well and your trips are not too hard on you.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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05-30-2008, 06:30 AM
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#17
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Joy,
This is indeed fantastic news. Best of luck to you with the trial. Please let us know how you are doing.
Hopeful
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