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Old 04-12-2010, 02:01 PM   #1
mrsd
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update

well it wasn't the news I had hoped and prayer for.. but the spots on the liver have grown, lymph nodes larger, ?? spot on kidney just have to pick my stomach up and put it back where it belongs.... will see my onc tomorrow am and figure out what to do next....
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Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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Old 04-12-2010, 02:30 PM   #2
caya
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Re: update

Sorry to hear this, but I am sure your onc. will have a plan of attack. I am praying for you.

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 04-12-2010, 02:48 PM   #3
Bill
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Re: update

MrsD, my thoughts and prayers are with you and your doctors. It seems like there are still some weapons in the arsenal for you! You hang in there and please keep your head up. Love, Bill
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Old 04-12-2010, 03:15 PM   #4
Faith in Him
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Re: update

Progression is so hard to deal with. Would a lower dosage of Xeloda be possible since it worked so well? I know you had bad side effects so it might not be possible.

I'll be praying that the onc gives you just the right combo to knock out those mets.

Tonya
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 04-12-2010, 03:44 PM   #5
Pam P
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Re: update

Sorry to hear about the progression. It's so hard to have to switch gears again. I was wondering too if you could try xeloda at a reduced dose. Hang in through this regrouping of correct treatment to work for you. I hope you get started on your new combo with little side effects and great results.
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 04-12-2010, 03:52 PM   #6
mrsd
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Re: update

Thanks all... Tonya and Pam I do believe that will be plan B..?? not sure but I am at the point of using the biggest gun I can... if we do go with the Xeloda I am hoping I can participate in the clinical trial here using Tykerb.. remember I live in Canada and I think we are a few years behind you all in the US when it comes to approved drugs...
__________________
Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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Old 04-12-2010, 04:30 PM   #7
mmoons
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Re: update

Mrsd-

I want you to know that you are in my thoughts and prayers. I look forward to the post...that I know will be coming from you...that says your onc found the magic combo and you are back in NED land.

Feel the well wishes coming your way...

Hugs,
Maureen
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My loves

IDC & DCIS, HER2+++ Diagnosis: October 1, 2008
  • Tumor: 6.8 centimeters, never showed on mammograms
  • ER-/PR-
  • November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
  • Stage IIIc
  • Lapatinib Clinical Trial start: November, 2008
  • Surgery: May 5, 2009
  • Started Herceptin: May 19, 2009
  • Started Radiation (33 rounds): June 10, 2009
  • September 2009: Moved to Michigan to be closer to family
  • 12/09 - still on Herceptin until May 2010
  • August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
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Old 04-12-2010, 05:08 PM   #8
Emelie B
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Re: update

Please hold onto your hope. As you can see from my signature, I just finished 8 weeks of Taxol and Herceptin and I am now clear. Not an easy regime, but very doable.
Please know we are all thinking of you and your struggle with this relentless disease.
Stay strong,
Emelie
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Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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Old 04-12-2010, 05:25 PM   #9
chrisy
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Re: update

mrsd,
I agree, Xeloda might be a promising therapy if you can manage the side effects - I've heard some evidence that reducing the dosage does not impact the effectiveness. "Maximum tolerated dose" is not necessarily the optimum dose. If you can get this in combination with Tykerb that could be a good option - be sure to check into the trial and ask about the potential need for dose reduction on the Xeloda. Sometimes in trials they are very picky.

Anyway, sounds like there are some good options out there for you, do not lose heart.
Chris
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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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