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Old 09-19-2008, 06:11 AM   #1
Sheila
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Location: Morris, IL
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No Change / No MCC/DM1

Well for now I will continue with the Taxol...the trial for Traztusamab/DM1 phase II trial is slated to start in 3 weeks at Rush, but I do not qualify as I have not taken Tykerb, and have not taken Adriamycin...needless to say, they may try to alter the criteria, but according to Genentech, if they do that, it could take another 3-6 months to start the trial. There was no progression in the size of the node in a month , so it is "Stable" in a sense. If my chemo was changed right now, and a new one added, I would definately not qualify due to too many chemos....I am scheduled for a muga and new CT, trying to resolve the shortness of breath after treatments....it was bad last night but much improved today...just my red clown face look! Much love and thankyous to all of you for your continued and loving support of this long but fruitful jopurney!
There is one other place in Illinois doing a clinical trial, I will call to see if it is phase 1 or 2...it would make a big difference, the drive is far, but would be worth it.
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 09-19-2008, 06:32 AM   #2
Mary Anne in TX
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Tell them you're the bestest available warrior they could possibly get! They'd better snap you up while they can. If they wait too long, you'll be doing far too well to even enter the trial. Wishing you the very best, ma
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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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Old 09-19-2008, 07:58 AM   #3
WomanofSteel
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Yes, don't you just love that clown face. My daughter asked me if I had sunburn. Sorry you couldn't get into the trial, but you did say there was another a little farther away, so maybe you will have better luck with this one. Geez isn't it amazing what we go through. Too sick , not sick enough, too much treatment or too little it is crazy.
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dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 09-19-2008, 08:46 AM   #4
Gerri
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Shelia,

Well, good news that you are 'stable' but I know you really wanted to get in this trial. I can't imagine being on Taxol for so long. After just a few treatments I could no longer feel my feet and I still have mild neuropathy. Sorry to hear that you are having breathing issues - one thing after another! You are truly an amazing woman!

I sure hope you can wiggle your way into one of these trials soon - without progression!

All my best,
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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.
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Old 09-19-2008, 09:57 AM   #5
schoonder
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Sheila
Last June Genentech reached full enrollment with 3 week dosing, T-DM1, phase2 trial. This year they will choose whether to follow up on this effort with a phase3 evaluation.

If that decision is ‘go phase3’, then Genentech being Genentech, it shouldn’t take them long to see that trial get underway; clinicaltrials.gov registry will probably carry all particulars for participation.
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Old 09-19-2008, 12:00 PM   #6
chrisy
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Well, hurray for the "no change" but poop on the trial exclusion - particularly considering Dr. Slamon's view that adria need not ever be used!

Sheila I know you must be feeling a bit discouraged. But again, good if you are stable - that means you have time to continue studying the next options. Perhaps DM1 was not meant to be the drug for you at this time.

Have you considered changing out the Herceptin for tykerb, or just adding tykerb? Just a thought. That might make a difference without adding another "chemo" to your history.

Good luck my friend, I know as you go knocking on doors the right one will be opened for you.

Much love
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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Old 09-19-2008, 12:28 PM   #7
jones7676
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Sheila - I was happy to hear the word stable, but sorry to hear it is not gone. I know those darn Taxanes are hard - been there. I hope that you get on that trial. I understand about it being a bit of a drive, but it might be worth it. I hope most of all that things work out in a way that is best for you!
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Barb

10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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