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06-02-2007, 04:58 AM
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#1
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Shelia,
I am so sorry to hear Xeloda has stopped working. This is such a hard time for you. You and your friend are in my prayers. It seems many on the board are struggling right now.
I know you will continue to research and learn what treatment and schedule is best for you. You have been such a resource for so many.
My onc said the same thing about Tykerb. Hoping with ASCO going on right now we will all gain new knowledge from the experts. Do you know if anyone from the oncology department is at ASCO? I forgot to ask the last time I was in.
Consider yourself hugged dear friend.
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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06-02-2007, 05:38 AM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Donna
I believe Dr. Cobleigh will be there, she was at San Antonio. And Dr. Usha will probably be there....I was supposed to be at ASCO but with all going on, it didn't work out. When I was with her yesterday, she told me she would not be here today....it was so stormy when I was at her house yesterday...she lives in Utica, the town that had so much damage from the F4 tornado a couple years ago.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
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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06-05-2007, 05:14 PM
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#3
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Sheila, I'm so sorry to hear about your friend. I am keeping both of you in my prayers as I know how difficult this is.
It seems we're still on the same wave length re: stopping Xeloda and moving on to Abraxane. Although I'm now on Tykerb instead of Herceptin.
Abraxane has been very, very tolerable for me, but I'm on the weekly dose; going into week seven, and all the baddies are shrinking, and some of the smaller ones can no longer be felt 
I have had stomach issues with prior infused chemo's so am on Zofran as a premed, but am planning to do without it tomorrow as the stomach has settled down alot. Never did have naseau, but probably would have for the first few weeks without Zofran as I felt "off" for the first 24 hours.
Blood counts are holding up beautifully, haven't had to miss any infusions yet which is a first for me; I'm usually one week on, one week off because of low whites. I'm glad for my port, as of course labs have to be drawn each time to make sure counts are good, and my lymphedema comprimised arms don't like sticks anymore!
Energy levels are good, but I'm careful to rest when I need to, otherwise I "bottom out" and am tired for the rest of the day.
Hair loss is minimal so far, just some thinning.
All in all, one of the easiest so far, except for Xeloda. Maybe for you it will be easier than Xeloda, as I don't think H/F is an issue and I'm sure you're ready for a break from that.
Hope this helps, and hope you can talk to your onc about rethinking the 3 weekly, as weekly does seem to be the better course.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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06-05-2007, 05:54 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Lumberton, Mississippi
Posts: 118
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Sheila, I am not having any of the problems that you and the ones who answered this post. I just wanted to give you some encouragement, as you have encouraged others as well as myself in the past. I truly hope and pray that the Abraxane will work for you. I am praying that God will give you strength while you are by your friends side. You must be a very special person.
Linda
S. Mississippi
__________________
Diagnosed 12/23/04
Biopsy 12/28/04
Lumpectomy 1/04/05
IDC, ER-PR-, HER2Neu+++
7mm tumor, Stage 1, Grade 3
6 CAF's
38 Rads
Finished 10/05
"Worry looks around. Sorry looks back. Faith looks up."
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06-06-2007, 03:46 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Dear Sheila,
It sounds like you are bearing a heavy load. No wonder you feel drained emotionally and physically. You are a good friend, and a very special person. We all lean on you for your words of encouragement and wisdom. Stay strong, my friend, and take care of you. Sounds like Lolly is having great success with the abraxane for her very similar situation - this could be a great solution for you, too. Too bad, just when sandals were coming into season! At least you can give your hands and feet some relief.
Take care, my friend. As you have said to many of us before, it's in God's hands and he will take good care of you
Much love
Chris
__________________
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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06-06-2007, 05:10 PM
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#6
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Hi Sheila! You are so on my mind as you watch your friend lose ground and face your own treatment change. May God send His Angels at the most perfect time! And may you find some peace in such a painful situation. I didn't take Abraxane, but read tons about it thinking that I might. It surely does get great reviews for results and lack of side effects. Do you know yet when you'll start? May you be chased down by smiles and laughter to lighten your load today! 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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06-06-2007, 05:52 PM
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#7
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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strength
Stay strong. You are an amazing person and your posts have kept my spirits up many times when I was down. I hope that your new chemo works wonders for you...
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