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05-13-2008, 10:39 PM
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#1
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Senior Member
Join Date: Mar 2007
Location: From Syracuse, NY but living in Tokyo, Japan for 26yrs
Posts: 132
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Herceptin w/either Navelbine or Xeloda
The Herceptin Taxol regimen I've been on since last June has dramatically shrunk the tumors in my lungs but a recent CT scan has uncovered a completely new tumor that has grown from zero to 1.8 cm in 3 months in the lower part of my right lung while I was on the regimen so it's farewell Taxol now. My oncologist spoke of continuing Herceptin for now (last ejection fraction was slightly decreased so I'm checking it again in two weeks to see if I can stay on Herceptin :-( ) and adding either Navelbine (injections) or Xeloda (orals, twice daily) and described all the side effects. He explained that the effectiveness of either of these is only about 20 percent and that Tykerb is currently on trial here but that he couldn't get me into the trial as they need indigenous (Japanese) data. He said he expected the Tykerb to be available for him to legally prescribe for me by December.
So...I'm leaning towards the oral Xeloda but would love to hear some opinions. Sigh.
__________________
Kathy S in Tokyo (44)
11/2004 partial masectomy (clear margins) - ER/PR++ HER+++
12/2004 Tamoxifen
11/2005 Clavicle & neck lymph nodes mets
30 Days rads, 7 months CEF-T Chemo
6/2006 mid chemo lung mets oral toremifene
10/2006 changed hospitals
12/2006 Tamoxifen and monthly Zoladex
2/2007 Dramatic growth of mets! Stopped Tamoxifen and Zoladex
3/2007 Began weekly Herceptin
6/2007 Added weekly Taxol to regime
4/2008 More lung mets - stopped Taxol
5/2008 Xeloda - 3 weeks on 1 week off
8/2008 Got a port!
9/2008 Stopped Xeloda, started weekly Navelbine
12/2008 Tumor progression, stopped Navelbine
1/2009 Taxotere begins again, once in every three weekly Herceptin IVs
3/2009 Added Zometa pelvic bone met, lung tumors progressing, stopped Taxotere/Herceptin
4/10/2009 Whoa seizure! 6cm&3cm brain mets. craniotomy and gamma knife surgery 5/15/2009 Started Adria/Cyto stopped 9/15 due to progession. Brain mets back 10/28 surgery more gamma soon
Last edited by Kathy S in Tokyo; 05-13-2008 at 11:41 PM..
Reason: forgot some info.
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05-14-2008, 01:56 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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I was on herceptin/navelbine for 1 yr. It was fairly easy, but my wbc were always low so I would give myself neupogen shots for 3 days after each treatment. Some fatigue, some slight nausea.
I was on herceptin/xeloda for 2 1/2 yrs. Felt great. Lots of hand/foot syndrome, but learned to treat it & cope with it. No other side effects except for lots of diarrhea in the beginning, but that settled out. I loved the ease of taking it orally. Then I switched to xeloda / tykerb & was on that for another year. No additional side effects for me. On the xeloda I never felt like I was on chemo.
Sadly, xeloda/tykerb is not working for me now & I start taxol/avastin today.
I had good results with both the navelbine & xeloda. You have 2 good choices. Best of luck with whichever you do.
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05-14-2008, 07:49 AM
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#3
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Senior Member
Join Date: Jul 2006
Posts: 869
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Yes, I was on herceptin with both xeloda and navelbine for over a year with very good results. Hope the same for you. Ceesun
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05-14-2008, 08:27 AM
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#4
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Kathy,
I don't have an answer on your question but I have another one. Could or would your doctor prescribe Tykerb off trial? I was not in a trial and was able to get Tykerb as stage IV once Tykerb was approved in the US last March. Perhaps that is only in the US.
Good luck to you. I hope that whatever combo you end up using works on this pesky tumor quickly.
Carolyn
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05-14-2008, 11:05 AM
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#5
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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Kathy I'm taking Herceptin and Navelbine every two weeks right now - the only side effects are tiredness and diarrhea for the first 2-3 days - and I was told I won't experience hair loss. I can't give you any info about the effectiveness of this treatment - and I'm so sorry you have to deal with this nastiness! I'll be praying for you and your complete recovery!
__________________
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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05-14-2008, 02:31 PM
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#6
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Hey Kathy
You are doing it opposite from the way I did it...I did the Herceptin /Xeloda for over a year until it quit working, then went to Taxol,Avastin, Herceptin, Then just the Taxol/Herceptin...now ending my break and going on Abraxane if the insurance approves (with Herceptin) or back on the Taxol w/herceptin...I found Xeloda very easy to take, and loved that it was pill form!!!! Some issues with hand/foot neuropathy, just wore flip flops alot! My friend is on Navelbine/Herceptin and she is doing great.....no hair loss like with Taxol, but she is really tired!
Hope this helps...keep us posted on the concoction they decide on!!!!!
__________________
"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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05-14-2008, 05:23 PM
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#7
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Senior Member
Join Date: Mar 2007
Location: From Syracuse, NY but living in Tokyo, Japan for 26yrs
Posts: 132
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My doctor is quite excited about Tykerb but can't give me any until it is approved by the Japanese medical authorities so I'll have to wait until December and hope that my heart function stays stable so I can stay on Herceptin until then. I sure wish he could slip me some sooner though. He was very apologetic that I didn't qualify for the trials here.
__________________
Kathy S in Tokyo (44)
11/2004 partial masectomy (clear margins) - ER/PR++ HER+++
12/2004 Tamoxifen
11/2005 Clavicle & neck lymph nodes mets
30 Days rads, 7 months CEF-T Chemo
6/2006 mid chemo lung mets oral toremifene
10/2006 changed hospitals
12/2006 Tamoxifen and monthly Zoladex
2/2007 Dramatic growth of mets! Stopped Tamoxifen and Zoladex
3/2007 Began weekly Herceptin
6/2007 Added weekly Taxol to regime
4/2008 More lung mets - stopped Taxol
5/2008 Xeloda - 3 weeks on 1 week off
8/2008 Got a port!
9/2008 Stopped Xeloda, started weekly Navelbine
12/2008 Tumor progression, stopped Navelbine
1/2009 Taxotere begins again, once in every three weekly Herceptin IVs
3/2009 Added Zometa pelvic bone met, lung tumors progressing, stopped Taxotere/Herceptin
4/10/2009 Whoa seizure! 6cm&3cm brain mets. craniotomy and gamma knife surgery 5/15/2009 Started Adria/Cyto stopped 9/15 due to progession. Brain mets back 10/28 surgery more gamma soon
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05-14-2008, 05:27 PM
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#8
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Senior Member
Join Date: Mar 2007
Location: From Syracuse, NY but living in Tokyo, Japan for 26yrs
Posts: 132
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PamP - Thank you very much for the information and encouragement. Sorry to hear that the regimen no longer works for you. I hope that the Avastin/Taxol kicks in for you.
Hugs,
__________________
Kathy S in Tokyo (44)
11/2004 partial masectomy (clear margins) - ER/PR++ HER+++
12/2004 Tamoxifen
11/2005 Clavicle & neck lymph nodes mets
30 Days rads, 7 months CEF-T Chemo
6/2006 mid chemo lung mets oral toremifene
10/2006 changed hospitals
12/2006 Tamoxifen and monthly Zoladex
2/2007 Dramatic growth of mets! Stopped Tamoxifen and Zoladex
3/2007 Began weekly Herceptin
6/2007 Added weekly Taxol to regime
4/2008 More lung mets - stopped Taxol
5/2008 Xeloda - 3 weeks on 1 week off
8/2008 Got a port!
9/2008 Stopped Xeloda, started weekly Navelbine
12/2008 Tumor progression, stopped Navelbine
1/2009 Taxotere begins again, once in every three weekly Herceptin IVs
3/2009 Added Zometa pelvic bone met, lung tumors progressing, stopped Taxotere/Herceptin
4/10/2009 Whoa seizure! 6cm&3cm brain mets. craniotomy and gamma knife surgery 5/15/2009 Started Adria/Cyto stopped 9/15 due to progession. Brain mets back 10/28 surgery more gamma soon
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05-14-2008, 05:31 PM
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#9
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Senior Member
Join Date: Mar 2007
Location: From Syracuse, NY but living in Tokyo, Japan for 26yrs
Posts: 132
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Sheila, I think we had our Taxol breaks at the same time - whoo hoo no steroids for almost a month! I stayed on Herceptin and just had a break from Taxol just for 3 weeks and then stopped the Taxol completely when I got the CT scan results on Tuesday.
I really appreciate all the experiences people are sharing here to help me make up my mind. Hope that the Abraxane works well for you.
Hugs,
__________________
Kathy S in Tokyo (44)
11/2004 partial masectomy (clear margins) - ER/PR++ HER+++
12/2004 Tamoxifen
11/2005 Clavicle & neck lymph nodes mets
30 Days rads, 7 months CEF-T Chemo
6/2006 mid chemo lung mets oral toremifene
10/2006 changed hospitals
12/2006 Tamoxifen and monthly Zoladex
2/2007 Dramatic growth of mets! Stopped Tamoxifen and Zoladex
3/2007 Began weekly Herceptin
6/2007 Added weekly Taxol to regime
4/2008 More lung mets - stopped Taxol
5/2008 Xeloda - 3 weeks on 1 week off
8/2008 Got a port!
9/2008 Stopped Xeloda, started weekly Navelbine
12/2008 Tumor progression, stopped Navelbine
1/2009 Taxotere begins again, once in every three weekly Herceptin IVs
3/2009 Added Zometa pelvic bone met, lung tumors progressing, stopped Taxotere/Herceptin
4/10/2009 Whoa seizure! 6cm&3cm brain mets. craniotomy and gamma knife surgery 5/15/2009 Started Adria/Cyto stopped 9/15 due to progession. Brain mets back 10/28 surgery more gamma soon
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