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Old 02-26-2007, 09:30 PM   #1
CSheley
Junior Member
 
Join Date: Nov 2006
Posts: 4
Question Xeloda not working - now what?

I've monitored this site for over a year and have gained great insight and reassurance from reading other postings. I'm at a point now where I need some outside support and advice. I had a PET scan this morning and talked to my oncologist just before leaving work. I have mets to lymph nodes in the collarbone area and under the chest bone that are progressing even after adding Xeloda to the Herceptin in Dec. 2006.

I've been on Herceptin since Nov 2005 every 3 weeks. When my cancer reoccured the first time, it was a skin rash across the chest along with lymph nodes in the neck and chest. After 4 rounds of Abraxane and Carboplatin all scans were clear so stopped the chemo but continued the Herceptin. A PET scan last fall showed activity in the same lymph node areas so started the Xeloda. The scan today shows it has a "mild" progression into more nodes in the chest area.

I won't kinow completely what this means until my doctor appointment on Wed but would like to know what options are available. His comment was to stop the Xeloda (which I had to do anyway because of the side affects) and "we will have to rethink the treatment." I would like to do some research and/or have some knowledge before my appointment on Wed.

Any info would be greatly appreciated.

Carolyn
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Old 02-26-2007, 10:50 PM   #2
Adriana Mangus
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Join Date: May 2006
Location: California
Posts: 668
Smile Other options

Hi: Welcome aboard! There are many other options, talk to your onc. Do not get discouraged, read the postings from the other girsl, it's encouraging to know that there are plenty of other treatment avaialble to you....Do not despair.

Keep us posted, please. Sending you best wishes....
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 02-27-2007, 05:44 AM   #3
Sheila
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Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
Carolyn

There are a few of us on the site with mets to the nodes...axilla, collarbone...they are stubborn. The Xeloda with Herceptin has kept mine stable, but not gone....I see you've had Abraxane...maybe Herceptin with Navelbine....my friend is on this right now and it is doing the trick so far where she failed on Abraxane and Xeloda. She said it has been easy to take.
Hope this helps and welcome to our group. Lolly on the site has also had lots of experience with nodes returning, so I am sure she will reply.
__________________
"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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Old 02-27-2007, 06:50 AM   #4
Shell
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Join Date: Sep 2005
Location: Philadelphia
Posts: 301
Carolyn-

if you didn't progress while on one of the taxanes, maybe you will get one of those again. after i progressed while on xeloda (but for 17 months), i was put on navelbine/herceptin/avastin (but only because the taxanes were not an option for me). i'm sure there are other combos as well...

good luck w/ things,
__________________
Shell

init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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Old 02-27-2007, 03:48 PM   #5
Lolly
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Join Date: Aug 2001
Location: Oregon
Posts: 1,756
Hi Carolyn;
I've been fighting stubborn nodes in neck, collarbone and axilla areas since 2001. The good news is that Herceptin can still be effective in keeping these nodes under control even after progression. In my case, even after progression my onc has kept me on Herceptin, added a chemo for up to 6 months, then reverted to Herceptin maintenance again and so far no progression to major organs or bone.
Navelbine was a great chemo for me, although hard on stomach and blood counts these side effects were manageable.
Will try to include some links to data. Best wishes and will keep you in my thoughts and prayers this Wednesday as that is also my treatment day!

Efficacy in Advanced (Metastatic) Breast Cancer
(
Hermine)<O</O
http://www.medicalnewstoday.com/medicalnews.php?newsid=59291


Patient information: Chemotherapy and Herceptin (trastuzumab) for metastatic breast cancer
http://patients.uptodate.com/topic.asp?file=cancer/8347

HER-2-Positive Metastatic Breast Cancer: Optimizing Trastuzumab-Based Therapy http://theoncologist.alphamedpress.o.../11/suppl_1/34
<O</O
__________________
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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