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09-30-2009, 03:29 PM
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#1
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Senior Member
Join Date: Oct 2007
Location: Balmain Sydney NSW
Posts: 53
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what next?
Hi, I've been on both Tykerb and Xeloda but the markers keep going up and the liver largest liver tumour is now 4cm. There's a scattering in my lungs and a positive node in the inguinal glands. I've been put on Cyclphosphamide (or Cycoblastin) 3 tabs a day. What experience has anyone had on this? And what alternatives are there?
Thanks,
Adrien
PS My history below is well out of date. Will fix soon. That was a year ago.
__________________
1999 IVDC oe+ grade 3
epirubicen, cysplatin, 5FU;
lumpectomy L breast, radiotherapy 6 wks, tamoxifen 3 mths, Examestane 5 yrs
2005 mastectomy (Left ) 10cm IDC in lymphatic system and blood vessels oe- HER2 ++;Taxotere, Herceptin 18 mths
2006 skin tumours below scarline Add Femera, 3 weeks radiotherapy twice daily (unsuccessful)
excision of tumours.
2007 jan skin tumour on L chest wall; positive Right axilla
Temerifen.
September Ca markers rise. Start Tykerb 3 wks radiotherapy
2008 skin tumours regrow. latissimus dorsal flap for excision of skin tumours March 08. HER2++++
Faslodex injections
CEA and Ca15.3 rising
2009
CT scan shows multiple mets in liver, lungs and inguinal glands. Stop Tykerb. Start Xeloda
CEA and Ca15.3 dropping like a stone. Skin tumours disappear.
Return 6 months later.
CT shows increase in size and number liver and lung mets.
Oct: Cyclophosphamide
Markers continue to rise. Change to Caelyx
2010
CEA marker in the 2000s Back to Herceptin
New tunour R Breast
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09-30-2009, 04:33 PM
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#2
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Senior Member
Join Date: Oct 2007
Location: Scottsdale,AZ
Posts: 43
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Re: what next?
I have been on Tykerb/Xeloda for the last 3 months....my docs have said the next step for me is to add Navelbine to the mix. Hopefully, this will hold me until T-DM1 is available to the general population. I also have Ixempra to try or could go back and try Gemzar and Taxotere/Taxol again.
How long were you on Tykerb and how long have you been on Xeloda? Could you take both together? I hate it when these drugs stop being effective!!!
I am hoping that they work at least a year for me.
~Barb
__________________
Dx 5/1/07 (age 47), Left IDC
ER less than 5% +, PR -, HER+ FISH 5.4
Lumpectomy 5/07, Quadrantectomy 6/07
AC 7/07 -10/07, Liver mets dx 9/07 (liver bx)
Taxotere/Herceptin 10/07 -12/07
Herceptin only 1/08 - 7/08
Mastectomy 3/08, RADS 4/08 - 5/08
Brain MRI 5/08 clear
Gemzar/Herceptin 7/08-9/08
Lymphedema 8/08
RADS/Hyperthermia 10/08-11/08
Abraxane/Herceptin 12/08-3/09
Doxil/Herceptin 3/09 to 5/09
Xeloda/Tykerb 6/09-10/09
Navelbine/Xeloda/Tykerb 10/09-12/09
Tykerb/Herceptin 1/11/10
Tykerb/Herceptin/Ixempra 2/1/10
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09-30-2009, 07:35 PM
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#3
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Senior Member
Join Date: Oct 2007
Location: Balmain Sydney NSW
Posts: 53
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Re: what next?
I was on Tykerb for 15 months and then Xeloda for 7. Onc likes to prescribe separately so he can see which is effective. Don't know if I could cope with side effects of both together.
__________________
1999 IVDC oe+ grade 3
epirubicen, cysplatin, 5FU;
lumpectomy L breast, radiotherapy 6 wks, tamoxifen 3 mths, Examestane 5 yrs
2005 mastectomy (Left ) 10cm IDC in lymphatic system and blood vessels oe- HER2 ++;Taxotere, Herceptin 18 mths
2006 skin tumours below scarline Add Femera, 3 weeks radiotherapy twice daily (unsuccessful)
excision of tumours.
2007 jan skin tumour on L chest wall; positive Right axilla
Temerifen.
September Ca markers rise. Start Tykerb 3 wks radiotherapy
2008 skin tumours regrow. latissimus dorsal flap for excision of skin tumours March 08. HER2++++
Faslodex injections
CEA and Ca15.3 rising
2009
CT scan shows multiple mets in liver, lungs and inguinal glands. Stop Tykerb. Start Xeloda
CEA and Ca15.3 dropping like a stone. Skin tumours disappear.
Return 6 months later.
CT shows increase in size and number liver and lung mets.
Oct: Cyclophosphamide
Markers continue to rise. Change to Caelyx
2010
CEA marker in the 2000s Back to Herceptin
New tunour R Breast
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10-01-2009, 11:39 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: what next?
Interesting, the trials for Tykerb approval in the US were based on ADDING Tykerb to Xeloda, and the combination was more effective than Xeloda alone. The indicated use approved in the US is for the combination - so they can definitely be taken together.
The side effect profiles are completely different, so if you can tolerate the side effects of either, you probably could handle them together, and perhaps in combination you would see some synergy.
For me, it seems that with active disease the "targeted" therapies like herceptin and tykerb have needed the additional punch of a chemo agent - but that's just my personal experience.
__________________
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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10-04-2009, 09:47 AM
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#5
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Re: what next?
I found that Xeloda with Tykerb was my easiest treatment to date. Almost no side effects and it held me the longest.
Good luck and well wishes to you.
Carolyn
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10-12-2009, 12:01 AM
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#6
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Senior Member
Join Date: Oct 2007
Location: Balmain Sydney NSW
Posts: 53
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Re: what next?
Thanks all,
I found that with Xeloda my feet burned and peeled so much I could barely walk. Plus fatigue and digestive probs but with Tykerb it was digestion and a skin prickle that became very distressing. I can't imagine the 2 togethr.
Sigh. will wait and see. That's the story, really.
__________________
1999 IVDC oe+ grade 3
epirubicen, cysplatin, 5FU;
lumpectomy L breast, radiotherapy 6 wks, tamoxifen 3 mths, Examestane 5 yrs
2005 mastectomy (Left ) 10cm IDC in lymphatic system and blood vessels oe- HER2 ++;Taxotere, Herceptin 18 mths
2006 skin tumours below scarline Add Femera, 3 weeks radiotherapy twice daily (unsuccessful)
excision of tumours.
2007 jan skin tumour on L chest wall; positive Right axilla
Temerifen.
September Ca markers rise. Start Tykerb 3 wks radiotherapy
2008 skin tumours regrow. latissimus dorsal flap for excision of skin tumours March 08. HER2++++
Faslodex injections
CEA and Ca15.3 rising
2009
CT scan shows multiple mets in liver, lungs and inguinal glands. Stop Tykerb. Start Xeloda
CEA and Ca15.3 dropping like a stone. Skin tumours disappear.
Return 6 months later.
CT shows increase in size and number liver and lung mets.
Oct: Cyclophosphamide
Markers continue to rise. Change to Caelyx
2010
CEA marker in the 2000s Back to Herceptin
New tunour R Breast
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