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Old 08-18-2015, 05:49 PM   #1
WayTooYoung
Senior Member
 
Join Date: Jan 2012
Location: Toronto
Posts: 64
Tykerb/Xeloda Not Working Anymore :(

Hi folks,

I just found out today that I have progressed on tykerb/xeloda. Ct Scan shows I have 5 lesions on my lungs and possibly one in the liver. I jave fluid build up in my lungs which is resulting in my shortness of breath. Dr said my only option is Herceptin/Taxol now...but I will lose my hair again.

I am devastated again. Does anyone have any other possible options to recommend? I am in Canada...the downside, bc treatment won't be firstline, I no longer qualify for Herceptin coverage. If my health plan doesnt cover it, I am not sure how I will pay for it.

Has anyone else tried taxol/herceptin combo? What are some side effects to expect?

I'm feeling bleak...and helpless...
__________________
Feb/2010-Diagnosed with IDC ER+, PR+, Her2+++(age 28)
Mar 2010- 6 Rounds of FECT (made me sick as a dog)
Jun 2010- Finished chemo
Jul 2010- Mastectomy +12 lymphs (4+)
Oct 2010- Radiation/Begin Herceptin (Her2 was overlooked by my Onco!)
Sep 2011- End of Herceptin
Nov 2011- Recurrence-->Chest Wall, muscle, and possible lymph (ER+, PR-, Her2+++)...WTF!!!???!!!
Feb 2012-Randomized for Clinical Trial
Feb 2012- Begin blind study either TDM1 w/Pertuzumab or TDM1 w/Placebo Pertuzumab
Jan 2013-2nd Recurrence, off TDM1...what next?
Feb 2013-chest wall resection
Feb 2013-Begin Zoladex :(
Apr 2013-Begin Femara
Jul 2013-Oopherectomy + both tubes
Oct 2013-Chest wall recurrence same spot...Dr monitor
Nov 2013-New nodule on chest...restaging...bone/ct clear...continue to monitor
Mar 2014-Surgeon fr/dif hospital confirms lung metasis based on review of CT scan from Nov...Onc recommends Aromasin/Affinitor...
Apr 2014-Start Herceptin+Vinorelbine
Sep 2014-New pain in lower back, MRI confirms metastasis
Oct 2014-SBRT to lungs
Nov 2014-SBRT to lower back
Dec 2014-Restaging confirms two new nodules to lungs and lower spine :(
Jan 2015-Xeloda and Tykerb (good response)
Aug 2015-Xeloda/Tykerb not working...Dr wants to try Taxol/Herceptin combo...problem, Herceptin not covered by OHIP
Sep 2015-Begin Taxol continue Xgeva
Oct 2015-Add Herceptin
Nov 2015-CT stable but MRI shows new mets to spine :(
Jan/Feb 2016-Start Erubulin (Halavan)
May 2016-Progression...Stop Erubulin
June 2016-PMH to explore Clinical Trial options...consideration for Immunotherapy
July 2016-Screening for Trial...Still without treatment, experiencing low appetite, low energy, pain, and rapid wieght loss...cachexia???



You never know how STRONG you really are...until being strong is the only CHOICE you have...
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Old 08-19-2015, 11:58 AM   #2
Lucy
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Join Date: Oct 2014
Posts: 234
Re: Tykerb/Xeloda Not Working Anymore :(

I responded to your other post about this but I'll say it here too . . . Taxol typically is tolerated well. I did have some adverse side effects but they weren't typical of most. Yes, you will lose your hair (my eyebrows had held out until I started Taxol). I got neuropathy in my hands and feet (I was told about 75% of patients do). My toenails lifted and changed colors. Those are all pretty typical from my understanding and while annoying, are tolerable.

If you're treating HER2 cancer I would think herceptin would still be covered under your insurance. Has someone told you it wouldn't be? Can you call an confirm? What about perjeta? I would fight for the treatment you need because it's not elective - it's necessary!

Good luck and keep us posted.

Sending cyber hugs
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Old 08-19-2015, 11:13 PM   #3
WayTooYoung
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Join Date: Jan 2012
Location: Toronto
Posts: 64
Re: Tykerb/Xeloda Not Working Anymore :(

I am not sure how my Dr explained it yesterday. I tried calling him to confirm but am awaiting for a call back. They are putting me on a patient assistance program...so I guess maybe its not covered for people with stage 4? No idea...
__________________
Feb/2010-Diagnosed with IDC ER+, PR+, Her2+++(age 28)
Mar 2010- 6 Rounds of FECT (made me sick as a dog)
Jun 2010- Finished chemo
Jul 2010- Mastectomy +12 lymphs (4+)
Oct 2010- Radiation/Begin Herceptin (Her2 was overlooked by my Onco!)
Sep 2011- End of Herceptin
Nov 2011- Recurrence-->Chest Wall, muscle, and possible lymph (ER+, PR-, Her2+++)...WTF!!!???!!!
Feb 2012-Randomized for Clinical Trial
Feb 2012- Begin blind study either TDM1 w/Pertuzumab or TDM1 w/Placebo Pertuzumab
Jan 2013-2nd Recurrence, off TDM1...what next?
Feb 2013-chest wall resection
Feb 2013-Begin Zoladex :(
Apr 2013-Begin Femara
Jul 2013-Oopherectomy + both tubes
Oct 2013-Chest wall recurrence same spot...Dr monitor
Nov 2013-New nodule on chest...restaging...bone/ct clear...continue to monitor
Mar 2014-Surgeon fr/dif hospital confirms lung metasis based on review of CT scan from Nov...Onc recommends Aromasin/Affinitor...
Apr 2014-Start Herceptin+Vinorelbine
Sep 2014-New pain in lower back, MRI confirms metastasis
Oct 2014-SBRT to lungs
Nov 2014-SBRT to lower back
Dec 2014-Restaging confirms two new nodules to lungs and lower spine :(
Jan 2015-Xeloda and Tykerb (good response)
Aug 2015-Xeloda/Tykerb not working...Dr wants to try Taxol/Herceptin combo...problem, Herceptin not covered by OHIP
Sep 2015-Begin Taxol continue Xgeva
Oct 2015-Add Herceptin
Nov 2015-CT stable but MRI shows new mets to spine :(
Jan/Feb 2016-Start Erubulin (Halavan)
May 2016-Progression...Stop Erubulin
June 2016-PMH to explore Clinical Trial options...consideration for Immunotherapy
July 2016-Screening for Trial...Still without treatment, experiencing low appetite, low energy, pain, and rapid wieght loss...cachexia???



You never know how STRONG you really are...until being strong is the only CHOICE you have...
WayTooYoung is offline   Reply With Quote
Old 08-23-2015, 08:03 PM   #4
broccoli
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Join Date: Dec 2013
Location: Toronto, Canada
Posts: 26
Re: Tykerb/Xeloda Not Working Anymore :(

OHIP covers Herceptin/Perjeta/Taxol if your previous treatment worked for 6 months or longer. (https://www.cancercare.on.ca/CCO_Dru...?itemId=290630) You are likely in luck.

Are you at PMH? There are also more HER2 targeted drug studies being run by my onc there.
__________________
2012-Feb-29 D-Day: IDC ER-/PR- HER2+++ Grade 3, Stage 3 - several biopsy proven positive nodes
2012-Mar - July: Neoadjuvant FEC-D + Herceptin (6 rounds)
2012-Apr: DVT in arm that received chemo - put on LMW Heparin
2012-Apr: Port installed
2012-Sep-7: Lumpectomy + ALND - pCR with residual DCIS
2012-Oct: Switched from LMW Heparin to Warfarin
2012-Oct-Nov: 30 days of rads
2013-Jan: Entered Adjuvant Metformin trial (Metformin or placebo for 5 years)
2013-Jan: Switched from Warfarin to Xarelto
2013-Mar: First signs of lymphedema
2013-May-16: Last Herceptin (17 doses in total)
2013-Jun: Port removed and anticoagulants stopped
2014-Mar: Lymphedema worsened and became unresponsive to treatment
2015-Apr: Started PENTOCLO protocol to attempt to improve radiation fibrosis
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Old 08-23-2015, 08:26 PM   #5
WayTooYoung
Senior Member
 
Join Date: Jan 2012
Location: Toronto
Posts: 64
Re: Tykerb/Xeloda Not Working Anymore :(

Hi Broccoli! Thank you for the info. I spoke to my Dr on Friday and he said the government only covers herceptin for 2 lines (and I have used them all). But, according to the information you sent me, there may be just a glimmer of hope for me! I will print it up and take it to my Dr.

I am at Sunnybrooke. Did you know there is a new clinical trial at PMH that is exploring vaccines to fight cancer? It's currently in phase 1...sounds very promising.
__________________
Feb/2010-Diagnosed with IDC ER+, PR+, Her2+++(age 28)
Mar 2010- 6 Rounds of FECT (made me sick as a dog)
Jun 2010- Finished chemo
Jul 2010- Mastectomy +12 lymphs (4+)
Oct 2010- Radiation/Begin Herceptin (Her2 was overlooked by my Onco!)
Sep 2011- End of Herceptin
Nov 2011- Recurrence-->Chest Wall, muscle, and possible lymph (ER+, PR-, Her2+++)...WTF!!!???!!!
Feb 2012-Randomized for Clinical Trial
Feb 2012- Begin blind study either TDM1 w/Pertuzumab or TDM1 w/Placebo Pertuzumab
Jan 2013-2nd Recurrence, off TDM1...what next?
Feb 2013-chest wall resection
Feb 2013-Begin Zoladex :(
Apr 2013-Begin Femara
Jul 2013-Oopherectomy + both tubes
Oct 2013-Chest wall recurrence same spot...Dr monitor
Nov 2013-New nodule on chest...restaging...bone/ct clear...continue to monitor
Mar 2014-Surgeon fr/dif hospital confirms lung metasis based on review of CT scan from Nov...Onc recommends Aromasin/Affinitor...
Apr 2014-Start Herceptin+Vinorelbine
Sep 2014-New pain in lower back, MRI confirms metastasis
Oct 2014-SBRT to lungs
Nov 2014-SBRT to lower back
Dec 2014-Restaging confirms two new nodules to lungs and lower spine :(
Jan 2015-Xeloda and Tykerb (good response)
Aug 2015-Xeloda/Tykerb not working...Dr wants to try Taxol/Herceptin combo...problem, Herceptin not covered by OHIP
Sep 2015-Begin Taxol continue Xgeva
Oct 2015-Add Herceptin
Nov 2015-CT stable but MRI shows new mets to spine :(
Jan/Feb 2016-Start Erubulin (Halavan)
May 2016-Progression...Stop Erubulin
June 2016-PMH to explore Clinical Trial options...consideration for Immunotherapy
July 2016-Screening for Trial...Still without treatment, experiencing low appetite, low energy, pain, and rapid wieght loss...cachexia???



You never know how STRONG you really are...until being strong is the only CHOICE you have...
WayTooYoung is offline   Reply With Quote
Old 08-24-2015, 05:49 AM   #6
KeriK
Senior Member
 
Join Date: Jan 2014
Location: Las Vegas
Posts: 26
Re: Tykerb/Xeloda Not Working Anymore :(

Have you asked your Dr about Perjetta?
I have no experience with it but everyone I know on it calls it their miracle!
And reach out to Genentech about compassionate use with either herceptin or Perjeta.
Best of luck, stay positive, and pray a lot!!!

Keri

PS. Vit b 6 150 mg and L Carotine helped relieve my neuropathy
__________________
[/SIGPIC]37 years old
12/10 her 2+, ER+ invasive ductile carc stage 3C
1/11 taxol herc 12 wks
4/11 FEC herc 12 wks
8/11 masectomy 48 lymph nodes removed
9/11 tamoxifen
10/11 radiation thru Dec
11/12 recon!
12/12. It's back. :( mets to liver and lungs
Stopped tamoxifen
1/13 TDM1 expansion trial
4/13 lung mets gone 65% reduction in liver markers in low teens!
12/13 lungs still clear! Liver mets reduction
12/13 opherectomy
1/14. Tumor markers increasing. 30's now
2/14 TMs back in high teens
4/14 increased calcium levels
5/14 Xgeva to kadcyla. Scan showed tiny scar tissue on sternum, not previously ever seen
8/14 NED
12/14 NED!!
4/15. NED. YAY! Dr thinking about stopping kadcyla
7/15 still NED. LAST KADCYLA SCHEDULED FOR 9/3
8/15 left side of tongue and lips went numb, brain MRI revealed 10 lesions all over the brain. :(
8/15. Tumor markers still in high teens ???
8/15. 15 rounds of Whole Brain Radiation
Started an Alzheimer's medicine, Namenda, to help preserve brain cognition.
9/15 started Afinator and Tykerb
10/15. Brain MRI. 7 rumors left, nothing new, nothing growing
12/15. 3 sessions of cyber knife
3/16 MRI stable. Nothing new nothing growing nothing shrinking
5/16. MRI. 4 existing tumors doubled in size and 2 new tumor
Looking into clinical trials
6/16. 6 2 hr sessions of cyber knife
10/16 stable MRI
11/16 back in the body.......lungs liver lymph nodes sternum
11/16 abraxane herceptin xgeva
12/16 lungs clear but now 2 tumor in liver
2/17 Opdivo ibrance Tykerb xgeva
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Old 11-24-2015, 03:15 AM   #7
WayTooYoung
Senior Member
 
Join Date: Jan 2012
Location: Toronto
Posts: 64
Re: Tykerb/Xeloda Not Working Anymore :(

Hi Kerry,

Not sure when this message was posted but I never saw it until now. I was on a tdm1 clinical trial that included a blind study for Perjeta. Since there was a possibility I may have already had it, the Canadian govt won't cover it. I am currently on taxol/herceptin combo.

N
__________________
Feb/2010-Diagnosed with IDC ER+, PR+, Her2+++(age 28)
Mar 2010- 6 Rounds of FECT (made me sick as a dog)
Jun 2010- Finished chemo
Jul 2010- Mastectomy +12 lymphs (4+)
Oct 2010- Radiation/Begin Herceptin (Her2 was overlooked by my Onco!)
Sep 2011- End of Herceptin
Nov 2011- Recurrence-->Chest Wall, muscle, and possible lymph (ER+, PR-, Her2+++)...WTF!!!???!!!
Feb 2012-Randomized for Clinical Trial
Feb 2012- Begin blind study either TDM1 w/Pertuzumab or TDM1 w/Placebo Pertuzumab
Jan 2013-2nd Recurrence, off TDM1...what next?
Feb 2013-chest wall resection
Feb 2013-Begin Zoladex :(
Apr 2013-Begin Femara
Jul 2013-Oopherectomy + both tubes
Oct 2013-Chest wall recurrence same spot...Dr monitor
Nov 2013-New nodule on chest...restaging...bone/ct clear...continue to monitor
Mar 2014-Surgeon fr/dif hospital confirms lung metasis based on review of CT scan from Nov...Onc recommends Aromasin/Affinitor...
Apr 2014-Start Herceptin+Vinorelbine
Sep 2014-New pain in lower back, MRI confirms metastasis
Oct 2014-SBRT to lungs
Nov 2014-SBRT to lower back
Dec 2014-Restaging confirms two new nodules to lungs and lower spine :(
Jan 2015-Xeloda and Tykerb (good response)
Aug 2015-Xeloda/Tykerb not working...Dr wants to try Taxol/Herceptin combo...problem, Herceptin not covered by OHIP
Sep 2015-Begin Taxol continue Xgeva
Oct 2015-Add Herceptin
Nov 2015-CT stable but MRI shows new mets to spine :(
Jan/Feb 2016-Start Erubulin (Halavan)
May 2016-Progression...Stop Erubulin
June 2016-PMH to explore Clinical Trial options...consideration for Immunotherapy
July 2016-Screening for Trial...Still without treatment, experiencing low appetite, low energy, pain, and rapid wieght loss...cachexia???



You never know how STRONG you really are...until being strong is the only CHOICE you have...
WayTooYoung is offline   Reply With Quote
Old 11-24-2015, 11:21 PM   #8
broccoli
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Join Date: Dec 2013
Location: Toronto, Canada
Posts: 26
Re: Tykerb/Xeloda Not Working Anymore :(

@waytooyoung - did you check with your study coordinator to see if they could reveal whether you got the placebo or perjeta?

Laura
__________________
2012-Feb-29 D-Day: IDC ER-/PR- HER2+++ Grade 3, Stage 3 - several biopsy proven positive nodes
2012-Mar - July: Neoadjuvant FEC-D + Herceptin (6 rounds)
2012-Apr: DVT in arm that received chemo - put on LMW Heparin
2012-Apr: Port installed
2012-Sep-7: Lumpectomy + ALND - pCR with residual DCIS
2012-Oct: Switched from LMW Heparin to Warfarin
2012-Oct-Nov: 30 days of rads
2013-Jan: Entered Adjuvant Metformin trial (Metformin or placebo for 5 years)
2013-Jan: Switched from Warfarin to Xarelto
2013-Mar: First signs of lymphedema
2013-May-16: Last Herceptin (17 doses in total)
2013-Jun: Port removed and anticoagulants stopped
2014-Mar: Lymphedema worsened and became unresponsive to treatment
2015-Apr: Started PENTOCLO protocol to attempt to improve radiation fibrosis
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Old 11-29-2015, 06:17 PM   #9
WayTooYoung
Senior Member
 
Join Date: Jan 2012
Location: Toronto
Posts: 64
Re: Tykerb/Xeloda Not Working Anymore :(

Hi Brocoli!

Yes, my Onc requested from La Roche to unblind the study to see if I had received perjeta but they wouldn't.
__________________
Feb/2010-Diagnosed with IDC ER+, PR+, Her2+++(age 28)
Mar 2010- 6 Rounds of FECT (made me sick as a dog)
Jun 2010- Finished chemo
Jul 2010- Mastectomy +12 lymphs (4+)
Oct 2010- Radiation/Begin Herceptin (Her2 was overlooked by my Onco!)
Sep 2011- End of Herceptin
Nov 2011- Recurrence-->Chest Wall, muscle, and possible lymph (ER+, PR-, Her2+++)...WTF!!!???!!!
Feb 2012-Randomized for Clinical Trial
Feb 2012- Begin blind study either TDM1 w/Pertuzumab or TDM1 w/Placebo Pertuzumab
Jan 2013-2nd Recurrence, off TDM1...what next?
Feb 2013-chest wall resection
Feb 2013-Begin Zoladex :(
Apr 2013-Begin Femara
Jul 2013-Oopherectomy + both tubes
Oct 2013-Chest wall recurrence same spot...Dr monitor
Nov 2013-New nodule on chest...restaging...bone/ct clear...continue to monitor
Mar 2014-Surgeon fr/dif hospital confirms lung metasis based on review of CT scan from Nov...Onc recommends Aromasin/Affinitor...
Apr 2014-Start Herceptin+Vinorelbine
Sep 2014-New pain in lower back, MRI confirms metastasis
Oct 2014-SBRT to lungs
Nov 2014-SBRT to lower back
Dec 2014-Restaging confirms two new nodules to lungs and lower spine :(
Jan 2015-Xeloda and Tykerb (good response)
Aug 2015-Xeloda/Tykerb not working...Dr wants to try Taxol/Herceptin combo...problem, Herceptin not covered by OHIP
Sep 2015-Begin Taxol continue Xgeva
Oct 2015-Add Herceptin
Nov 2015-CT stable but MRI shows new mets to spine :(
Jan/Feb 2016-Start Erubulin (Halavan)
May 2016-Progression...Stop Erubulin
June 2016-PMH to explore Clinical Trial options...consideration for Immunotherapy
July 2016-Screening for Trial...Still without treatment, experiencing low appetite, low energy, pain, and rapid wieght loss...cachexia???



You never know how STRONG you really are...until being strong is the only CHOICE you have...
WayTooYoung is offline   Reply With Quote
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