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Old 12-02-2014, 08:03 PM   #1
WayTooYoung
Senior Member
 
Join Date: Jan 2012
Location: Toronto
Posts: 64
Any info about Tykerb + Capecitibine (Zeloda)???


Hello ladies,
My recent scans shows metastasis to the lungs and lower spine. One of the options Dr is recommending is Tykerb+Capecitibine...As always, I am scared of starting a new treatment...especially about the side effects. I am hoping to hear from anyone who has had any experience with this combo. Was it successful? Easy to tolerate? Was there hair loss?

Thanx for sharing (in advance)...
__________________
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 12-02-2014, 08:36 PM   #2
Rolepaul
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Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 388
Re: Any info about Tykerb + Capecitibine (Zeloda)???

Xeloda will give you a hand and foot rash like you would never believe. Udder cream and bag balm for the hands, with cloth gloves at night. Henna with lemon juice into a water paste for the feet. Ask the doctor if he will give you Intrathecal Herceptin for the spine.
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Old 12-03-2014, 05:18 AM   #3
Lauriesh
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Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
Re: Any info about Tykerb + Capecitibine (Zeloda)???

I have not been on that combo, but have been on tykerb.
Neither of these drugs cause hair loss.
Tykerb can cause a lot of digestive issues, especially diarrhea . You can play around with taking the dose at different times of the day to see if that helps. I took it in the evening which seemed to help a little.
Some women will do a dose reduction, if the side effects are too bad.

Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 12-05-2014, 06:57 PM   #4
Dakini52
Senior Member
 
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
Re: Any info about Tykerb + Capecitibine (Zeloda)???

You may want to take a look at this: http://www.esmo.org/Conferences/ESMO...-Breast-Cancer

According to my oncologist it is the new protocol for HER2 positive breast cancer and has shown some pretty incredible results in the studies so far.
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Old 12-05-2014, 07:56 PM   #5
Dakini52
Senior Member
 
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
Re: Any info about Tykerb + Capecitibine (Zeloda)???

Just realized how young you are....I really hate when this stuff hits anyone but especially those who are so young. Thoughts and prayers are with you. The treatment I pointed out in my earlier post appears to have much less in the way of side effects and according to my onc in Seattle, will become standard protocol for those with HER2 metastatic breast cancer. Hope you can get access to it.
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Old 12-05-2014, 07:59 PM   #6
Dakini52
Senior Member
 
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
Re: Any info about Tykerb + Capecitibine (Zeloda)???

As far as Tykerb goes, it was intolerable for me. sores on my scalp; felt terrible and then had problems with my throat swelling shut so I was taken off it. I'm not really sure that it is nearly as effective as some of the more recent drugs that are being tested in studies.
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Old 12-06-2014, 01:39 PM   #7
WayTooYoung
Senior Member
 
Join Date: Jan 2012
Location: Toronto
Posts: 64
Re: Any info about Tykerb + Capecitibine (Zeloda)???

Thank you for all your posts. I am from Canada and wad on the Marianne Trial (TDM1+Herceptin+Pertuzamab). The Pertuzumab my have been a placebo but I am not sure because it was a blind study. Since i may have already had it, i no longer qualify for pertuzumab...
I just picked up my meds (tykerb/xeloda). Just took my first 5 pills (tykerb). Going to eat and try the Xeloda (fingers crossed).
__________________
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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