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Old 12-06-2014, 06:03 PM   #1
WayTooYoung
Senior Member
 
Join Date: Jan 2012
Location: Toronto
Posts: 64
Tykerb/Xeloda

I started a new thread as I am unsure what proper etiquette is for this forum...hope that is okay. I just started treatment today and am feeling all sorts of anxiety. I am hoping someone can help answer some questions I have...do I have to wait a certain amount of time after taking the pills before eating again? Also, approximately how many days after starting the treatment do side effects start?

I work full time and am wondering if it will affect me...
__________________
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 01-13-2015, 01:44 PM   #2
jene1835
Junior Member
 
Join Date: Jan 2015
Posts: 1
Re: Tykerb/Xeloda

Hello WayTooYoung: I am a newbie, just joined today. I'm Stage IV Metastatic Breast cancer with bone mets in 2009. Breast recur with mets to right cerebellum 2012. Craniomity 8/2013. 2014 brain recur, age 53.

I was on Tykerb, just like you 5 pills day, empty stomach. I take all my medication(s) in the morning when I first wake up - - then there is no question (for me) as to whether or not I took them. It is is the easiest for me.

I am currently off of Tykerb since October 2014 when my brain tumor showed recur and growth (1.1mm) My only options were cyberknife radiation, of which I had 2 (May 2012 and May 2014) and since being Stage IV I will get chemo fir my life time.

I am currently in a trial of Neratinib and Xeloda. I have been in this trial since 10-28-2014 its purpose was to address all of my tumors growths, which I will say has not worked as of yet. My tumor in cerebellum (right side) is growing. The trial is 21 days per cycle. 6 Neratinib one time day with food. 3 Xeloda 2 times a day with 12 hour intervals between each 3 pill dosage with food. Lomotil up to maximum of 8 tablets a day to control diarrhea. These are for 14 days. Do not take Neratinib for 7 days, but continue with Neratinib and Lomotil. At the end of the cycle, go to the clinician, refill my pills and start the next cycle. I am getting ready to start Cycle 5 Day 1 on Tuesday Jan 20th.

I am no longer on Tykerb, Arimidix, or Herceptin. I get Zometa only every three months (next one is Feb 2015) because I am at my five year mark.

How are you tolerating your treatment(s)? Do you get reimbursed for Tykerb? I have information on a reimbursement place . . . coz it is very costly, as you know.

I'll be checking this site to see if there is a response from you.

Take Care - - Keep looking up!
jene1835 is offline   Reply With Quote
Old 02-03-2015, 08:11 PM   #3
WayTooYoung
Senior Member
 
Join Date: Jan 2012
Location: Toronto
Posts: 64
Re: Tykerb/Xeloda

Hello Jene1835, so good to hear from you. I don't come on this often so it's always nice to see someone is commenting with their experiences or sending me messages of hope. I am tolerating my treatments well...it was a rough start in the beginning. But each round makes it easier...I am finishing round three now. I seem to experience different symptoms each round such a violent acne, mouth sores, and skin sensitivity. I really do not like how it's making my hands and feet look. I see dark spots and my fingertips are dark. I feel self conscious about it...how are you feeling? How does your body feel?
__________________
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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