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Old 08-29-2007, 01:58 AM   #1
Dina
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Location: London, England
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tykerb, navelbine

Is anybody else having tykerb with navelbine? And what side effects do you get?

I started tykerb with capecitabine but it was too toxic, so my oncologist swopped navelbine instead, which does seem to be keeping things under control. But there's so much more experience on this forum than in the doctor's office, I'm interested to hear what any of you out there have to say!

Thanks loads, this is my first posting, so sorry if I've got any of the formalities wrong...love, Dina
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Old 08-29-2007, 06:48 AM   #2
DonnaD
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Hi Dina

I just wanted to say Welcome. We are all sisters here and find, support, strength, knowledge and friendship from one another.

Sorry I can't help with your question on Tykerb and Navelbine but I am sure someone will be getting back to you.

Donna
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Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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Old 08-29-2007, 08:54 AM   #3
Dina
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thanks Donna, I know from spending lots of time reading these posts what a good support network it is.
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Old 08-29-2007, 12:23 PM   #4
Sheila
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Dina
Why didn't the onc just reduce the Xeloda, if it was working....it works well at a lower dose and is much easier on the body, and its pill form than Navelbine.....which you need a port for. Just wondering.
Also, welcome to our group...here you can find more knowledge, love, compassion and support than anywhere in the world....this group is AMAZING! Just ask away....on anything...someone here has been there done that so to speak!
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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 08-30-2007, 02:01 PM   #5
Shell
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I had xeloda/tykerb together, but eventually started to progress on them. Once the FDA approved it, we added tykerb to my regimen, which at one time was navelbine, but I progresed on the navelbine, so we moved on to gemzar/carbo with the tykerb. The diarhhea was too strong for me, and it seemed evident that tykerb wasn't my miralce, soiI stopped it several months ago.

I am now on abraxane, which seems to be doing well.

Good luck w/ things.

Regards,
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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 08-31-2007, 12:49 AM   #6
Dina
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thank you shell, so much, for this reply. It sounds like you're living a similar pattern to my life - I was first diagnosed 2004, and since then it's been a series of different meds until each one stops working...all quite anxiety inducing to live with, isn't it? I'm coming off the navelbine after six rounds, but staying on the tykerb, and then my oncologist seems to be proposing that we just wait and see what happens, and tackle whatever progression with another chemo. So I'm interested to hear about abraxane....are you generally well? How tired do you get?

thanks again for replying, and wishing you too well with everything, love, Dina
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Old 08-31-2007, 02:43 AM   #7
Shell
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Dina-

I too was diagnosed initially in 2004. Xeloda worked on my mets the longest, nearly 1 1/2 years. The fall of 2007 was rough as I blew through doxil, navelbine and then the gemzar/carbo. I had severe SOB, but was still working somewhat full time, along with two girls (ages 9 and 11) and my husband.

I wasn't too optimistic about the abraxane, because I had progressed to mets originally on taxotere, but have been more than pleasantly surprised. I think I'm still way short of energy (I took Jul and Aug off from work), but can walk (not much uphill), and ride a bike, etc... What was most surprising for me was that I lost my hair - I have very thick hair and never had on taxotere, etc., but there you have it. Baseball caps for the summer!

I'm due to get scans in Sept, so we'll see if the test results mirror the positive change I've been feeling. (I also had bone mets for the 1st time during this period, but I guess we're not considering that progression from treating the lungs per se.) Both areas have been dealt with by radiation.

Kind regards,
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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 11-18-2007, 02:52 AM   #8
newprofessions
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Cool Tykerb and Navelbine

My first posting - I was looking to speak to someone that also has taken these two together, as this is what my oncologist would like me to start next week.

I took Tykerb and Xelota in June for 9 days and it all but did me in - 8 infections and in the hospital for a month. A later genetic blood test found Xelota to be 17 times too strong for my genetics to metabolize, so thank goodness it was only 9 days, because it took 3 months to recover.

I'm scared to try Tykerb again. I had so many bad effects in the short time I took it with the first mixture. If someone has taken this mix in the subject line, could you fill me in on what to expect?

Thank you so much.
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