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Old 07-28-2010, 02:26 PM   #1
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Lapatinib + Xeloda = any hope?

Dear Galina -

You just keep on telling them you are NOT ready to give up and insist that you don't want THEM to give up on YOU.

This baloney about wanting you to "feel well" rather than "prolong your life" is just cost cutting. If you are well enough to hit your mets hard, then keep giving it a try. Worked for me, as you will see in my signature below. I had very extensive liver mets, got rid of them and they have never come back.

I send you hope for the energy to keep after your medical team for a different treatment.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 07-28-2010, 02:28 PM   #2
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Lapatinib + Xeloda = any hope?

P.S. Can they give you more radiation for some of the bone mets?
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
StephN is offline   Reply With Quote
Old 07-29-2010, 02:02 PM   #3
verainlove
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Join Date: Nov 2009
Location: UK
Posts: 24
Re: Lapatinib + Xeloda = any hope?

Dear Steph
You are an inspiration for me as you went through hell and won. But Herceptin worked for you.
Herceptin stoped working for me although I didn't had it long. So did hormon tabls.
I have HER2+++ and if Herceptin doesn't work not much can be done I suppose. I can see their point.
Yes, thank God, I feel well and not going to give up but they wouldn't even listen to me. They have their guesses about the lenght of my life and nothing will make them to change their mind.
I think it's not right cos they try to play God. He alone knows what's going to happen.
I'm greatful for treatment I got and I can't demand any more as it's FREE here(unlike your country).
Unfortunatly I cannot afford private treatment as my husband got rid of me when I become ill leaving me with nothing.Another sad story, sorry.
I have quite spread of bone mets, the worst in spine(collapsed T2), had 5rad treatments for the spine 7 months ago when just diagnosed with secondary cancer. Now I was told I can receive rad treatment for bones just if I have pain.For now I haven't. So not sure if it's good or bad.
Thank you for your kind support.
Praying for you.
With love
Galina
__________________
Dx 11/06 age 60
2.8cm Grade 2
ER+++/PR+/HER2+++
R. mast., 5 FEC, 6 Taxotere, 35 radiation
11 mth Herceptin
while on Arimidex 11/09 recurrence to bones (widespread), liver
5 rad. on spine, 6 Taxotere, Herceptin, Zometa
while on this, progression
Xeloda, Zometa every 3 weeks
07/10 stopped Xeloda - doesn't work
having just Zometa, waiting for another treatment
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