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Old 01-09-2007, 05:58 AM   #1
IRENE FROM TAMPA
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Location: TAMPA, FL
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I Have A Question -

I have been on the Tykerb/Xeloda trial since August/2006.

I have the normal side effects of loose bowels and hand/foot from the Xeloda.

A couple of months ago I started experiencing a lot of dryness in my nose and the worst is my eyes are extremely dry. So much so that it is now affecting my job. I have lots of blurring when I try to read something, especially at work which I assume that all of the florescent lighting does not help.

I had my eye doctor check my eyes and he says I actually have flaking on my eye balls from the severe dryness.

I was thinking that all of this is from the Xeloda but now am wondering if maybe its coming from the Tykerb. I never had the nose/ eye thing before when I took Xeloda.

Has anyone on this trial experienced any of this. I am really getting very fustrated with the eye thing. I can cope with everything else but the vision problem is really irritating. I am on all kinds of eye drops and my eye doctor has suggested maybe plugging my tear ducts to see if that helps. I have added a glare screen to my computer, put a lamp on my desk, had my boss taken out some of the flourescent lights over my head, all to no avail.

Just wondered if anyone has had this problem and what you did.

Thanks
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Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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Old 01-09-2007, 08:17 AM   #2
Sheila
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Irene
I have extrememly dry eyes from the Xeloda, to the point where they continually water trying to moisten themselves...I don't go anywhere without a kleenex. The cold air makes it worse. I also have a very dry nose, especially on the inside corners of the nostrils...since the nose thing strted and the eye thing worsened when I started Xeloda...it must be it. I have not taken Tykerb.
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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 01-09-2007, 01:04 PM   #3
IRENE FROM TAMPA
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Thanks Sheila

I have the same thing with the nose but my eyes are not tearing this time. My vision is very affected making reading very blurry. When I was on Taxol I had the tearing eyes like you stated.

My lids literally stick to my eyeballs. It must be the Xeloda. I wanted to see if anyone else had the same thing happening since I don't know which way to go with this with the drugs and the doctors don't seem to know.

I am almost sitting in the dark at work trying to avoid glare.

Thanks for your response. This helps
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Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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Old 01-09-2007, 03:01 PM   #4
Shell
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Irene-

I was on tykerb w/ xeloda for 5 months, and I didn't experience your issues with the severity you have - I wear contacts and was able to keep wearing them. However, my eyes on different chemos have often gotten blurry, and sometimes I need reading glasses, but other times not.

I am thrilled things are still working for you - best of luck!

Kind regards,
Shell
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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 01-09-2007, 04:38 PM   #5
rinaina
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Irene, my eyes were very affected from my chemo txs...A/C 4 dense doses and have not fully recovered yet and chemo ended the end of July. My eyes, which are normally somewhat dry due to my Sjogren's Syndrome, (auto-immune disease), because so dry that I did have plugs put in and my cornea became badly abraded due to the severe dryness. I had blurriness from after my second treatment until this past September. It was awful and scary. I could handle the dryness aspect but the blurriness drove me crazy. It was so bad for the entire last 3 treatments that I was afraid to drive. I could not read most of the time and even watching tv became unenjoyable. My eyes are better now but not 100%. They still get very dry and at times but not to often I have slight blurriness. My opthomologist said it is due to the dryness and how it has changed the surface of the cornea. I use artificial tears and a prescription drop as well to keep them lubricated. I also keep getting a calazion on my left eyelid, which is similar to a sty. I feel your frustration and worry. Good luck to you. I also feel that even though they say my vision is still the same, I don't see as I use to.
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~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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