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Old 05-05-2011, 01:22 AM   #1
Trish
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Re: shortness of breath with Tykerb

I had Tykerb( 5 daily) in combination with Xeloda (4 daily I think) and the side effects (vomiting diahoerrea, mouth ulcers) were so severe I was hospitalised twice with dehydration. I had to stop for a few days each time. It had a very good effect on my liver mets so I resumed at a lower dose (3 /day of Tykerb and 3 /Xeloda). It was still effective for a good while. I am now back on Tykerb (combination below) but only ever take 3/ day and have a few says off every couple of weeks as I get broken skin and very dry eyes, sometimes hand/foot syndrome. It is worth persisting with Tykerb at lower doses if it is having the desired effect on the cancer. I hope your sister is going well, she is lucky to have you on her team,
Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa

Last edited by Trish; 05-05-2011 at 01:23 AM.. Reason: Proof reading
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Old 05-15-2011, 11:24 AM   #2
Estelle
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Re: shortness of breath with Tykerb

I had pretty bad shortness of breath when on Tykerb/Taxol. I was in a clinical trial for taking Tykerb instead of Herceptin in the adjuvant setting (Stage III). It immediately affected by voice, (think raspy like the Godfather), and eventually made me so short of breath that I could not climb a flight of stairs without gasping. I also was very dried out, and developed almost unquenchable thirst. After 6 weeks, I got double pneumonia. All symtoms went away once I dropped tykerb and started on herceptin/taxol. Since I could not tolorate it at the recommended dose for a herceptin substitute I was then given a full year of herceptin. Hope this information helps you.

Estelle
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Estelle
DX 1/09
two tumors; .7 cm and 1.0 cm, same duct
lumpectomy 2/09
10 positive nodes; scans show no further metastasis, Stage IIIc
AC completed 5/09
Tykerb/Taxol (trial) 6/09, terminated from trial (due to bad reaction to Tykerb) 8/09; switched to Herceptin/Taxol
Taxol finished 10/09
Bilateral mastectomy 11/09
Radiation 12/09 to 1/10
Herceptin finished 7/10
NED
Start Vaccine Trial at Hopkins 2/11
Finished Vaccine Trial 11/11
Continue NED
Port Out 11/11
DEIP Flap 4/17)
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Old 06-24-2011, 10:34 PM   #3
pamuk
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Re: shortness of breath with Tykerb

Thank you so much for your responses. Sadly my sister passed on June 10th. May I wish you all the very best. I am in awe of the courage and dignity that I have found in this community.
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