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Nancy L · 07-29-2009, 11:36 AM

I am ER- PR- Highly HER2 positive (20.2 Fish score) with mets to the neck so my breast cancer is different than yours. I am only on Herceptin/Tykerb so I will try to answer your questions.
1) Started 3/14/09 at 1000 mg/day. Reduced to 750mg/day as of 3/24/09
2) Experienced severe hives all over body after 7 days. Stopped Tykerb for 3 days and then restarted at reduced dosage. Rash on face lasted about two months—looks like acne. Chronic diarrhea and fatigue which I don’t think are going away. Shortness of breath and chronic cough which the docs do not feel is a side effect of Tykerb but rather inflammation of my lungs.
3) Immediately
4) I take 150mg Zyrtec, 150mg Zantac, and lomotil almost daily. I am also taking Prednisone for my cough. Steroids in general make one feel better so that may factor into how I am doing.
5) See #1
6) See #2
7) Pet Scan 12/15/08 1.5X1.2cm with a max SUV of 3.3
Pet Scan 3/9/09 2.2X2.5cm with a max SUV 6.3
Pet Scan 6/1/09 1.2 X1.2 cm with a max SUV 3.0
(tumor markers do not work for me so I will continue to get Pet scans every 3 months---next one scheduled for end of August)

Tykerb is a much harder drug to tolerate than Herceptin. There is very little data on how this combo is working. The longest I have heard is one year---not what I would like but at least I know. Dikla, please keep me posted on how you do and I will do the same. If you have other questions, feel free to e-mail me at nana@lamarca.org.

07-29-2009, 11:36 AM	#2
Nancy L Senior Member Join Date: Apr 2009 Location: La Quinta, Ca Posts: 253	Re: herceptin + tykerb (no xeloda) I am ER- PR- Highly HER2 positive (20.2 Fish score) with mets to the neck so my breast cancer is different than yours. I am only on Herceptin/Tykerb so I will try to answer your questions. 1) Started 3/14/09 at 1000 mg/day. Reduced to 750mg/day as of 3/24/09 2) Experienced severe hives all over body after 7 days. Stopped Tykerb for 3 days and then restarted at reduced dosage. Rash on face lasted about two months—looks like acne. Chronic diarrhea and fatigue which I don’t think are going away. Shortness of breath and chronic cough which the docs do not feel is a side effect of Tykerb but rather inflammation of my lungs. 3) Immediately 4) I take 150mg Zyrtec, 150mg Zantac, and lomotil almost daily. I am also taking Prednisone for my cough. Steroids in general make one feel better so that may factor into how I am doing. 5) See #1 6) See #2 7) Pet Scan 12/15/08 1.5X1.2cm with a max SUV of 3.3 Pet Scan 3/9/09 2.2X2.5cm with a max SUV 6.3 Pet Scan 6/1/09 1.2 X1.2 cm with a max SUV 3.0 (tumor markers do not work for me so I will continue to get Pet scans every 3 months---next one scheduled for end of August) Tykerb is a much harder drug to tolerate than Herceptin. There is very little data on how this combo is working. The longest I have heard is one year---not what I would like but at least I know. Dikla, please keep me posted on how you do and I will do the same. If you have other questions, feel free to e-mail me at nana@lamarca.org.