HER2 Support Group Forums - View Single Post - Any input on the Tykerb trial is greatly appreciated

IRENE FROM TAMPA · 12-03-2006, 08:45 AM

Hi Cathy

I started in the trial in late August and so far have remained stable (which is good) I will have my second set of scans since I began in January to see what is happening.

My onc started me off on the standard dosage of Tykerb daily (5 pills daily) and 3000 mg of the Xeloda. I developed very uncomfortable stomach issues at first so we decreased to 2650 mg of the Xeloda. My issue now is the hand/foot syndrome. The bottoms of my feet are very sensitive and my skin burns and my fingers tips are somewhat dumb (I also drop things like Sandy said) and they start to crack which is painful. Just apply lots of creams and if you should happen to have this.

These are all things you can live with, just a bit uncomfortable so you have to adjust your everyday life to it. But if the combo works for you, I would say it is worth it.

My blood levels are always good and have no other side effects. My hair is growing again so no hair loss with this combo. All in all its not too bad as chemos go. I feel good and am fortunate to have good energy.

Hope this has helped you but if you have any other questions please feel free to contact me.

Good luck to you and hope you can get started soon.

12-03-2006, 08:45 AM	#6
IRENE FROM TAMPA Senior Member Join Date: Oct 2005 Location: TAMPA, FL Posts: 568	My experience with Tykerb/Xelod Hi Cathy I started in the trial in late August and so far have remained stable (which is good) I will have my second set of scans since I began in January to see what is happening. My onc started me off on the standard dosage of Tykerb daily (5 pills daily) and 3000 mg of the Xeloda. I developed very uncomfortable stomach issues at first so we decreased to 2650 mg of the Xeloda. My issue now is the hand/foot syndrome. The bottoms of my feet are very sensitive and my skin burns and my fingers tips are somewhat dumb (I also drop things like Sandy said) and they start to crack which is painful. Just apply lots of creams and if you should happen to have this. These are all things you can live with, just a bit uncomfortable so you have to adjust your everyday life to it. But if the combo works for you, I would say it is worth it. My blood levels are always good and have no other side effects. My hair is growing again so no hair loss with this combo. All in all its not too bad as chemos go. I feel good and am fortunate to have good energy. Hope this has helped you but if you have any other questions please feel free to contact me. Good luck to you and hope you can get started soon. __________________ 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."*