herceptin + tykerb (no xeloda)

Miriam · 01-05-2010, 06:26 PM

I started on a Tykerb and Xeloda program about five weeks ago. After two weeks I had to stop because of the diarrea and mouth sores. Long story short my husband saw that something was wrong and called the ambulance. I was in a comma for three days and know nothing of going to the emergency room and hospital. My ammonia count was 150. If it wasn't for my husbands quick action I wouldn't be here today. I had just come from the clinc that day where all they want to do is hydrate when something is wrong.
So have someone watch you closely. If you become disoriented go to the hospital ASAP.

I came down with breast cancer in 2003. Had lempectomy, chemo and radiation. Then a year on Hercesptin. I was clear until July of last year and then my tumer count stated going up. It had spread to my liver and lung.Took Taxol and the tumor count came down from 1300 to 57. Then started going back up 259. So then the Doctor stated me on Tykerb and Xeloda. That just about took my life. So now I just started on Tykerb only. 1250mg. I have been on Herceptin for nine months already.

Miriam

cecw · 01-07-2010, 01:57 PM

taking Tykerb 1500mg daily since may 08 no significant side effects occasionly diarrhea. A little tired. heart function numbers going down but not in bad range. Maybe the combination is the problem. I was told by trial doc that tykerb crossed the blood brain barrier while herceptin did not. Does anyone know if this is true? Best to all Cecw

Miriam · 01-07-2010, 02:25 PM

Cecw,
That is a long time to be on a Med. What are your results. Is it doing any good or just making the Drug Companies richer. Tykerb cost is outrageous.

Miram

cecw · 01-07-2010, 06:40 PM

Miriam don't know how its working. part of alto trial Hercptin with Tykerb in different combinations or either one alone as first line treatment so drug is free. Had masectomy 2 10 09 her2+++ 5 of 14 lymph nodes positive. Everyone on this site seems to be getting scans. I've never had any how do they know it's not already spread? Docs tell me it isn't anywhere else. How do they know? When do people usually get their first scan? Best Cecw

Miriam · 01-07-2010, 07:23 PM

Cecw,
I've been on Herceptin since January with Taxol. Worked great until my tumor count went down to 57 then started back up nearing last Taxol treatment. So the Doctor started me on Tykerb and Xeloda which was a disaster. So now it's just Herceptin and Tykerb. I get a scan every three months.

Miram