Experience with Tykerb
 

My wife is currently in a Tykerb clinical trial. She has been on Tykerb for about 18 weeks. The results are good. The brain mets are stable with some being reduced in size.

By all means...keep us updated.


Regards and welcome to our group.
Joe

I am also on a clinical trial with tykerb - the xeloda with or without tykerb - they ended our trial early so we could all get the tykerb, and I've been on the trial for just over a year, and tykerb for about 9 weeks - will get re-scanned in august, and am hoping for the best...


Shell

Any side effects? MJo

Tykerb side effects
 

Slight rash on shoulders for the first week, diarhea for the first two weeks.

Where are you?
 

Great news to hear.

My wife has leptomenengeal disease (cancer in spinal fluid affecting the surface of her brain). We are about to start treatment and would like to get Tykerb. We're in NY on Long Island. I got leads from GSK and her onc is pursuing trial at MSK in NYC for us w/ Dr Monica Fornier. Next closest sites are Boston and Philly area.
No ESP sites here yet that I know of. Anyone have different news for Long Island area?
Thanks,
Maryann & Ken

We live 35 miles northwest of Pittsburgh. We started the clinical trial at Georgretown University Hospital in DC then transferred to Hillman Cancer Center in Pittsburgh.

Both a little farther than we'd like but just in case we hit roadblock locally, can you provide contact info for the folks working with Tykerb at Georgetown Univ Hospital in DC?

Thanks, Maryann & Ken

mkrny - where on LI are you?
 

I too am located on Long Island. I go to Dr. Lora Weisleberg at the Monter Cancer Center (used to be at North Shore University Hosp in Manhasset). I don't think they have any ESP for Tykerb at there yet.
--Cathy