[chrisy]

Ha Ha - you probably think now that I have a ton of time on my hands! But really, I just don't want to go make sloppy joes.

Thought I'd share a little more detail on my experience in the TDM1 trial.

Sometimes choices really are windows opening when a door has been closed.

I had progression after 8 months on a Tykerb/Avastin trial. Needless to say I was bummed. So I'm sitting there with my rockstar oncologist and ask her "well, what now"?

She starts rattling off combo after combo after combo...before saying "or there's yet ANOTHER trial". It was the TDM1 trial that I had been reading about but was not open at UCSF. Yet. But it was in the process of opening there JUST as I needed it. Coincidence? I think not - that's what I mean about windows and doors...

Anyway, I had my first treatment on Feb 11 2008. In that trial, the first infusion is pretty much an all day affair. They infuse over 90 minutes, monitor your vitals and take blood samples over the course of the treatment and for 4 hours afterward!

Side effects are mainly like herceptin only a bit more intense. After my first infusion I got a fever and mild flu like headache, still get that but milder and easily controlled with an advil. Most people have a drop in platelets (which rebound quickly) and many people have elevated liver enzymes.

I had a really wacky side effect, 2 days after my first infusion I had extreme pain in my liver (I, too, had liver mets). So much so I could barely breathe. This lasted a few hours and that was that.

I chose to believe that pain was screaming cancer cells dying. I don't know if that's what it was, but my first scans after 6 weeks showed the major areas of interest reduced by half in size and metabolic activity. And the minor areas that had begun to "light up" were gone. After a few months, they could not see any evidence of metatstatic disease.

My main side effect has been elevated liver enzymes - this made me have to go to a 4 week instead of 3 week schedule. I found a liver cleansing diet with the main elements being beet juice and carrot salad which has worked well and keeps me in the "treatable" range.

I met the lead doctor on the study at the San Antonio Breast Cancer Symposium last December. She told me I should have stood up in the crowd when she was reporting the results and shouted "hey, that's ME"...but I'm just as happy being a quiet beneficiary of this exciting new theraputic approach!

Ok, I PROMISE I will shut up now!!!! I just felt that since I had personal experience with several of your questions, I had to pipe in.

Take care, let us know how it is going with your friend.
Chris