Update Xeloda/Tykerb

[julierene]

So I still get frequent runs! But after 3 months, the tumor has shrunk in size by 30%. The thing I wonder about is that it appeared to be scar tissue for about a year. Could the whole thing be active tumor or part scar tissue? When it started growing again, the onc said it looked like an hour glass shape. I thought how strange that was. It almost seemed like there was just something alive in there that finally broke through and started growing outside the dead tissue. Has anyone ever had anything like this happen?

Should I push the onc to add Herceptin?

OH! And my MUGA went from 53% in Dec 2006 to 64% in July 2007! I even stopped taking the Lisinopril (ace inhibitor heart medication) in April! Maybe getting out of my stressful home situation in May helped my heart too! :)

[Joy]

I am very happy to hear your news and do not have answers to your very good questions and I want to know too what was going on in there. How great to have tumor reduction AND a healing heart. Getting off of a drug is good thing. I think you are absolutely right in saying that getting out of your stressful home situation helped your heart, becasue it did in so many ways. Hope you are keeping it all together!

[chrisy]

That's great, Julirene!

My interpretation (and of course I'm not a radiologist!):) is that what was showing was mostly scar or necrotic tissue, but there were a few viable cells in there and then they started growing again. Who knows.

If the Tykerb is working, and your EF is improving (mine did, too) why are you thinking to push for adding Herceptin?

There is concern with Tykerb about heart toxicity, although in my experience it has seemed to be less than Herceptin. Since yours was pretty low, I'd be concerned about getting a double whammy and having it drop again. There are trials ongoing but not much data yet to look at the combined heart toxicity of the two.

I agree, environments and situations can be more toxic than the drugs.

I walked a lap for you in the relay for life - Hope things continue to move in a good direction for you.
Much love
chris