Haha Sassy, I think you meant WHINEY the pooh! And Bill it figures you'd like the avatar where my hubby has me in a stranglehold!
Maybe I can get him to strangle NED for Sheila if he ever shows his face again.
Kris - you're never boring, your're beautiful and inspirational. You just don't know how to spell.
Seriously, thank you all for the great questions, ideas, input and grace. Lots to think about, for sure - I'd like to respond to some of them below:
ElaineM/DonnaD/Catherine - good thoughts on the "weakness" - not sure how to explore that, but it reminds me of the "environment" theory - making my body less hospitable to canser....so yes, more beet juice. And pixie dust. Etc.
As one step, I'm considering a consult with Dr. Keith Block in Evanston to help me get a better handle on some of the nutritional and supplement issues if I'm going "off study". It can get overwhelming
Jackie07 - Thank you for your comment about the missing safety net. It gave me tears and hope.
Lori R, Missyw, Kim - I may PM you if localized treatment is an option. Lori, good you have no regrets - don't give those thoughts the time of day. Keep your eyes forward! Kim, I got info from you years ago on this...may be back for more!
Tumor markers? - They have never been much use for me, thus none of my dr's really rely on them for me. But is worth revisiting as another way to monitor - I've had enough scans to light up a whole city for years...
Pertuzumab - Yes, that is/has been on my radar. Mark Sliwkowski at Genentech who I consider the father of TDM1, has been involved in its development and is very excited. I'm excited about interrupting the Her2/Her3 pairing, which Pertuzumab may do, especially in combination with Herceptin or Tykerb (or TDM1). It is probably a "future" option for me as it is not approved and I don't qualify for any trials. There's a nice one with randomised Herceptin/Xeloda or +Pertuzumab but it's not offered in the US.
Are we SURE there's progression? Sure looks like it. Dec scan was a hint, April's showed more definition, growth (1.5cm now 2.5cm) and PET lights up more - so it's probably not just scar tissue.
Localized options - I'm interested in pursuing if I'm a candidate for this. Not possible to do as a "break" in TDM1 study because it would be treatment of progression, not a side effect or something else. Would probably need a break anyway as lately my platelets have been low - not a good mix with any type of surgery! If it's an option, I'd say this is my window and then back it up with a targeted combo like Herceptin/Tykerb. I'll hold off worrying about the insurance battles for all that until it's time.
Overall, I'm accepting of the idea that it's just time to move on from TDM1. With or without progression, it has been getting increasingly tough on my liver. If it were FDA approved, I would have probably already taken a break, knowing I could restart. It would be a one way ticket for now but in the long run may be a necessary step. One door closes...another opens.
Finally - Flori, flori morning glory...I dunno, that Michael Kors seems a bit of a trollop - making himself available to you for a flash of plastic without any prior preparations....but sometimes tramp trumps flake. And try not to worry your pretty head with your scanic attack - you know there's nothing in there to worry about.
I think I will have more questions as more information comes available...thanking you all in advance for your support and prayers!
Sigh...canserland - crazy world we pass through where progress is bad and "negative" is positive...and cure is STILL not promised but belief in one is still possible (soon, I hope)
Love to all
Chris