a big thank you and some neuroses

[Joy]

Thankyou, thank you, thank you so much for all of your kind words and great thoughts. I have made notes for my onc visit on Thursday. I am excited to see some creative approaches that have been mentioned by some of you.

To answer a question, I had met with a interventional radiologist in the spring and they had, at that time, ruled out RFA due to the number of tumors (and possible locations/sizes-if I remember right). Also we had collectively discussed SIRspheres. The concern with that was that due to past tumors and treatments there is some cirrhosis and the SIR spheres can afffect healthy tissue to some degree. We were being cautions about that. None of these were ruled out forever, but for now I am thinking these are not too realistic. I am curious about Cyberknife and have begun looking at that. I may not be currently eligible, but possibly the future. I appreciate the suggestions that brought this back on the radar.

I stayed up too late in a crazy emotional state last night researching and overthinking. You all know what a great combination all that is. I have been curious about a biopsy as I am worried that the HER2 status may have changed. I have had a lot of herceptin over time and tykerb. We tried the DM-1 and it isn't working either, so maybe that receptor status is now negative. Then I started thinking that maybe my hormone status has changed from positive to negative as well. Then I started freaking that I might be a triple negative after being triple positive all of this time. Is that at all possible? Could all 3 have flipped? And is resistance caused by the flip or is it sometimes another change that fuels resistance? This is what ran around my head most of the night. The idea of losing 2 big families of options is really frightening to me. What are the odds, for real?

Then I was wondering if I had done something to interfere with the DM-1 to make it less effective? I don't know what exactly, but I am willing to entertain that. And I have to call the coordinator, but I am assuming I will be pulled off trial. I mean would it be silly, even if possible, to give it a smidge more time? Actually, now that I'm rambling I don't want any more progression so it probably would be silly. SEE how crazy I am?

Again, for all of you smart people here, I would love any insight into the odds of triple pos becoming triple neg. And anything else you have come across. I am still doing research on my own and I am good at it, I just don't want another bleary, teary-eyed, heart palpitatey night. I don't want that for any of us. I don't want this disease for anyone. I am feeling like a 9 year old whose favorite phrase is, "It's not fair."