Due to the system change here, all prior discussions seem to have been closed to replies. I hope "sleepless in jersey" notices this re-posting of her question.
Back on 6/27/2012
"sleepless in jersey" asked:
I have just been informed a tad about you and how you go to Dr. Shaw wondering if I could get some info or is your info on the forum that you could just direct me so you wouldn’t have to repeat?
My Mother is negative on EGFR and I assume with the rest since the Onc says neg to everything. She has recently started her 5th line of chemo and trying to look at the glass half full with this new TX, however it looks like it mostly used for SCLC. Looking forward from hearing from you!
Sorry I didn't see your question before. I don't check for messages here often enough & I haven't figured out any way to be automatically notified of new messages in particular category. "hopeforamiracle" said they tried to get my attention, but I didn't receive anything.
Your mother has adenocarcinoma that is negative for "everything"? That has meant different things to different doctors in different years. If you called your oncologists office, any nurse there should be able to tell you what specifically was tested. You said EGFR, but what about ALK? ROS1? KRAS? If negative for EGFR, ALK, and KRAS, I'd recommend you ask your doctor about testing for ROS1 (especially if a never-smoker even if not yet tested for KRAS, but even some smokers have a small chance). There are also other possible driving mutations that might be useful in clinical trials if she could travel to those and is fit enough to be eligible. (There's more than 100 mutations, but few that are potentially useful.)
BTW, I may have met the person in your picture in the past, but let's save that for a private discussion.