I was away all week, Mom had her head MRI on tues (it was one of those extra magnetic MRI'S not the basic one that your average hospital has)
Thurs. was bone/ct scan
Neurosurgeon called me and said there are several new tumors shown that are very small, I asked where are they he said through-out, I than asked how many he said he didn't count. He spoke to the Rad who did the G.knife with him in March they said poss do WBR again or this intrcal chemo therapy. I will call your Onc let her know and repeat MRI in 6 wks. Report is also saying poss leptomengeal.
Onc calls me and wants to know how to present to my parents I don't have very good news for you...
bone scan 2 spots rt arm and lt femur/hip showing poss future fx I asked are they new and she said we never did a bone scan so nothing to compare?? (I was confused and didn't ask her this, but because how did we know when 1st dx she has it in the ribs,pelvis &spine) ct also shows some have grown. So she laid it all on the table our options all what neuro suggested and changing tx to tarceva if anything and if she wanted a lumbar puncture to confirm lepto.
Needless to say how I was how to inform her how to tell my parents and how they were when they got the thurs. night call!! Mom calls it her death sentence phone call :( She is opting no more surgeries, no more needles no more guinea pig let me go in peace!!!
I have been trying very hard to get tissue sent to MGH, however having a difficult time through the whole process and they don't know the latest yet.
Dad called me up and was perky got in the mail report/discs of scans (we always have my friends head rad at another hospital review them) Dad said the report in not that bad yea some grew but by one being 3.7cm to 4cm and the head is showing like almost non readable.
So Mom may consider tarceva. Want to get tissue out immediately to MGH through.
Do we send ROS1 out and get results in 2wks or opt for snap shot and takes up to 4wks and has to be seen?