[phil]

More thoughts , info - Lorraine reduced dose to 3.0 back in 2011, after 7 doses at 3.6. low plats . still worked well. we get regular breaks , usually due to low plats. last week we delayed tx due to bilrubin of 1.6, over level of 1.5 in study rules . its liver irritation from the drug . but we like to take weeks off. we are in it for the long run, preserving bone marrow, liver . this week MGH infusion is full due to holiday , so we will go to next week. that will be a 5 week break . Loraine has had 38 doses total , starting in Nov. , 2010. To give you an idea - last dose was 8/8/13. previous dose was 4 weeks back , 7/11. dose before that was also 4 weeks - 6/14. 3 weeks before that .
we plan on staying on strong a dose as possible , watching physical s/e, for as long as possible . until something better comes along. we stay on the study for now , becuase they work w/ us, and Lorraine likes the security of the familiar. even she is now thinking more and more about leaving the study , if our hospital will give us more flexibility . we will check that out very carefully before we go. we want to keep a safety net level, hoping to prevent any mets, any brain mets in particular.
Genentech monitors these boards , so here's a message to them " Love your drug , and appreciate the flexiblity , personalized tx., but we want more flexiblity , based on these great responses " . Thanks . So , God continue to Bless you all - ALWAYS be the " Squeaky Wheel ! "