The meeting with the doctor today at Dana-Farber was truly awesome. First of all they are amazingly organized and when your appointment is at 2pm, they call you back at 2pm and you go into the little room and the doctor comes in right away. I don’t know if that is their usual thing, but that is how it worked for us today. And I found out that in Massachusetts, their health information system is statewide. So if you go to a doctor in one town, but another doctor the following week somewhere else, they will both have access to your full medical record. Thank you Mitt Romney, even though you don’t want to take credit for it!!! The rest of the nation could certainly learn from Massachusetts.
For the appointment, first the intern or fellow, doctor came in and went over my history clarifying things as we went through it, which took about 30 minutes or so. Then he went and met with the doctor to discuss everything that we had gone over and the doctor came in and met with us.
Overall what he was able to tell us and go over wasn’t that different from what I already know. We are looking for that T790 mutation and then if it’s not that, then we are either looking for the PD-L1 inhibitor, or (and this part is new) then we look to see if there is some other mutation that has taken place. And he talked about the eventual possibility of clinical trials as well.
What made it so awesome was the attitude. They are more than willing to be a part of my medical team, even if it is long distance. And they are so positive and willing to take a look at all possible avenues to treat me, even clinical trials or new research. And this doctor knows the doctor at Fred Hutchinson in Seattle, so that is an even bigger plus. They have met at conferences and have collaborated on patients before.
At a certain point I was worried that I was wasting my time coming out her, but I do not think so at all now. This was completely worth it in every way. And even though it’s been such a quick trip and I really can’t explore much because I can’t walk far, we had a fabulous “Boston” dinner tonight, a full lobster feast for two!