Well I finally met with Mark Agulnik at Northwestern University Hospital this past Tuesday. My father went with so it was a nice road trip and I believe it also helped him relax a bit more about the situation and it was a nice bonding experience. Not to mention we bitched about the Packers and Aaron Rodgers being injured. I’m not a fan of Chicago so all I can say is downtown traffic sucked and the parking ramp was 45 minutes of hell. The hospital itself was really nice and modern. Basically, the appointment was a meet and greet. We did go over the situation and learned some family medical history from my father. They mentioned if my family had been diagnosed with Li Fraumeni Syndrome. I’ll explain what that is in a later post. Mark is basically one of the main Angiosarcoma specialists in the Midwest region. I did feel like more of a number than a person but he is the guy you go to when all things have failed and you want to get shoved into a clinical trial. He did say that my current game plan is right on and what he would’ve suggested to start with. He does have 4 clinical trials but wouldn’t remove me from my current plan. His 4 trials wouldn’t fit my case either because I do have the 2 blood clots and bleeding issues in my lung. Nonetheless it was informational and reassuring to know that the choices I have made in my own treatment has been pretty much right on. I did ask for a list of possible chemotherapies if the current one is a dud to which I don’t believe it is. Here is the list:
Regorafenib (this will be my next step personally)
Clearly, I have a lot of research ahead of me. I did ask his opinion of surgery if the tumors in my chest shrink enough. He didn’t think it was and option at all. I get that from certain doctors. I’m a real risk taker so I’m always on the look out for a surgeon. I understand I’m in a 99% lose situation but I was that way in 2008 too. So the original idea was to shrink it and contain it for as long as possible unless I find a super skilled surgeon willing to take a huge risk. Its different for every doctor. Luckily, I have two surgeons I’m dealing with already. Tracey Weigel in Portland, ME and Raja Flores in NYC. Two of the best thoracic surgeons in the country.