Mike, that is VERY good news. They will really be on top of your case...and isn't it nice to have a "strange" presentation!!! Seriously, between the interest of the clinicians and the possibility of a really valid clinical trial I think you are in good hands.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
7 years 1 month ago - 7 years 1 month ago#44157by mmc
Great appointment with Dr. Flaig and his team. He would be happy to do talks or something with ABLCS. He's done some with BCAN. His specialty is bladder cancer.
Because my case is so strange, he wants to take my case to a review board. That includes my surgeon doctor, other surgeons, pathologist, etc. They are going over all my scans, slides, etc.
He really wants to get a biopsy to be certain before we start chemo.
My lymph nodes are all in tricky places so it is not a no brainer.
We met with the pharmacist about all the chemo info so we can start asap if chemo is the next step. Four cycles of 21 days each. That's less than 3 months. I should be able to still work and Liz and I can go on our planned cruise in April.
I'm also signed up for a double-blind clinical trial of bevacizumab. Either way I will be getting Gemcitibine and cisplatin. I may get the bevacizumab or placebo. It's been approved for colorectal, lung, and breast cancer already but not for bladder cancer yet.
I told the doc about ABLCS and that I'd be happy to be a case study or participate in grand rounds or help speak to students or whatever. Doctors like talking with folks who understand their disease and can have academic discussions. Seemed he really enjoyed our discussion. I figure that is good for me because if I die we can longer chat. . Just kidding. I have a strange sense of humor.
He will call me after the Tuesday morning review board meeting. I like the idea of a bunch of smart docs in a room trying to be sure of the path forward. They have great bladder cancer docs here.
He understood my desire to be ready for whatever next step gets decided as fast as possible and that is why he linked us up with the pharmacist and the clinical trial coordinator while we were there. We were there meeting and doing things for over two and a half hours.
His quote on that was "when an oncologist loses the sense of urgency, it is time to leave the field".
Overall, good visit. Frustrated that I'm not starting chemo tomorrow and glad to hear that I will be able to work except when I am sick from the chemo.