Questions to ask at new consult tomorrow AM (and future ones)? Also info on clinical trials? Other MO's you like?

[Barbara345]

Hello and thanks, I'd love to improve my list of questions for consult. I've researched hard, but value your input, wanting to do best. Husband Barry has mcrpc, diagnosed last August, Gleason 9, extensive bone mets on diagnosis and spreading (all over pelvis, spine, ribs, a little on femur, humerus and spot on skull). Resistant to docetaxel first and then to Xtandi (confirmed by scans). Now on Cabazitaxel plus Neulasta, had 2 treatments. PSA increased (might be flare, might not). No side effects docetaxel; miserable on Cabazitaxel. Still on Lupron and Xgeva. Second cabazitaxel delayed a week due to high AST. Alkaline phosphatase is 379; current AST 93. PSA 46. He's anemic; WBC okay. Foundation One tests showed ROS1 fusion in liquid biopsy, not confirmed in solid; FMI is working with me on this. Germline testing negative.

CONSULTS: With Dr. Sweeney at Dana Farber tomorrow; consult with Dr. Drake in the works. Mercifully, by telemedicine. Other MOs that you like?

As I mentioned before, I'm also looking for excellent MO, and hope to find one open to looking at or at least supporting clinical trials/treatments in other facilities as well as their own if best for Barry, although will consider others as well.

[Tall_Allen]

I don't think it matters much which MO you talk to, as long as you talk to top ones. Sweeney and Drake are excellent. They all know one another and know what the others are working on. As long as they are sufficiently humble that they will reach out to their colleague, it won't matter much. Of course, they each have their pet clinical trials, but I've found they are aware of the important clinical trials that their colleagues are investigating. MD Anderson, Johns Hopkins, SCCA, MSK, the Harvard hospitals, and NIH probably have more clinical trials going than some of the others, but any NCCN or NCI facility is good.

[abmicro]

Cabazitaxel is rough. I had to stop after 4 rounds, but it worked well.

[Rexwaterbury]

Your husband appears to be in the same clinical situation that I am in unfortunately. Having just failed lu/ac, I am now in search of a systemic treatment that will help with my numerous bone mets. I see Dr Drake, and he has many clinical trials going on at Columbia. The one he is most excited about for me is the bispecific trial by Harpoon. Very inconvenient though as it requires weekly visits. He has rarely suggested a clinical trial offered at another institution. Please let me know what recommendations he has for your husband. You can personal message me at anytime.