anyone with info on Sex Cord Stromal Testicular cancer?

[notsolucky]

Hi all, I'm brand new to this site as my boyfriend was diagnosed in the beginning of June with Undifferentiated Sex Cord Stromal Testicular Cancer, he had an orchiectomy a week after the visit to the doctor, but they found that the cancer had metastasized to this lungs. It is extremely aggressive, and within a week, when they went in to try to cut them out, they were inoperable.

It has taken almost all of his right lung. He's on an experimental treatment of Votrient (pazopanib) to see if it will slow down the growth of the tumors. The oncologist has told us repeatedly that there's no information out there, no doctors who know enough, no specialty because it's so rare, so I thought I'd see if anyone on these forums knows anything? I've combed through research papers and medical journals online, and it does seem the information is scarce. We've all accepted that there isn't much hope for recovery, and that if the Votrient doesn't work in the next few weeks, he'll be put on an extremely aggressive Cisplatin or other Platinum chemotherapy which probably won't work. But I just can't give up hope that there's not more information out there, some other doctor or research that can help. Any information or support would be greatly appreciated.