My son, Bradley, was first diagnosed with a synovial sarcoma - poorly differentiated sub-type, on April 17, 2015. A CT of his chest also showed a couple spots on his lungs but they were so small they weren't certain what they were but were suspicious of course. Every 3 weeks he went thru 3 days of continuous chemotherapy of adriamycin and 8 hours each day, ifosfamide. After 6 rounds of this, the primary tumor shrunk 40% and there was no change in the spots on his lungs, not smaller nor were they bigger. The end of September 2015, they amputated below the knee. His 3 month follow up CT of the chest was in November, it showed a dozen spots now and 1 very large one in his left lung. He then went thru 3 cycles of taxotere and gemcitabine. The smaller spots remained the same but the largest one grew to over an inch and a 2nd one also crept up in size. Now we are meeting with a surgeon to have the larger ones removed. They are also testing his cells to see if he is a candidate for immunotherapy. Ifosfamide may be used in the near future...again, as well.
Good luck with the immunotherapy trial! It's a good one but many people don't have the proper HLA type to be eligible. Hopefully your son does!
What about Yondelis?? Worked great for me.. had also poorly differntiated cells
Update: no clinical trials available at the time, brad failed the last one. Currently looking at starting votrient next week. Going to discuss yondelis as well. Searching the country for other trials available. Brad has at least 2 dozen nodules, 5 are larger, biggest is 9 cm. He has no symptoms whatsoever at this time. They say tumors are not ideal for surgery due to location, the plueral lining of his left lung continues to thicken. We are very scared. He’s failed 5 chemo drugs, 1 biologic agent thus far. The tumors continue to grow. Any studies accepting patients that you know of, please share.
Which drug did he try beside doxorubicin, ifosfamide, gemcitabine and taxotere? Which biologic agent?
You can find information about different trials on clinicaltrials.gov. I do post the ones I find interesting here:
How old is your son? Dana Farber in Boston has a tumor profiling trial. May be more information on the tumor could help make a decision on treatment:
the 5th chemo was temodar and the biologic agent was BMN 673. Brad is 17. Sloan Kettering and U of M are working together searching for other trials across the country that he may be a candidate for. Thank you for the info I will check into it all.
Thanks for the additional information. Good luck to Brad! He is in a tough situation. I do hope they will find something suitable for him to try. Otherwise, it’s always good to get second or third opinions…