We just found out yesterday that Trabectedin has stopped working for our daughter. We were blessed to get 7 months on it. It got her through graduating high school and starting college. Doctors are discussing next options. Initial thoughts are either 7 day ifos, Gemcitabine and Docetaxel or the Aldoxorubicin trial. Can anyone please provide some information on their experience with either of these options? Any other options, please? We have also tried the MORAB trial and Pazopanib and she did not qualify for the NY ESO trial due to tumor testing. Hoping we can find something that will keep us moving in the right direction. Thank you. Trish
The results of the phase 2 trial for aldoxorubicin looked rather promising:
High dose ifosfamide is also a good option.
Gemcitabine and docetaxel, not so great for synovial sarcoma...
No info but you are in my prayers.
Trish - I just attended a lecture presented by my husband’s physician, Dr. Seth Pollack at the University of Washington. My husband was the first in Seth’s t-cell immunotherapy trial, which did require the NYESO gene. I bring this up as he mentioned several trials that are in the works, but they are taking time. It might be worth getting in touch with him to see if something is coming up that would be applicable for your daughter, and how to fast track wih regulators. In my mind, this is the biggest challenge we are facing in bringing trials and treatments to market. I can only imagine how you feel right now with the list of options, and hold much hope for your daughter.
Thoughts are with you,
I'm sorry I can't help you with any advice, I live in the UK and treatment seems to be a wee bit different here, I just wanted to send you my love and hope things were out for you all.
Some other trials you may want to look into:
avastin + HDAC inhibitor for patients with measurable disease defined as at least 1 lesion ≥ 1cm in the greatest dimension:
HDAC inhibitor + Gemtax:
Aurora A kinase/tyrosine kinase inhibitor:
votrient + C-Met inhibitor:
Thank you everyone for your responses. I appreciate all the input. We continue to discuss options but will make a decision within the next day or so. All the best. Trish
HI - sorry to hear the treatment is no longer working. I tried adriamycin and ifos and high dose ifex. Both gave me approx 5 months of being tumor free. I have been on votrient for the last 6 months and it's shrunk and got rid of one tumor. I thought there was another treatment option in NH that was an immunotherapy treatment. The name slips my mind right now. I didn't have the proper immune system type so I didn't qualify. Hope this helps and good luck with your daughters next treatment. I wish you all the best.