Message from A CS Warrior: David Bowles

Hello fellow warriors….well some good news for all of us: I spoke today via video with a doc whose advice I get every 3 months when my CT scans are done, Jonathan Trent MD, Ph.D. (how’s that for qualified??) He runs a clinical trial for CS which has been going for years and gives me updates on things there and elsewhere. I am not in the trial but take the drug (Tibsovo) independently. Two takeaways which are significant;

1. In his trial, fully 70% of those with conventional CS (Grades 1-3) taking Tibsovo have gone into stable disease, or…partial remission. The latter after 18 mos to 2 years on the drug. I don’t believe the PR results have been published yet.
2. There is a new drug in development: it is based on a TRAIL drug (dulanermin) from Genentech which Dr Trent used on a patient some time before 2012, and which put that stage 4 patient into complete remission/no evidence of disease. The abstract for those of you who love dense academic articles, is here: Targeting the apoptotic pathway in chondrosarcoma using recombinant human Apo2L/TRAIL (dulanermin), a dual proapoptotic receptor (DR4/DR5) agonist – PubMed (nih.gov)
   Fast forward to today: Genentech never moved forward with that experimental drug, but someone is taking it and re-developing it for chondrosarcoma. It will have dramatically less side effects than dulanermin, but essentially work the same way.

Bottom line: a new drug is in development which might cure CS. Lets all hang in there, if we can….help is on the way!