Hi everyone,

Happy to report that Niko and Eleni Sr. came home to Durham on Wednesday, they had been in LA for 5 days for Niko’s treatment in the clinical trial. Niko had the first part of the clinical trial in December - having a biopsy and a genetically modified virus inserted into the tumor. Now, one month after the virus was administered, Niko started taking 5-FC, an anti-fungal medicine. When 5-FC interacts with the cells infected by the virus, those cells produce 5-FU (a strong chemotherapy) and die.

Niko had an MRI done before he started the 5-FC. The tumor has about doubled in size since the MRI done just before the biopsy, although the doctors at UCLA are not especially concerned about this because it is still relatively small and the Toca511 virus can only fully infect dividing cancer cells. 

One concern is that the tumor is growing downwards a bit (where it will affect motor function more), although it is still primarily growing upwards and into the resection cavity.

Another concern is that there is new enhancement in the area where the biopsy needle was inserted into Niko’s brain.

This is not unheard of but it is not common either. It’s not clear what the enhancement is - it could be tumor cells, scar tissue, or virus. If it’s tumor that would obviously be bad news, but the positive side of this is that the enhancement is continuous with the main mass of the tumor, so if it’s cancer the Toca511 treatment should get the new area of enhancement too. On the downside, if the new enhancement is tumor, it means that stereotactic radio surgery, which was an option in December, would no longer be an option for Niko.

Niko is still doing well neurologically aside from some balance and dizziness issues, but steroids are helping counteract that some.

At this point, the decision is to continue with the clinical trial and 5-FC treatment and we’ll re-evaluate at the next clinic appointment at UCLA. Our next trip to LA for the next round of 5-FC is Feb 9 - 14, so if you’re in Durham and want to stop by to say hi before then we’d love to see you!

Thanks again to all of you who have written to us, come over for visits, and donated to the medical fund - we couldn’t do this without your support.

-Kosta, Niko, Tamara, Eleni Sr.