Update on treatment options as of May 13

We are still in a bit of a holding pattern regarding the next course of treatment for John. One thing is clear though we will not be heading to Duke this weekend. The current batch of trials underway there are not pertinent, yet, for John.

When we started reviewing Phase II/III trials at other centers  there were  about a dozen potential trials. A large number turned out to either be closed to new recruits or John, due to a combination of factors, was not eligible.

For a trial at Northwestern, we are waiting on the results of tumor testing. That will take approximately two weeks. This trial,  is for patients with particular mutation in the tumor's FGFR receptor. This mutation shows up in just three percent of patients with GBM. However for those with the mutation this is the pertinent trial.

We are also awaiting word on access to a trial still recruiting at MD Anderson in Houston. It may soon be opening up recruitment at other sites around the country.

Finally we are awaiting some feedback for a Phase II trial underway at UCSD.

As I mentioned in the last post, we have a little time to do this review  as he could not start participation till he metabolizes the last round of chemotherapy, in particular the carboplatin treatment. Even though we know that will complete in two weeks, trials don't hold slots. You basically have to be ready to go when you are ready to go.

It is more than a little frustrating not knowing now what the next steps are but we have to be patient and work through the details. I will post again as soon as details come into view.

In the meanwhile we keep busy at things like shirtsleeve weather at the ballpark:

Another seizure and with it a tough update

John had his second seizure this year, this time last Thursday evening, as he was preparing to play basketball in Sunnyvale. His friends Lawrence Milan and Chris Zhou were with him and quickly got him emergency care, contacted Melanie and me, and had John in an ambulance down to Good Samaritan hospital in short order.

There he was treated and released after a review and additional anti-seizure medications administered. He was scheduled and received an MRI yesterday, May 5th. Today, the 6th, we reviewed the results with John's lead doctor, Dr. Friedman, at Duke University.  The news was a bit hard to take. His tumor has progressed and is causing the seizures. The current chemotherapy regimen of carboplatin and CPT-11 will stop as they are not effective.  Dr. Friedman is researching additional therapies to apply and we will have a conference call with him on Thursday to review the next steps.

One of the hardest bits of news was to learn that the anatomical structure of this progression, into a multifocal tumor (i.e. more than one tumor arising from one original tumor), precludes him from utilizing their most cutting edge treatment of injecting the tumor with a re-engineered polio virus. Because there is more than one tumor, multiple catheter insertions would be needed and there is no known safe and effective way to do so.

We remain hopeful that the team will find some course that will arrest the progression. Till then we ask for your thoughts and prayers.