Saturday, June 28, 2014

health status and plan of action as of 6/28/14

John's physical condition has declined due to tumor progression. He has lost the use of his left hand, being unable to extend it after closing the grip. His grip is markedly weaker in that hand. His left wrist is also affected as he has great difficulty in maintaining strength on the outside portion of his wrist. His left mouth is affected with a bit of droopiness and numbness. This decline began at the start of June and has gotten worse throughout the month.

We visited University of Utah Tuesday and Wednesday of this week.  Since the last post we were able to get John into  trial being run at Huntsman Research at the University of Utah.. The lead investigator is based at MD Anderson and Huntsman was in the second wave of sites to open up.

John had been taking the medication since June 3rd so this visit was to get the first indication if this therapy is providing any benefit.  On Friday morning we reviewed those same results with our local oncologist Dr. Cabebe (SI class of 1995) and Dr. Friedman from Duke.  Both doctors felt that the therapy was not working and that the tumor was progressing. 

We discussed various courses of action and firmly concluded that the next step is to again do surgery to remove as much of the tumor as possible to buy additional time. John is scheduled to be operated on Tuesday, July 1st, at UCSF by the head of neuro-surgery, Dr. Mitch Berger. This surgery is not a cure, but we hope it will give time to line up additional therapies.

Several therapies were discussed Friday and we are organizing a plan to set an appropriate sequence to them.  In any event the therapies would not be applied till some several weeks following surgery to allow the brain to recover. Thus we have time over the next week to get them organized. We have options.

At this point you have all the info we have. John has a little sore throat so say a prayer it doesn't get worse as a fever would delay surgery.

Before all of these 

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