Back in the Waiting Room

After our appointment with Dr. Nguyen (pronounced "Winn"), the Radiation Oncologist, we had the impression things were going to be fast tracked. Last Thursday, Bobby was fitted for a mask, had a CT Scan "Sim", and another Brain MRI, all in preparation for a 2-3 day planning phase. Then we waited.  We finally got the call yesterday afternoon that the CyberKnife is scheduled for today at 5:00 pm. The CyberKnife is a highly concentrated beam of radiation, specifically targeting the tumor "bed," a the shell-like remains where the tumor was previously sitting.  This procedure will reduce the odds of a recurrence in the same location from 40% to 5-10%. 

Additionally, we are on track to start a new IV treatment called Timsirolimus, or Torisel, after an appointment next Wednesday with Dr Keller.  The plan is to do Torisel weekly for 8 weeks, at which time we'll do scans to measure progress. If there's regression, we'll keep doing it.  If there's progression, we will stop the Torisel for 4 weeks, and proceed to Bethseda for the NCI Clinical Trial.  He's ineligible for the trial for 3 months after radiation, and 1 month after any systemic treatment.  We are comfortable with this plan, and relieved to finally have a longer range plan.

The Concerns:

1. The laundry list of potential side effects from radiation in the left temporal lobe include nasty things like dependence on steroids due to swelling, permanent cognitive and speech issues, and even violent tendencies.  Lovely.

2. Torisel side effects include fatigue, mouth sores, hives, itching, swelling. Been there, done that.

On the positive side, we were extremely blessed today by receiving over 50 text messages from some of the pledges in Michaels fraternity.  It's Initiation Week, so I imagine the pledges are swamped with lots of unpleasant tasks, but this one was optional.  Just a sampling:

Now that's some fraternity hazing I could actually support.  Thank you to all the fine young men of the Sigma Phi Epsilon fraternity at the University of Oklahoma! You made our day.

Love, Juli