More Good News! 11/26/2007


Greetings from San Francisco!

Phil had his MRI and visit with the neuro-oncologist today, and we learned that his tumor has decreased in one area and that there is no tumor growth in other areas! YAY!!! This visit has given us both a boost, as the tumor continues to respond even with half a dose of the Avastin. Phil's speech continues to improve a little at a time. He just seems better all around.

We arrived in the Bay area on Saturday morning and spent the day and evening with my family who live in Sunnyvale and my sister, brother-in-law, and neices (Miranda and Mattie) who live in Santa Barbara. We watched the UVA vs VA TECH football game. My father, brother and sister all went to UVA, so it was a little disappointing to see their alma mater lose. One of my other brothers went to VA TECH, so one fan was happy about the outcome! Thanks to Tom and Marty & Gail for chauferring us around. It was great to spend time with all of you.

Sunday morning, Phil and I had breakfast with Karlie, our friend from the online support group. We met her four wonderful children and had a great time with them. Her kids, like her, are very bright, playful, and a lot of fun. When I asked someone to take our picture, the kids jumped up and exhuberantly ran around the table to wrap themselves around Karlie for the picture. It was a real joy to be with them.

With the good news, we feel more relaxed than we have in a long time. We've had six good weeks of getting back to some old routines and not living in a state of anxiety all the time. With today's news, we feel we've been granted an extension and can really focus on living instead of "adjusting and adapting" all the time. We are both looking forward to that.

Tomorrow, our favorite San Francisco cab driver, Abi, is picking us up at 5:30 AM and taking us to the airport for an early flight home, so we are going to watch a Sherlock Holmes episode and go to bed early. We are looking forward to getting home to our kitties and our cozy living room.

Love,
Phil and Elizabeth

Posted by Phil and Elizabeth

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Basic Timeline....

  • 11/10/2006: First seizure followed by a week or two of testing. Diagnosis of brain tumor followed.
  • 2/19/2007: A follow-up MRI scan showed rapid progression of the tumor, necessitating surgery.
  • 2/27/07: Brain surgery at UCSF Medical Center with Dr. Mitchel Berger. Good surgery and good recovery.
  • 3/28 - 5/10/07: Started clinical trial of daily oral chemo (Temozolomide) and Enzastaurin (an experimental drug).
  • 5/10/07: Phil completed his radiation cycle. Stopped chemo. Continued Enzastaurin.
  • 6/4/07: Started Temozolomide on 5/23 schedule (5 days on/23 days off.)
  • 7/24/07: MRI showed significant tumor progression. Stopped clinical trial and temozolomide.
  • 7/31/07: Began another chemo protocol with CPT11 and Avastin with infusions every 2 weeks.
  • 9/4/07: MRI showed the tumor shrinking considerably!
  • 10/17/07: MRI showed stable tumor. No progression. Speech and vision worse. Avastin dose halved to slow damage to healthy brain tissue.
  • 11/26/07: MRI showed more shrinkage in one area, and no growth in other parts of the tumor. Clinical improvement. Continue CPT11/Avastin at same dose and frequency.
  • 1/25/08: MRI-Stable. All tumor progression is gone. One small area left that continues to shrink. YAY! Continue CPT11/Avastin.
  • Next MRI scheduled for March 26th.
  • 3/26/08: MRI "pretty much clear;" Stopping tx for one month; then scan again.
  • July/08: Restarted avastin because of possible tumor regrowth, or other effects of stopping avastin. Infusion every 2 weeks. Scan in one month.
  • Sept/08: Scan improved. Change frequency of avastin infustion to every 3 weeks. Scan in early October.
  • 10/6/2008: Scan showed some vague changes but tumor seems "stable." Phil feels some pressure in his head, though the scan does not show evidence of this. Will increase avastin to every 2 weeks to see if that will generate improvements. Next scan will be early November.

    One of Phil's friends sent this beautiful quote:

    “When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand, the friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” -Henri Nouwen