Update: September 8, 2007 - It’s working!

Dear Family and Friends:

After a very scary visit to UCSF in July, Phil started CPT11 and Avastin chemotherapies in the hopes that it would shrink his tumor and give him more time. It’s working! Check out the MRI images! After only three infusions, Phil’s tumor has shrunken quite a bit. Phil’s latest MRI showed the tumor shrinking and the swelling gone. The neuro-oncologist, Dr. Prados, seemed very pleased with the results and recommended Phil continue the chemo infusions every other week for now. He also recommended stopping the steroids – yay! So Phil is tapering those and hoping to be completely off them within the month. That allows him to taper slowly and reduce the chance of rebound inflammation. Dr. Prados also told us that it would be highly unusual for the chemo to fail in the next 6-12 weeks, giving us some time to just relax and enjoy this good news.

Phil continues to have difficulty with speaking, but his energy level is good and he enjoys doing things. For the past 6 weeks Phil’s daughters Erin and Elena have postponed work and travel to be here and spend time with Phil. We have had a chance to spend a lot of good time together. With the good news, Erin has returned to her work as an instructor for Western Culinary Institute in Portland, and Elena is off to New York City to live. She has several friends there and looks forward to getting settled there. I will be going back to work half time for now. He’ll spend some time alone at home (he’s cleared for that), and he plans to ride the bus to campus to meet me and run whatever errands he wants to run in the afternoons. He is looking forward to a little less focus on his condition and more focus on living, and now is the time for that. He has been seizure-free for two months now, and other than his speech difficulties, he is much better. He’s having no significant side effects from the chemo. He’s good. If you’d like to email him, please send your email to epstuff@comcast.net.

Thanks again for your thoughts and prayers!

Love,
Elizabeth and Phil

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