Update: November 12, 2007

Greetings Everyone:

I just thought I'd take a few minutes to give you a little update.

Tonight we are sitting in the living room enjoying the fire. Phil is watching "The Predator." He has been doing well since starting the half-dose of Avastin and same dose of CPT11. His deficits appear to have stabilized. That's a good thing. He has ups and downs between infusions but always seems to be at his best, both in energy level and speech, in the few days before his next infusion. This suggests to me that the ups and downs may be associated with side effects of the treatment. I'm not sure if that is the case, but thinking so makes me feel better.

He always feels more energetic on the days that he exercises. Our neighbor Maureen has begun going for a walk with him on Monday afternoons, and he has really been enjoying that.

I am enjoying being back at work half-time. Sometimes it is hard to be apart, but Phil does well at home, and we keep in touch by phone while I'm at work. He cleans up around the house, does the laundry, watches movies, checks the mail, and sometimes takes the bus to campus to meet friends or me for lunch. Sometimes he takes the bus to the barber shop. He has enough hair to cut now! Dr. Monticelli said his hair has grown back in record time, post radiation. In fact, it never ceases to amaze me how well Phil's body has tolerated the treatments he has had. His blood levels are relatively good and he hasn't had any of the more uncomfortable side effects (nausea, diarrhea, etc.) He's amazing that way.

Phil's next MRI will be at UCSF on the Monday after Thanksgiving (the 26th). Of course, we are hoping for news of a stable tumor but will deal with whatever comes. Please continue to keep us in your thoughts and prayers.

We have enjoyed the emails we've received from friends and family. It is always good to hear news of how all of you are doing and what is new in your lives. It keeps our world nice and big.

Love,
Elizabeth and Phil

Posted by Phil and Elizabeth

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)

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