Update: 11/26/06

Hi Friends and Family:

We have had a very restful and quiet Thanksgiving weekend. We have been enjoying having fires in the fireplace, visiting with Phil’s daughters and a friend who stopped by, talking and relaxing. Phil has recovered from the spinal tap that he had last week. He had the usual spinal tap headache unless he stayed flat in bed. This lasted for a week, and the last two days he has been up and around without a headache. So that has been a relief. He tires easily, and the medications have some side effects, but he is adjusting to them. After a week in bed, he thought a little fresh air might be good, so yesterday we went for a walk through the neighborhood. And today, we went out on an errand together. (He is not cleared to drive, but he is cleared to make suggestions from the passenger seat about my driving. ;-) And he did that very well.) It is strange how exhausting a short trip to the store can be. But it felt good to get out anyway.

The results of the spinal tap showed no sign of infection, and this moves us in the direction of the tumor diagnosis. We expect to hear from Dr. Kokkino sometime later this week.

This experience has been unlike any either of us has been through. We are learning how people go through something like this. We have always talked with each other easily, and trusted each other. And those things have been so useful to us in this. We find that we spend a little time talking and planning for things and then we need to get off the subject and just watch Battlestar Gallactica DVDs, or something.

Thanks to our departments at work, we have had time together to really talk about a lot of things and to adjust to this new information. We have also been well fed, as the UO Counseling and Testing Center staff has been providing dinner for us each day. Neighbors have raked our leaves and been very helpful in other ways as well. We are very grateful for this support.

We plan to send out weekly updates for the time being. No news is good news, in this case, so not to worry. J

We hope that all of you had a peaceful Thanksgiving, and we give thanks for each of you.

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