Update: 12/4/06

Greetings All:

Phil saw his neurologist, Dr. Jensen, Friday morning for a follow-up to monitor his anticonvulsant medication. We are always glad to meet with her because she's bright and personable, a nice combination in a physician. She takes time to answer our questions and lets us know what we might expect and also about her communications with the Dr. Kokkino, the neurosurgeon.She informed us today that Dr. Kokkino presented Phil’s case to a group of neurologists and neurosurgeons about a week ago. Dr. Jensen will be contacting him today to find out if any new information came from that presentation and discussion. Additionally, she cleared Phil to drive since his medications have completely controlled his seizures since he started them a couple of weeks ago. Needless to say, he's delighted. Now, I've returned to back-seat driving. We are two of a kind. ;-)

Phil got a call from Dr. Kokkino's office today, giving him the go-ahead to schedule his MR-SPECT scan at the UO. So apparently the legal aggreements have been signed and in record time, I might add. These agreements typically take months to negotiate, so we are really impressed by the speed with which Phil's colleagues (Randy Geller and Don Gerhart, among others) have secured this agreement. He is scheduled for the MR-SPECT scan today at 3:15. While we expect this to give the neurosurgeon more information, we know that the results will not be conclusive in the way that a brain biopsy would more likely be. However, in reading about low-grade brain tumors, we learned that it is not unusual for these to take a year or more to diagnose. And at this point, "easy does it" is probably the best strategy, as biopsies can be risky and it is not typical to rush in and do one at this early stage.

So we are not fast-tracking anywhere at this point. It’s hard to wait. On the other hand, it is good, relatively speaking, to not be in an emergent situation that requires a lot of quick decisions about risky and life-threatening issues.

Phil’s anticonvulsant meds are working really well. He has returned to work this week on a limited schedule. Today, he plans to work most of the day. Other than fatigue setting in at certain times after he takes his medication, he feels strong and positive. He has been very productive lately, wanting to work, and it is clear that being back at work has been good for him. He’s gradually finding out that he can still do the things he used to do (that his brain works), and that has been encouraging.

We will send out another update when we have news from Dr. Kokkino about the results of the MR-SPECT. Thanks to all of you for your thoughts and prayers.

- Elizabeth

Elizabeth Loux, Psy.D.
University of Oregon Counseling and Testing Center
1590 E. 13th Avenue, Eugene, OR 97403-1280
Phone: 541-346-2709 Fax: (541) 346-2842
email: evloux@uoregon.edu
Web: http://counseling.uoregon.edu/

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