"Pretty clean scan" 3/26/2008

Phil had his MRI and consult with Dr. Butowksi today. He said the scan looks “pretty much clean.” There are some “iffy” spots but they have remained the same for a few months now, leading the doc to think it could be scarring from the radiation. Phil is having some negative side effects from being on the Avastin for several months now (it decreases circulation to all organs in the body), and with the scan looking as good as it does, he recommended stopping treatment for a month and then getting another MRI. He said that if the tumor begins to grow, Phil will notice changes in his speech. If that happens, he can start the treatment again, or get a scan sooner than one month. If there are no changes in his speech, then he said the scan should be clear as well. He said we are entering fairly “unchartered territory,” so it is not without some anxiety, but we aren’t feeling that right now. Just glad for a clean scan and no chemo next week!


It is a really beautiful today in San Francisco. We did everything a little differently for this trip. We drove down, instead of flying, and we are staying in a little neighborhood hotel near the hospital. A lot of UCSF patients and their families stay here. It's not fancy, but it is clean. :-) After we arrived, we discovered that the train (the one that runs right in front of our hotel room window) goes all the way to China Basin where Phil has his MRIs and then runs all the way back to the hospital. So we had door-to-door public transportation, and it was a nice ride. Saw some beautiful scenes of the bay enroute.

Thanks to all of you for keeping us in your prayers and hoping for the best for Phil. He's so happy today, and I feel pretty relaxed, too. It's good to enjoy these times. We've learned through this journey that those early days before Phil's surgery, when we were so in shock and thinking that it was all so horrible, those were the good old days when Phil could still speak pretty much as he always had, he was anything but tired in those days, and he had all of his hair! Who knew so much would change? So we try to focus not on what he can't do, but on what he can, and that helps us.

For example, he's still really funny. When we were driving down through Northern California, I was listening to a book on tape. He didn't want to hear it, so I put an earbud in one ear and listened to it that way. After a while, he tapped me on the shoulder and started to gesture and mouth words as if he were innocently speaking out loud. It cracked me up......okay, maybe you had to be there. It was just that funny little mischevious Phil-look in his eye and that little smile he gets when he's trying to crack you up? That. Trust me, it was really funny.

Take good care of yourselves and each other. A message from the trenches.

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