UPDATE May 11, 2007

Greetings!

Yesterday was Phil's last day of radiation. Woo Hoo!

He's very glad to be finished with this cycle, though he will miss the great folks at Willamette Valley Cancer Center. They really made the whole thing tolerable. He had a good radiation oncologist who worked closely with UCSF to design the radiation treatments, and the folks who administered the radiation treated him wonderfully. Dr. Fryefield commented that Phil has tolerated the radiation very well, and he has. He hasn't had many side effects or complications so often associated with radiation. His skin isn't sunburned (thanks to Calendula Oil!), his ears are fine, and he's in good spirits. He's been sleepier than usual. An hour-long nap in the morning and again in the afternoon seems to do the trick. Short term memory seems a little worse since the radiation, but not as much as we had anticipated. The radiation techs sent Phil home with his mesh mask, suggesting he "drive over it" if he wants to. :-) It is interesting to see the areas marked for radiation. It fully explains his new hair growth pattern. ;-) It's a little punkish.

Phil has continued to go to work for most of his Radiation cycle. He has noticed that the short term memory deficits, resulting from surgery and radiation, interfere significantly with his ability to remember the kind of intricate detail his job entails. He has made the decision to step down from his job on June 30th. It's been a difficult decision in some ways. He was so productive pre-surgery and was really enjoying his work. We had both hoped that his short-term memory problems would clear up as his brain healed from the surgery. However, the radiation oncologist informed us that radiation to the temporal lobe causes persistent short-term memory problems. So Phil is making adjustments and planning things to do when he is no longer going to work each day. If you'd like to email Phil, you can write to him at epstuff@comcast.net.

Now, Phil has begun a two week break from chemotherapy and the experimental drug. We will be going to UCSF for an MRI and blood work on May 22nd. If all goes as planned, he will begin chemotherapy and the experimental drug again on May 25. He'll take the chemo on a 5/23 schedule (5 days on, 23 days off) for 12 months, and the enzastaurin daily for 12 months.

We hope that this update finds all of you well and enjoying some fine spring weather.

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