MRI results from 4.30.2008: More good news!

Phil's MRI looked pretty good this time, too. The doctor wants to "watch him closely" and advised that Phil go back to UCSF in one month for another scan. There are some kind-of-iffy places that are likely not tumor, more likely the result of stopping the Avastin (the treatment he was taking). No way to know for sure except to watch it monthly, and the MRI machines at UCSF are a lot stronger providing greater detail than our local machines. So we'll go back down to UCSF the last week of May for another MRI.

This is a tricky time in the treatment course for this kind of brain cancer. Stopping treatment is generally considered “bold,” but Phil’s neuro-oncologist (NO) at UCSF is wary of keeping people too long on the kind of chemo he was taking. It leads to liver failure and other nasty things. So he encouraged stopping chemo and monitoring him closely with monthly scans. I appreciate that he is conservative and not willing to ravage Phil’s health unnecessarily to keep the tumor at bay. If a scan shows a recurrence, then he’ll start another kind of chemo. In the meantime, he can rebuild his health a bit and enjoy life. Eventually, one runs out of treatment options and that’s the hard part.

For now, though, Phil is feeling so well, and despite his speech and vision problems, seems more like his old self, in some ways, than since his surgery over a year ago. Some of his old routines and preferences are springing up. He has a lot more initiative and energy. And he thinks more clearly than he did on the chemo.

He’s taking a lot of supplements, some of which are known tumor-fighters and a bunch that are designed to increase oxygen to the brain tissues, making it less amenable to tumor cells (which prefer a low-oxygen environment) Anyway, he’s feeling really well these days. It’s amazing what not being on chemo can do for one’s energy level and mental clarity (except for right now – he’s asleep in my office). So we are enjoying this time and feeling fairly relaxed, actually. And his hair is growing back! His beard and mustache are getting thicker again, too. He's really delighted about that.

Thanks to all of you trusty souls who keep checking in to see how Phil is doing.

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