Philography: MRI Results 7.16.08

Phil and I traveled to UCSF on Tuesday for his MRI on Wednesday. We spent some time Tuesday evening with Erin and her boyfriend Martin. It was great to see her.

Wednesday morning, Phil had his MRI and we saw his neuro-oncologist. The news is a little mixed. There are changes on the MRI, but it is unclear what is causing the changes. The Avastin that he was taking through March 19 has the effect of "cementing" leaky blood vessels, and stopping it causes the blood vessels to become leaky again. So there is evidence of this leaking. Tumors also have a lot of leaky blood vessels, but they generally have a "mass effect," taking up space in the brain and crowding other brain tissue. This does not seem to be happening on the scan, but that alone does not rule out the possibility of tumor progression. I have seen some slight slowing lately in Phil's thinking and moving around. And Dr. Butowski thought this could be the result of blood damaging brain tissue. So he is going back on the Avastin without the chemotherapy agent added. He'll receive two infusions, two weeks apart, and be scanned again on August 15th at UCSF.

This isn't terrible news, but it is always scary. And Phil has been very discourged since hearing that he will need to have more infusions. He'll take some time to absorb this news and readjust his thinking to continue on with treatments. And then he'll carry on once he gets his mind around this. I'm feeling okay about it. That could be denial, but I wouldn't know. ;-) I think I might be getting the hang of not worrying until we have something definite to worry about - at least some of the time, anyway. Phil will work through what this means and go on. He's always done that.

Thanks for your prayers for us. We continue to need them on this journey. Please also pray for Phil's daughters Erin and Elena, and for Phil's sister Elizabeth, brother Pete, and father Norman.

Love,
Elizabeth and Phil

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

Memorial Services

A memorial service was held in Blooming Glen, PA at Phil's home church, Blooming Glen Mennonite Church, on Sunday, June 28th at 4:00. It was followed by a burial of Phil's ashes in the family plot across the street from the church.

The service was beautiful. People shared both touching and funny stories of Phil's life, and the music was gorgeous, with all in attendance singing four-part harmony, as the Mennonite churches in that area are well-known for. His very good friends, Rod Derstine, Rachel Blosser Derstine and Dennis Maust provided music, with Rachel on piano, Dennis on mandolin, and Rod singing a piece that brought us all to tears.

It was wonderful to see Phil's family and friends again and to spend time reminiscing with them about Phil.

A big thanks to Phil's brother, Pete, and sister, Elizabeth, for planning the service. Everything went so well. They will also be participating in the service here in Eugene on July 25th.

The Caregivers

The link below will take you to a film made by Dr. Mitchel Berger, Phil's neurosurgeon, and others on the lives of caregivers. Dr. Richardson is a resident who assisted with Phil's surgery and also cared for him post surgery while Phil was in the hospital recovering. I think it took him all of 2 minutes to check Phil's neuro status and incision each morning. He was in and out. So it was interesting to hear him talk about what that is like for him. The hospital floor they show is the one Phil was on after surgery.

The film is a good picture of what we go through as bt patients and caregivers, and I share it with you to give you a closer glimpse of how this is for us.

Click on the link below to view the film.