Philography: Update: July 9, 2007

Well, we’ve had another visit to UCSF. Phil’s MRI continues to be “stable.” That means that he does not appear to have a recurrence of tumor, and the remaining tumor area has not grown. This is GOOD NEWS where brain tumors are concerned and suggests that the treatments are working.

For the past month, Phil has struggled with fatigue, more difficulties with word-finding and some confusion at times. He’s found this frustrating and a bit depressing. Several things could be contributing to this: an increase in his dose of seizure meds, the higher dose of chemo on his new chemo schedule, tapering the steroids, and post radiation side effects (which can persist for up to a year). So we’ve made some changes to his medication doses to see if that helps. Still, the chemotherapy tends to make word-finding much worse, and for about 7-10 days out of the month, communicating is more difficult for him than the rest of the month.

Nevertheless, over the past week or so, Phil has been in a very good mood. Tonight, we had a good time going out to the Eugene Public Library hear the Oregon Old Time Fiddlers play. Phil has also been working on his FIAT and getting closer to having that finished and ready to sell. All-in-all, he seems to be enjoying having the day to do whatever he wants. My mother drives him on errands when I’m at work, and that is a big help. He really enjoys spending time with her.

Phil’s last day of work was June 30th. His colleagues gave him a very nice reception and they gave Phil a coupon for a weekend at a great get-away on the Oregon Coast. Isn’t that a great idea?! We are really looking forward to it.

While in San Francisco this time, we spent the day with some of my family members who live in Sunnyvale. We saw my father, two of my brothers, my sister-in-law, and my neice. This was the first time Phil met my brother Marty. Marty took Phil and I on a couple of really beautiful scenic drives while we were there. He drove us out to the coast through really beautiful countryside. Phil used to live in the Bay area, so he really enjoyed seeing the sights again.

We will post another update after our next visit to UCSF July 23-25 when Phil will have another MRI and a visit with the neuro-oncologist. More news then.

Thanks for caring and checking our website!

Love,
Phil and Elizabeth

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.