Philography: Update: July 27, 2007

Dear Friends and Family,

Well, Tuesday we got bad news about the MRI results from Phil’s neuro-oncologist at UCSF. I thought it best to lay it all out here, and Phil agreed, so that folks could be prepared. Phil’s tumor has progressed significantly in the past 3 weeks. Dr. Butowski says it is behaving more like a sarcoma now, infiltrating the healthy brain tissue in search of a better blood supply. It has spread out over his whole temporal lobe. What began as a tumor in the anterior part of his temporal lobe now extends all the way to the back. It is inoperable. I asked what his prognosis would be if he did nothing to treat it. Dr. Butowski, after giving all the caveats about “hard to say…all tumors are different….respond differently…etc.,” said that without more treatment, he would have “a few weeks, maybe months.” He recommended a six-week trial of CPT11/Avastin as the next course of action. This combination of drugs targets multiple factors related to tumor growth and is very aggressive in killing tumor cells. It has been shown to be remarkably effective for some in clinical trials, sometimes adding several months to a person’s life. (Yes, in this brain tumor world, several months is considered a remarkable response.) If the tumor (which is behaving atypically now) doesn’t respond to the treatment, then things are likely to progress fairly quickly. Dr. Butowski said that it will be noticeable before the CPT11/Avastin treatment is over (it lasts six weeks) whether it is working or not. He’ll start as soon as the insurance company gets on board.

We are in shock. We came to San Francisco yesterday expecting a fairly routine check up (if there is such a thing with GBM), since we had just been here 3 weeks ago and the MRI seemed “stable.” Phil has had more difficulty over the past 2 weeks, both talking and understanding the things I say, and we thought these were related to the increases in his chemo dose and one of his seizure medications. So we did not expect to hear that the tumor had grown.

I asked to speak with Dr. Butowski alone first because I had wanted to ask some difficult questions without worrying Phil, questions about next course of action should his current treatment fail. I thought I was getting ahead of the game, preparing for something that would occur 6 months to a year from now. Dr. Butowski showed me Phil’s MRI scan, and I could see the tumor stretching all through his temporal lobe. I’ve never felt so angry at anything in my whole life as I felt at that tumor. Dr. Butowski answered all of my questions very thoughtfully. He was very sensitive and took his time. I was so grateful for that. Then, he went to get Phil. When Phil came through the door, he looked at me and could see I’d been crying. He sat down. Dr. Butowski gave him the news that his tumor had grown, and Phil said, “how could it do that?” He was completely taken off-guard. Phil had been so positive that he would just get better and be a long-term survivor. (We all hang on to that hope, and Phil’s attitude has been so great throughout, despite all he is going through.) As the doctor explained things, Phil grew so quiet, and he was fairly quiet the rest of the day. We talked more openly about death and his feelings about all of this. So hard. (Dr. Butowski had told me that his speech and his ability to understand speech would get worse over the next few weeks if the next treatment doesn’t work, so Phil and I need to have these conversations now.) We are both in shock. We are just taking it a moment at a time right now.

Dr. Butowski doesn’t recommend that he be home alone now, and I can’t imagine being apart from him for so many hours in the day when we may have so little time together. So I will be staying home on leave with him. Our trip to Japan has been canceled, too.

There is a possibility that the CPT11/Avastin will give us some more time. We sure hope so. I didn’t expect us to get this sort of prognosis for about another year. With this news, he has been feeling like he can’t handle a lot of contact with people for right now. He isn’t able to email anymore because of his language problems and difficulty recognizing folks by their names, though he remembers everyone when he sees a picture of them. I know that he would be cheered by hearing from everyone who knows him or has known him personally or through his blog (www.philography.blogspot.com). I want him to feel connected to everyone, to know that he is not alone even if he has trouble communicating. And I want him to SEE how connected he is to so many people who love and care about him. So I have a request:

If you would be so inclined, would you send/email a photo of yourself with a brief note? I ask that you do this soon, if you would. It would be so wonderful for him to hear from everyone right away, if possible, while he is still able to understand. Don’t worry about it being a “good picture” of you. It will be beautiful to him and to me. I will fill the wall in the bedroom with all of your faces and messages. This will mean so much to him. If you have a memory of being with him, he would love to hear that. He talks often about his past and the people he has known. I seems to love reminiscing now. I haven’t told him about this request, so it will be a wonderful surprise for him. He needs a boost right now, and short of a cure, this ought to do it!

Email to: eloux@comcast.net

Thanks so much for all your prayers and, in advance, for your cards, emails, and photos. They will mean so much to him.

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.