January 30 - February 5, 2000

Sunday, January 30
Monday, January 31
We met with Michael Broffman and 10:30 and Dr. Angelone at 11:30.

Broffman was pleased to hear the news about Don's latest MRI. Don mentioned the copper studies he had found on the Internet, especially the correlation with a "low copper diet." He wondered if Broffman had heard of such a thing.

Broffman didn't say anything about a low copper diet, but he said he had heard about the correlation between reducing serum copper levels and tumor reduction. He was aware of a Chinese doctor from Beijing who recently spoke with the University of Michigan researchers (I don't remember if he went there directly or if they met at a conference). Broffman's clinic is interested enough in the research that they are collecting data on their own about serum copper levels.

Don asked if he could take part in that, and Broffman said yes, if he could get his copper levels checked the next time he has his blood counts done. Don said he would do that.

Broffman also talked to Don about the experiments with bacteria being done at the Sick Children's Hospital in Toronto. He said he would send Don copies of an article on it.

Don apologized about having so little time to spend with Broffman, but that the scheduling with Dr. Angelone required him to be in Ross at 11:30. Don seemed to think that it was his fault that today's appointment was scheduled for 10:30 and not some earlier time, though I think it is our schedule that makes it so. If we don't know for certain that we're going to be staying in Marin on Sunday night, then a 10:30 AM appointment is the earliest we could possibly make it. If I'm not available to drive, Don cannot get from Mountain View to San Anselmo by train and bus any sooner than that with any degree of certainty.

We left in time to get to Dr. Angelone's on time, though just barely. Don wanted to stop in at Marmelade's for coffee, but I told him we didn't have time. It turned out, Angelone's previous appointment went long, so we could have stopped after all.

Once it started, the session with Angelone was very interesting. He showed us several charts of the comparison between the EEG taken shortly after Don's release from Kentfield with the EEG he took a few weeks ago. They showed that four areas targeted by the electrodes showed activity that was either above the normal range or below it. The areas were labeled CZ, T4, T6, and a fourth one whose label I don't remember. The correspond to areas of Don's skull directly over where the surgery was.

Dr. Angelone explained that Don's previous QEEG sessions had been concentrating on area T4, but looking at the newer EEG, Angelone now felt they ought to concentrate on area T6. On some of the graphs, its activity was more than one standard deviation above the average.

Don had gotten the impression that several of the neural pathways necessary for him to recover his left field vision had been severed by the surgery in July. He asked Angelone if this was the case, and if that meant there would be no improvement in his vision.

Angelone did not give a definitive answer. In fact, giving one would have been counter to his philosophy of healing; it would have been "playing God" to say what a patient could or could not recover. Instead, he said that the two of them would work on the visual field cut by means of controling the T6 activity through biofeedback. If things go as planned, this should have a beneficial result. That result could simply be a reduced likelihood of seizures, greater mental acuity and clarity, or improved visual processing.

Don expressed an eagerness to get started. Unfortunately, Don has agreed to take part in a panel discussion at Stanford on Wednesday, so he can't come on that day. This was just as well, as Angelone said he also had something unusual planned for that day. I went out to the car to get Don's appointment book while they discussed the possibility of meeting on Friday. When I got back, Don was leaving the office, closing the door behind him, so I don't know what agreement they finally arrived at.

Tuesday, February 1
Thinking that Angelone might be able to clear his calendar for Friday, Don moved his appointment with Dr. Peterson up to today. He weighed in at 142 lbs., which I was happy to see.

Both Dr. Peterson and Genny were happy to see us. Dr. Peterson wanted to thank Don for inviting her and her husband to his birthday party. She also had an amusing anecdote to relate:

"My daughter, Amelia, seems to have the ability to recognize couples," she said. If I remember correctly, Amelia is just barely two years old. "She recognizes couples and she names them. Our friends Donna and Rich, for example, she calls 'Donnarick.' So, I asked her if she knew whose birthday party we were at, and she said, 'Yes! Donnalou's!' So, she puts you two together and recognizes you as a couple."

I thought that was really sweet, and Don said, "Well, that's because we are."

Dr. Peterson thanked us again for the invitation. "It was so good to go somewhere and not be surrounded by doctors," she said.

She noticed that Don had one of his pant legs stuffed into his socks. The socks were bright pink, so it was difficult not to notice. "Have you been riding a bicycle?" she asked.

Don looked a bit chagrinned. "Yes," he said, pulling his pantleg from the sock. "This is not some new form of deficit."

"Well, I wouldn't think it was, " Dr. Peterson said. "It's on your right side."

She had the latest MRI with her, but seemed to think I had taken the previous ones with me after our last visit. I was pretty certain I had left them with her. "I better have," I said, "because there're nowhere in the house. We've just moved everything around and we haven't come across them."

Dr. Peterson went out and checked and sure enough, she did have all the MRIs. When she got back she put the latest one up on the light box.

"This looks pretty good," she said. "Cool."

Don: I seem to be responding well to this stuff [temodar]. But I know drug resistance can be a problem with cancer. The theory is that the drug kills off the cells that are susceptible to it, but that the cells that remain are especially resistant.

Peterson: The picture with glioblastoma is more complex. GBM is heterogenous to begin with, so it's not just one cell line. Add to that that there are inherently resistent tumors and tumors who develop resistence by revving up the production of enzymes that protect them against the chemo.

D: Is it a good idea to rotate chemos to keep any one cell type from surviving?

P: A better strategy is to use combination therapy - more than one drug. But with each drug you add toxicity and side effects. If I would add anything, it would be BP16 or etoposide. However, I wouldn't recommend it now. But I hear you that you want to be as aggressive as possible fighting the tumor, and I hear you that you don't want to be sick from side effects.

D: What do you know about the copper studies?

P: Everything you've sent me.

D: You see? Patients come in with information from the Internet, and the doctors have to keep up.

P: I used to be intimidated by that, but I've given up on that. Now, I just accept that the patient is more focused on the latest research, and I take it from there.

D: Did I also send you stuff about breeching the blood-brain barrier?

P: Yes. Keith Black is doing work on that in LA. Another approach is to use an osmatic, like manitol.

D: Yes!

P: But that approach seems more useful for lymphoma brain tumors, not glioblastoma.

D: Of course, Dr. Berger has a way around the blood-brain barrier.

P: Huh?

D: (Makes a gesture as if carving with a knife.) A scaple.

P: Well, the barrier's not just in one place. It's throughout the brain, not just surrounding it. You can't just take the whole out - I mean, you can't just cut a hole in it! (Looks at me.) I'm going to be quoted on that, aren't I?

Dr. Peterson then asked Don if he had any side effects to report. He said, "No," but then I reminded him, "You were feeling tired."

D: Yeah. It's nothing like with the radiation, but I am tired. I was able to ride my bike to meet Lou for lunch today.

P: It's predictable that you'll feel some fatigue. But the next time you get your blood counts, I'd like to check your thyroid levels.

D: My Chinese herbalist is working with a Chinese doctor on the connection between blood copper levels and tumors. Anyway, he asks that I get a copper level check as well. Is that OK with you?

P: It's not something they'd normally due. I'll add it to the lab work.

We ended with smiles and handshakes and made an appointment to see her again on March 5.

Wednesday, February 2
Thursday, February 3
Friday, February 4
Saturday, February 5


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