Sunday, March 26
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Monday, March 27
We arrived at UCSF in good time for the 10:30 MRI appointment.
I told the technician that we wanted copies, and she told me
that she'd come out between the regular MRI and the spetroscopy
and tell me how much it would be.
I waited in the patient waiting area, though I was not patient
at waiting. I went back to the MRI area after about 20 minutes.
Don's scan was up on one of her screens. It didn't look good:
very asymmetrical ventricles, and it looked like the frontal
lobes were being pushed forward and to the left. He has been
complaining of headaches and taking Tylenol almost every morning.
Dr. Peterson even suggested an early MRI if they did not clear
up by the Monday following our last consultation with her, but
when Monday came, Don said the headaches were gone. Has he been
concealing his pain?
I went up to the "film library" and paid for the copies, then
returned to the imaging center and waited for Don in the lobby.
The technician came out with the copies and gave them to me.
Don came out, then went into the bathroom. While he was in there,
I took a peek at the films. This does not look good. Should I
put off worrying until we talk to Prados? But I am very
concerned. I've seen enough of these things now to know what
to look for. If frontal lobes are involved, serious deficits
in reasoning and judgment could follow - even personality. Oh,
brother.
We ate lunch in Moffit Hospital Cafeteria. I ordered more
than I could eat, so I got some aluminum foil and a paper bag
to carry the rest of it home in.
"It's nice of the Reagents to provide this do-it-yourself
carry-out service," I said. "Of course, it doesn't make up
for their axing affirmative action."
"Well, that wasn't their fault," Don said. "That was the voice
of the people."
"Narrow-minded, short-sighted people. Nothing like making a
third of the state annoyed at you to secure your future."
"Small-minded people, the same ones who voted against our
getting hitched."
"Of course, I blame this on Reagan. But then, I always do."
"And why not? He legitimized small-mindedness."
We were having such a fun time, bantering in this way, that we
didn't notice the time. We were late for our appointment.
Back in the waiting area on the eighth floor of the medical
offices building, I asked again for the spectroscopy results
from Don's previous MRI.
"You know what?" Dan, the receptionist, said. "The spectroscopy
machine broke down in the middle of that and no results were
generated. So there's no report to show you."
"Why didn't they just say so?" I asked.
"Oh, they never say anything," he said.
Dr. Prados was right there, so we were seen without almost any
waiting - a first.
As we sat down, Don said to Prados, "So, are you aneurologist,
too?"
Prados: No.
Don: I think the training you must go through to cover all this
is mind-boggling.
P: Well, if you're old enough, you get it all in.
D: Oh, so, that's all I need to do, get old enough?
Dr. Prados gave us one of his tight-lipped smiles, then started
the examination.
P: Have you been having any problems with headaches, balance,
strength?
D: Well, I have headaches, which I associate with the temodar.
Tylenol does the trick, though.
P: Anything else? Balance, strength, vision problems?
D: There's been no real change since the hemorrhage. Balance
has always been iffy.
P: Are you on any other medications?
D: No.
Prados began the now-familiar physical exam. When he asked
Don to smile, Don spread his lips and bared his teeth as much
as possible.
D: Does that really look like a smile?
P: It qualifies. (Rubbing his fingers together by Don's ears.)
Does that sound the same?
D: Yes. There's some hearing loss on the right. It's not
progressive. I still have ringing. They really fried my ear.
P: Actually, that's quite common.
Prados had Don do the "macarena" test. He had him hold the
pose longer than usual. Is he looking for something?
P: You can put your hands down, now. Did the last round of
chemo cause any problems? Nausea, constipation?
D: No.
Lou: Yes. You had nausea up to day nine, and were taking zofran
for it. That's the longest the nausea has lasted.
D: This medication - I wouldn't volunteer for it, but I don't
mind taking it.
Dr. Prados put the scans up on the light box. Today's was on
the left, the ones from January were on the right. There was
a noticeable difference.
P: Unfortunately, there's been tumor re-growing. There has been
significant growth between the two scans.
Don was silent. I asked, "What areas seem to be affected?"
P: It's all still in the temporal lobe, near the frontal lobe
insular cortex, pushing against the thalamus, and into the motor
fibers before they get to the brain stem. Possibly, into the
lining of the ventricle. I'm beginning to pick up weakness on
the left side. The changes are enough that I don't want to
keep you on temozolomide. It isn't enough to keep this thing
in check.
There was a pause. I got up and stood next to Don, putting my
arm around his shoulders.
P: What do you want to do?
D: What can we do?
P: Decadron would lower the pressure and decrease its effects.
That's symptoms. For treatment, there are some chemotherapies.
D: Which one - what's next in line?
P: You've had two classes of drugs: anti-angiogensis, and the
temozolomide. Next are such drugs as carbo-platinum, CPT-11,
tamoxifen. We've used tamoxifen with CPT-11 and VP-16.
D: What are the side effects?
P: Tamoxifen can make people dizzy. It doesn't affect blood counts.
It's a lot of pills to take, but it doesn't cause nausea. There's
a potential increased risk of blood clots in the legs. When you
add other chemotherapies to it, you add toxicity.
One chemo we've tried with it is CPT-11. Its effects include
diarrhea, decreased blood counts. It has to be administered
intravenously.
D: Can that be done at Stanford?
P: Yes. Barbo-platnin is also administered intravenously. It's
done every three weeks, and benefits are judged by scan.
There was another pause. Dr. Prados was looking intently at
Don.
P: We have a phase II trial with tamoxifen and VP-16. We;re
trying to see if it is effective in combination. You take it
every day for three weeks. Side effects include decreased
blood counts. Some people have nausea.
D: Why do chemotherapies cause nausea?
P: It affects the lining of the gut, so you don't have the
normal protective barriers. Sometimes, it's an anticipatory
effect.
D: The oral drugs are appealing because they're oral. I can
take them at home.
L: What is the goal of the trial?
P: The goal is to see overall response after forty patients
and compare that to historical data from patients who didn't
have the combination.
D: That sounds like the most appealing one. What about the
copper-lowering drug? I was going to bring you an article
on this, but I forgot. The drug binds with copper in food,
bringing the copper level down to 20%. A number of people with
metastatic cancer have had good results with it.
P: I'm not familiar with the study.
D: I'll send you a copy.
L: You still have the original?
D: It seemed interesting enough and enough people wanted copies
that I kept the original. What about blood brain barrier studies?
P: They're doing those in Portland, Oregon. They insert a
catheter [in the femoral artery], inject a drug that opens the
barrier, then squirt in the drug.
D: Sounds like an angiogram.
P: It's the same process.
The silence fell again. Prados was staring at Don very closely.
Don later said he saw a frown on Prados's face, but it wasn't
as if Prados were frowning at him. "It was like he was trying
to mirror what I was feeling," he said. Finally, Prados said:
P: Another option is to say you've done as much as you want. If
this thing keeps growing and nothing keeps it back, the risks
are fairly low. The benefits of treatment are fairly low, too,
but the benefits are higher than the risks. The addition of
Decadron may be helpful. Your headaches are controlled with
Tylenol, but I'm concerned at the pace at which this is growing.
D: What else was I taking, last time I was on Decadon?
L: Dylantin?
D: No, zantac.
P: If there's no problem, it's best not to add anything into the
mix.
L: With the temodar, we found a strategy that helped in taking
it on the Internet. Is there any strategy or schedule for taking
tamoxifen, like it's better to take in the morning or at night?
P: Ask Jane. There's a lot of pills. We'll try to get you up
to 24 [pills] a day, 12 if we can get the higher doses.
L: That's nothing. You down that many supplements at each meal.
P: So, should I have Jane come in?
D: Yes.
Prados gathered up his stuff and started to leave. At the
door, he turned around. "I'd like to see a better scan next
time," he said.
"We'll do our best," I said.
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Tuesday, March 28
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Wednesday, March 29
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Thursday, March 30
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Friday, March 31
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Saturday, April 1
April Fool's Day
Don and I spent the afternoon laying out the outline of the
deck using stakes and string.
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