Loose Strife

Laura was finally discharged after 9 last night (Wednesday) and we decided to spend the night in Boston. This morning Laura was feeling really lousy — probably because she was off her IV fluids and hadn’t had pain medicine for over 12 hours. I brought up the subject of intrathecal again. I felt there was an opportunity to do something today, but she said she just wanted to go home. I didn’t feel like it was my place to push. These are complicated and personal decisions.
But as Laura slept more this morning, I talked with my friend and host Irene about her situation. As Irene made Laura some homemade chicken soup, we got ourselves worked up about Laura’s situation and I felt a greater urgency that Laura should act. It’s a long shot, but why not try? It’s low risk. Why wait? Things could get worse. Why isn’t she being reasonable? Why won’t her neuro-oncologist tell her to do it? Sure, Laura should make her own decisions, but what if she’s not thinking straight?
I woke Laura up for some food. She took 2 sips of soup and a morphine pill and threw up. Back to bed.
A few hours later I woke her again. I really think you should try the intrathecal chemotherapy. Today. We’re still in Boston. Your doctor can see you this afternoon. It’s a simple outpatient procedure. We’d come back every two weeks. If it makes you feel worse, you don’t have to do it again. It might make you feel better right away. Right now you have no evidence in your scans of bulky tumor, but your cancer cell count is sky high. Your doctor said that intrathecal chemo isn’t known to work on bulky tumor, but intrathecal is frequently discussed as cleaning out the cancer cells from the spinal fluid. Don’t wait until things get worse when visible tumors might form, it would be too late. It’s a long shot, but it might work. You should try it.
OK, she said.
I wasn’t sure if I did the right thing. It felt like a hollow victory. And that turned out to be more true than I could have known at the time.
By one o’clock Laura successfully had some orange juice, ice cream and pain meds, and she was feeling a little better. Her doctor told us to arrive at 2 and he would try to squeeze us in as soon as he could. We waited (Laura slept sitting up) for 2 1/2 hours in the Dana-Farber clinic waiting room. Finally we saw her neuro-oncologist.
Before we continued, I wanted to make sure he was fully behind it. Starting with our first meeting with him in January after Laura was diagnosed, he had never pushed for it, but I assumed that that was partly because he was being supportive — not pushing for something with a low success rate that Laura and I didn’t like at the time. So now I wanted to hear him support our change of heart.
“This seems like a good idea, right? It’s low risk. She’s experiencing all of the possible side effects already. She already has the hardware in her head to do the treatment.”
“It’s reasonable,” he said.
“Why not a good choice?” I demanded.
He didn’t budge. “I’ve said this before. I don’t want to get your hopes up. I’ll be honest with you, Laura has maybe a 5-15% chance of response. It’s a reasonable choice.”
I laid out the “no bulky tumor / high cancer cell count” argument.
“I understand your logic. It’s a reasonable theory.”
I started to feel unsure again. Laura sat and listened with her eyes closed. I wished she would jump into the discussion. Laura hadn’t been eager, but I persuaded her. Her doctor doesn’t seem eager either, but I shouldn’t be trying to persuade him.
I took a different approach. “What’s your experience? When will she know if it’s working? In a day? A week? Before a second treatment?”
“I would recommend that we at least try it for a month. Two treatments. But I have to be honest with you, I don’t expect her symptoms to get better. She could be lucky.” He paused to think about other cases. “I can’t think of any cases that I have had where the patient was exhibiting symptoms and the symptoms got better.”
“So when is it a good idea?”
He said that patients that are known to have leptomeningeal disease but are asymptomatic can benefit because the chemo can delay onset of problems.
“But nothing shows up on Laura’s scans. How can you explain your opinion?”
“Well, because Laura is exhibiting symptoms like spontaneous vomiting, it’s likely that tiny tumor masses have already formed that can’t be seen on the scans.” That’s what is probably different between her and an asymptomatic patient.
I felt deflated. Laura seemed unmoved by the whole discussion. She had already made her decision and wasn’t interested in dealing with conflicting positions.
He printed out a consent form and Laura signed. He examined the back of Laura’s head where the shunt has a reservoir for access to the spinal fluid. And then the whole visit became suddenly moot.
Laura’s shunt was the wrong kind. If he injected the chemo, it would just immediately drain out of the shunt and into her gut. Her doctor left to confer with his colleagues just to make sure. I was feeling frustrated. Before Laura had the shunt surgery, I talked on the phone with the neurosurgeon to make sure that Laura could get intrathecal chemo in the future, if she wanted it. I knew then that the shunt was different than the type that the neuro-oncologists usually request at Dana-Farber, but I thought that her neurosurgeon had assured me that there would be no problems.
(Now this gets a little complicated. Most cancer patients get an “omaya reservoir” for intrathecal treatment. An omaya is basically a tube that connects to the spinal fluid and is accessible with a needle at the top of the skull. When patients with an omaya receive intrathecal chemo, the chemical is injected and circulates through the cerebral spinal fluid system for days until it is fully absorbed. But if a patient has a shunt, which drains spinal fluid, there is the problem that the chemo just drains out and doesn’t circulate. To get around this problem, the oncologists like to use a special kind of shunt that has, in addition to a valve that controls the flow rate, an on/off switch — literally 2 buttons under the skin on the skull that allow the shunt to be turned off completely so no fluid escapes the CSF space. The doctor will turn off the shunt, inject the chemo, and tell the patient to turn the shunt back on in, say, 24 hours — maybe more or less depending on how bad the hydrocephalus is. It’s a sub-optimal way to administer the drug because it will not stay in the system once the shunt is re-opened. So importantly, even if Laura had this on/off shunt, she would still be getting a sub-optimal treatment, which suggests that response rate for patients with such shunts is even lower than for those with omayas. Now Laura could obtain essentially the same effect, but not in the oncology clinic. She has a standard programmable shunt and she could go to her neurosurgeon’s office, have them “dial it” all the way up so that it was essentially off, then she could go elsewhere to have the injection, and then go back in about a day and have the neurosurgeon dial it back to the correct setting. Repeat every two weeks.)
To do intrathecal with Laura’s shunt would be a big expense and a lot of time for a sub-optimal application of a chemotherapy treatment that is highly unlikely to have response to begin with. Intrathecal seems to be off the table.
At this point in the meeting, Laura says that she just wants to stop throwing up. The doctor recommends that she retry the gamut of anti-nausea/anti-vomit drugs. He gives her a prescription for an anti-psychotic that seems to keep some people from vomiting. And there’s a long list of conventional drugs that she can try again. Her doctor also mentioned marijuana, but Laura has never smoked anything and thought it would be too awkward, difficult, and unpleasant. Baking it into food seems a little dicey if she’s likely to throw up. I think it’s still something to consider. There’s also the synthetic prescription drug marinol. Laura tried that last year with no response, but her situation is apparently different now — it’s not the increased pressure, it’s probably the cancer cells acting more directly on her brain — so maybe the old drugs will work this time.
She’s happy to finally be back home. The kids were eager to see her and she was eager to read some bedtime stories again. After almost a week in Boston I don’t think she’s any better — maybe worse. After the fact, Laura and I have always felt good about hospital stays because she left feeling better with a comprehensive plan for dealing with a multitude of problems. This time it’s been more of a letdown, but at least we can say that a lot of avenues have been explored… and eliminated.