Loose Strife

Laura and I met with a neuro-oncologist at Dana-Farber today. The main outcome was that he more specifically diagnosed Laura’s headaches as due to intracranial pressure. He said that the spinal fluid pressure changes periodically, so Laura’s periodic headaches fit well with that diagnosis. He also observed something called papilledema, or swelling around the optic disc, which is a classic sign of intracranial pressure and also in agreement with transient visual spider web-like patterns that Laura sees.
Intracranial pressure doesn’t well explain why Laura is losing leg and arm muscle control, falling, and blacking out. But, the doctor said that it has been observed sometimes with intracranial pressure.
The doctor doesn’t believe that Laura is having seizures for various reasons. But he still suggested an EEG to record her brain waves.
None of this more precise diagnosis affects the general outlook for Laura’s health, which he counseled was quite grim. The doctor did say that despite the neurological problems, Laura is in excellent health — a good indicator. Moreover, since the cancer elsewhere seems to be relatively stable, that’s also a good sign. It’s stuff we’ve heard before, but good to hear it independently multiple times.
Treatments range from “very aggressive” to “low risk”. This is clinical code. The way I see it, “very aggressive” refers to a treatment that is dangerous and/or has awful side effects, but has the low chance of a big increase in survival or reduction in symptoms. “Low risk” is something that probably won’t hurt you and probably will help a little bit.
The very aggressive option is something called intrathecal chemotherapy. It involves brain surgery to install a tube into the spinal fluid allowing for direct administration of chemotherapy. Since Laura is currently in good health, this is often recommended, but the way we see it, if a procedure has a higher chance of a bad reaction (20%) than it does of success (10%), when “success” doesn’t necessarily mean a reduction in symptoms, and the typical time to remission is measured in weeks — well it’s hard to justify taking such a risk and wasting valuable time on it. Of course, on the other hand, there is a small number who do respond, so there’s always this horrible feeling that dismissing an aggressive treatment is giving up or not trying hard enough.
But Laura just doesn’t think it sounds like it’s worth it. And when she told the doctor that her priority was too maximize the amount of healthy time that she could spend with our kids and family, he didn’t encourage her to go that route. Maybe later, if symptoms become much worse in some unbearable way (the doctor described Laura as currently “relatively mildly affected”), but for now it looks like she’ll take a less aggressive route.
The route that seems to make sense is to choose relatively low risk options to treat symptoms. If treatments don’t work, then consider escalating the treatment to more aggressive options. If new symptoms arise, consider new treatment options. That way Laura can maximize her time with good health and mild symptoms, and increase the risks only as things worsen — which they’re almost certain to do.
That route probably initially involves something called whole brain radiation (WBR). It sounds awful, but it actually is not very risky (rarely causes brain damage), has few immediate side effects except fatigue, and the long term effects, if you’re lucky enough to live to experience them, are mostly manageable. It’s possible that her symptoms could be immediately relieved by radiation. The goal is to radiate the entire head to kill the cancer cells in the spinal fluid surrounding her brain that are most likely causing the problems. It’s a daily treatment for two weeks near home. And since Laura’s leg is broken it’s not a great time to be traveling, so she can do the radiation treatment while her leg heals.
In addition, she’ll probably follow that up with an oral chemotherapy pill that is known to go through the blood-brain barrier. The drug is usually well tolerated (i.e. minor side effects), but there have been some case studies (although no definitive clinical trial data) that suggest that this drug helps control cancer to the spinal fluid. It’s what oncologists call adjuvant treatment. A side benefit is that this drug may also keep her systemic cancer (the cancer in her bones and chest) under control.
Down the road, a surgery option is a shunt. Relative to other brain surgeries, it is low risk. A tube and valve let excess spinal fluid escape, so the spinal fluid pressure remains low. The neuro-oncologist believes that this could immediately eliminate Laura’s symptoms. But it does nothing to control cancer growth.
That’s about it for now. Tomorrow we meet with a new breast cancer oncologist who we hope we’ll like enough to replace Laura’s current primary oncologist. We’re hoping this new oncologist will help us sort out some of our options.
Right now Laura is thinking a lot about all the things she wants to get done — nothing big, mostly things related to accumulated stuff around the house that she’d like to see turn into memories instead of junk. But Laura’s big anxiety is the uncertainty about how long she has to live. On the one hand is the awful feeling that her frequent falls (another one today) signal a decline. We know that sometimes the disease can progress quickly. On the other hand, she has done pretty well so far and she realizes that she could be here next year laughing.