I had an MRI a couple of weeks ago and got the results last week. There has been slight progression in all three tumours in the brain.
That's the bad news.
The good news is that there are no new tumours and that my spine and cerebrospinal fluid remain clear, with no detectable cancer. This means that the Herceptin must be doing something for things to be progressing relatively slowly.
We just have to figure out how to make it better at its job.
There is very little research, when it comes to leptomeningeal disease (or leptomeningeal carcinomatosis), so in lots of ways we are making things up as we go along. The first thing we are going to do is increase the dose of Herceptin and to try and slow the drug down as it enters my brain.
At tomorrow's treatment, we are going to increase the dosage from 60mg to 80mg. The Ommaya Reservoir only holds 60mg and at the end of treatment, the oncologist usually empties it by pumping (really just pressing down on it a few times). Tomorrow, once it is empty, he will add another 20mg and let it drip down over time into the brain.
The next step (we have not determined when) will be to add methotrexate. Herceptin has been shown to be more effective when used in concert with a chemotherapy drug and methotrexate has been shown to be safe for intrathecal treatment (directly into the brain, either through the Ommaya Reservoir or a lumbar puncture).
You may have noted my use of the word "we". More than at any stage of treatment, this process has been incredibly consultative. My oncologist (and the one who replaced him when he was away) has discussed every option with us (Tim and me) and encouraged us to do our own research and bring it in. Since there is just not that much out there, we are trying to find what we can.
We've also discussed safety, liability (for everyone) and quality of life. At this point, I am not willing to go in more than once a week (or to feel sick all the time) nor am I willing to do things that are only in the initial phases of safety or as Dr. G put it "could fry your brain." These desires dovetail nicely with the hospital's and and my doctors', so we are not in a battle about resources.
Hopefully, more things will be available, once we have tried these next steps. When I am sad about how much life has changed for me, I remember that these last few months have been a sort of gift. As my oncologist says, I am "not supposed to be here."
I'm mostly comfortable sitting in this place. I live in this body, so I am not surprised by this news. I want to stick around as long as I can but I also want this time to be happy. It's a delicate balance.