She is going to start a chemo treatment, a once a day pill, that apparently has reasonably mild side effects. Temodar is unique in that it crosses the blood brain barrier. So if it's effective, it's going after both body and brain. He's not supportive of Interleukin-2 for the time being. Too toxic for her and for her brain. So there was a discussion about treatment and efficacy and quality of life. We see him again in thirty days and she will have a brain MRI two days before that. That will give him time to assess chemo outcomes as well as give her brain more time to calm down. She has a tumor on her arm which is a convenient gauge. Doing the Temodar is a pretty low risk low side effect decision, that doesn't compromise her ability to do IL-2 later.
Interestingly enough he wasn't concerned about IL-2 and interaction with seizure medications. If she goes on IL-2 at any point she'd stay on them. While she is reducing the dose (over two months) of one of the three antiseizure drugs she takes, he was quite adamant about keeping her on the Kepra. Like forever. And the steroids for that matter, for the time being. So apparently the clinical trial issue over treatment and seizures is part of their protocol agreement with the FDA, maybe? At any rate I surmise he isn't opposed to IL-2 for her ever, it may be something we could consider, but in the context of potential benefit relative to risks (significant) and life quality during and post treatment (awful during the two weeks and apparently for several months thereafter - it's a hard recovery). No doubt we will discuss it after our meeting on August 3rd.
We took a walk in the Arboretum afterwards and then had lunch outdoors at Cactus in Madison Park. Very rejuvenating. She wants to think of the rest of the way forward as a process, not an event, and make it a lovely process the entire way. Kaplan didn't think there was immediacy if nothing left worked, but he did say months, maybe 3 maybe 6 maybe 16. That took a bit of pressure off Meagan who was more fearful it was more immediate. This way it doesn't feel as negative or there is a rush to settle certain things. She can take it as it flows. And she wants sadness low and humor present.
It's really challenging for me to keep it all straight and understand the choices and consequences. It's triply hard for Meagan with her cognitive issues. So lots of re-explaining. It's also pretty clear there are lots of matters of judgment and the individual's disease history and physical state can lead to one choice over another. She, and I feel pretty darn confident that Kaplan is looking out for her best interests and recommending doing what can be done based on her state and knowledge of the true efficacy and impact of the drug or combo in question. Meagan gets that there are few treatment options left and their outcome potential quite slim.
I get the distinct impression, I could be wrong, that even though two of the clinical trial locations have said no, the other probably not, but not categorically no until an in person meeting and review of the file, that he'd be opposed to that course even if it was offered based on toxicity. And because all of those require her to be off antiseizure meds. Let alone free of any brain involvement, which we will know about in thirty days.
I definitely feel numb right now. So much to process.
No comments:
Post a Comment