UCSF day

Chris shows his charts to Dr. Lu during Neuro-Oncology consult

Yesterday we spent most of the day at UCSF, our approximately monthly routine, getting an MRI and MRS, followed by a consult with our neuro-oncology team. During these events, depending on the tumor news, the next course of treatment is decided upon. As before, the tumor seems to be responding positively to Temador, a relatively easy-to-administer chemotherapy.

Part of the tumor seems to be necrotic, and the Magnetic Resonance Spectroscopy shows live, but relatively inactive cells. The tumor shows up increasingly smaller and lighter in the last 4 MRIs – it’s no longer the ‘hot’, fast-growing tumor that Dr. Berger’s November craniotomy revealed. That’s the good news.

The bad news is the detritus from the radiation therapy (aka RTX) still clogs the area around the tumor, and if left untreated will cause edema – brain swelling – that shuts down my left side by putting pressure on motor strip neurons. Steroids control the edema, but too much steroids causes weakness in my large muscles that makes it as hard to walk as the untreated edema.

So the trick is the right balance, which we’ve hit, more or less by chance twice since the RTX stopped. So this time around I’m charting dosages and how I feel and can walk while I slowly ramp down the steroids. I’m getting a feel for how long the steroids persist in my system – oncology nurses assume 2 days, but it’s almost certainly more like 7 days in my system – so Im patiently working the steroids down to where I’m strong enough to walk, but not getting clobbered by edema.

Even with world-class doctors – and Dr. Liu, above, was among the first to say this – it’s important to take a hand in managing one’s own care. I’m showing Dr. Liu my chart of dasily dosages vs. ability to walk and function…


About Chris Gulker

Chris Gulker, a self-described Infuential Blogger, lived in Menlo Park, California with spouse Linda. He passed away in late October 2010.
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