We spent the rest of Tuesday morning with a research nurse who was doing preliminary work for the clinical trial that Meg was considering being a part of. We were still concerned that the possible benefits of the trial medication might be outweighed by the problems it entailed. We had consulted a research neuro-oncologist, and I (Andrew) had searched the scientific literature for data from the preliminary stages of the clinical trial, which had been at several hospitals. A scientist from one of the trials kindly called me and gave me valuable preliminary data. I got in contact with another clinical trial via a former colleague, who learnt of our problems via this blog, and kindly offered to help.
Click "Read more" to....read more!
After weeks of searching, all the valuable data seemed to come flying my way by E-mail and phone calls to my new laptop and iPhone, all of it arriving on Tuesday and Wednesday, and all of it while we were in (or traveling to) medical facilities. The preliminary scientific data confirmed for us that (given the statistical caveats of the small studies) the study treatment (Avastin) did indeed offer the possibility of some benefit. It also emphasized the need for the bigger study Meg would become part of!The concerns about the downside of Avastin (the need to discontinue it before a second surgery) were laid to rest during our long Tuesday afternoon consultation with Meg's surgeon. She (Dr. Jost) also shared the results of Meg's latest MRI, which showed that her brain was healing well and had very little residual tumor. After much thought, Meg decided today (Wednesday) that she would indeed become part of the trial.
Wednesday was also the first day of Meg's 6 week radiation and chemotherapy regime. She was glad to report that the chemotherapy didn't produce the nausea that it does in many patients, but was not amused by the need to miss breakfast - she's got things rescheduled to avoid that in future. The actual radiation session was brief and uneventful. Meg did note that, as the treatment table rotated her in the X-ray beam, she felt like one of the protein crystals that she's spent her working life exposing to X-ray beams! She spent the afternoon visiting with a colleague (and fellow Seattle Philharmonic wind player) but still had the energy to go out to the store to get stuff to make us pizza for dinner. (I, Andrew, had spent the afternoon in the lab, trying to remember what I'd been up before our visit to the Emergency Room on December 12th!).
Meg was very relieved that the treatment seemed easy to undergo, but did feel more tired than normal, and retired to bed early. She's expected to get increasingly tired as the treatments continue, so we'll be making use of all of the kind offers to bring us food! Thank you all so very much.
If you want to take part, drop me an E-mail (andrew_taylor@me.com) and I'll forward it to Sue Amundsen in our lab, who's coordinating things. Also note that the surgery cut through a jaw muscle, so Meg can't yet open her mouth all that far, or chew anything too hard.
It's been very stressful gathering data and trying to decide on the best course, and I feel a sense of relief that that phase is over and the treatment has actually begun. Of course, I'm not the one being bombarded with X-rays...
(AM addendum: Meg slept very well and has pointed out several typos here, now fixed)
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