We saw Andrew Chi, head of neuro-oncology at NYU, today. He was clear, empathetic and impressive – both Ed and I came away feeling he would be an excellent person to put our trust in.
He has proposed aggressive treatment for the aggressive tumor I have been confirmed to have. That involves six weeks of radiation and chemo (in the form of pills) combined – the radiation 5 days a week and the chemo every day. Then a second stage of chemo alone lasting six months.
He says that people’s experiences of the treatment vary enormously. In the first stage, which should start in about a week, some people can feel incredibly tired, others not so. So we’ll see, and deal with whatever comes at us.
Chi is obviously at the forefront of new experimental techniques which are based on each individual’s genetic make-up, and are customised to them alone. He is also very tied-in with the relatively small number of people in the US and around the world (he came from Boston where this research is probably most advanced anywhere) and made clear to us that he would put my needs first, and would make sure I get onto any clinical trial that was appropriate for me. He stressed that this world is moving incredibly rapidly, with new innovations coming thick and fast. But he also emphasised that clinical trials tend to take place further down the road, after the more conventional round of radiation and chemo is over. And only then if needed. So again, we’ll see.
He came up with four reasons to be cheerful: the tumor was small; most of it was taken out in surgery; it is in a relatively “silent” part of the brain where damage to functions is less likely; and my age which should make me more resilient to the side-effects of treatment. Beyond that he underlined the importance of exercise and a healthy diet, so I’m going to be walking regularly in Prospect Park – companions more than welcome please! – and with Tess and Emma now declared vegans that should make sure my diet is from now on suitably austere. Yug.
Chi has advised that I will need to be accompanied to NYU every day once the treatment starts, which should be in about a week or so. We were so impressed by him that we expect to stick with him, though we are getting a second opinion on Thursday with Dr Iwamoto at Columbia just to tick off all the boxes.
That’s it for now. If this website seems to work for all of us, we’ll post to it as we go along. But please keep the direct contact coming.
Jessica and Edxxx