Just an update from my excursion to Sunnybrook Hospital in Toronto last week. I went to see Dr Patrick Cheung, a radiation oncologist, about using targeted radiation on the stubborn metastases in my lungs. Dr Cheung explained to me that generally this is used on mets where either: a) a person has had only a few mets from the beginning, as a way of potentially ‘curing’ or getting them to ‘no evidence of disease’; or b) where a person has a number of mets, mostly stable, but one or two growing, which need to be caught and stabilized, as a way to extend survival.
My situation is a bit more complicated because while I have only a couple of stubborn mets, they are not growing; but neither have there only been a couple since the start (there were at least 16 tumours, 8 per side, last May when things were least under control).
Notwithstanding this, Dr Cheung said he was willing to do the therapy, with a goal of stopping/stabilizing the stubborn mets, to provide a treatment ‘holiday’. This would be beneficial both to determine whether the other 14 were actually eliminated by Sutent (not just made too small to see), but also to give a break to my heart, thyroid, liver, and remaining kidney, all of which have a hard time on Sutent, and a break to me from the feet/mouth/stomach side effects.
I made a chart at the end of my visit that looked like this:
1. at least a brief (3 month) Sutent holiday guaranteed 1. likely short term fatigue, dry cough, and LT small scarring to lung.
2. possibility of a longer treatment holiday if former spots 2. possibility of radiation-induced pneumonia, treated w steroid – 5%
do not regrow (months or years) – possible
3. potential to inhibit future mets (potential – not proven) 3. unknown – probability that regrowth is Sutent-resistant.
When I asked Dr Cheung about the ‘unknown’ – possibility of Sutent-resistant regrowth – he said ‘no, that isn’t an issue’. I thanked him, and said I wanted to follow up with my oncologist about this, but that I’d probably want to proceed with radiation.
I was very excited in discussing this with my friends and family late in the day after this appointment. (Had been up since 3 a.m. but stayed up fairly late due to travel back and excitement). On the plane on the way home, I’d even had a small cry only because I was acknowledging the possible upside — a long period of time off treatment, feeling well, being back to myself – and hadn’t allowed myself to feel this kind of hopeful in so very long.
Unfortunately, on Wednesday I heard from my oncologist. Although most people do not end up with Sutent-resistant RCC following a treatment break, a significant minority (25%) do. Prior to hearing from her, I’d thought to myself that I’d be able to live with a 5-10% risk, but anything higher (20%+) would be too much, given that Sutent was essentially keeping things stable at the moment.