A little knowledge...

We had a great bank holiday in York seeing people from both sides of the family. Oakley saw 4 of his cousins and had a ball. We delighted in seeing him from a distance – on the trampoline, in the park, playing “cool” as he called it (pool to the rest of us). He was bathed, fed and generally pampered by Kate and her friends.

Meanwhile I had my crash course in cancer research from Rob the Reader.

I had already worked out from the Cochrane paper that the survival rates vary little between treatments, but there seemed to be several mentions of Interleukin-2 having much better “complete response” rates. I took this to mean cure (misleading all of you into the bargain) and was hooked.

Rob the Reader saw straight through this. “What is this vague term “complete response”?”, he asked. We drilled down from the Cochrane Collaboration paper into the individual papers and found that “complete response” means a disease-free period of at least 4 weeks. Four weeks? No wonder politicians are called spin doctors. “Bloody marketing”, as Quent would say.

I admit that the news had me, fairly unsuccessfully, fighting back tears. I had pinned so much hope on those “complete response” statistics, only to find out they are not all they’re cracked up to be. Rob has put me straight (thankfully). I need to be focusing on survival rates (life expectancy) rather than response rates (which relate more to the size of the tumour). The two things that matter are the length and quality of Quent’s life.

We are very lucky to have such experts on our side. We have another friend, David, a very respected renal consultant, who has been warning us quite strongly not to dash down the US route. After our last phone call with him, Quent was pretty convinced that UK was the answer. But, in spite of Dr Savage and David’s concerns, I couldn’t let go of the “complete cure” stuff. I guess I just desperately wanted to believe it.

We are going to try to find out more about the patients showing complete response – was it just 4 weeks, as per the definition, or actually much longer (in which case it may become interesting again)? We still want to know more about the US treatments, but we are less keen to re-mortgage the house and stick Quent into intensive care without better statistics.

Meanwhile, the positive news is that one of the studies showed 10%+ survival rates, ten years after treatment. For both high dose and combined therapy. I was a bit “hoped out”, especially as Dr Savage never gives us such stats, but Rob was very encouraged. Which is good enough for me.