Antigua, we have take off

The summary of our meeting with Dr Savage was that:

• Quent's last x-ray was written up as "no significant change"
• The largest spot on today's x-ray seems to have grown by another millimetre, so again no need for immediate action
• He will chase his colleague in the USA

It is great news that Quent's spots are growing slowly although each millimetre is still another notch towards treatment. Dr Savage thinks at this stage that we might start treatment late summer or during the autumn. The autumn would be great, as that would be almost a year after Quent's diagnosis / nephrectomy.

Dr Savage did say that although the definition of complete response (Interleuken 2) is 4 weeks with no disease, in reality it is significantly longer and sometimes forever. Therefore we won't completely rule out US treatment at this stage.

The next appointment is 10th July, unless Quent develops symptoms or we hear back from the USA before then.

Antigua here we come!

Living beyond our means

We've been very busy of late. It has been like one of those supermarket dashes... See how much you can spend in 3 mins. Or in our case, 3 weeks.

A week ago we went, with friends, to the Fat Duck in Bray. Amazing restaurant, fantastic food, 18 courses of entertainment and Quent "I've-got-my-appetite-back" Webb still dragged me out for a curry that night! I am sure we are the only people to have had snail porridge, bacon and eggs ice cream and a chicken tikka masala all in one day. There was no dry ice at the Annapurna in Chiswick, but there were free chutneys with the poppadoms which made up for the lack of theatre.

Next week, Dr Savage permitting, we are off to Antigua and the Virgin Islands for a couple of weeks. We have our own yacht for 7 nights in the middle. I am not sure one non-sailor, one cancer patient and one 3 year old makes the ideal crew, but this is not the Fastnet so I think we'll be OK. Quent and Oakley seem pretty confident they can handle the boat between them. Apparently the islands are truly tropical and the snorkelling is fantastic so Dr Savage had better be permitting.

Meanwhile, we retain a sense of normality with the Scout Movement Centenary Camp, held this weekend in driving rain. Quent ran a pioneering activity which involved lashing together telegraph poles and sending Scouts to the top on rope ladders, as far as I could tell. Yes, I admit, I missed the big moment. I may be a Scout Leader's Wife, but in my case it's Be Prepared ... to tell me about it later if it's raining.

We will see Dr Savage on Tuesday. We haven't heard back from the USA yet, so we have an unusually small list of questions for him this time. I will post an update before we hand the keys to our house-sitter and head off to Gatwick.

Dear Prime Minister (which one?)

There is a petition on the 10 Downing Street website:

We, the undersigned, petition the Prime Minister to give his personal assurance to British Kidney Cancer Patients that the newly licensed and approved drugs; Sutent (sunitinib) & Nexavar (sorafenib) will be made available to Kidney Cancer patients throughout the United Kingdom on prescription and fully funded by "our" NHS. Kidney Cancer is notoriously difficult to treat, the standard cancer treatments of chemotherapy/ radiation therapy are not effective against Kidney Cancer (Renal cell Carcinoma). Leading cancer consultants agree that Sutent & Nexavar represent the first real advance in treatment for a hitherto almost untreatable cancer

If you would like to sign the petition, click on the link below.

http://petitions.pm.gov.uk/kidneycancerRCC/

Currently the petition has more signatures than the one to reward Health Service Workers with an inflationary pay rise - and fewer than the one to make Jeremy Clarkson Prime Minister.

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.