Lofty appointments

I mentioned recently my new post as researcher. Never one to toil alone, I have acquired a research assistant and a mighty fine appointment it was too. My brother-in-law is a reader at York University, who has spent most of his career to date on cancer research. For the non-academics out there, a reader is apparently not just the latest “Janet and John” series for 5 year olds, nor someone with a passion for book clubs. It’s also, according to Wiki, “the British academic rank between senior (or principal) lecturer and professor".

I was feeling very pleased with my new colleague (and his access to all the cancer related journals I can’t get my hands on) until he dragged me subtly from the world of patient blogs and 10 year old data to the world of Cochrane Collaboration – apparently the gold standard in research summaries. It does look impressive, and I do agree that accuracy is pretty important, but the question is, is it English? I have underlined the words I don’t understand and am on my 4th biro.

In fact, this week I haven’t done as much research, as Oakley and I have been sick since Thursday. We are both on antibiotics and strict instructions from the Doctor not to infect Quentin. Quent, pleased not to be the patient for once, has been bouncing around, doing a sterling job in child (and wife) care, alongside my parents who dashed up at an hour’s notice on Friday.

I’ll end this post with a loosely-related story about “my boys”. This morning, Quentin disappeared off to have his daily sleep. Oakley had been up in the loft with him and had seen a bag he fancied, which Quentin wouldn’t let him have (I later found out). With Daddy safely in bed, and Mummy cooking lunch, Oakley (feeling much better now) spotted his chance, climbed the loft ladder (which sits less than 10 cm from the top of the stairs) and brought down the bag. “Daddy says it’s for inside wucksacks” he told me, looking very pleased with his haul.

Quent has reluctantly agreed not to leave the loft ladder unattended. (He was of course rather proud of Oakley and thinks I am fussing because Oakley “never needs help getting up there”.) I had just got over that when, this afternoon, Quent sent me for a nap (revenge is sweet) and then snuck out onto the roof to mend the TV arial. Take it from me, smug grins are genetic.

As a friend once said, “He’s a lot of work”!

IL-2 be or IL not-2 be, that is the question

We saw Dr Savage again this morning and the results of the x-ray were that, to him, it looked "broadly the same" as the last one. He thought the radiologists might think some of the spots have got bigger, but there's no cause for alarm or immediate action. Phew.

Meanwhile, we went back over the "Which treatments and when?" questions. We are all agreed that the treatments will be:
1. immunotherapy (interleukin-2 or triple therapy ie. mix of interleukin, interferon and 5FU)
2. sorafanib/ sunitinib
3. experimental treatments such as vaccines / stem cell transplant.

The big question is which type of immunotherapy and when.

Timing. There is apparently a slight link between doing the treatment earlier and success rates, but the link is not that strong, because the treatment is aimed at the immune system not the cancer directly. Dr Savage is reluctant to start treatment too early and spoil the "jet set" lifestyle Quent is enjoying currently.

Type. Triple in this country or interleukin -2 in the USA. The US treatment is further away, more toxic and a lot more expensive, so we'd have to feel pretty convinced of the upside to go ahead. They claim cure rates of 5%-10%. When we ask about the response rates of the triple, in Europe, Dr Savage says it is difficult to give firm statistics as the tests are not randomised, long term monitoring is not great etc. They do, however, know that for "a handful of patients" the response is long term.

The big question is.. Is the USA treatment actually better, or are the USA just more bullish about their results? They might be more bullish because:

a) they don't have the British reserve / modesty
b) all health over there is private and hence they have commercial interest in being upbeat

The question is crucial but nearly impossible to answer. We would hate to put Quent through extra tough, highly expensive treatment, thousands of miles from home purely because good salesmen win out over cautious researchers. But we want the very best chance for Quent and the USA is putting out some very tempting statistics.

Dr Savage is going to find out from colleagues at the National Institute of Cancer in the USA, whether Quentin is a good candidate for IL-2, where might be the best place to go for the treatment and how much it might cost. He then suggests we go over and take a look, in order to make our decision.

Have a lovely weekend. This afternoon, Oakley is off to stay with his girlfriend and her family in Guildford (I kid you not), so that Quent and I can have some quality time together in a hotel in Chichester. Once Quent has run a scout gig tonight, that is. Hmm.

Helen Bronckovic

Over Easter, it occured to me that I hadn't done much Renal Cell Carcenoma (RCC) research recently. Finding out how we might cure Quent is by far the greatest priority in my life and I had been neglecting it.

No longer. This past week, I have been back reading about all the available treatments and who does them. I feel like Erin Bronckovic - not because I have suddenly developed fabulous cheek bones and a wonderful smile (sadly), nor because I think I am about to uncover a scandal. I'm thinking of the scenes where she stays up late at night, reading a load of medical information she doesn't really understand and thinking she might be onto something.

I am still drawn to the highly toxic Interleukin-2 (IL-2) because of its claims of "complete response" (cure!), albeit in a very tiny proportion of cases. It's only done in the USA and is administered in Intensive Care, so it's probably not a sensible route, but I want to ensure we have checked out every avenue.

In general, the more I read, the more hope I have. This is a field full of ideas and trials and "early encouraging results". (Generally a small percentage of people getting stable disease for a few months, but at least it's progress.)

I get the feeling that if Quent had been diagnosed 3 years ago, there would have been very little hope. And that if he had been diagnosed in another 3 years' time, they would really know what to do. As it is, there are lots of new treatments, but little experience of using / combining them. It seems there will be luck and guesswork involved in determining Quent's treatment regime. It's nail-biting stuff and I'm not looking forward to Quent's having to plump for a course of action.

Quent is also reading up and also, in general, encouraged. But he has to look after his body, which means lots of rest, so I drive the search engine while he sleeps. It's definitely a team effort.

In conclusion, dear-readers-except-one, take heart. We feel very optimistic. The remaining reader (Dr Savage) is probably dreading my arrival in his office on Friday. Once he has answered my record breaking list of questions, I will be heading off for a Mastermind audition - Specialist Subject; RCC treatments 2007. General Knowledge; non-existent.

Dr Savage meets the Easter Bunny

There we were in Sainsbury's, picking out the organic chocolate eggs for Quent and who should tap us on the shoulder, but Dr Savage. Oakley was sporting a rather smudged, Easter bunny painted face and was more interested in the Spiderman Egg than Daddy's Doctor, so I am not sure how much of an impression he made.

At least Dr Savage came over for a chat, rather than diving down any-aisle-but-this-one. I was touched. I am sure there are many consultants who would rather bury their heads in an array of toilet cleaners than chat to their patients.

Oakley and I had a great time in France. The weather was good, the 8-seater flight was fun, I made the most of Nana and Grandad's restaurant-cum-nursery and the real Easter lapin delivered in spades.

Quent discovered that the bank holiday speedboating course was in fact in early May and not over Easter. It's a variation on a theme, for those of you who followed the Desert Island Discs post. Wrong place, wrong date ... Detail has never really been his thing. Still, he also had a great weekend at home. He enjoyed long lie-ins and afternoon naps and started the geeky jobs that never seem to feature on my lists. And just to ensure there was a little speedboat content, he took the Scout RIB up the Thames past the Houses of Parliament.

Next visit to Dr Savage is 20th April - unless we see him in the fruit and veg before then.

A(dmin) to Z(oo) of a week's annual leave

We've had a great week, with Quent off work, using up annual leave. We didn't quite tidy the den as we intended to (Quent would dispute this, because he did put away a couple of cables!) but we did go to Legoland twice and London zoo once, all in glorious sunshine. Last year's tax return info is with Quent's accountant. And the jumble sale treasures destined for higher things (ebay) have finally made it to the virtual world - from the floor, where I have tripped over them daily for the last year and a bit. The week has not been entirely free of swear words but admin wouldn't be admin without a few blue phrases, would it?

This weekend it is, of course, Easter and Oakley and I are off to France while Quent does some powerboating course with the Scouts.

Meanwhile, Andy will be kayaking his 125 miles and no doubt Helen and Clare (and now also Ailie, Quent's niece) will be in training for their charity stints for Cancer Research UK.

So please remember... this is the deal.

Andy squashes into a tiny boat and canoes for 125 miles. Helen and Clare pound the streets with their dodgy knees and broken wrist, respectively. I try to find the humour in cancer as I keep you updated on Quent's progress. And, to paraphrase John Lennon, could you in the comfy seats, please just rattle your purses.

Thanks to all those who've already dug deep. For those of you who intend to make a donation to Cancer Research UK, but haven't quite got round to it yet, click on any of the following websites (and I promise this is the last time I will mention it!):

http://www.justgiving.com/dwcancerresearch (Andy)
www.raceforlifesponsorme.org/helenlangley (Helen)
http://www.raceforlifesponsorme.org/ailieaviss (Ailie)http://www.raceforlifesponsorme.org/singlehandedrun (Clare)

Happy Easter. May the bunny hide many eggs around your garden.