Doing drugs with pretty nurses

I may have given the impression that this treatment consists of a series of IL-2, pethidine and oxygen. The truth is far more complicated. When I heard Quent say to one of the nurses "I think I need another shot, Cate", my thoughts turned to Pete Doherty. Even he may (allegedly) be phased by the concoction of pills and injections which has been Quent's life for the last five days.

On top of the IL-2 and pethidine, he's had ample quantities of metocopramide, ibuprofen, temezepam, gaviscon, piriton, levofloxacin, paracetamol, ondansetron, gabapentin, ranitidine, nystatin, phosphate sandos and loperamide. New names are being promised as a going home present. In my acceptance speech, I would like to thank the nurses for their assistance in translating the prof's writing.

Side effects to date include thrush, flaky skin, foaming at the mouth, shortness of breath, fever, low blood pressure, painful legs, itchy eyes, poor circulation, swelling and diarrhoea.

The latter provided last night's drama, after a final dose which otherwise was better than expected. Quent realised he needed "to go" and so led a 4am procession to the bathroom, with nurses, wife and various monitoring machines following behind. Unfortunately, Quent collapsed on the way and then convulsed when we got there, so a portable oxygen canister joined the parade. Oh, you'll always find me in the bathroom at parties.

We are hoping to leave this evening or early tomorrow morning. These five days have been a steep learning curve. We know how wonderful and experienced the team is here. We know how Quent is likely to react, the layout of the hospital, what to pack next time - and what not to. And, last but not least, we have learned to appreciate the wonders of the out-moded and under-rated commode.

I don't like Mondays

Today was tough. Quent, ever the showman, put on a spectacle in time for Dr Savage's visit. He was foaming at the mouth and even the very cool nursing team looked worried. Bigger oxygen masks were sent for - as well as portable ECG and X-ray machines, doctors and plenty of nurses. With scant medical knowledge (just enough to know that lack of oxygen is serious) and a fertile imagination, I was very frightened.

A couple of hours later, all was well. Quent's various measurements seemed to have recovered and even my heart rate was returning to normal - no-one measured it, but I did at one point wonder if I should grab a go on the ECG.

Quent was just rousing (but still quite dopey) when Prof brought Dr Savage round. As they arrived, one machine went blank. Everyone was trying to work out what was happening and Prof Hawkins was looking quite concerned. Quent eventually removed his oxygen mask and mumbled that it might be plugged into the faulty socket in the room. Sure enough, the back up battery had just run out and all was well once we'd switched the plugs around! How typically Quent is that?

We are now "ready" to go again (though Quent still looks exhausted) Prof Hawkins has said Quent can choose whether this is the last dose (number 11) or if he goes for one more. Philip-the-success-story told us today he had 10 the first time round, so I am voting for a quick escape.

Reasons to be cheerful

After such a glum post this morning, I thought I should redress the balance as we are both feeling brighter.

Dose 8 was better than dose 7 and Quent was back to just one shot of pethidine. We are waiting for dose 9 now. Quent is feeling a bit knocked about, but looks better than he did in the night. He is now off the oxygen. Side effects include yellow, tingly hands and nasty thrush in his mouth. I have been told to avoid kissing him. :o(

He's clearly not himself. It's hours since he suggested a romp in the bathroom might be possible and he has slept for much of the day. A good choice if your wife is singing along to the Sound of Music.

We have limited visitors for obvious reasons. We have however enjoyed seeing:

Duncan and Helen: Quent's brother and sister-in-law.
Andy Wade: a friend from nursery, primary and secondary school days Quent hadn't seen for over 20 years.
Philip: Another IL-2 patient who came down the corridor to give us some encouragement. His last scan showed his tumours to have totally disappeared, so he is having his "top up" / one for luck. It was great to meet a success story - and a lovely man.

Tomorrow we will have a VIP visitor. Dr Savage is coming up to see how it all works and how Quent is doing. We are both looking forward to seeing him and the nurses are all primed to show him around.

Hanging in there

Last night was tougher. Quent's blood pressure dropped considerably. His temperature was very high, as was his heart rate. He had an oxygen mask on and it was not pretty to watch (I'm not just talking his hair, though that is far from pretty too).

I found it all quite hard, but I keep telling myself that they know what they are doing (they clearly do!) and we had expected it to be even tougher. My concerns were confirmed when a special nurse arrived this morning to introduce herself - from "critical care outreach". I think they go round the hospital checking out prospective clients. She had heard of Quentin's situation and came to talk through the tough night and offer words of comfort and encouragement. I think she was a bit surprised that Quent seemed more intent on getting an air bubble back up the pipe to the top of his drip bag. Thank goodness I was looking ashen faced enough to make her visit worthwhile.

So, we are waiting for dose 8. Quent is still in "bring it on" mode, but the nurses want to wait a while before hitting him again (with the drugs, there's no smoking and, I am sure, no smacking in the hospital). I wish I could say we were nearly there, but we're only just over half way.

Oh, and we are both missing Oakley like mad.

On the positive side, the sun is shining and this is, as Quent keeps reminding me, our chance of a cure.

Il-2. Reaches the parts ice diving couldn't reach.

Quent has now had five doses (out of max 14) and we are settling into a very steady pattern. Exactly 2 hours and 10 mins after the IL2 goes in, the rigours start (that's the extreme shivering, shaking and teeth chattering). Pethadene helps calm them and then Quent sleeps for a couple of hours. Generally, he feels fine when he wakes.

This morning he decided to try to fight the shivers with blankets and cuddles rather than Pethadene. This has apparently been tried before, but doesn't work. It meant that his reaction was a bit more extreme than for the others doses, even once the Pethadene was administered. They were preparing oxygen, but he didn't need it. "This is what I thought ice diving would be like", he said.

He has also told me that he thinks the shaking is a sure sign of ebay withdrawal symptoms. There is no internet connection in the rooms. I know he would be straight onto his work emails, so I am in no rush to try to sort this out for him.

He is very popular with the nurses, who love his attitude. Prof Hawkins is also very pleased with his progress. I, however, am a little concerned. Being able to predict what Quent will do down to the minute is not something I am used to. IL-2 - the new punctuality drug.

Quent's take on it all? "It's fantastic, isn't it? Being locked in a bedroom with your wife for five days. I'm so happy."

The start of the treatment

The stress test was fine, as was the chest X-ray. We were settled into a room by early afternoon yesterday and the drips and preparatory drugs started. Prof Hawkins came to see us to answer any questions. All the doctors and nurses have explained that the treatment is pretty tough and that it will push Quent's body to the extreme. The words "feeling crap" have been used time and again. But yesterday we both felt pretty good. Quent seemed to enjoy reading the papers, watching films and eating stodgy food.

The regime is interleuken every 8 hours and observations (blood pressure, weight, bloods, temparature, something on his finger) pretty much every hour in between.

At 8pm the first dose of IL-2 went in and 2 hours later Quent started shivering. His teeth were chattering so much it looked as if he was mucking about and we got the giggles. The nurse gave him some pethadene and it stopped immediately. Impressive stuff. He had another dose at 4am and 2 hours later, the same thing happened. This time the pethadene didn't work as quickly and he did the false teeth routine for about an hour. Followed by vomiting.

Followed by my eating most of his breakfast!

Quent is asleep at the moment, and obviously "feeling crap" as the Doctor ordered. But he's smiling through it all and we've had a lovely time in an odd sort of way. He is, as you all know, great fun in every situation and we don't often get this much time to enjoy each other's company.

Thanks for all your comments. He will love hearing them when he wakes.

Nothing's simple

Prof Hawkins confirmed this afternoon that we have the go ahead to start treatment tomorrow evening. Which is good because we are all packed and Oakley's childcare is sorted.

However, there is a complication. The ECG that Christie's did when we went up a few weeks ago is "slightly abnormal". The Prof said it's probably OK, but we should do a stress test tomorrow morning. If there's a problem, we won't be able to go ahead with the IL-2 treatment.

I don't know about Quent's heart, but mine doesn't feel too great right now.

He's got an ology

Quent does it again. While we worked away at our A levels all those years ago, Quent decided to keep his powder dry. He wasn't about to waste top set status on his school days. Thirty years later he pulls it off. Top set in the most important subject out there - Histology!

Prof Hawkins emailed us at 6pm this evening. "Histology is perfect. Will sort out admission. Hopefully Thursday."

Thursday? That's ... the day after tomorrow. Thank goodness this is Manchester and not Washington.

Quent now has a 3 in 4 chance of some response. Just a few months ago, we were still looking at 1 in 5.

I am drunk on happiness and, yes, a little champagne. We are over the first hurdle. I can't stop crying. Quent can't stop sniffing (he still has a bad cold, which has me a little worried, but I have told the Prof so presumably it's OK). My head is a blur of childcare, hotels and packing. Quent is trying to work out if he can wire up some garden lights before we go. It's all top priority stuff.

We'll keep you posted, but in the meantime, please raise a glass for the 47 year old in the top set. And for yourselves. Those prayers, positive vibes and best wishes have got us this far and we couldn't be in a better place.

A waiting game

We have been waiting to get a date from Christie's, so I have been checking my emails even more frequently than ever. Yes, really! Tonight we learned that the sample still hasn't left Charing Cross, so it will be next week at the earliest before we know more. Apparently there's been a technical hitch of the slide-to-envelope-to-postbox variety.

I confess I have had those sorts of hitches myself - that contents / envelope / address / stamp / postbox process has fooled me with many a birthday card. But it doesn't stop the frustration. Top of my own birthday wish list was the chance of Quent's being in the top pathology set. I guess I shall just have to settle for all those material, girlie things in the meantime.

Over the past few months, we have been following the progress of Vicky, a close friend of a close friend of ours. She was diagnosed with breast cancer just after Quent's diagnosis and her little girl is not that much older than Oakley. Vicky has been remarkably brave, like Quent. We follow each other's blogs and share the ups and downs. We have been very upset to hear this week that her cancer has spread to her brain and liver. Our delayed pathology results are nothing in the scheme of things.

We have also been very touched by your comments, emails and phone bids for Oakley. Not to mention Anita and Jonathon's amazing open-ended offer of a whole wing of their house. Thank you. As you know, we always look for the silver linings in all this and plentiful offers of childcare seems to be one of them. We reckon we're probably covered to post puberty, which is pretty good going.

The waiting continues. We will let you know as soon as we hear anything. It seems it will be end July at the earliest before Quent's treatment starts. Do the pathology department not realise that Scout camp starts on the 18th August?

Boy for sale

The scan revealed that things are a bit, but not dramatically, worse. Or in Quent's words, "There are more than 10 spots and some of them are getting quite chunky".

There are also infected lymph nodes around the base of the lungs. The head scan was clear, however, which is great news.

Surgery is ruled out as an option (it was always a long shot), but we can still go for Interleukin 2 in Manchester. Quentin has decided he would like to start as soon as possible. "If it's palliative, you want to spin things out, but if it's curative, we're better getting on with it".

Prof Hawkins' advice was to keep as fit as possible before treatment, so I will be cracking down on the following for Quent:

* Lots of rest.
* Daily exercise.
* Strict diet to get his body as strong as possible.
* Daily supplements.
* Avoiding people with any sort of infectious illnesses!

So we wait to hear when we start, but it will probably be in the next few weeks. Anyone want to look after a cheeky little 3 year old?

Waiting for results

A typical morning before we go in to get the CT results.

Helen lying in bed, unable to get up after such a sleepless night. Quentin dispatched to get tea having been fast asleep and snoring loudly all night. Oakley making the invitation list for Mummy's birthday party. So far on the list: most of his friends, a few of mine, Father-Christmas-and-his-presents and a donkey. I can't wait.

You heard it here first!

We saw Dr Savage this morning and told him about our trip north.

He said “If it were me, I would have interleukin 2”, even before we had a chance to ask him the question.

That’s good enough for us. Manchester here we come. Quent had another CT scan following the appointment – brain, chest, abdomen and pelvis. We will get the results and discuss next steps on Thursday. Please keep all the prayers and positive vibes coming for excellent scan and histology results. I am convinced they are a key contributor to all this hopeful news.

Read on for a few “FAQs” or revisit on Thursday, when we should know a little more.

*********************************************************

Why didn’t they know about this treatment before?

As Prof Hawkins hasn’t published his findings yet, Dr Savage only found out about his IL-2 work in a London kidney cancer meeting - when he was telling the others how slow the US team were to get back to us. (Thank goodness they were!) Until Dr Hawkins publishes his results (I hope I’m not stealing his thunder), people are not generally aware of his work.

Isn’t it really dangerous?

Dr Savage said that the general impression of IL-2 (a dangerous treatment, with little chance of success) has been based on US data from the 1980s onwards (when they used to give it to everyone). However, times have moved on and much more is known about when and how to use it. It seems from Dr Hawkins’ experience that, for the few people who fit the bill, it’s becoming a fairly routine treatment with interesting results – and only 25% of patients going into Intensive Care!

What about the idea of surgically removing the big spots?

Dr Savage agreed that we may consider surgery to remove the largest spot(s), but somehow it seems unlikely as, on the last scan, Quent still had quite a few.

When will we know what Quent’s chances are?

Dr Savage will try to hasten sending the tumour sample up to Manchester for analysis. It sometimes takes a while, so we are not sure when we will know more on that one. But he did say that Prof Hawkins is keen to treat him.

First time we heard "The Cure"

We can't count our chickens and the chances are still not great, but it was very exciting to be sitting in a meeting, talking about the possibility of a cure for a disease we had been told was incurable.

Prof Hawkins was very pleasant and full of facts and figures for us, including:

1. Christie's Hospital, Manchester, is a big cancer centre and they see 120 renal cancer patients a year. They treat approx 20 - 30 with high dose interleuken 2 (IL2) and have been doing so for 3 to 4 years.
2. Although the definition of complete response is just 4 weeks with an absence of tumour, in fact in 75% of complete response cases, the tumour never relapses.
3. In general, 10% of IL2 patients treated get a complete remission (based on a small number of patients). However, many renal cancer patients aren't even accepted for this treatment.
4. When they randomised high dose interleuken 2 against low dose intrevenous and low dose sub-cutaneous, the chance of long lasting, complete response is approx 7x as high with high dose intravenous.
5. IL2 doesn't have much success as a second line of treatment (eg. after other types of immunotherapy)
6. Their experience (again, small base) is that approx 30% of their patients have had some response, with half of those getting a complete response. None have relapsed yet (but early days for some). Even those with partial response get a slower tumour growth rate than on other treatments.
7. They then looked at the histology of the primary tumour, to see if certain groups get better results. There are three groups:

* In the top group, 75% responded with half of those getting a complete response

* In the average group, there is about a 20% response rate

* In the worst group, there is only a 3% response rate (so they no longer treat these people).

8. The treatment involves 5 days of treatment every 8 hours or so for as long as your body will bear it (max 14 doses, average about 8 - 9). Then 5 days recovering, then 5 days feeling OK and then they start again. After these 2 goes, they give you two months off and then re-scan. If there seems to be a response, they start the cycle again, up to 5 times plus an extra one (ie. treatment can take 18 months). If there is no response, they stop. (I will post more details on treatment & side effects if we go ahead, to minimise confusion).

Quentin

They need to analyse his tumour to see if he is top or middle set. (Let's hope this is more like Physics than French.) They seem to know already that he isn't in the worst group.

The three options for Quent are therefore:

* Suitable for treatment, get on with it quickly

* Suitable for treatment, but there's no rush (if the spots aren't growing)

* Surgery. Dr Hawkins said that if (BIG IF!) there are only one or two spots left (given some had disappeared with Quent's spontaneous remission), they could make a case for cutting out the remaining one(s). If there are only 1 or 2 metastases and they remove them, there is a 40% chance they will never come back (and if they do, we still have IL2 up our sleeve).

Conclusion

A very positive meeting and Quent is very keen to go down this route, in Manchester rather than the USA. Probably the most important fact is that with IL2, the objective is to cure the patient, whereas with interferon / combination, it is basically palliative care.

Professor Hawkins

While we were away, Dr Savage found out that there is one guy who does interleuken 2 in the UK. He's called Prof Hawkins and he's based in Manchester. We have an appointment with him on Friday to find out more.

I find it a bit spooky, his being called Prof Hawkins. We have seen Prof Gore, Dr Savage and Mr Christmas. If Dr Savage is ever off, his Registrar, Dr Crook will apparently be pleased to see us.
And now this Prof Hawkins guy.

I hope he's nice and I hope he's helpful, but I can tell you one thing - there's no way he's getting a part in this year's panto with a name like that.