VanSel1 biological drug trail Cycle 1, Days 6 - 14: Watching and waiting

These last two weeks, it feels like we have been on guard duty 24/7 - watching and waiting on a number of fronts, ready to spring into action if necessary.

It's now two weeks into the VanSel1 drug trial and Steve has been taking a daily dose of vandetanib, starting with four days on the "loading dose" of three 100mg tablets, then reducing to two 100mg tablets per day thereafter.  

So far, he hasn't had any noticeable side effects.  The biggest challenge has been getting into the routine of taking the tablets at a particular time each day AND remembering to write it down in his record diary.  The timing hasn't been critical up to now, provided he takes the tablets within a window of an hour.  However, that will change tomorrow.

Tomorrow, Steve will start taking the second trial drug, selumetanib.  He mustn't eat anything for two hours before taking this drug and one hour afterwards.  This makes the timing of the dose much more important!  We have decided on 11.30 am as the best "dose" time for us.  We must finish breakfast by 9.30 am at the latest and not start lunch until after 12.30.  And no elevenses!

If Steve has side effects from the drug trial regime, these are likely to start when taking both drugs. We are preparing ourselves for the worst but hoping for the best, as always.

We have also been on guard duty for other reasons - keeping a close eye on river levels and the rise and fall of flood waters as the top of the food gauge in the stream at the end of our street has submerged, reappeared briefly, only to disappear again as storm, after storm, after storm sweeps in across the Atlantic to batter the British Isles. 

As you can see from the photo below, West Oxford where we live is a relatively small raised area in the middle of the Thames flood plain.  One of the Thames tributaries lies at the end of our street.  The park beyond the stream is at a lower level than the built up residential area, so we expect it to go under water for a few days most winters (and sometimes at other times of the year).  

The Thames in flood through Oxford

However, it has now been under water continuously for more than five weeks, in fact since 4 January when we had our first flood warning, and had been submerged on and off before that over Christmas.  We are told to expect water levels to rise again this week as the rain that fell upstream from us works its way down river. So we watch and wait, hoping that levels will not rise above last week's peak.

We are looking forward to see some green grass again instead of water....On the other hand, perhaps we should get ourselves two kayaks and take to the water like this couple I met at the end of our street a few days ago.  They had paddled through the floods from the other side of the city...

Kayakers arrive at the park at the end of our street

...or join this lot, who paddled across parks, along roads as well as the river into central Oxford from the north!

If you want to see what it was like in the January floods on the main road (Botley Road) at the other end of our street, watch this video! Paul's motor bike passes the end of the road where we live about 2 minutes 14 seconds into the film.  

I'm pleased to say that in the last two weeks, the Fire and Rescue Service have had pumps working at three strategic locations along the main road and we have not been cut off by flood water on Botley Road this time around.

We have also been keeping watch on the winds.  Luckily for us, the worst of the winds have hit elsewhere in the country. But they have still been strong enough to blow down a tree in the park and lift a slate off the roof - only one so far, thank goodness.

And so the watching and waiting goes on....At least the unprecedented weather has taken our mind off the drug trial to an extent.  Day 15 onwards in Cycle 1 could change that. I will keep you posted.  

We are also waiting and watching out for the start of consultation on the Saatchi Bill, aka The Medical Innovation Bill, which I wrote about last week. Click here to see that post.  All the meso bloggers have been getting behind it.  We have even had a thank you on Facebook.  Together we are stronger.  So true!  

Baby steps forward

This time last week, we had paddled home through the floods after our visit to the hospital to discuss treatment options with Steve's consultant and were feeling optimistic! A lot of water has, quite literally, gone under the bridge since then...

River levels in Oxford peaked last Thursday and have since being going down very slowly. Although the park at one end of our street remains mostly under water, the main road at the other end of the street - which had been closed due to flooding - eventually reopened and we were able to go out in the car on Monday to re-stock food and other essential supplies.

As anticipated, many of the things we had been storing in a rented garage a few streets away have had a good soaking, so a lot will have to be thrown out/recycled in the coming weeks when we have the time, energy and inclination to get our hands dirty.  In the meantime, it can carry on drying out...

The reopening of the main road meant that postal deliveries have resumed.  At long last, a camera that I won in a competition back in September has arrived, together with a camera case by way of apology for the delay.  Thank you Olympus - I look forward to playing with the new kit! However, there was no sign of the information sheets about the VanSel drug trial Steve hopes to take part in, which was making us a little anxious.

Then yesterday afternoon there was a phone call from the hospital saying the information was now available - did we want to collect it?  Yes please!  The timing of the phone call was fortunate.  Shortly after, the electricity supply which had cut out several times over the previous two days, went off again and stayed off....a victim of the flooding and high water table levels.  Thank goodness we had a large supply of candles, a big new box of matches, a film downloaded on to a fully charged iPad, plenty to eat and a bottle of wine.  After the initial frustration, it turned out to be quite a romantic evening!

Power supplies were restored about 8 o'clock this morning, just in time for breakfast.  Apparently the fault causing the problem has been found and the engineers will be working on a permanent fix tonight.  We are bracing ourselves for another power cut this evening, but hopefully that will be the end of it...

We have been to the hospital today and collected the information sheet about the drug trial which I scanned quickly on the way back home. I confess that when faced with a long list of possible side effects in black and white, the prospect of going back into treatment looses some of its appeal.  

In particular, the trial drugs make skin very sensitive to UV light so anyone taking part has to cover up as much as possible and use a minimum of factor 50 sunscreen on exposed parts when outdoors, even in winter.  Steve is not a great one for sunbathing, but neither is he a great fan of slopping on sunscreen, so that would be a challenge for him.  

Other side effects are similar to those experienced with previous chemo regimes - not things to look forward to...On the other hand, not every one experiences the same effects so until treatment begins, we won't know how it will be...

We'll read through the fact sheets in detail tonight and if Steve still wants to take part, he'll phone the hospital tomorrow to arrange an appointment to  deliver the consent forms and get dates for the extensive tests that have to be carried out to make sure he's well enough to take part in the drug trial.  Then we wait for the results....so it's baby steps forward....

It was strange going back to the Clinical Trials Unit today. The last time we were there was some four years ago, when Steve took part in the Velcade drug trial. The Cancer Centre had only just opened then. The NHS Trust had commissioned "uplifting" artwork and we were delighted to see one of my photos on display in the room where Steve had treatment several times.  We noticed today that it's still there, and still looks good.  The doctor we saw today was also impressed when we pointed it out to him!

With the possibility of another power cut tonight, I think I ought to post this now rather than wait until photos have been downloaded.  Time to take a deep breath before reading the information sheets and facing the demons of fatigue, mouth sores, skin rashes, diarrhoea, blurred vision, loss of appetite and all the other stuff that may be waiting for Steve in the next few months, assuming he signs the form and passes the tests to get on the trial.  Here we go again...probably, maybe....

a little bit of a distraction before the big day...

If you are a regular reader of the blog, you will know that the run up to a hospital appointment is always a bit stressful, so we try to find plenty to do to distract us.  This time we didn't have to go looking for a distraction - it came to us big time.....Flooding!

River levels have been rising steadily since Christmas, so it wasn't unexpected.  We were in the middle of a party when the phone rang with the automated Flood Warning message to take action but we carried on partying anyway, as you do....However, there have been two flood-related deaths in Oxford since then and we have had to take it seriously.  

We live on a short cup-de-sac to the west of Oxford City centre.  At one end of the street is the main (and only) road into Oxford from the west.  At the other end of the street, a bridge crosses a small stream into a park.  

It's not unusual for the park to flood during prolonged periods of heavy rain - it's part of the Thames flood plain.  But it doesn't usually stay flooded for long.   This time, the park has been underwater since 3 January and the water has been getting deeper and deeper since then.  The flood gauge in the stream has been completely submerged for several days and you can't tell where the stream ends and the park begins....

Yesterday at the entrance to the park (the remaining grass is under water now)

Yesterday - today you can't see it at all!

The playground two days ago - the benches and picnic table are now under water, as are the seats on the swings below

The water at the main road entrance to the park is even higher now...

At the other end of the street, the main road has been closed to traffic for two days now because of flooding which is quite deep in places.  Too deep to drive through safely unless you have a big vehicle or four wheel drive.  

Before the main road was closed to through traffic

Note : the lorry is delivering spring water!

Today - you can walk in the middle of the main road, but the water is deeper at the sides

High tide at Botley Road earlier today

Some nearby residents have been evacuated and others have lost power supplies.  Thankfully our street is still OK for now but on a shrinking island of dry land surrounded by flood water.  

This is where we rent a garage where we have stored things while refurbishing the house.  The water has now breached the sandbag wall to the right and local residents have been evacuated.  Needless to say, the garage is well and truly flooded.  An extreme way to declutter!

The park on the south side of the main road, with one lonely car stranded

The local allotment gardens were an early victim of the floods - the Thames runs along one side

River levels are expected to peak tomorrow, so if we survive that long we should be OK.  However, we are prepared with sandbags downstairs ready to deploy if needed and flood kit (torch, matches, candle, drinking water, fully charged mobile, wells etc) upstairs just in case....

With all this going on, we didn't get round to sitting down to talk to each other about Steve's next steps in treatment options until yesterday afternoon.  

Although there are more drug trials currently recruiting in the UK than there have been recently, when we looked at these in more detail we found that Steve was excluded from many as they are specifically targeted at people who have not had chemo before, rather than long term survivors with one or more chemo regimes under their belts.  

There are other trials which look interesting but they specifically exclude people with a medical history of autoimmune diseases like arthritis - which means Steve can't take part.  

That left one possible trial in London (ADI-PEG 20) which is only open to people who are ASS negative (google "Arginine" if you want to read the science bit), so we wouldn't know if Steve met the criteria until a biopsy was done, and even then he might be randomly allocated to the placebo group.

The other trial is recruiting here in Oxford, as well as Cambridge and Manchester.  It's called VanSel and is looking at two new drugs called Vandetanib and Selumetinib.  These are biological therapies which block some of the proteins which tell cells to grow and divide.   

So we knew that these were the ones to focus on at our meeting with the consultant this morning, assuming we could get there.  Luckily, the flood waters on the main road were not too deep to paddle through in our wellingtons, although it was a bit tight when the occasional local car and emergency vehicle went by, creating waves...However, we made it to the rail station and took a taxi up to the hospital which is on higher land.  We were the only people there wearing wellies....

Although it was a long (hour +) wait for Dr T, it was worth it. He tells it like it is, but his manner is relaxed and reassuring. He knows we have done our research so doesn't talk down to us. He knew what we wanted to talk about so it was straight down to business.  

The VanSel trial is still recruiting, but not for much longer. It's a Phase 1 study so everyone gets the same treatment, but at escalating doses.  The two drugs complement each other. Vandetanib is a Tyrosine Kinase Inhibitor (TKI) while Selumetinib is a MEK inhibitor.   In simple theoretical terms, one drug blocks two pathways into the cell.  When the cancer tries to find am alternative route into the cell, this pathway is blocked by the other drug.  The study is to see whether the two drugs work this way in practice, establish the optimum dose and learn more about the side effects.

The drugs are given in tablet form - so no hours on end hooked up to a cannula and drip!  Weekly hospital visits for the first two months, then monthly thereafter. Because it's a study rather than a drug trial with an end date, people can carry on taking the tablets for as long as they work (i.e condition stays stable) and the side effects are manageable. One man in Oxford has been doing it for a whole year now! You can read more about VanSel1 by clicking here

Steve has decided to go for it, if they will have him.  There are still protocols to go through.  We have to read a detailed information sheet, then assuming he still wants to go ahead, we'll get an appointment to go in and sign the consent forms. Then he will have the tests to make sure he's fit enough (physical exam; eye test; blood and urine tests; an ECG i.e. heart trace; heart ultrascan; chest X-ray and CT or MRI scan and maybe a bone scan).  If all that's OK, he will then have to wait for a slot to be come available....

So we still don't know for sure that he will be able to take part and if so, when it will begin.  However, the ball has started rolling which feels good!  

Two other things worth mentioning from this morning ....

Today's X-ray shows no sign of any change since October's scan.  Dr T doesn't consider the new lymph node nodule significant; pleural thickening is still minor and the tumour has no great bulk, so "de-bulking" is not something we need to think about for the time being.

The other thing is good news for other meso patients and cancer patients generally!  Grant applications by Oxford and Stanford Universities have been successful to fund a trial in the autumn for a new drug (HU5F9G4) with a novel cancer target CD47. The function of this cancer target is well known (it's found in all cancer tumours, apparently).  The early stage testing of the drug to be trialled has shown it to be very active in tumour control.  The trial is going through all the protocols at present but should be up and running in the third quarter of 2014.  The downside for us is that Steve would not meet the draft eligibility criteria as it excludes people with a medical history of auto-immune diseases.  However, it sounds like a very exciting development for other cancer patients - and not something under the control of the big drug companies, which has got to be good news!

We came out of today's meeting feeling almost light-hearted, in spite of the continuing threat of flooding.  I think you can see it on Steve's face :-)   

Steve has found his way home through the floods

And now he's thinking about going for a paddle in the park...

I am just happy with my new purple wellies - the last pair of size 5 available in Oxford yesterday!

I'll keep you posted on what happens next, flood wise and on the VanSel front.  Keep your fingers crossed for us tonight and tomorrow.   

If you want to know more about the flooding in Oxford, the local papers are running a daily blog with flood updates every 30 seconds (tick the box).  New blog every day.  Access today's blog by clicking here  There are lots of pictures, including a couple of mine, and a video (if you ever need to know how to make a sandbag!)     

The party's over...for the time being

After a memorable Christmas, 2014 got off to a flying start.  

We went to a New Year's Eve party hosted by our friends Elizabeth and Roger and raised our glasses in a toast to 2014 as Big Ben chimed.

Lunch on 2 January with Steve's brother Martin and his wife Mary - enjoying a meal at our local gastro pub, The Punter, then back to our house for coffee and more chatting before waving them off back to Frome in Somerset.

Yesterday, on the Tenth Day of Christmas, we were delighted that many of our neighbours and dear friends from Oxford and much further afield were able to brave the storms and floods to join us for an evening of drinks and nibbles.  

There were people from all stages of our lives, back to our student days and including those we got to know through work and have since stayed in touch with.  Many of these had not seen each other for a while, so it was reunions all round! It was also lovely to see friends from different parts of our lives meeting with each other and having a good time together, as well as having young children in the house again - the street is renewing itself with young families!

The house was buzzing with life which not even an automated phone call from the Environment Agency warning that flooding could be expected that night could spoil.  We just carried on having fun!  Thank you to everyone who made it such an enjoyable occasion.  For those who couldn't join us due to illness, we hope you are fully recovered soon.  For those who had other commitments, we hope you had as much fun as we did, especially Elizabeth and Roger who are in Iceland hoping to see the Northern Lights.

Today, the Christmas tree and decorations have come down and we are gradually working our way through the big post-party tidy up.  Back to reality....

...I'm pleased to say that although the park at the end of the street is back under water, the level has not risen overnight, and we can still see the top of the flood gauge today.  This means there is still capacity in the flood plain to accommodate yet more water before we have to start thinking about shifting important things upstairs.  Hopefully, it won't come to that.  

Today, the Christmas tree and decorations have come down and we are gradually working our way through the big post-party tidy up, although not with a great deal of enthusiasm, I have to confess.  But we'll get there in the end.   

Steve's appointment with the consultant is on Thursday.  Over the next few days we really must think hard about options and how to handle the meeting so that we come out having made a decision, or at least having the information we need to choose a direction and the means of making it happen.  

There are a few commitments on the calendar for January, but nothing beyond that date as yet.  I imagine that by this time next week, it might start looking a bit different.  We shall see....

It has been good to see that many of the meso warriors have enjoyed the festive season, or fared better than they dared hope while undergoing or recovering from treatment.  Big hugs to you all.  And a very special, tender hug for Faye whose dad died this morning, only 2 months and 3 weeks after being diagnosed with mesothelioma...so heartbreaking.

Rather than end today's post on a sad note, here are two bit of good news which are nothing to do with cancer.  Firstly, there was a one page spread featuring my photography in Digital Camera magazine which went on sale on Friday.  Click on the image to see it larger - you might just be able to read the words!

Secondly, my image Lady-in-Waiting has reached the final of the "Art of Building" photography competition, sponsored by the Chartered Institute of Building (CIOB).  

You can see all 15 finalists and vote for your favourite by clicking here!  One vote per person.  Voting closes 9 January, the same day as Steve's next hospital appointment so I will have other things on my mind!