and life goes on

The last time I posted a blog, Lucy the plasterer was putting a skim coat on the century old walls of our hall, stairs and landing.  Today, there is more banging and crashing in the house, as old carpets are ripped up to be replaced by new ones.  In between these two events, we have been busy cleaning, prepping and painting walls, ceilings and woodwork.  

In other words, life goes on...notwithstanding the doom and gloom of the doctor's prognosis in early December that without further treatment, Steve's life expectancy is now "a small number of months."

In fact, as the side effects of the last drug trial and December's radiotherapy course wear off, Steve has been feeling much better in himself.  His appetite is good and he continues to gain weight, slowly but surely.  Although he still takes an afternoon nap most days, there are days when he goes through without a sleep. When he is awake, his energy levels have improved so he has been able to get actively involved in the current round of renovation work. 

The goatee beard is doing well. The eyebrows now have a life of their own!  Although still thin, the hair on his head is also growing back.  The chest lump is still reduced in size and there has been no more pain.  

In truth, Steve does not look, feel or act like someone close to the end of life, thank goodness.  However, we know from the experience of other meso warriors not to count the proverbial chickens; anything could happen at any time - so we continue to take life one day at a time and make the most of it.  

Our daughter and partner are visiting this weekend, and maybe our son too.  Being sociable will make a great break from painting and decorating!  

Notwithstanding the freezing weather, there are buds on the clematis and the crocuses are popping up through the pots of winter flowering pansies, a promise that spring is on its way. The allium bulbs planted in October are showing green shoots, at least where they have not been dug up or covered over by the neighbourhood cats, who have adopted the areas of bare earth in our garden as a feline super loo.  Having failed miserably to deter them with citronella powder and a physical barrier, we are now seeing if they will be put off by the smell of lion poo pellets....fortunately, the odour is not noticeable by people!  

Back in December, I wasn't sure that Steve would still be around to enjoy the new garden in springtime.  Now, we both feel more positive.  

An appointment at Dr T's lung clinic has come through for a date in April, when Steve will be seeing one of the specialist lung cancer/mesothelioma nurses rather than a doctor.  To me, it still feels a little like the oncologists have given up on him, which I suppose isn't surprising if they are basing their assessment on how he looked and felt ten weeks ago. However, Steve is pleased to be seeing someone who specialises in mesothelioma, and we are both delighted that he is now back "in the system" rather than being cut adrift completely.  

If Steve feels and looks like he does now come April's appointment, then I think nurse Hannah will be in for a pleasant surprise.  Far from being at death's door as expected, he's still very much alive and kicking!  

As always, we have been following the fortune of other meso warriors who blog.  Claire writes that her husband Paul's mesothelioma is dormant, which is great!  Mavis is still going strong on her immunotherapy clinical trial at the Royal Marsden, although understandably upset that the other mesothelioma patient on the trial has had to stop, as his cancer is growing in a new place.  Lou in Australia is close to the end of 10 sessions of radiotherapy - a tough time with side effects, but she is such a fighter!  Ray's condition on the tremelimumab trial is stable; he can now progress on to three monthly doses of the drug and both he and Amanda can look forward to spring!

Big hugs to all the other meso warriors out there, their loved ones, families and friends and to those to fight to raise awareness of the continuing dangers of asbestos.  Here's hoping the Saatchi Bill will get through the Commons stage, after being supported in the House of Lords.  

Gathering momentum

There was a very bleak period back in November and early December when life appeared to be slowing to a halt as a result of disease progression, pain, appetite loss, weight loss, and hair loss ....all overshadowed (and no doubt influenced by) the doctor's prediction that without further treatment Steve's life expectancy was probably a small number of months.

Well....those words were haunting us about seven weeks ago. Since then, rather than going downhill as feared, life has improved and seems to be gathering momentum!  

The five day course of radiotherapy in December has done its job.  The lump on Steve's chest is still shrinking, and there have been no further pain episodes.  Steve's appetite is good; he is eating well and has put on weight.  His hair is growing, his eyebrows have returned fully and he is cultivating a goatee beard!

We have been sociable over the last 10 days or so - a visit from Steve's brother and his wife; our son staying for the weekend; a splendid Sunday lunch and afternoon with our dear friends Jonathan and Sally.  

We have also been out and about a little, including a day trip to Bristol spent mainly on a mission in Ikea.  However, this is not the best weather for galavanting if you have a compromised lung, so we have directed our attention indoors, been very busy and made good progress on house projects...

The big clear out and declutter continues and we've now freed up another room, which will soon be ready to redecorate and furnish out for family and friends to stay over (hence the trip to Ikea!) 

Steve has done some odd jobs in the kitchen and I have been stripping wall paper in the hall, up the stairs and on the landing.  As I type, Lucy the plasterer is putting a fresh coat of skim on the old plaster which is now about 110 years old and in dire need of some TLC.  Then its out with the paint rollers and time to browse through carpet samples.   

If you had told me in November that we would be doing stuff like this in January, I wouldn't have dared to believe you given the doctor's prognosis.... I wonder whether the doctor would still say the same, if he saw Steve now?  

For sure, the GP is less worried. With Steve's agreement, she is now only contacting us once a month to check up on him, rather than phoning weekly as she has been doing up to now. Steve was also able to reassure the hospice nurse that he doesn't need any support at present, but appreciated the contact all the same.

He still gets tired, but if the chest lump is still shrinking then the chances are that the radiotherapy is still working, so I would expect the side effects, including fatigue, to continue as Dr Rebecca indicated.  

So here we are - life goes on and we are keeping busy, ticking off things on the home front "to do" list and appreciating the difference each job makes.  Strange how making progress on things we had put off doing for so long can make you feel positive, especially when it was all doom and gloom a couple of months ago. Goodness knows how long this will last, but we are certainly making the most of it!

Steve still can't get enthusiastic about taking part in another clinical trial at present, even though more are now recruiting (or will be soon).  After the debilitating side effects of the two unsuccessful trials last year, he just can't stomach the thought of going through it all again. Only time will tell if that feeling will change....We shall see.

For now it's back to paint charts, carpet samples, furniture browsing and putting more social dates on the calendar.  It may be "Blue Monday" but we are happy!

Take care in the cold, wind and snow, all those in the northern hemisphere!

New Year greetings : two for one

To celebrate the first blog of 2015, here are two posts for the price of one - the first a message from Steve, the second an update from me.

Steve's message

Happy New Year!

Looks like it's my turn to write something again, so I will start by thanking you all for your good wishes, it is very humbling to see how many of you care about me.

After a really low point approaching the end of the drug trial about six weeks ago, I am now feeling much more positive: my appetite is back, I've gained about three kilos since then, my hair has started to re-grow and I'm particularly pleased to have eyebrows again, they were a big psychological loss.  My energy levels are still lower than I would like, but higher than they were, and I still feel tired from time to time, but, all in all, I'm feeling much more like myself.

Planning ahead still remains difficult, as it has been for the last five and a half years, but we still look to the future taking it one day at a time. And I'm pleased to find I'm still here!


And an update from me

Today was the first hospital appointment of 2015 in the medical oncology clinic - a follow-up to Steve's radiotherapy treatment in December.  

Dr Rebecca examined Steve and confirmed our thoughts that the large lump on his chest has shrunk, as had the smaller one near his liver (which we had all but forgotten about). She was pleased that Steve had no noticeable side effects from treatment other than tiredness.  It seems that this has peaked, but is likely to take some months before Steve fully recovers from radiotherapy fatigue. 

The good news is that radiotherapy treatment on the scale Steve received in December 2014 is likely to be effective for at least a year.  Should the external tumours begin to grow again, he can still have one more round of treatment to knock them back.  

For this reason, she didn't think there was any need to make another appointment to attend the clinic unless Steve is worried about something.  His file is marked "SoS" to ensure he would get an urgent appointment with the medical oncology team should the need arise.  He has a similar "SoS" tag with the clinical oncology team, should he feel fit enough and decide he wants to take part in another clinical trial.

She also asked about our meeting with the Palliative Care Nurse in the hospice, and was pleased to hear that this had also been productive in terms of medication being prescribed to help Steve's gut processed food more quickly, along with the return of his appetite and weight gain (now 57 kilos, two kilos more that his last recorded hospital weight).  

However, she also used the phrase that treatment now was about maintaining a good "quality of life" and there was no mention of resuming the three monthly assessments which Steve has had regularly since diagnosis in June 2009. 

We had gone into the meeting determined not to leave until we knew where we were going on from here; neither of us felt comfortable with the idea of being cut adrift from regular check ups.  At this stage, we would prefer to face "scanxiety" in order to know and prepare ourselves for what's happening inside his body, rather than not know and be caught on the back foot as the disease progresses.  

Besides which, we will try keep up-to date-with current research on mesothelioma and early phase clinical trials via Google alerts and the meso community on Facebook.....If we stay in the three monthly assessment system, it gives us a chance to follow up and ask questions about promising research such as that carried out at the Royal Marsden, or perhaps request a referral to a specialist mesothelioma centre like the ones in London and Leicester.

For the time being however, Steve would rather carry on as he is - recuperating from the side effects of the last drug trial and the radiotherapy fatigue with rest, and slowly but steadily regaining weight through diet.  

Perhaps we are putting our heads in the sand, thinking that a "small number of months" prognosis in December will stretch far enough into the future to justify making a follow up appointment for three months time, but we asked for one anyway and Dr Rebecca was happy to make the request.  

So that's where we are now, and that's the plan for the next few months: rest, recuperation, relaxation, and regaining weight.  Quite how we are going to achieve all that along with all the other (more exciting/more productive) things we would like to do to enjoy a good quality of life remains to be seen!  

Big hugs as always to all the meso warriors around the world, especially to long term survivor Lou in Australia who is now on weekly visits to her oncologist after chemo failed to stop tumour and fluid activity (how different the approach is in Oz - when things go wrong there, they step up the frequency of visits...in the UK, you have to ask for appointments....) and to our own amazing Mavis, who is worried that the immunotherapy trial drug which is working so well on her meso tumour may be damaging her one remaining kidney.

Good luck to all those who are walking 100 steps to raise money for Mesothelioma Research as part of the Meso 100 campaign, where you are invited to donate 100 pennies for 100 steps.  Please click the link to find out more!

Last but not least, many thanks to all those who lit candles for Meso Warriors past and present.  It helps remind the Mesothelioma Community that we are not alone xx

Take a deep breath....

Before you read this, take a deep breath.  The news is not good, as we suspected....

It's five years and five months almost to the day since Steve was diagnosed with mesothelioma.  Unlike many others in his position, in all that time he has not experienced any significant pain directly related to his cancer - just the occasional twinge. Until Thursday night into Friday morning, when he was woken up by a severe pain in his chest roughly where the lump is growing. Touching it was agony - like being hit by lightning, as he describes it.  Paracetamol didn't touch it.  Eventually he dropped off to sleep again, and all was well when he woke up...apart from being tired.

However, this was a new development in his meso journey, so after breakfast we phoned the hospital to say that we wanted to see a doctor when we called at the Early Phase Trials Unit later that morning to pick up the capsules missing from his trial drug supply due to an error by Pharmacy (see my last post for the start of that particular saga...)

The green bag with his bottle of capsules was waiting for us in the Trials Unit when we arrived.  The trial nurse had taken the precaution of checking that the bottle contained the correct number of capsules.  Unbelievably, pharmacy had messed up again. Too many capsules this time!  

This might sound funny, but in fact it's very serious.  Each time medicine is dispensed by one pharmacist, it's then checked by two others before being given to the patient.  In Steve's case, for the third time in a row, the dispenser and two checkers had made a mistake with the number of capsules put in the bottle.  

No harm done this time, but as the doctor pointed out, we are on the ball.  Others who are distracted or drugged up with pain relief might not notice. The potential consequences are very, very serious.  There will be an investigation. Here's hoping lessons will be learned and it doesn't happen again.  One mistake is bad enough, but three in a row is unforgivable.

Because he knew we were coming in to talk about the pain as well as collect the remaining trial drug capsules, Dr Ioannis had asked radiology to fast track Steve's scan results.  The full detailed report has yet to be written, but the summary was enough for Steve to be taken off the trial there and then. AZD0424 hasn't worked for Steve.  

Internally, pleural thickening has increased - not galloping away, but measurable after only six weeks.  The lump on his chest is the cancer which has grown through the chest wall and bubbled up on the outside of the rib cage, cracking a rib in the process - the pain Steve felt when lifting a heavy bag of cement back in July, which we thought was a pulled muscle. We had been expecting to hear this news - me for quite a while, Steve only acknowledging it in the last week or two - but it's still a bit of a blow.

The radiologist has also noted a lesion on his liver which has grown since the last scan (when it was too small to measure, and might have been something else) and a another lesion on his liver which did not show up at all on the last scan.  This came as a nasty surprise.  Not only is the cancer growing, it's spread outside the right lung.  This is not the news we wanted to hear.  

Obviously, there is no point in Steve finishing the clinical trial. After all the fuss with the pharmacy about being given the wrong number of capsules, we left them on the bed as we walked out of the Unit.  

So....what now?  

Probably radiotherapy on the lump to see if that will break it down and alleviate the pain, which is probably due to the tumour pressing on a nerve.  

Codeine tablets for pain relief.  They have not worked - the pain was back last night and the codeine brought no relief - so we will need to ask our GP for something stronger or different.  Hoping to be seen as an urgent case on Monday; the first "normal" appointment slot is in two weeks time.  That came as a nasty shock too....

A break from any other form of intervention treatment.  It will take 6-8 weeks for the trial drug to finally work its way out of Steve's system and this must happen before he would be able to go on any other drug trial.  

This news has been a wake up call - as if we needed one.  We have decided to use this time to sort things out while Steve is still relatively "well" (seems strange to say that, given what's happened...) Hopefully, over the coming month or two his hair will start growing back, the fatigue will lift, his appetite will return full time and he will put some weight back on....then the neighbours might recognise him again and he will stop thinking of himself as looking like "Gollum" from Lord of the Rings.  

We also hope he will be well enough to make the round trip to Bristol to say goodbye to his mum, who is fading fast.  I doubt whether she would know who he is, even if she recognised him now he is so thin and lacking hair.  However, it would give Steve some peace of mind to see her again, probably for the last time.

We all have those periods in life when it feels like everything that can go wrong, does go wrong.  We are certainly having one now.  Not surprisingly, we are both physically and emotionally drained.  And poor Steve still has the pain to contend with until the right pain relief is found.  

Christmas will be low key - we don't have the energy or inclination to design, print and write Christmas cards like we usually do; make or hunt down the perfect present, or write a long newsy letter telling far flung friends what has happened to us in 2014.  People will have to rely on the blog to know what's happening health-wise and a charitable donation from us in lieu of sending out cards.  Our aim is to minimise stress and strain while Steve recovers from the side effects of the last clinical trial and thinks about where he goes from here.  

Without doubt, we are now on the next stage of this long mesothelioma journey.  The spread of the cancer has upped the stakes, but this meso warrior is not out of the game yet. We will relax, regroup, recharge the batteries over the next couple of months; enjoy a family Christmas and plot the strategy for the next step of the journey.  Then...when we are ready...we will call your bet Leo and raise the stake money. You won't know what's hit you when the radiotherapy starts...and that's just the beginning of the fight back - always assuming Steve wants, and is able, to carry on.  

Last but not least, to all our friends in the flesh and in our Facebook groups, thank you, thank you, thank you for all the love, good wishes and messages of support.  They bring a tear to the eye, but are very much appreciated.  And a big hug to all the meso warriors around the world, whatever stage of the journey you are on xx

Clinical trial AZD0424 Cycle 2 - another week over....

Steve has finished the second week of Cycle 2 of the AZD0424 clinical trial.  

He had his scan this morning.

He has started Cycle 2, week three.

However, his potassium levels are low, he has lost more weight and the lump on his chest appears to be getting bigger.

We will not know for sure what's happening with the mesothelioma until we get the scan results - maybe next week, maybe the week after - however, the signs are not good.

Apologies for the brevity of today's post; we have a lot of things on our minds at present.....

Clinical trial AZD0424 Cycle 2: hopes, hair loss and halloween

We weren't sure whether Steve would go on to Cycle 2 of the drug trial last week, bearing in mind his side effects and the lump on his chest.  However, all the tests were fine and he was given the go ahead last Tuesday, together with a new bottle of capsules to see him through the next 28 days.

Dr Ioanis examined and measured the lump on Steve's chest and, like Dr Toby the week before, thought it was the cancer growing.  He suggested zapping the lump with radiotherapy and would find out whether that could happen while Steve was taking part in the early phase clinical trial of AZD0424.

Steve still harbours the hope that the lump is not the meso grown through his chest wall but is caused by something else.  He will only be convinced if a biopsy shows it to be malignant or it can be identified on a scan as growing out from the pleural thickening.  In my heart, I share his hope.....but my head tells me not to hold my breath. However, I can understand why he doesn't want to have radiotherapy until there is no doubt that the lump is malignant.  

Steve is due a scan some time in the next 7 days, but the appointment letter has yet to arrive.  We chased it up again at this morning's weekly check up and were told that the scan is booked in for next Tuesday and the results usually take a fortnight to come back.  

So in three weeks time, we ought to know two things for sure - firstly, whether there has been any disease progression since Steve start on the drug trial on 30 September and secondly, whether the lump we can see on his chest is connected with, and growing out from, the mesothelioma in the lining of the lung.  

In the meantime, the hair loss (a side effect of the trial drug) continues - Steve now has no eye lashes, few eyebrow hairs and very little hair left on his head.  Strangely, his body hair is unaffected...

Here he is pre-trial

Here he is on 28 October  (I quite like his Mohican!)  

Most of the hair you can see in last Tuesday's photo has now been shed and we are trying to get used to the new "norm" of baldness.  Steve still feels self-conscious and is reluctant go out, even wearing a hat.  As a result, we hid away on Halloween - his excuse being that he didn't want to frighten the little trick or treaters.  

It was also a bit of a poignant day for us for another reason - it would have been Steve's dad's 90th birthday this year...you can't help wonder how much longer he would have lived had he not been exposed to asbestos in the Bristol shipyards pre-WW2 and killed by mesothelioma in his early sixties...

The combination of three consecutive days in hospital and treatment side effects meant that the rest of last week has been low key.  Unusually for us, we turned down an invitation to a friend's big birthday party on Saturday, with a promise that we would have a second celebration with them when Steve feels better.

Not going out has meant that we have caught up with a few things indoors; paperwork for our tax returns has been collected up and posted to the accountant; a few things have been passed on to others through "Freegle" and eBay as part of the ongoing declutter and garage clear out; I have done some preparation for a work-related trip to Guernsey next week.  

We have met our "new" neighbours...in fact they are the owners of the house next door which has been rented out for the last few years.  They are now living in it themselves.  To our delight, they plan to do a bit of garden maintenance, including getting someone in to thin and trim the tree which overhangs half of our garden, creating dense shade in the summer.  Maybe we will see a bit more sunshine in 2015, when we sit outside enjoying the fruits of this year's garden makeover labours!

We were back to hospital again this morning for the regular weekly check up.  All is well, including Steve's bloods which were are examined closely to make sure he doesn't have an infection given the catarrh he's been troubled with recently. So week 2 of cycle 2 has started...another week to get used to the new norm.  Still can't think ahead as far as Christmas...

However, we will be raising a glass tonight to celebrate with fellow meso blogger Mavis, whose tumour has shrunk by well over 50% as a result of taking part in an immunotherapy clinical trial at the Royal Marsden.  It gives hope to the other warriors around the world!  I just hope that they can get it designated as a Promising Innovative Medicine (PIM) under the Early Access to Medicine Scheme so that Steve can be treated with it, as his history of arthritis means he's excluded from the drug trial itself.  

Mavis - should you choose to take it - here is your next mission impossible: please get the makers of your drug to apply for PIM designation! If any one can do it, you can xx

AZD0424 clinical trial start of Week 4, Cycle 1: lump

Back to hospital today for Steve's weekly check up at the start of the last week of Cycle 1 of the AZD0424 drug trial.  

Weight, BP, ECG all OK.  Blood and urine samples given for testing.  A chat with the doctor about side effects; gas/
bloating/gurgling stomach (ongoing), pimples on face and neck (now less noticeable) and hair loss (accelerating). Nothing serious enough to warrant stopping taking part in the clinical trial.

We also took the opportunity to ask him to look at the lump on Steve's chest which he first noticed before the clinical trial started, after lifting very heavy bags of cement out of the car boot and into the garden.  At the time it was painful and we assumed Steve had pulled a muscle.  The pain has long since stopped but the lump remains, not protruding quite so much but flattened out and with a wider circumference.

We had drawn Dr Iannis's attention to the lump at the pre-trial consultation.  He looked at it but didn't seem worried. Today, a different doctor examined it and measured it to keep tabs on any future changes.  In an almost a passing remark, he said it's probably the cancer growing.  We had considered this as a possible explanation initially.  However, the absence of pain and previous doctor's lack of concern meant we had pushed it to the back of our minds.  As a result, today's rather casual statement took us both a bit by surprise.  

Steve is due a scan in a couple of week's time so the results should clarify whether the lump on his chest is the cancer growing through the chest wall and rib cage.  In between then and now, we assume it will be measured and monitored at the weekly visits to the Early Phase Clinical Trial Unit.  

It seems a bit surreal to be writing in these terms when Steve has no pain in that area...or anywhere else for that matter. For that we must be grateful.  However, it reinforces the urgency of finding something that will slow down the meso, stop it or shrink it.  Whether AZD0424 will do any of those things remains to be seen.  We live in hope.  It's certainly doing something to his body, if the side effects are anything to go by!

Thank goodness the Medical Innovation (Saatchi) Bill now has government support.  Here's hoping it will become law by spring 2015 and open up options for people in Steve's position to consider treatment with drugs that show promise in trials but are not yet licensed, without the medical profession being put off using such innovative treatment for fear of litigation.  

AZD0424 clinical trial - out of week 2 and into week 3 of cycle 1

Steve has now finished the second week of the AZD0424 clinical trail.  We were back in hospital again this morning for his regular tests before starting week 3 of the first cycle of treatment.  

The usual chaos on Oxford's roads in peak hours is now exacerbated by roadworks in the city centre and the return of all the University students, on foot and cycles. However, after the frustrations of a trip across town, everything went smoothly at this morning's hospital appointment.  

It only took two attempts to find a vein that was willing to give enough blood for a sample, and there was no need to wait for the blood test results or to see the doctor.  We hope this is because everything is going well.  It seems to be...

The good news is that Steve has started to regain some of the weight he has lost recently and his appetite is healthy, in spite of the gurgling stomach.  We also noticed today that he wasn't puffing after climbing the stairs to the Early Phase Trials Unit, which happened at other recent visits.  

There have been side effects which are probably related to the trial drug, but nothing too difficult to deal with.  Steve has been feeling tired, so has taken a nap during the daytime.  A few spots have started to appear on his neck and face (mainly where his beard grows) but nothing like the awful rash he developed during the last clinical trial he took part in.   

In my last post, I referred to the benefits of physical activity. I had plenty of that last weekend, walking around Berlin with a group of photography friends.  Very wonderful it was too!  

Steve would have found the pace hard going, but I will take him there at some point in the future, I hope.  Something to look forward to, when he feels up to travel abroad and has time in between hospital appointments, assuming he stays in this clinical trial for a few more cycles when hospital check ups become once a fortnight, rather than weekly.

In the meantime, we are planning to go to Bristol to visit Steve's mum who is very poorly, and are looking forward to a visit next weekend from our daughter Katie and her partner. In between, we ought to set up the rain water harvesting system on the garden shed (there has been a lot of rain recently!); put away the summer clothes and bring out the winter woolies.  And process some more of the photos from Berlin ....These are from my iPhone :-) 

Here's a big hug for ALL the warriors, especially Lou in Australia who is going back on chemo to deal with a build up of fluid in her chest; Nancy in the States who is recovering from major surgery and grieving for the loss of her much loved dog, and all taking part in clinical trials like Steve, path-finding for those who follow.  Not forgetting the carers, families and friends of the warriors....You are all very brave, very wonderful people x

AZD0424 clinical trial Cycle 1 Days 1-3

We have finished our hospital visits for this week, the first on the new early phase clinical trial of AZD0424.  

A bit of a marathon on Tuesday, with the full battery of tests to start off, followed by a series of blood samples every few hours for research purposes.  By 8pm when the last sample was due to be taken, Steve's veins had had enough and refused to cooperate. 

In spite of flushing the cannula, no blood would flow so the nurse had to insert a new needle in his other arm to take the sample. As result, we left the hospital even later than anticipated and returned home about 13 hours after we started out...exhausting stuff, sitting doing nothing much of the time!

The following hospital visits have been better - a relatively quick in and out yesterday, although it took two goes to find a vein willing to give blood for yesterday's 24 hour blood sample.  Today, the 48 hour sample was quick and painless, and we were out in time to do a food shop on the way home.

No obvious physical side effects as yet.  Fatigue...but this could be a result of the weekend away and a long day on Tuesday catching up with us.  I have felt tired too.  Neither of us are sleeping well - I think there is inevitably some anxiety about what might happen as a result of the trial...not surprising when you take a leap into the unknown.  Steve says he is noticing every little twinge and feeling, in case it signals the onset of side effects.  

On the bright side, his appetite is good..which is a relief as he has been loosing weight.  We just need a bit of time to settle into a new routine around dose time - nothing to eat or drink (except water) for two hours before taking the capsules and one hour after.  

We will miss meeting up with the meso warriors at the Patient and Carer Day in Leicester this Saturday.  London calls...and an appointment to transport various bits and pieces for our son who is moving accommodation, always assuming Steve feels up to the drive there and back.  Fellow blogger Mavis is going to give everyone a hug from us, aren't you Mavis? !!

Here's a special hug for those who are having it tough at the moment x

On trial: Day 1, Cycle 1 of AZD0424

The phone call came through yesterday...all Steve's test results are good; he's clear to start the new early phase trial. 

Early start this morning...no breakfast for Steve as he has to take the capsules on an empty stomach.  No breakfast for me either...not enough time before leaving the house at 7.45am to get to the hospital in time for the appointment.  

We have been installed in Room 16, the one which has one of my photos on the wall - a good omen we hope?

First off, more tests - blood pressure; ECG; urine samples and bloods...the usual problem finding a vein...one of the experienced nurses had to come and do it after the regular nurse gave up for fear of damaging the best looking vein. Then the doctor's examination and questions - no changes since we saw him last Thursday.

The trial drug arrived at 11 am - three 50 mg capsules of AZD0424.  No food for an hour after taking the dose.  I had sneaked out for a coffee and toasted teacake, but poor Steve was starving by noon when he was finally allowed something to eat!  At least he has a good appetite at the moment.

We have spent the rest of the day in hospital. Eight blood samples are taken every few hours to see how the drug is absorbed into the blood stream. The last sample will be taken around 8 pm, so a VERY long day by the time we get home.  I was lucky enough to go walkabout in the early afternoon for a change of scene.  Steve stayed on the ward, reading, doing crosswords, surfing the net....

We are back again tomorrow for the 24 hour blood sample, and then another visit to take a research blood sample on Thursday.  After that, it's weekly visits for tests, until the start of cycle 2 in 29 days time when we have another set of hospital visits three days in a row, including one very long day.

And so that's the pattern of life for the next couple of months....

Only another hour, and we can go home!

Decision day

As people in Scotland voted yesterday to decide whether to go it alone or stay in the UK, Steve also made a big decision.  

He will take part in the Phase 1 clinical trial currently on offer in Oxford.  It's not specifically for mesothelioma but all solid tumours (i.e. any type of cancer except those involving the blood or lymphatic system).

The trial drug is a biological therapy called AZD0424, made by Astra Zeneca.  The trial is a joint venture between Cancer Research UK and Cancer Research Technology (CRT) and is being carried out in Oxford, Belfast and Edinburgh.

AZD0424 is a tyrosine kinase inhibitor.  It works by slowing down or stopping two proteins called Src and ABL1 which are naturally produced in the body.  These proteins are involved in various parts of cell growth, cell invasion, metastasis (the spread of cancer) and the development of blood cells.  Cancer cells have higher levels of these proteins than normal cells.  

It has been shown in the laboratory and in animal studies that AZD0424 blocks these proteins, preventing the delivery of nutrients to cancer cells via blood vessels, and thus helping to halt the growth of cancer cells and tumours.  In other words, I don't think we can expect it to shrink the mesothelioma.  However, we can allow ourselves to hope that it will slow the rate of disease progression or, better still, stop it growing altogether.  

The trial which Steve will be taking part in is the first time where the drug will be given to patients, alone and in combination with other drugs. It started in October 2012. The first patent was given a low dose, then the dose is gradually increased (dose escalation) until the researchers find the optimum dose in terms of effectiveness with tolerable side effects.  

The trial is due to finish in September 2016, so Steve is entering about three quarters of the way through - a good balance between potential effectiveness and side effects.  

If you want to find out more about the trial click here.  There is more about the drug here, here, and here. 

Next week it's all the preliminary stuff; one hospital appointment at the start of the week to sign the consent form and have a baseline scan, followed by another later in the week for all the pre-trial tests.  The trial itself will start the week after next.  Wish us luck! 

Endings, beginnings and ongoings

Since I last posted, some things have come to an end; other things are beginning and, as usual, ongoing stuff keeps rolling along...

Work on the garden makeover had ground to a halt due to the non-delivery of some railway sleepers needed for the raised beds.  However, it sprang back into action on Tuesday after the missing parts of the order were eventually found and delivered.  Our contractor worked hard for the rest of last week to make up for lost time.  To our delight, their part of the job was completed on Saturday!

We now have a natural stone paved area where we can sit out, entertain and enjoy the fresh air, bordered by raised beds which will help maintenance and give us better views of smaller plants, while the railway sleeper edges will provide somewhere to put down cups of tea/coffee and glasses of wine while relaxing, as well as extra perching space for guests if needed.  It's looking a bit bare at the moment, but is a perfect blank canvas on which to "paint" with plant colours, textures and shapes...the fun bit!  

It feels like we have now said goodbye to the old garden and are ready to make a fresh start on the new one, re-stocking with plants which will give us year round colour, interest and hopefully attract wildlife.

Last Friday was my appointment for a nerve root block injection in the spine, carried out under a local anaesthetic with the help of X-rays to guide the needle.  The procedure didn't hurt as much as we were warned it might (indeed, I wondered whether the radiologist had hit the target....) However, the difference since then is noticeable, so it must have worked!   

It's been so long since I was able to stand still for any length of time, or carry even a small weight any distance without having spasms of pain in my rear end and down my leg. The nerve root block has meant I can now do simple things like stand in a queue or spend an afternoon walking around with a camera without constantly being on the lookout for somewhere to sit down and stretch out for a bit of pain relief. Feeling like a new woman enjoying a fresh start!  

Friday's hospital appointment meant that we were unable to attend the funeral of our friend and fellow mesothelioma blogger Tess.  As you would expect, it was a very emotional occasion by all accounts, not just for Tess's family but also for another meso blogger friend of ours, Mavis, who together with her husband Ray, represented the meso warriors and carers.  Everyday since then has brought news of yet another warrior loosing their life to this awful disease.  Too many life endings, which could have been avoided...But the fight goes on, as does the search for a cure.

Being at home on Friday afternoon also meant that Steve was around to take an unexpected phone call from Dr Nick at the Clinical Trials Units with news that a slot has become available on an early phase trial.  It's another dose escalation study (like the VanSel trial Steve took part in at the start of 2014) which has now reached the stage where patients are noticing side effects - usually a sign that the drug is working.  

We have been to the hospital today to find out more about the trial on offer, and took the opportunity to ask about an immunotherapy drug MK3475 which is currently showing promise for mesothelioma in a trial at the Royal Marsden. It was interesting - but frustrating - to learn that the same drug is being trialled here in Oxford, but only for people with myeloma.  If he wanted to follow it up, Steve would have to be referred to the Marsden to see if he would meet the criteria for MK3475 (he may not be eligible due to a history of autoimmune disease) and, if so, whether a slot is likely to become available in the near future.

We've come home with the paperwork for the trial on offer in Oxford and Steve is thinking currently considering whether he wants to take part.  As Dr Nick says, the Oxford trial may buy him some more time...by then, immunotherapy drugs may become more readily and widely available.  

Other benefits of taking part in the Oxford trial is our proximity and ease of access to the Churchill Cancer Centre (the thought of traveling around the M25 to reach the Royal Marsden does not fill us with joy) and the fact that after treatment on and off over the last five years, we know the local team well and they know us.  In addition, the scan to assess whether there has been a response to treatment happens after the first four week cycle of treatment, so not as long to wait to find out the results as on the VanSel trial when it was 10 weeks before we found out that it hadn't worked.  

If Steve decides to go ahead, I will post details of the trial on the blog at some point in the future.  However, we may find ourselves starting a new treatment at the start of October.  Another new beginning in the pipeline...

In the meantime, life goes on and with it annual events to enjoy.  Last Sunday, we hand a wonderful day out at the Prescott Speed Hill Climb set in glorious Costwolds countryside near Cheltenham.

We are not petrol heads, but there is something very exciting about watching classic cars like Bugattis and other fast sports/racing cars, roaring up a short course which rises 200ft in just 1127 yards via a series of hairpin bends.  Lots of good viewpoints along the course and the opportunity to see the cars up close and personal in the paddock.  And enjoy an ice cream under cloudless blue skies in bright sunshine.  A great day out!

On Monday and Tuesday last week, the annual St Giles fair came to Oxford.  For just two days St Giles, one of the city's dignified historic streets, is closed to traffic becomes a chaos of loud noise, brash colours, bright lights, the smell of street food cooking and a heaving mass of people.  The contrast with a "normal" weekday couldn't be more marked!  

If you are ever in Oxford on the first Monday and Tuesday after the first Sunday in September, you must visit.

On Friday evening, we went to a party in the Divinity Schools, at the Bodleian Library to celebrate the launch of the Oxford Photography Festival 

We're looking forward to seeing some of the exhibitions over the next couple of weeks.  This is the first such festival. Here's hoping it will be the beginning of another Oxford tradition!

Saturday and Sunday saw yet another annual event in the city - Oxford Open Doors, when buildings not normally open to the public welcome visitors free of charge.  Open Doors also coincides with our son's birthday, so after traveling from London where he is currently based to Bristol where his flat is, he came to join us in Oxford to finish off his birthday celebration.  

We spend yesterday morning visiting places of interest.  Steve joined us for lunch in one of Oxford's oldest pubs, the Turf Tavern a 13th century ale house tucked away in the historic heart of the city, followed by a slow walk home to a birthday tea.  

So...all in all, a packed week, with endings, beginnings and lots of ongoings....

If Steve decides to take part in the Oxford drug trial, the next two weeks will be just as busy, if not busier as we try to fit in all those things which need starting or finishing in the foreseeable future.  Once the trial begins, life would once again revolve around hospital visits and watching, waiting and dealing with side effects and everything else is likely to go on the back burner.  We shall see...

Flying in a holding pattern

About this time last year, Steve's meso started growing again after being knocked back by the standard treatment of pemetrexed/carboplatin over the winter of 2012/13.  

The meso carried on growing, albeit slowly, through the VanSel early phase drug trial that Steve took part in between February and April this year.  So it came as no surprise yesterday to find out at Steve's assessment that there has been disease progression.  However, seeing the X-ray from January displayed next to yesterday's X-ray was a reality check; a noticeable increase in pleural thickening and tumour growth at the base of his right lung, wiping out any faint flicker of hope that there might have been a delayed response to the trial drugs.

Although there is another clinical trial currently recruiting in Oxford, it's a dose escalation study and has only recently started, so the clinical trials team know it will be some time before they reach an effective dose.  Dr Ioannis advised that he didn't think it worth putting Steve into this trial so early in the dose escalation as he probably wouldn't benefit.  

However, we understand that there are other things in the pipeline which are possibilities.  To see whether Steve might be eligible, he had bloods taken for testing: C&G, CF7 and BF7 (if we have read the doctor's hand-writing correctly). Does any one know what these tests are for?  I've googled but found nothing - at least nothing relating to blood tests....

There are also options to re-challenge with pemetrexed / carboplatin, which produced a good response last time around, and to explore clinical trials which are recruiting elsewhere.  We told him about the MK-3475 trial that fellow meso warrior Mavis is on at the Royal Marsden, and how promising her scan results were.  He is happy to refer, if Steve wants to see what's on offer at other hospitals.

The doctor has asked for another scan to be arranged in the next couple of weeks to compare the results with the scan taken towards the end of the VanSel drug trial, in early April. This will give an indication of the speed of disease progression, which may help decide the best option to go forward.  

The scan will also show whether the lump on his chest is meso-related or not.  The doctor thinks not, based on the X-ray.  However, the more detailed scan will clarify this. Whatever it is, thankfully it's causing no pain.  In fact, Steve is still feeling good and leading a "normal" life to all intents and purposes - walking, lifting, carrying with no significant problems.

If disease progression is speeding up, Steve may wish to start treatment with pemetrexed and carboplatin sooner rather than later.  If the meso is still relatively slow-growing, Steve may wish to hold off treatment until after Christmas, or whenever a promising trial is open for him.  

We have another appointment with the clinical trials unit in late September.  Steve will also be given an appointment with the consultant oncologist Dr T, to discuss all the options when the scan results are known.  That way he remains on the clinical trials waiting list, but can also have more of the standard chemo if that's considered to be the way forward. 

So....sometime in the next 4-6 weeks, we will have a better idea of the best course of action.  In the meantime, it feels like we are flying in a holding pattern until cleared to land on one treatment option runway or another.  

Whatever happens, we will make the most of the next few weeks! Arrangements are already in place for family gatherings in London and Bristol.  Flights and accommodation are booked for a get-together with our photographer friends in Heidelberg.  The last big push on the garden makeover starts next week, with a contractor doing the really hard work....We can just sit back, watch, and enjoy choosing the plants ready to plant out when it's all finished in a few weeks time!  

With Oxford Open Doors, London Open House, Oxford Thai Festival and St Giles Fair to look forward to in the next few weeks, some socialising and a work-related trip to Guernsey (as well as a scan and more hospital appointments) September looks like it will be another busy month with little time to get too stressed about what happens next. That's the theory anyway...

A Meso Warriors meet up

One of the wonderful things about the mesothelioma groups on Facebook is that they are global.  We find ourselves talking to people from all over the world, sometimes without realising it - the common bond of a mesothelioma diagnosis binds us together, those who have the disease and those who care for them.  

Not so very long ago I had a message from meso warrior Lou in Australia about another warrior, Nancy, who lives in the States but was due to visit the UK this summer.  She asked whether we would like to meet up during Nancy's visit. Naturally, we said yes!

And it happened this week...Nancy and her husband Andrew were staying not too far from where we live in Oxford and had booked theatre tickets for a production in one of the University Colleges. We invited them for afternoon tea on the roof terrace dining room of the Ashmolean Museum.

We have never met before and only exchanged a few messages on Facebook prior to Friday, but we greeted each other like old friends knowing how much we had in common!  

Over tea, a glass of fizz, sandwiches, scones and cakes we compared notes, shared experiences and learnt more about each other's lives - finding our we had more in common than we first realised... 

Mesothelioma had brought us together and, not surprisingly, the conversation kept coming back round to it in various ways.  But that wasn't the only subject of conversation in those few hours spent together, which flew by.  

Before long it was time to say our goodbyes - I know we will keep in touch, as we have done with others who have come into our lives as a result of this disease.  

Thank you Lou for the introduction via Australia!  Thank you Nancy and Andrew for a very enjoyable few hours in your good company!  We wish you well for the rest of your trip, and will be thinking of you on your meso journey.

The rest of last week seems to have galloped by: progressing the garden makeover project by a few more baby steps; a brief meet up with our friend Chris in Oxford for a seminar; preparation for my next work-related trip to Guernsey in a couple of weeks time; photographing public art in Bicester as a commission; making plans for a visit to London at the end of the month...

...but the reality is that Monday's hospital appointment is looming large.  In just over 24 hours time, we will find out how Steve's meso is doing; whether or not the small lump on his chest and his occasional loss of appetite are cancer-related; whether there are any clinical trials recruiting locally that he might be a suitable candidate for...or whether we need to look further afield, following in the footsteps of Mavis and head off to the Royal Marsden....or perhaps we will just enjoy the next three months without chemo, drug trials or any other therapy, re-charging the battery ready for the next battle....

Moving forward, a surprise and some very good news!

It's been another busy week in which we have moved forward on a number of fronts....

...On the home front, the new garden shed has been assembled, moved into place, anchored, made weathertight and kitted out with shelves and boxes and is now providing a home for the garden stuff that's been stored under a tarpaulin since the old shed came down in the spring.  

The new paving has been chosen, ordered and paid for, ready to be laid by the contractor at the end of the month, together with the railway sleepers that will form the new raised beds. A decision has been made on the replacement deck boards, so we can now calculate quantities and place an order.  

Still things to do, but the garden makeover is moving forward on schedule.

...On the family front, we visited Steve's mum in Bristol on Saturday afternoon and our nephew Nick, partner Kate and their daughter Esme on Sunday morning (where we were given some lovely pictures drawn by Esme!)

By Sunday afternoon, the car was loaded up and we were on the road from Bristol to London, helping our son take some heavy, bulky items to his new flat share. Then back on the road to Oxford, under the huge super moon on Sunday evening.  A round trip of about 300 miles over the course of two days, but worth it to spend some time with the family!  

....On the health front, Steve has felt good and has been relatively active recently, because of everything that's been happening.  By this time next week, we will have a clearer idea of what's going on inside, and find out whether there are any clinical trials recruiting locally which might be suitable for him.  Following an assessment a fortnight ago, I now have an appointment to see a spinal specialist at the end of the month to find out more about treatment options.  

Regular readers of the blog may have picked up that the dragonfly has become a symbol for many in the meso community on Facebook.  Imagine my surprise and delight when one arrived in the post in the form of a dragonfly brooch from a "mystery" sender.  

But I've guessed...Thank you Jan, such a lovely thought!

As everyone in the mesothelioma community knows, there are many heartbreaking stories out there on a daily basis. We feel for our friends going through treatment, like Lou in Australia; those awaiting treatment like Amanda's Ray; those like Tess, who have decided not to have any more treatment, at least for the time being; those facing the end of life, and those who have to stand by and watch their loved ones decline, feeling helpless...When bad news happens daily, good news is a great boost to all of us....

And, oh boy, there is some good news to share and celebrate! Fellow meso blogger Mavis, who was diagnosed around the same time as Steve, has been taking part in a Phase 1 clinical trial of a new immunotherapy drug MK3475 at the Royal Marsden Hospital.  Yesterday she found out the results of the first scan taken since starting the trial: shrinkage on all tumours!  The meso community on Facebook is buzzing with delight and relief....could this be is the silver bullet that will stop mesothelioma in its tracks?  Far too early to jump to those sort of conclusions, but it does look very promising!

Here is a link to Merk's page listing a range of trials involving MK3475 Pembrolizumab worldwide, in case you want to follow it up.  I believe this is the one that Mavis is taking part in Study of Pembrolizumab (MK-3475 in participants with advanced solid tumours (MK-3475-028/KEYNOTE-28) NB It is only open to patients whose tumours have NOT responded to current therapy.

Sadly for Steve, people with a clinical history of autoimmune disease, such as arthritis, are excluded from the trial so taking this immunotherapy drug is not an option for him, unless it's designated as a Promising Innovative Medicine (PIM) under the Early Access to Medicines Scheme.  Let's hope so.