Liaisons with LINAC

Steve has been having a liaison with LINAC - a Linear Particle Accelerator which generates X-rays and high energy electrons for medicinal purses in radiotherapy - which has been zapping the tumours growing through his chest wall. This is a palliative treatment which we hope will stop the external lumps getting bigger and causing pain.  Four sessions on consecutive days last week with the final session today, the last scheduled hospital visit of 2014.  

He has been diligently rubbing in the E45 cream, and it seems to have helped. It was not until this morning that he noticed the skin on his chest looking a bit pink. As yet, no nausea or shortness of breath which are other potential side effects if the beams hit healthy lung or liver tissue.  

He has been tired, but whether that is due to the radiotherapy, ongoing side effects of the last drug trial, cancer progression, or simply not sleeping well and having to set the alarm for 6 am to arrive in hospital in time for the early morning appointments, we can't tell.  Probably a bit of everything....

We can expect the side effects of radiotherapy to peak up to two weeks after treatment finishes, so I don't think we will be dancing in the streets over Christmas/New Year.  However, if the treatment delivers continuing pain relief that's a sacrifice well worth making.

After one of last week's sessions, we stayed in hospital for Steve's post-trial four week review.  All the usual tests, plus a chat with Dr Ioannnis - probably the last time we will see him as he is moving on to a new post at Southampton in 2015. We wished him well!

Two interesting points worth reporting from that conversation. Firstly, we talked about the side effects of the drug trial continuing, even though its now four weeks since Steve took his last dose of AZD0424.  The research team have already noticed this with other patients.  The trial drug has a "long tail" of side effects; longer than other drugs, and particularly long for a drug delivered orally, rather than by infusion.  But they will wear off eventually....and indeed today, four days later, Steve has a little bit beard growth and it looks like his eyebrow hair may be growing again.  

The other point was about immunotherapy drug trials which are showing much promise in the treatment of a range of cancers including mesothelioma.  We asked why they all appeared to exclude people with a medical history of auto-immune diseases, which includes people with arthritis like Steve.  

It seems that in activating the body's natural immune system, these drugs can also cause a flare up or significant worsening of any autoimmune disease, which can be a real problem for the patient.  Such reactions are also recorded as a side effect of the drug which makes it more difficult to license.  Any pharma company which allowed people with an autoimmune disease to take part in such a trial will therefore put themselves at a disadvantage in a highly competitive and lucrative market.  So its a financial consideration for the manufacturer as well as a risk for the patient.  

That's all for today, other than to say a couple of heart felt "thank you"s.  Firstly, to everyone for all the good wishes and lovely words of support which are arriving with your Christmas cards; they bring tears to our eyes but a warm glow to our hearts.  How lucky we are to have such wonderful friends.  

Secondly, to Ian, Ruth, Anne, Colin and Emily who succeeded in tempting us out of hiding where we have been for the last six weeks or so, with the promise of a meal, good company and a lift there and back again. The evening spent with you guys really lifted our spirits which have been pretty low recently, topped off perfectly with news of Em's pregnancy. We are so very, very pleased for you and Nick - you will make wonderful parents!

Another blog post to follow tomorrow, a day to look back and look forward...

The care plan is coming together...

After last Thursday's bad news, we have been keeping an even closer eye on Steve's condition hoping that it would improve a little now that he's stopped taking the trial drug AZD0424.   

His stomach is not churning to the same extent as it was before, although it's still not "normal".  There's been no noticeable change in respect of hair loss/regrowth.  The fatigue continues - he feels washed out and drained; it's a big effort to get going in the morning and keep going over the course of the day.  I often notice that he has dropped off to sleep when sitting quietly or watching TV.  He's sleeping now, as I type.....

Although his appetite has improved, he continues to lose weight; now down to 56 kilos (about 8 stone 11 lbs) with his clothes on.  Never one to carry much spare flesh, the body in the mirror is not the one he is used to seeing, he's so thin. He's frightened that he's wasting away...

We had both been hoping to see a noticeable improvement in all these respects, but perhaps we have been expecting too much, too soon - after all, it's only been eight days since the last dose and he had taken the trial drug every day for 44 days up until 13 November.  I imagine there's still a lot of it in his system.  

But other things are coming together.  On Monday, we had a long session with the GP - ironically, the same doctor who told him to go away and come back in a fortnight if he still felt unwell when he first went to the surgery in 2009 complaining of the symptoms of which later led to the mesothelioma diagnosis. This time around, she could not have been more helpful and supportive.  As a result we know have the start of a care plan coming together....

Taking paracetamol in addition to the codeine seems to be keeping the pain under control.  The doctor has prescribed other medication to deal with constipation - a side effect of the pain relief medication.  She has also requested blood tests to have a "baseline" against which Steve's condition can be monitored in the future.  That will happen next Monday.

We discussed what to do if Steve has a serious problem with pain or breathing in the night or at weekends.  The answer was to phone the surgery in the first instance.  His medical file has been flagged up as a vulnerable person, so if we need to use the out-of-hours service, the on-call doctor will be alerted to his particular circumstances.  

After a couple of false starts, the GP has completed a form which has enabled his application for a disabled parking permit to be fast-tracked.  The Blue Badge Team tell us that it's at the printers so should be with us shortly. That's a huge relief; we have had to leave the car several streets away on a number of occasions recently due to on-street parking pressure close to home.  With a Blue Badge, we will be able to leave it on yellow lines opposite the house without fear of getting a parking ticket if there is no space available in the residents bays.

The GP has also completed a DS1500 form.  This is used to fast-track applications for benefits such as attendance allowance for people who are terminally ill.  Steve's had one twice before, once on diagnosis and one a few years later, but we have not needed to use it as he's been feeling good for five years or so. Sadly, that's no longer the case, so it's good to have it for when we need to use it....

The GP has been in touch with the Community Care Team (aka Macmillan nurses) at Sobell House, the hospice next to the Churchill Cancer Centre.  We have an appointment to visit in a couple of weeks time to meet the team and find out more about the services they offer.  We also know that we can drop into the Maggies Cancer Advice Centre close by, if we need other sorts of support.  

More appointments have now come through, one in the Radiotherapy Clinic to discuss zapping the lump on Steve's chest before it gets any bigger and causes more pain, and another with Dr T,  Steve's oncology consultant, to talk about whether he has any other treatment options (apart from radiotherapy to the lump) and, if so, what they involve. Although it won't be easy, Steve needs to have this conversation so he knows where he is now, can think about the next stage of the journey and can decide what feels right for him.  

At the moment, I don't think he can contemplate more chemo, he feels so weak.  He's already taken part in two drug trials this year without any personal benefit, just horrible side effects.  Whether he will feel up to having another go in the New Year (assuming he is eligible for a trial that is recruiting) only time will tell. In any event, we have to go back to the Early Phase Clinical Trial Unit in mid-December for the four week post-trial interview/check up, so maybe we can find out then if anything suitable is in the pipeline.

Strange to think that only eight short weeks ago we were in Heidelberg, exploring the old town on foot and enjoying the Heidelberg Herbst festival in the company of some of our wonderful photography friends.  The rate of Steve's deterioration since then, especially over the last few weeks, has been alarming. However, we have felt very supported and loved by all your messages of support and this has helped us enormously, even though we have yet to reply to you individually...Thank you, thank you, thank you.

Last but not least, if you are a regular reader of the blog, you will know that over the last five years and a half we have also been supported by the Meso Warriors on Facebook, including a wonderful lady called Debbie Brewer who lost her battle with mesothelioma in June 2013.  This weekend there is a party to celebrate the 18th birthday of Kieran, Debbie's youngest son.  

Kieran, your mum would have been so very proud of you and your achievements, as are we and all the warriors.  Sending you a big hug from us.  Have fun with the warriors  at the party tomorrow night.  So sorry we can't be there in the flesh, but we will raise a glass to you instead!  

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

Frustration, frustration, frustration....

As part of the AZD0424 clinical trial, Steve takes 3 capsules of the trial drug every day.  No eating for 2 hours before he takes the dose or one hour after.  And the dose is supposed to be taken within the same hour slot every day.

With almost two more weeks to go in cycle 2, he should have had 36 tablets left after taking yesterday's dose.  However, the bottle felt a bit light when he picked it up, so he counted the number of capsules left. There were 28 fewer than there should have been.  That's a lot....In fact it's the equivalent of one capsule a day for each day of the 28 day cycle.    

Steve is very particular about taking his drugs.  Three capsules fit into the lid of the bottle exactly, so if he tried to take more he would soon notice.  He also records in his red book every dose.  We know he has not taken more than he should.  We also know he has not lost any.  

Several phone calls to the hospital yesterday to alert them to the problem and discuss what might have happened.  We went there today to pick up the missing 28 day tablets, thinking it would be a quick in and out job.  Not so.

Not a single parking space to be found when we arrived.  We ended up parking on a sliver of rough ground next to the staff car park, the opposite side of the hospital complex to the Cancer Centre and a long trek to the Early Phase Trials Unit. And it was raining...

After more questions, Steve's bottle containing the remaining capsules - including today's dose - was taken back to the pharmacy and we waited, and waited and waited for the bottle to be returned with the correct number of capsules. Dose time passed. So did the hour's window when he was supposed to take the medication.  

The bottle eventually came back from the pharmacy at 1 o'clock, and Steve had today's dose an hour and a half after he was supposed to take it....Plus no food for Steve until 2 pm at the earliest.  Not good for someone who is losing weight.  Very frustrating...At least the pharmacy admitted it was their mistake, not Steve's.

Then came the next bit of bad news.  The bottle contained the 28 "missing" capsules, but not the ones that had been in there when it had left our hands, so Steve is still short of medication.  The bottle would have to be returned to the pharmacy to be re-issued with the correct number of capsules.  You would think it would be checked very carefully after one mishap.  Not so.  We will have to go back to hospital again tomorrow to pick up...

By the time we arrived home, there wasn't a single parking space in our street, or the one opposite, so we eventually left the car three streets away and had to walk some distance back to our house, by this time very hungry.  On getting inside Steve realised he had left his bag in the car, with money, treatment diary, and other important stuff and had to do another round trip to retrieve it....

Just about enough time to grab some lunch before heading out again to an afternoon appointment.

Not a good day.

There was one positive thing....Dr Ioanis popped his head into the room to say hello when he saw us in hospital.  He hopes Steve's scan results will be available by next week.  However, one of the radiologists is on leave so they are stretched at the moment, particularly as scans for trial patients are looked at very thoroughly, with more measurements to check than a "normal" scan.   

He also said that if the cancer has grown through the chest wall as it appears, but has not grown anywhere else, then Steve may be able to continue the trial - if he wants to - while they deal with the chest lump separately. 

So we will just have to sit tight and wait and see what happens next.  Another week in limbo...

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

Last week of cycle 1 and a bit of a downer

Winge alert....

For various reasons, this last week of Cycle 1 of the AZ0424 clinical trial has been a bit of a downer, so if you are here expecting all things positive probably best look away now and return when we have bounced back (which we will).  

The doctor's remark last Tuesday that the lump on Steve's chest is probably the cancer growing has overshadowed the week.  Not the sort of thing you want to hear when on a drug trial which you hope will have the opposite effect.  

Although we have seen it on scans and it has knocked us for six emotionally, up until now Steve's mesothelioma has not impacted on him physically to any significant degree. However, the lump is different. You can see it and touch it. Thankfully it doesn't hurt. This makes us question whether it is the cancer growing, or something else...not that we have been able to identify what else might cause a lump of this size which is hard to the touch and not malleable.  If the doctor is right, then we now have very tangible evidence - and a constant reminder - of his disease (as if we needed one).  

The other big downer is hair loss - a side effect of the trial drug.  The hair on Steve's head started coming out in odd strands last weekend, but is now shedding freely.  He had put off washing his hair, but when he could leave it no longer the result was what he feared - lots of hairs including large clumps left in the bottom of the bath. His eyebrows (a very expressive part of his face) are also thinning.  There are hairs, hairs everywhere....

I'm sure Steve will come to terms with it, as so many others have had to when loosing their hair as a result of cancer treatment.  However, it is taking time to adjust to his new look. Time to go shopping for hats?  The hair loss is bound to get worse before it gets better.  The advice we have found online about coping with the impact of cancer-related hair loss on self-esteem seems to be aimed exclusively at women rather than men, which wound Steve up a bit. It's a people thing not a gender thing, isn't it?

The other side effects of taking part in the clinical trial are ongoing, including tiredness and effect on his digestive system.  In terms of fatigue, mornings are generally not too bad (relatively speaking).  However, from lunchtime onwards, Steve feels lethargic at best.  More often than not, he dozing or sleeping...In terms of his digestive system, the loud stomach gurgles continue but now accompanied by a build up of gas which makes him feel bloated and uncomfortable.  This is now affecting his appetite, which is a concern given his recent weight loss.  

Then there is the cough....Not all the time, but when he has a coughing session, it often makes him feel sick.  The bucket is back beside the bed for emergencies.

The significant deterioration in Steve's mum's health has been another cause for family concern.  She is now receiving 24 hour nursing care in Bristol.  Every time the phone rings, it flashes across our minds whether this is the call from the nursing home we are preparing ourselves for...

Naturally, we would like to visit her more often and spend more time with her.  However, it's difficult now Steve is on a drug trial with frequent hospital appointments plus the side effects of the trial drug, including fatigue which makes long sessions behind the wheel not such a good idea.  

Now the start of Cycle 2 of the drug trial is imminent, the thought of three consecutive days in hospital does not fill us with joy.  Mentally, it's looming large even though only one visit is scheduled to be a long 12-13 hour shift...

Overarching all of these concerns is a mix of feelings about future treatment options.  Immunotherapy is an area of clinical research which is proving very promising for people with mesothelioma, including fellow meso warrior Mavis who is doing brilliantly on her drug trial. Well done Mavis!  We are thrilled to read of significant tumour shrinkage and hope that many more people will be able to benefit from taking part in trials of this immunotherapy drug and similar ones.  

However, every time I research immunotherapy trials, my heart sinks when I read that people with a medical history of autoimmune disease - including arthritis, like Steve - are specifically excluded from taking part.  It feels like someone is shining a torch showing you the way ahead out of a long dark tunnel, but at the same time putting a barrier in the way to prevent you heading in that direction.  Heartbreaking and frustrating.....

OK. Rant over.  It hasn't all been bad.... 

We escaped the worst of the weather when the remains of hurricane Gonzalo crossed the UK at the start of the week....

To our amazement, some of the plants in the garden are flowering, whilst others are holding on to their blooms. Colour in the garden this time of the year is a bonus we weren't expecting....

Steve and I were delighted that our photos were included in a feature about our photography friends get-together in Heidelberg last month, which was published in a German newspaper.  Thank you Isa for setting it up!

Steve's picture of other photographers is bottom left, mine - an architectural abstract - is bottom right (ignore the credits - the journalist didn't get it quite right!)  

We seemed to have survived our flu jabs with minimal side effects, so we are set up to tackle the worst of the winter illnesses although hoping it won't be necessary.  

I'm hoping that by my next post, the good news will outweigh the downside. Life is a bit of a roller coaster at the best of times.  We will be on the up again soon I hope.  Big hug to all the meso warriors around the world, especially those  on the down slope of the roller coaster x

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.  

Family matters and side effects: Cycle 1, week 3 AZD0424 clinical trial

The last week has been dominated by family matters and some side effects of the drug trial...

Our trip to Bristol to visit Steve's mum after her health took a turn for the worse last weekend turned into an urgent search to find her a specialist nursing home as she now needs constant care. Luckily, one such home nearby had vacancies. We were able to visit to check it out while we were in Bristol. Over lunch with Steve's brother also visiting on the same day, a decision was made and she was transferred to the new nursing home on Friday. Quite a relief for all concerned...

On a much more enjoyable note, daughter Katie and partner Ed have been staying with us for the weekend.  Always lovely to have family visiting: an incentive to tidy up the house; a welcome distraction from clinical trials and care homes; a good reason to go out for a meal, as well as a chance to catch up on each others news face-to-face and show off the "new" garden, which met with approval.  Another relief!

Week 3 of the clinical trial and more side effects are becoming apparent.  The gurgling stomach continues, usually associated with an uncomfortable bloated feeling and gas.  As over-the-counter digestive medicines (Gaviscon and Bisodol) are not proving to be very effective, we will now try some alternative approaches to dealing with this side effect... and see what the doctor says at the next appointment on Tuesday.

The other side effect is hair loss, which has only become noticeable over the last couple of days.  It's not falling out in handfuls, but strands come out easily if Steve runs his fingers through his hair.  Stray hairs are appearing on the pillow and in the bathroom (and are probably present in less visible nooks and crannies). The upside of this side effect is that Steve doesn't have to shave very often....

The pimples which appeared on Steve's neck and face - in amongst the whiskers - are still there, but do not appear to have got any worse.  Which is a relief.

Tiredness continues.  The best time to do anything is in the morning, when he's still fresh from a night's sleep.  Later in the day, Steve is liable to drop off in his chair, or take himself off to bed for a nap. 

That said, at present the side effects are manageable and liveable with.  Here's hoping it stays that way.  And that the trial drug is also slowing down, or preferably halting, the cancer growth.  Still early days...the scan doesn't happen until cycle 2, about six weeks into the trial.  I imagine that whether Steve continues on to cycle 3 in late November will be determined by the results of that scan.  That's still a long way off, so no point in getting wound up about it now....

Where ever you are, whatever you are doing, have a good week...especially the meso warriors around the world x

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, week 1: Gurgle

It's the end of Steve's first week on the new clinical trial.  

We've been watching for side effects, but otherwise carrying on with whatever we've had to do...three days going to hospital and, around those appointments, more planting in the garden, including bulbs to enjoy in the spring (always optimistic!) and a day trip to London in the car to help our son move some large and bulky things from his house share to new accommodation....quite a demanding day, with no opportunity to eat properly.

Steve has felt tired...but then so have I...so whether his fatigue is a side effect of the trial drug or activity it's difficult to say.  Probably a bit of both.

What has been noticeable is the gurgling noises coming from his stomach.  Quite musical and rhythmic - more Philip Glass than heavy metal, even though its quite loud! We have just spoken to Finn, the trial nurse, and it seems to be quite common amongst those on the trial.  We will have to stock up on stomach calming medicine now this seems likely to continue....

Another noticeable thing is weight loss.  Steve's weight has now dipped below 60 kilos. When he was first diagnosed in 2009 it was about 70 kilos. 

Steve knows he needs to keep up his calorie intake, so has also been doing some research on food to eat to combat weight loss due to cancer, by eating good stuff rather than empty calories.  The "Bristol approach to Healthy Eating" has been helpful in this respect.  You can download the booklet from the Penny Bronn Centre website.   Seeds and nuts to snack on, plus calorie dense foods like oily fish, avocados and coconut milk will be added to the shopping list, as well as the stomach calming medicine!

The booklet also highlights the benefits of physical activity - supporting bone and muscle strength, energy levels and psychological  health, as well as helping maintain a healthy weight - so we will have to figure out an easy way to incorporate 30 minutes of physical exercise into our daily routine. Time to borrow a dog for walks, I wonder? 

Tomorrow is the start of cycle 2, and an early one for us - 8.30 am at the Early Phase Clinical Trails Unit.  More of that in my next post....

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!