Thursday 27 November 2014

going to get zapped......

Back in hospital again today, this time to discuss plans to use radiotherapy to zap the lump on Steve's chest where it has grown through the chest wall and bubbled up under the skin. It's a palliative treatment which should help with the pain he has experienced occasionally since the end of the clinical trial two weeks ago.   

We looked at the lump on the scan.  You can see where it has squeezed through the rib cage and spread out over the exterior of his chest rather than growing inside.  It was also possible to make out the much smaller lump lower down, closer to his liver, which is also trying to make its escape from inside the chest cavity.  

The plan is to have five radiotherapy sessions, with the beams zapping the lumps at an angle close to the horizontal.  This will minimise the risk of hitting healthy lung and liver tissue inside the chest, below the lumps.  Side effects are tiredness, probably a bit of "sunburn", possibly a dry cough and breathlessness as a result of the beam being close to the lung, and may be some nausea if it touches the liver.  These side effects will "resolve" (to use the doctor's words) in a few weeks.

There will be an appointment probably some time next week to plan the treatment, have a scan to locate exactly where the beams will hit the body and mark Steve's chest with reference points to get it on target every time.  This will be followed by five consecutive days of zapping.

In discussion with the registrar - a lovely doctor called Rebecca - we were told they had not been able track down the records of Steve's previous radiotherapy in 2009, when the tube ports had been zapped following the pleurodesis procedure to drain fluid from the pleural cavity.  

Luckily, there are photos on the blog of the site of the 2009 radiotherapy (on a different part of his body) which I was able to show to the doctor and the consultant.  Using those blog photos helped establish that the cancer has not seeded along the line of the ports and that they will not be treating the same area again, which is something they were concerned about.  

The consultant mentioned Steve's weight loss when she examined him.  He now weighs only 55.5 kilos, even though his appetite has improved and he has been eating more.  On the way back from the hospital we bought Complan supplement drink, full fat milk and doughnuts.  Here's hoping that piling on the calories will help put a bit more flesh on his bones and give him some more energy.  He is still dropping off to sleep when sitting quietly....

The good news is that Steve's Disabled Parking Permit arrived in the post while we were out and our lovely neighbour Marie signed for the recorded delivery on our behalf.  That's a weight off our minds!  The business accounts have been finished and sent off to the accountant to do Wride and Company end of year returns to HMRC.  Another job ticked off the "putting our affairs in order" checklist.  Next week promises to be another busy one with appointments of one sort or another on most days.  At least we will be able to put the disabled parking permit to good use on our trips out!

Friday 21 November 2014

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!  

Saturday 15 November 2014

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

Thursday 13 November 2014

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...

Tuesday 11 November 2014

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.....

Tuesday 4 November 2014

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 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" 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