Getting the results and going forward....

We heard about Steve's scan results at the hospital appointment last Thursday.  Our GP phoned to tell us results of his blood test on Monday.  I haven't posted about either of them until today as it's taken a bit of time to digest all the information and to sort out ways of going forward...but we've reached that stage now, so we can now share with you.

The scan results

As expected, the cancer continues to progress.  The area causing most concern now is the external lump where the meso has grown out of the chest cavity, through Steve's chest wall and ribs.  What started out as a small circular bump visible just above the nipple (July 2014) has now grown and spread into a large lump extending upwards to his collar bone and outwards towards his armpit.

We could see clearly on the scan where the lump is pressing on the nerve bundle which travels from his neck down the right arm to the hand.  It is pressure on this nerve bundle which has caused occasional cramp and numbness in Steve's right hand and arm - not all the time, but when he gets into certain positions. 

Unless something is done to halt growth, continued pressure from the lump will result in nerve damage, pain and probably paralysis.  So the way forward is to zap it with radiotherapy using a Linear Particle Accelerator (LINAC).  

The last radiotherapy in this area was well over a year ago and it shrunk the chest lump significantly, so hopefully there will be a repeat performance this time around, although the approach will be different...This time, the beam will travel through and through the body avoiding the spinal cord and gullet, rather than dealing the lump a glancing blow, skim-hitting the raised area without penetrating the body. Because of the level of penetration, the side effects of treatment will be more noticeable than before.   

The radiotherapy planning appointment was yesterday (to set up Steve in the correct position) and the course of treatment will last five days starting on 11 February, with two days off for good behaviour over the intervening weekend.   

There was some good news too.  No sign of any obstruction or constriction to the food pipe (gullet) due to tumours, so the swallowing problems are not a direct result of cancer growth. The air passage to Steve's lower left lung (which had been reduced to a tiny hole, the size of a pin prick) has been opened up by the most recent course of radiotherapy in December 2015 and is now clearly visible as a black hole on the scan.  This means his lung is no longer in imminent danger of collapse, much to our relief.

We put the consultant on the spot about his life expectancy, knowing full well that she can't predict accurately or with 100% confidence..but we felt we needed a better idea of how much longer Steve can expect to live.  The answer was more than weeks but probably less than a year  Whether it will longer than six months or less, is anyone's guess. But at least we have a bit more time to get ourselves sorted out and prepare for the next stage of the meso journey. 

The blood tests results

The blood tests showed up several things: 

• raised white blood cells suggesting an infection (not a raging infection, but may explain the wheezy cough and thick, coloured phlegm)
• lower than average protein levels
• high than average calcium levels  

Steve is now on a course of antibiotics to sort out the infection (although swallowing large capsules is proving a challenge - should have asked specifically for syrup).  

We will be getting an appointment with the hospice nutritionist to discuss how to improve his protein levels (and yes, we are using the Nutribullet and blender, making soups and smoothies, and he's having Complan twice a day as a meal supplement as well as full fat milk, full fat yoghurt, savoury pates, chocolate and sweet soft deserts - the caramel pannacotta is going down well!)... There's rice pudding and porridge still to try, but other than that I've run out of ideas so need some more suggestions from an expert. 

The elevated levels of calcium rang alarm bells with me. Untreated, high levels of calcium in the blood (caused by the cancer "eating" bone) can cause increased drowsiness and ultimately patients can become comatose and die.  However, I have since been reassured by Sarah the palliative care nurse, that although raised above normal, Steve's calcium levels are not so high as to cause concern.  They may have been like that for a while...we don't know...he hasn't had blood tests for over a year.  They will now test and monitor bloods more frequently and regularly, and take action if and when necessary.  It is treatable using bisphosphonates.

Practicalities and psychological therapies

We are moving forward on the practical front too. The pee bottle (sorry - portable male urinal) arrived today.  He doesn't need it now but its here, ready for those times when Steve can't get upstairs to the loo quickly enough.  

Another inflatable cushion is on its way - one to sit on, rather than lean back against.  He can also use it as a foot support when lying in bed.  Now the pressure sore on his back has healed, its all about prevention of sores developing on other bony bits - bottom and heels being the most vulnerable areas in addition to his spine.

On the psychological front, Steve's opted to try some music therapy sessions at Sobell House, our local hospice.  Tom, the music therapist came today to explain how it can help people in Steve's situation - from listening to old favourites which spark happy memories, to bashing drums for an hour to vent anger and frustration, via writing songs to express emotions that you might find difficult to articulate in other ways...and in other individual ways. They will transport Steve to and from the hospice and feed and water him while he's there.  Sounds pretty wonderful!  All kicks off this time next week.  Watch this space for the first composition :)

On Friday, we are having a session with the palliative care nurse about "Do not resuscitate" (DNR) considerations - a question that came up in a phone call from the GP on Friday, which I could not answer.  We know what the words mean, but have not really thought around the issue and how to arrive at a decision that's right for Steve.  Time for a full and frank discussion to make an informed choice.

Thank yous and cyber hugs

I must also say some thank yous too...to Jean, another sponsor for Jack's Tour de France cycle ride; to Margaret and Tracy for your thoughtful Facebook private messages; to all our friends who have written such lovely letters and emails and cheered us up with phone calls and messages; to Chris who diverted on her way home to Somerset to call in and say hi, and to the meso warriors for their support, as always.  And special cyber hugs for Mavis to congratulate her on her British Citizenship Award and to Amanda and Ray, who have been having a tough time.  Much love to all x 

and into 2016 we go......

If you had told me this time last year that Steve would still be here to see in the start of 2016, I would have found it hard to believe given the doctor's prediction that his life expectancy was a small number of months.  But thirteen months on and he's still alive and kicking (although the latter is more metaphorical than actual, given the impact of physical exertion on him....)  

So here is our benchmark post for the start of 2016 - something we can use to monitor Steve's progress over the course of the new year.  I know this will make difficult reading for many of you, but take comfort from the fact that he's still here and not in pain, and enjoying life albeit in a more restrained way than earlier in his diagnosis when he was looping the loop in a Chipmunk plane and travelling to Marrakesh and other exciting destinations at home and abroad.

Appetite, weight and swallowing

The second course of steroids in the run up to Christmas did its job.  Steve's appetite improved and he enjoyed most of his food, although he continues to have problems swallowing some hard food, even small bits well chewed.  But he's now in the steroid "tapering off" period, so we'll need to keep an eye on his food intake and weight.  He continued to loose weight slowly during December - down from 50.5 kilos at the start of the month to 50 kilos on 27 December, but had put on a whole kilo by 3 January, no doubt helped by good festive food, drink and chocolate.  I dread to think how much weight I have gained over that period....

Energy, activity, coughing and pressure sores

Steve continues to find physical exertion difficult.  The simple act of getting up, dressed and downstairs leaves him in need of a rest.  Moving around makes him cough which tires him even more, which is why he spends a lot of time doing things whilst sitting down, causing pressure sores as he has so little flesh to cushion the boney bits.  However, the sores are healing with regular bathing, lashings of derma cream, pressure relief plasters and an inflatable back cushion.  The district nurse is happy and her notes say "wife managing well" so I'm happy. He still declines to use a wheelchair, but it will be there when he does need it. 

Lumps and bumps

The lump on Steve's chest where the cancer has grown through the chest wall has now grown up as far as his shoulder and reached his right armpit.  He lost sensation in his right hand yesterday for a short while, which was a bit alarming.  Whether that was simply because he was sitting awkwardly or whether it was related to the lump pressing on a nerve, we don't know. 

He now talks about "bumping along the bottom" and there are an increasing number of down times when we both shed a tear because the future looks bleak.  And then something lovely happens (often a random act of kindness) and we pick ourselves up, dust ourselves down and start over...

Hospitals and treatment

Today was the first hospital visit of 2016. After discussing how he felt, Dr P examined Steve and agreed that the time had come to have another go at zapping the chest lump again (the last round of radiotherapy on this area was just over a year ago).  She is concerned that if the lump gets much bigger, it could affect nerves and cause pain (not something Steve has to deal with at the moment).  

Last time round, the radiotherapy dealt the lump a glancing blow across the surface.  This time however, the beam would be pointing through the body and is like to have more noticeable side effects including affecting his gullet.  At this point in the conversation, Steve mentioned the problems he has swallowing hard food at times.  As a result, Doctor P wants Steve to have another scan to see what's causing this problem, as it might be enlarged central lymph glands pressing on his food pipe. She can still zap the chest lump with radiotherapy but needs to see the scan results before planning treatment, I assume to minimise the risk of exacerbating the swallowing problem.  

We have an appointment to see her again in three weeks time.  Hopefully Steve will have had a scan in the intervening period, the results will be available and we can take it from there.

Hopes and fears

In truth, we are feeling a bit scared now...not very confident about what the future holds, what will happen when and how we will deal with it.  Many people reading this will know exactly what we're going through.  For others, it may be the first time you are experiencing second-hand the outcome of breathing in asbestos fibres many decades ago and how the resulting mesothelioma affects not just the life of the victim, but their family and friends too.  I hope you will still be there to hold our hands in this journey xx

And doing something positive!

On the bright side, great advances are being made in cancer research, including very encouraging results from an immunotherapy drug called Keytruda which is having an amazing effect on fellow bloggers Mavis in the UK and Lou in Australia.  It may not help Steve, but no doubt it will help others in the future.  

On the physical action front, our son Jack is cycling a mountain stage of the Tour  de France (L'Etape) in July to raise money for Mesothelioma UK, a charity which supports all those with this disease and their families.  

Jack cycling the Dragon ride June 2015

Mountains, mountains and more mountains in L'Etape du Tour 

If you can sponsor him - even a little - that would be great!  Here is a link to his Just Giving Page.  

Lastly, many, many thanks to those of you who have already sponsored him.  You are wonderful people!  

ups and downs...

It's been a week or so of ups and a few downs.

The ups have mainly been on the social front....

A visit from Steve's brother last Friday so that they could go to the Oxford Probate Registry together to swear the executors oath relating to the estate of their mum, Jean, who died in September.  The grant of probate came through today - much sooner than expected - which is a relief, and another load off our minds.  

A visit from our friends Ruth, Anne and Colin last Saturday who dropped in for coffee and pastries en route to see mutual friends - we loved the chance to catch up on their news and have a long chat, lifting the spirits as always!

Our son is also staying with us at the moment, so we have been enjoying his company much more so than usual and are making the most of it, before he disappears back to Bristol.

On the health front, Steve is in the process of weaning himself off the Prednisolone steroids which he is taking to stimulate his appetite.  The dose has been reduced to four tablets over this last week, and will go down again tomorrow to three tablets a day, for the next week.  

The good news is that his appetite has not diminished with the steroid dose reduction and he's still eating well.  However, after a period of stability, his weight dipped from 53.3 kilos to 52.6 kilos three days ago.  That's just under 8 stone 4 lbs in shorts and a T shirt.  Whether it's a blip or a downward trend only time will tell....

The sporadic coughing continues - usually associated with movement.  As a result Steve does not look forward to getting out of bed or indeed doing any activity which involves physical exertion, knowing that it will probably trigger the cough which makes him feel puffed out. It's an effort to get up, get dressed and get himself downstairs, by which time he needs a rest to recover.  

Not surprisingly, he will happily spend most of the day sitting doing crosswords, sudoku, browsing online, reading a newspaper (and being waited upon...) Not surprisingly also, his inactivity has the opposite effect on me!  Not the best timing, now the nerve root block injection I had back in August is beginning to wear off making the pain in my lower back increasingly noticeable.  

Steve's follow up appointment has now come through in mid-November.  Another three weeks or so before we find out if the course of radiotherapy has shrunk the tumour which is severely restricting the passage of air to the lower lobe of his left lung.  Hopefully, he will notice an improvement before then..

...Keep your fingers crossed for us!

Waiting, news, action and more waiting

After my last post, we were waiting on tenterhooks for what seemed like forever to hear whether Steve could have a stent inserted to keep his airway open and when the course of radiotherapy would take place.  

In the end, the waiting got too much for Steve and he contacted the hospital for news.  When it came, it was a mix of good news and not-so-good news.  

The bad news is that the restriction on his windpipe caused by tumour growth is too deep to insert a stent which we were banking on to keep the airway open to his lower left lung. The good news is that radiotherapy to shrink the tumour causing the airway restriction has now been arranged. The planning session was this morning and the treatment sessions will start next week.  

The radiotherapy people confirmed that there should not be a problem if Steve takes steroids during treatment, so we are hoping to get a prescription sorted out sooner rather than later.  Steroids should help stimulate his appetite which is very poor at the moment, so that he can take on board more calories, stem the weight loss and have a bit more energy.

Steve was also given some tips on how to cut through the phlegm which he has problems coughing up - gut-rotting coca cola helps, it seems!  Also salt water or aspirin gargles should help if his throat gets painful as a result of treatment.  Plus the usual advice on keeping up the calorie intake - full fat milk and yoghurt, creamy butter, protein drinks, Danish pastries and donuts, nuts, soups with cream if swallowing solid food is difficult.  The Nutribullet will be working overtime, I think....

So....After this morning's action, we are now back to waiting. Waiting for the first radiotherapy session....Waiting for the Blue Badge to be renewed....Waiting to hear whether he will get Attendance Allowance....Waiting for progress on probate on his mum's will....

In the meantime, life goes on albeit at a much slower pace. Although we missed the Mesothelioma Patient and Carer Day, we did manage to meet up with Sue, a friend from our student days, who treated us for lunch (soup as it happens) at Worton Organic Garden - not so far away from us, but not somewhere we had heard about or visited before.  Thank you Sue - lovely to meet up with you again!

I am in the process of finishing my work commitments. Our son is visiting to see if he can help us progress the last few outstanding garden projects. Steve is talking about designing this year's Christmas card (we didn't send them last year as he was very poorly and told he only had a small number of months to live).  We have a photography day booked soon at the local Hawk Conservatory (hopefully the birds will fly to us, rather than Steve have to walk to them)....There are occasional references to wheelchair hire, but Steve isn't quite ready for that yet.  

When his energy levels improve, we hope to see more friends. But he's not feeling very sociable at the moment (who wants to talk about disease progression, after all?) so the emphasis is on taking it easy for the time being.  

So....Easy does it.

On the move again

Things are on the move again.

Sadly, it's not us on the move this time.

It's Steve's meso.  

The cancer is progressing visibly.  July's scan report noted that the lump on his chest (where the tumour has grown through the rib cage) had shrunk after radiotherapy last December.  However the weekend before last, some six weeks after the July scan, Steve noticed that it had grown.  

There is now a linear swelling on the outside of his chest extending diagonally from the site of the original lump towards his shoulder and armpit.  To see this change in such a relatively short period of time is worrying, as you can imagine.  If the cancer is growing that quickly on the outside of Steve's chest, there's a good chance it's probably doing the same on the inside.....

....Plus, his appetite has been variable; he has been coughing more, and getting more puffed out on exertion.  Not good signs.....

Time for action. 

The extra "puffers" prescribed by our GP are helping Steve's breathing and cough, which is good. Hannah, his meso nurse specialist, will arrange for him to see the radiotherapist after another scan to assess disease progression since July and to act as a baseline to judge the effectiveness of further treatment. We now are now in limbo, waiting for the scan date so that an appointment for radiotherapy can be sorted out.  Potential referrals to other hospitals are also on hold while we deal with the immediate problem.

Of course, life doesn't stop still in the meantime.  In the near future, we have another trip to Bristol to look forward to, and a few more social gatherings in the pipeline.  However, plans beyond late September are (of necessity) very fluid. 

We'll just have to take life one day at a time again.  We're good at that....

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.  

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...

Treatment timeline

Over the last week, we have talked (and listened) to many people about Steve's mesothelioma - GP, counsellor, radiotherapist, medical oncologist, clinical oncologist and palliative care nurse aka Macmillan nurse. Most of these sessions have kicked off with a review of Steve's treatment since diagnosis in June 2009; you should see his hospital files - very thick and heavy....

As Steve starts his next treatment regime tomorrow, this seems like the right moment to set it out in a timeline which pulls together all the clinical trials, chemotherapy and medical procedures he has been through since June 2009, together with the related side effects and outcomes.  

Having everything up together in one blog post will be a handy summary for us the next time we have to talk someone through what's happened up to now.  Some readers may find it of interest and assistance if they are contemplating having similar treatment.  If nothing else, it will set the scene for a future blog post and help you understand why Steve feels the way he does right now....

June 2009

• Pleurodesis - draining fluid which had built up between the two layers of the pleura around the lung and sticking the pleura back together using sterile talc. Biopsy taken at the same time. Four days in hospital. Oramorph given for pain relief (and laxative for constipation, a side effect of the pain relief medication) as part of a clinical trial comparing the effectiveness of oramorph to paracetamol for pain relief.  Stitches to the "ports" removed the following week.  Biopsy results showed mesothelioma.

July 2009

• Radiotherapy to the pleurodesis ports using a Linear Particle Accelerator (LINAC) - a total of four visits; one to prepare for treatment and three to zap the ports to reduce the risks of the cancer seeding along the line of the chest drain and endoscopy camera.  Aqueous cream applied to the site of the therapy to reduce soreness. No noticeable tiredness or nausea.

July - November 2009

• Velcade Early Phase Clinical Trial - aka Bortezomib, a biological therapy which inhibits how proteasomes (which control cell growth and function) work - plus cisplatin.  Six 21 day cycles of treatment, with Velcade and cisplatin on day 1, followed by Velcade on its own on days 4, 8 and 11, then a 10 day "rest" period.  Side effects: nausea and vomiting; tiredness; numbness in feet (peripheral neuropathy); taste changes; loss of appetite; anaemia; muscle cramps in joints.  Two enforced breaks in treatment regime due to toxicity - impact on white blood cells - one break of a fortnight, the other of a week.  Nausea and peripheral neuropathy continued post-trial for some time (the latter getting worse before it got better). 

December 2009 - September 2012 : No treatment, disease stable

October 2012- February 2013

• Chemotherapy - pemetrexed (aka Alimta) and carboplatin.  Six 21 day cycles of treatment, with infusions of chemo at the start of each cycle.  The regime was extended by an unplanned break in treatment arising due to appointment problems over the Christmas/New Year holiday.  Side effects: mouth ulcers; fatigue; taste changes; loss of appetite; breathlessness; itchy rash; nose bleeds; anaemia requiring blood transfusions on two separate occasions. Outcome: reduction in pleural thickening after four cycles of treatment, followed by further reduction in pleural thickening after two more cycles of treatment.

March - September 2013: No treatment, disease stable

October 2013: Scan showed disease progression - minor pleural thickening and a new lymph node about 1.5 cm in size noted.  

December 2013: treatment options discussed

January 2014: decision to take part in the VanSel Early Phase drug trial, dose escalation study

February - April 2014

• VanSel - a combination of two biological therapies. Vandetanib - a VEGFR (Vascular Endothelial Growth Factor Receptor) and EGFR (Epidermal Growth Factor Receptor) inhibitor; VEGF is a substance made by cells which helps new blood vesssels develop and grow. VEGR inhibitors stop cancers developing the blood vessels that they need to grow.  Selumetinib is a MEK (Mitogen Activated Kinase) inhibitor which blocks the pathway along which signals are sent to cells telling them to divide and grow.  Steve completed two cycles on this regime - the first cycle was 42 days long, including a "loading" dose of vandetanib every day for 14 days before taking both vandetanib and selumetanib for 28 days.  Cycle 2 was 28 days long, taking both drugs every day.  The trial period was extended with a week's break from treatment as the drugs were affecting Steve's heart rhythm.  Trial resumed on a reduced dose of vandetanib.   Other main side effects: a severe skin rash (mainly on his face, chest and neck) which required steroid cream medication and antibiotic lotion; fatigue; loss of appetite; stomach cramps; sickness; daily diarrhoea; some hair loss; sensitivity to UV light.  Outcome: disease progression over and above trial protocol guidelines

May - August 2014: continued disease progression; cancer has grown through the chest wall and now visible externally as a lump

September - November 2014: 

• AZD 0424 Early Phase drug trial - a 28 day cycle taking the trial drug every day.  The drug is a tyrosine kinase inhibitor which slows down proteins which are involved in cell growth.  Cancer cells have a higher level of these proteins than normal cells. The drug blocks these proteins, preventing the delivery of nutrients to cancer cells. Steve completed the first 28 day cycle, and 21 days of the second cycle before being taken off the drug as the scan showed disease progression and spread to his liver, as well as experiencing pain for the first time from the lump on his chest, which continued to grow in spite of the trial drug. Side effects: fatigue; major hair loss; stomach cramps; loss of appetite. 

December 2014: 

• palliative radiotherapy for pain relief. One "planning session" followed by five consecutive days of treatment starting tomorrow.  We can expect increasing tiredness with each treatment session, peaking about two weeks after treatment around Christmas.  We will also need to slop on the E45 cream to deal with the effects of the radiotherapy on his skin.  There may be some nausea and breathlessness as a result of the beam affecting healthy tissue in the lung and liver, adjacent to diseased areas.  

Overview

After a long period of stability followed by some shrinkage, Steve's mesothelioma has been growing since October 2013. Although he has taken part in two early phase clinical trials this year, the disease continues to progress and spread.  He has recently experienced pain for the first time where the cancer has grown through the chest wall, and there has been significant weight loss. He now weighs about 55 kilos.   He has yet to recover from the side effects of the most recent trial which has left him feeling weak and tired.  It's been a tough year....

What we can expect after radiotherapy and where we go from here is something for blog post in the future.  

What is clear from writing - and now re-reading - this treatment timeline is that Steve has been very brave and endured some horrible debilitating side effects of drug trials over the last 12 months, with no personal benefits.  Each drug trial seems more difficult to endure and bounce back from.  The gaps between drug trials and chemo regimes when we can enjoy a good quality of life are getting shorter.  

The balance of power between Steve and his cancer has shifted over the last year, accelerating over the last 6-8 weeks.  The mesothelioma journey has changed direction and moved on to a new phase.  We are now focussed on thinking about how to manage this for the best.  More of that in a future blog post.  

Thank you so much for all with wonderful messages of support and offers of practical help which are very much appreciated.  

Lastly, a big hug to all the meso warriors around the world, their families and friends, especially Margaret in Canada xxxx

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!