Monday 31 March 2014

VanSel1 Cycle 2 Day 15: Better out than in....

After a weekend of feeling vulnerable with frequent visits to the loo, Steve still felt rather agitated when we went to hospital this morning for his regular weekly check up.  Within a few minutes of sitting down on the ward, he stood up again and headed quickly for the bathroom.

Hearing him cough loudly, I followed him in and found him head over the loo, retching.  Then he was SPECTACULARLY sick - all over the wc, the floor, his shoes and new trousers.  

It's at times like that you really appreciate a nurse who doesn't flap, comes to the rescue with tissues and wet wipes, reassures you and tells you not to worry, and then gets on and deals with the mess efficiently.  

As the saying goes, it's better out than in.  And in Steve's case, that was true.  He felt much better by the time he was cleaned up and had got back to the bed bay, albeit rather weak and empty.

Although not scheduled, the nurse thought it prudent to get him checked over by the doctor before he took his morning dose of drugs.  So bloods and ECG done, we chatted with Doctor Nick about what had just happened and how Steve had been feeling over the last week.

It was reassuring to know that Steve's chest sounded no different, in spite of the cough continuing on and off.  All his symptoms - diarrhoea, fatigue, vomiting, mouth sores and skin disorders are known side effects of the trial drugs and are considered to be indicative of Level 1 toxicity (I dread to think what Levels 2 or 3 are like....)  

However, the doctor acknowledge that while such side effects are not considered to be serious in medical terms, when they continue for a sustained period it can be very draining and feel like the patient's quality of life has been compromised. He stressed that Steve can leave the drug trial at any time if it all gets too much.  The choice is entirely his.  

We had already talked about this.  All other things being equal, Steve intends to continue taking the trial drugs until the end of cycle 2.  By then we will know from the scan whether they are having a beneficial effect on the mesothelioma. 

If the cancer has shrunk, is stable or if any growth is small and has not spread into new areas, Steve will take this into account before making a decision about whether or not to continue.  Obviously, if the meso has grown significantly or to spread to new areas, then he will stop at once; we will take stock and explore whether there are other options.

So...two more weeks to see assess the manageability of the side effects of the trial drugs and then it will be decision time.  

Steve is taking a nap as I write.  Here's hoping that he feels better when he wakes up and that he manages to keep some food inside him in the coming weeks to give him a bit more energy.  

Reading Amanda and Ray's blog, made me start yearning for a long riverside walk ending up at a pub!  Tess has been making the most of her week off chemo, meeting with family and friends and enjoying Mother's Day.  As usual, Mavis is busy raising awareness and plugging the Saatchi Bill.  Perhaps this is the best way to deal with "scanxiety"?  Lou in Australia has been given the all clear to fly to the States for the ADAO 10th Annual Conference in Washington - great news, and very exciting! 

Last but not least, here is a special hug for Grace and her boys who said their final farewells to bravo meso warrior, husband, father and friend Ian on Friday xx

Sunday 30 March 2014

VanSel1 Trial Cycle 2 Days 10-14

Another unpredictable week in terms of how Steve feels - at times he has been O.K, then the stomach cramps begin, or he has to rush to the loo, or he feels we have just had to go with the flow, depending on how he feels at any particular moment in time.  

When Steve is like this, it's difficult to venture far from home. As a result, our plans to go to Bristol today to see our son and visit Steve's mum on Mothering Sunday have been put on hold.  Perhaps we'll be able to make the trip next week some time instead.  

For the same reason, we had to decline an invitation to join others for a meal out last night.  However, our friends Richard and Alison, over from France for their annual UK visit, dropped in on us yesterday afternoon.  It was good to talk and hear their news.  The last time we had seen Richard was at a village cafe bar in Lirac, near Avignon, before catching the Eurostar back home after a week in France last June, so there was a bit of catching up to do!

Steve was too tired to go to a reception on Friday evening at the Town Hall Gallery to celebrate the opening of the Port Meadow exhibition where we both have work on show, but I took some photos and hopefully he will be able to see the show in person before too long. 

As we have been more or less tied to the house since last week's hospital visits, it's been a good opportunity to get on with some spring cleaning and make a bit more progress working in the garden.  However we must wait until the fledging blackbird has flown the nest before cutting back the hedge outside the kitchen door - I don't think it will be's near as big as its parents now!

A huge bouquet of Mother's Day daffodils and tulips arrived from our daughter yesterday - too many for even our largest vase - so we now have flowers everywhere brightening up the house.  Thank you Katie!

Back to hospital tomorrow for the regular weekly tests and observations, and then the wait to see if Steve still meets the drug trial protocols and can carry on taking the tablets.  

We live in hope that the impact of the side effects of the trial drugs will become a bit more manageable over time.  We know that some patients have had 8-10 cycles of treatment, so perhaps things do begin to settle down after a while.  I don't think Steve would be very happy to carry on that long the way he feels at the moment.  However, if the drugs are working, he may feel differently.  

Only time will tell....Just two more weeks to go until the end of cycle 2 when we will find out whether or not the mesothelioma has been stopped in its tracks.  

Friday 28 March 2014

Early Access to Medicines Scheme and Medical Innovations (Saatchi) Bill

Two exciting developments of particular interest to people with mesothelioma and other life threatening conditions for which there is no cure at the moment, are the Early Access to Medicines Scheme and the Medical Innovation Bill, aka The Saatchi Bill. These were both discussed in the House of Commons last Tuesday (25 March).  
Earl Howe is the Minister responsible for quality at the Department of Health who spoke at the meeting.  The full text of his peech is set out below.  Worth reading!  
I am very pleased to be here today to talk about this important subject. I do, of course, recognise the concerns raised by the other speakers before me regarding access to new and promising medicines for these terrible conditions.
I would like to assure those present that our priority is to ensure that patients, including those with rare and life threatening or limiting conditions, have access to new and effective treatments on terms that represent value to the NHS and the taxpayer.
Early Access to Medicines Scheme
I would like to spend a few minutes setting out the aims of the scheme, which I hope you will agree is an important development.
Through the scheme, the Medicines and Healthcare products Regulatory Agency will provide a scientific opinion on promising new, unlicensed or off-label medicines to treat, diagnose or prevent life threatening or seriously debilitating conditions which do not have adequate treatment options.
Our hope is that the scheme, which will operate within the current regulatory structure, could give patients with these conditions access much sooner to medicines that represent a significant advance in their area of unmet need.
MHRA is responsible for managing the scientific aspects of the scheme, which will follow a two-step process.
Step one includes giving a new medicine a promising innovative medicines designation.
This will provide an early indication that a product may be a possible candidate for early access, based on the available clinical data. The designation will be issued following an MHRA scientific meeting and could be given several years before the product is licensed.
Companies who wish to move to step two must hold a promising innovative medicines designation and provide further relevant data on their product’s quality, safety and efficacy.
At step two, the MHRA will produce a scientific opinion describing the benefits and risks of the medicine, based on information submitted by the applicant after sufficient data have been gathered from the patients who will benefit from the medicine.
The trigger for an Early Access to Medicines scientific opinion does not necessarily have to be the submission of a dossier for marketing authorisation application, but the availability of a sufficiently compelling case based on the total data and evidence collected to date as assessed by the MHRA.
This is, of course, conditional on data from the development process of the product which indicates that the benefit:risk profile of the medicine is positive.
The scientific opinion will be made available on the MHRA’s website to assist clinicians and patients in making treatment decisions, and to support informed consent by patients to the risks and benefits of the product.
The scheme will be launched and ready to receive applications in April 2014. I understand that full details, together with guidance, will be published on the MHRA website in due course.
This is an exciting initiative and just one way in which the Government is supportive of improving access to new medicines.
We are also consulting on a draft Medical Innovation Bill which aims to encourage responsible innovation in certain circumstances, and to discourage irresponsible innovation. The consultation paper was published on 27 February and the consultation period runs until 25 April. I would encourage anyone with views on the proposals to respond to the consultation.
We continue to support the existing incentives offered at EU level to encourage the development of medicines for small numbers of patients (‘Orphan’ medicines), and the development of the Commission’s plans for adaptive licensing, including their launch of the EMA adaptive licensing pilot on 19 March.
In giving patients access to the next generation of medicines before they are licensed, I hope you will agree that this scheme could help seriously ill patients in areas of unmet clinical need to have earlier access to new and effective medicines.

Tuesday 25 March 2014

VanSel Cycle 2 Days 8-9: a small milestone

A week into cycle 2 of the VanSel drug trial and we weren't sure whether Steve would be able to carry on.  He had not been feeling great over the weekend - very tired, coughing a lot and physically sick on Saturday.  So it was with some trepidation that we went to hospital yesterday morning, half expecting more problems with his ECG or bloods.

It was a relief therefore to be told by Dr Nick that the morning's ECG had not thrown up any problems with his heart rhythm. Bloods fine. All systems still go!  

Steve has been given medication to help the cough, and we have been re-stocked with hydrocortisone cream and antibiotic lotion to help keep his skin rash under control. So far, so good...

If you have read the blog recently, you will be aware that whilst taking part in the VanSel early phase drug trial, every so often Steve has to give "PK" research bloods over a 24 hour period.  PK stands for PharmacoKinetic from the Greek words pharmakon meaning drug and kinetics meaning movement.  In simple terms, it's the study of what happens to a drug between the time it enters the body to the time it is completely eliminated.  

As well as normal bloods and observations, yesterday and today was PK bloods day, with samples being taken 30 minutes before the morning dose of drugs, then at 2, 4, 6, 10 and 24 hours after the dose has been taken.  Although the amount of blood taken at each session is relatively small, five samples are taken on the first day's hospital visit.  Rather than make five separate small needle insertions, a cannula is used as this can be flushed and "turned off" between samples.  Always assuming the nurse can find a vein good enough to insert the larger needle size....that's where the fun began yesterday.  

It took four nurses several attempts to find a vein good enough for the cannula.  Although they managed to find a vein in his right hand, this seemed to close down after giving two samples. As a result, another cannula was inserted in his left arm in additional to the original one on the left.  Between the two cannulas they managed to squeeze out enough blood for yesterday's samples.

In between all this fun and games, we passed the time reading the weekend national and local papers from cover to cover; Steve dozed; I went walkabout to stretch my legs and we watched Made in Dagenham on the laptop.  Its amazing how tired you can get doing very little!  

Finally left the hospital in the evening, arriving home in time for a glass of wine before before the fast in the run up to the evening dose of selumetanib.

We were back in hospital again today, for the last of the 24 hour PK blood samples.  Just a small needle this time for one last sample.  We were in and out in less than 20 minutes, such a contrast to yesterday's 12 hour marathon...And that's the last 24 hour PK blood sample done and dusted!  Steve has done his bit for clinical research.  

Although the trial continues, he won't have to give any more research blood samples.  Just "ordinary" bloods for testing on a weekly basis, along with the other observations and examinations until the end of cycle 2 in mid April, not so far away now.  It's a small milestone, but a significant one for us. No more long hospital days on the calendar in the foreseeable future!  

Whether Steve continues on to cycle 3 (or beyond) depends on the results of the CT scan scheduled for early April.  That's the next milestone in this journey.  Thanks to everyone who is supporting us along the way x

Sunday 23 March 2014

VanSel clinical trial - Cycle 2 Week 1

One more dose of selumetanib tonight, and Steve will have completed the first week of cycle 2 in the VanSel drug trail.

If I had to describe the last week in one word, that word would be unpredictable.  

The side effects of treatment continue. The skin on Steve's face, neck and chest remains mottled with red areas, sometimes more noticeable, sometimes less so.  But at least the angry inflamed acne-type pimples, scabs and weeping wounds which cleared up during his week off the drugs have stayed away.

The occasional stomach cramps persist, but with no obvious pattern in terms of timing.  The need to take Imodium continues, but not every day.  A packet is in the emergency kit we take with us when we venture out, along with the tube of factor 50 sunscreen and antiseptic hand gel.  

The fatigue continues - Steve says he has lost his "oomph!" We have managed to get out and about a little, but usually find that at some point in the proceedings he's had enough and it's time to rest and/or go home....

Yesterday, for the first time since soon after starting the trial, Steve was physically sick, but felt better afterwards. However, the emergency bucket went back beside the bed, just in case.

All in all, he just doesn't feel right - a bit fuzzy, lacking focus...difficult to pin down in words.

Perhaps the most worrying thing is a continuing cough - not all the time, but usually when moving after being still for a long time, such as getting up in the morning, or after sitting in front of the TV or computer screen for several hours.  Steve mentioned it to the doctor last Monday.  The doctor thought it was caused by catarrh from his nose, which has been runny. We'll mention it again at the next appointment, as the cough seems to be exacerbating Steve's general fatigue.  

As you can probably tell, we are going through one of our feeling rather vulnerable periods at the moment.  We're both concerned that the cough may be meso-related, a sign that the cancer is growing notwithstanding the drug trial. However, we will have to wait for a bit longer to find that out.

A scan appointment has come through for the last week of cycle 2.  Presumably we will get the results in time to know whether he can continue on to cycle 3, if he wants to.  If the cancer is stable, shrinks, or does not grow more than 10-20% in existing areas, that's good enough to carry on.  If the rate of growth is greater, or the meso spreads to any new areas then that's it.  End of trial and more decisions to be made about what happens next....

The side effects of treatment come and go in a random fashion, which makes getting on and doing things a bit difficult for both of us.  We never know what's going to hit him next, when and for how long, so seem to spend a lot of time just watching and waiting in case something happens....

Given the unpredictable nature of Steve's condition, I've been reluctant to start anything that can't be put to one side at a moment's notice, or to leave Steve alone for any length of time just in case he suddenly takes a turn for the worse....he's very good at falling asleep in the chair in front of the computer and then waking up feeling uncomfortable....

However, spring cleaning has begun, as has the bathroom refurbishment (thanks to plumber Keith - not a job we felt like tackling....) We are slowly, slowly making some progress on sorting out the garden and clearing the rented garage of all the items stored there which were ruined by the floods of January and February.  However, it's a painfully slow process when you can only take baby steps at a time.  Nevertheless, we've made a start.  

We even managed to print and frame some pictures for a local exhibition on Port Meadow, one of Oxford's wild green spaces, which is taking place in the Oxford Museum Gallery until mid-April.

We'll be back in hospital for two days next week while Steve gives his PK research bloods over a 24 hour period and has all the usual checks to make sure he is still within the trial protocol before he can continue taking the vandetanib and selumetanib.  More of that soon...

Big hug to fellow meso bloggers Mavis, who is now in the waiting period between having a scan and finding out the results, and Tess who has been having a tough time re-challenging her meso and will be talking through with her oncologist on Monday whether to continue.  Not forgetting all the other meso warriors out there - fighting and living through this awful man-made disease xx

Friday 21 March 2014

The Early Access to Medicines Scheme (EAMS)

Announcement from the UK's Medicines and Healthcare Products Regulatory Agency: 
"The Early Access to Medicines Scheme (EAMS) aims to give patients with life threatening or seriously debilitating conditions access to medicines that do not yet have a marketing authorisation when there is a defined unmet medical need.
Under the scheme, Medicines and Healthcare products Regulatory Agency (MHRA), will give a scientific opinion on a new medicine or indication that has demonstrated a positive risk/benefit balance.
The scheme will begin taking applications from companies from early April 2014. MHRA will provide advice on the scheme when it is launched and we look forward to receiving applications from then. 
The scheme is voluntary and the opinion from MHRA does not replace the normal licensing procedures for medicines. 
MHRA is responsible for the scientific aspects of the scheme and the scientific opinion will be provided after a two-step evaluation process:
  • step 1, the promising innovative medicines (PIM) designation
  • step 2, the early access to medicines scientific opinion.

Promising innovative medicines (PIM) designation

The PIM designation will give an indication that a product may be eligible for the Early Access to Medicines Scheme (based on early clinical data). The PIM designation will be issued after an MHRA scientific meeting and could be given several years before the product is licensed.
Companies who want to move to step 2 must hold a PIM designation and provide further relevant data on quality, safety and efficacy.
Early access to medicines scientific opinion
The scientific opinion will describe the benefits and risks of the medicine, based on the information submitted to MHRA by an applicant after sufficient data have been gathered from the patients who will benefit from the medicine. The opinion will support the prescriber and patient to make a decision on whether to use the medicine before its licence is approved".
Announcing the scheme on 14 March, Dr Ian Hudson, Chief Executive of the Medicines and Healthcare Products Regulatory Agency said:
We are delighted that the Early Access to Medicines Scheme will be launched in April 2014. The scheme is intended to enable patient access to medicines for treatment of life threatening or seriously debilitating conditions where there is an unmet need. This is a major new development in medicines policy in the UK.
“The scheme offers a way by which unlicensed medicines can be available to patients before approval of a licence to benefit public health. It will also enable companies to gain additional knowledge and experience of these medicines in clinical use.”
That's got to be good news for people with mesothelioma, especially those who have had the standard treatment of Alimta and cisplatin (or carboplatin) and whose cancer starts to grow again.  When you each the stage of second, third, fourth line treatment (or more), few people have the time or the option to take part in a clinical trial, especially where there is a 50-50 chance of getting a placebo, rather than the trial drug.
I do hope that the drug companies take up this option if the initial results in a clinical trial look promising.  

Monday 17 March 2014

VanSel 1 drug trial - Cycle 2 Day 1 : Good to go!

Just a brief update to let you know that Steve's ECG, bloods, other observations and physical examination this morning were good, so he's been given the all clear to start Cycle 2 of the VanSel Early Phase drug trial.  This will be staying with the reduced dose of vandetanib he's been taking this last week, so as to minimise the risk of harming his heart rhythm.

We continue with the weekly visits to hospital during this cycle (plus two days a week when giving research bloods over a 24 hour period).  There will be extra ECGs to check his heart's "QT Interval" over the next couple of weeks, just incase it gets prolonged again, as it did in cycle 1.  

This cycle of treatment is only 28 days (unlike cycle 1 which was 42 days).  At the end of cycle 2, Steve will have a scan and we will then find out what effect the trial drugs have had on the mesothelioma.

I think we are better equipped mentally now to deal with with the side effects of treatment, and can be just a little more relaxed about the times when Steve takes his medication.  As long as it's within a one hour window, all should be no need to worry about what to do when the clocks go forward at the start of British Summer Time next weekend - something that had been bothering us a little!  We have also been given an expenses sheet to reclaim travel costs, which is helpful.

So....Cycle 2, here we go!

Sunday 16 March 2014

VanSel Early Phase drug trial - Day 42 and the end of cycle 1

One more dose of selumetanib tonight and Steve will have completed the 42 day long first cycle of the VanSel 1 drug trial!  

He's had side effects as you will know if you have read earlier blogs - stomach cramps; extra visits to the loo; some loss of appetite; a very bad skin rash which is now more under control.  Those are the obvious symptoms.

Less obvious, but potentially more serious, is the effect of the drugs on his heart rhythm, which is probably the underlying cause of him feeling not quite right without being able to identify the reason for feeling this way.  This resulted in a week's break from treatment and re-starting with a lower dose of vandetanib.

We will soon find out whether this dose reduction has been enough for him to maintain a "QT interval" in his heart rhythm which is within the drug trial protocol. 

In between the regulated eating and fasting times imposed by the drug trial we have made some progress on the home, garden and garage front: clearing out cupboards and cabinets as part of the preparation for a bathroom refurb; emptying the dilapidated garden shed to see what we still need and what can be recycled or passed on.  

We've also made a start on the daunting task of going through items stored in a garage we rent a few streets away, which has been flooded twice since the start of 2014. Everything stored at ground or low level remains damp and sodden, so the bags of books, toys, games and clothes which were waiting to be taken to a charity shop have ended up being recycled instead because of the health risk of being immersed in contaminated water.  

That job will keep us occupied for the next month or so, shifting a car boot full of items every couple of days in between hospital visits.  Always assuming of course, that Steve is able to continue on the VanSel Trial. We'll find out the answer to that tomorrow, with the start of Cycle 2, we hope....

At least we have been able to enjoy some blue skies and sunshine this last week.  Seeing the spring flowers blooming, green shoots appearing and butterflies flitting about lifts the spirits no end!  

Happy St Patrick's Day to all our friends in Ireland.  We'll raise a glass of the black stuff tomorrow night to mark the occasion and hopefully celebrate the start of Cycle 2 on the VanSel 1 drug trial.

If you live in Leeds, Cardiff or London please try to get to one of the Department of Health's consultation events for the Saatchi - Medical Innovation - Bill.  Follow this link to find out more.  

The other big news item for severely ill people is the "Early Access to Medicines" scheme which is to be launched in April. You can read more about it by clicking HERE.  The Department of Heath's explanation is below:  

Monday 10 March 2014


We returned to hospital today after an interval of week without medication to see if Steve's heart rhythm had improved enough to allow him to continue taking part in the VanSel early phase drug trial.  

As you can imagine, we felt rather apprehensive as we waited for the results of this morning's ECG and blood tests.  Would the heart's "QT" interval (which measures electrical activity in the ventricles) have dropped below 180, the maximum allowed under the drug trial protocol?  

After what seemed like an agonising wait, Juliana the clinical trial nurse appeared and told us the news.  Steve's ECG was "better" - good enough to carry on with the trial but on a reduced dose of vandetanib, one of the two biological therapies being tested in this dose escalation study.  

Steve was the first person in the current drug trial cohort to have the higher dose of vandetanib.  Based on his experience alone, increasing the dose runs the risk of patients having heart problems.  It remains to be seen whether the other five patients in the cohort can tolerate the higher dose or, like Steve (whose natural "QT" interval is longer than average), experience problems which pose an unacceptable risk.  

There was another interval while we waited for the blood tests results to come back - all good, I'm pleased to say - and to find out from the drug company how the reduction in vandetanib would be administered.  

The word came back eventually that Steve would take a reduced dose of the drug on a daily basis, rather than the higher dose every other day.  We heaved a sigh of relief...that will make life a lot easier, not having to remember whether he is on a vandetanib dose day or not!  He will continue to take the other trial drug, selumetanib, at the same dose twice a day at 11.30 am and 11.30 pm.  

So....after an interval of week, we are back on the VanSel track, with regulated feasting and fasting times.  

The drug trial clock has re-started.  Today is Day 36 of Cycle 1, which lasts 42 days.  Assuming all goes well on the reduced dose of vandetanib, by the time of his next hospital visit, he will be starting cycle 2 of the drug trial which is only 28 days long.  That cycle will be followed by a scan. Then we will know what effect these therapies are having on the meso.  

In the meantime, the close monitoring continues with another eye test tomorrow and an echocardiogram, both of which take place outside the hospital complex so a slightly different routine for a change.  

We will of course be doing our own monitoring and hoping that Steve's skin does not flare up again as badly as last time, now that he's back on the drugs.  His face is still not back to normal, but at least the rash just looks like ordinary teenage acne now rather than the weeping sores, scabs, flaking skin and numerous inflamed pimples on a red background that he's had to put up with until recently (sorry if that's too much information....) 

Good luck and a big hug to Tess, who is re-challenging her meso with her fourth line chemo since diagnosis xx.

Sunday 9 March 2014

A roller coaster of a week in a small world

Having spent all of February getting used to a new routine based around twice weekly hospital visits and regulated eating and fasting times, it came as a bit of a shock to the system to be told last Monday that Steve should stop taking the trial drugs vandetanib and selumetanib because of the effect they were having on his heart rhythm.  Not the news we were expecting.....

With hindsight, in some ways it was a blessing in disguise.  In other ways, it has made us feel more vulnerable.

Perhaps naively, our expectations were that Steve would see an improvement as soon as he stopped taking the medication. The reality was that in the following days he felt worse (no energy, no appetite, skin condition deteriorating further).  The low point was Wednesday evening, when he ate hardly a morsel; the skin on his cheeks was sore and weeping; he had no energy and his mind was dull.  By then we were thankful that he had stopped taking the trial drugs...not liking to think what it would have been like, had he continued.

As the prescribed creams seemed to be having little affect on his skin, Steve tried something new that night - an antiseptic healing cream called Sudocrem, which we used for nappy rash, back in the days....By Thursday morning, his skin was already showing signs of improvement and that has continued - a great psychological and physical lift.  By Thursday evening, his appetite had improved and the following day, he felt well enough to venture out for a short while.

The blue skies and milder weather over this weekend have cheered us up.  Although he had to smother his exposed skin with Factor 50 sunscreen, Steve felt confident enough yesterday to go out for a pub lunch, drop into a "garden room" showroom and have tea at a National Trust house. The best day out we've had together for ages!  Today, our spirits were lifted by the arrival of another birthday present for Steve and England's win in the Six Nations rugby tournament! 

However, tomorrow's hospital visit is beginning to loom large. That's when Steve will have all the usual tests and observations, including the ECG which will tell us whether his heart rhythm has returned to "normal" after a week's break from treatment.  Only then will we know whether he can continue to take part drug trial at the current dose, on a reduced dose, or not at all.  

These thoughts have been haunting us all week.  They highlight what a difficult position Steve is in; somewhere between the proverbial rock and a hard place....
  • If he can continue at the current trial drug dose, does he want to, given the problems with side effects experienced thus far and bearing in mind that he has yet to complete the first cycle of treatment?
  • Will he be offered the opportunity to continue at a reduced dose and, if so, would the dose reduction mean that the side effects would be more manageable?  
  • What if his heart rhythm has still not settled down after a week off treatment, will the break be extended for another week, or will he have to leave the trial? 
  • If he has to leave the trial, what happens next if the meso is still growing?
Not surprisingly, there have been times when we both felt a bit vulnerable over this last week. But we're trying not to worry too much at this stage.  There's no point speculating about the answers to these questions; we will find out soon enough.  However, we have needed to give some thought as to how Steve would feel in any of these scenarios, so that we're not paralysed like a couple of scared rabbits caught in the car headlights when we find out what's what tomorrow.  

That's why it's been a bit of a roller coaster this week, but what's the reference to the "small world" in the title of today's post?  

When I started the blog, it was primarily a way of keeping family and friends up-to-date with Steve's condition.  I didn't honestly think it would be going on as long as it has (but I am delighted to still be writing it!) or read as widely. One of the people who has been following the blog is Margaret, a Canadian whose husband has mesothelioma.  She contacted me recently to let me know she would be visiting Europe, including a few days in London, and wondered whether we might meet up.  

We had lunch and then went on to spend the afternoon together, discovering the parallels between our respective journeys and sharing information about the different approaches to treating mesothelioma in our respective countries. More of that in a future blog! It was great talking to someone who understood exactly what I was talking about and feeling - a very special afternoon.  

Margaret - I'm so pleased you decided to get in touch and made the effort to fit a visit to Oxford into your busy schedule!  Many thanks again for the presents and the information.  We will keep in touch, I am sure!

And on that upbeat note I will finish today's post, so we can prepare ourselves for tomorrow, the start of a new week .....and who knows what that will bring?  

Monday 3 March 2014

a birthday, a blip and another bereavement....

First of all, thank you for Steve's birthday cards, messages and good wishes.  It was a low key day, with phone calls from our children, a special evening meal and a nice bottle of vintage fizz at home providing some highlights.  We'll have a proper celebration when Steve is feeling a bit better.  

The antibiotic tablets and cream seem to be making a small difference to Steve's skin on his face, neck and chest. Although it's still a long way off "normal" at the moment, there does seem to be a slight improvement day on day. However, still not enough at the moment to feel comfortable about going out in public unless he has to, like today - hospital day.  

We were all geared up for another 12 hours in the clinical trials unit - newspapers to read, a couple of films to watch on the laptop, a cushion to support my lower back (visitors chairs not good in this respect, especially if you spend the best part of twelve hours or so sitting in them!). 

Steve's bloods were taken for testing, along with blood pressure - still high, but not as high as last week - plus ECG, which measures the electrical activity of the heart over a period of time.  Steve had three measurements taken at five minute intervals.  We thought nothing more about it at the time, just waited for Dr Nick to arrive to give Steve a physical examination.

We know that some patients treated with vandetanib alone have experienced changes in the electrical activity of the heart, usually without experiencing any symptoms.  As a result, patients on the VanSel drug trial have frequent ECG assessments to ensure that any changes are managed by the doctor and do not become serious, as they can be linked to a condition called Torsade de Pointes, which can be life threatening. 

Each heartbeat is mapped by the ECG machine as five distinct electrical waves called P, Q, R, S and T.  The part of the pattern from Q to T represents the electrical activity of the heart's lower chambers, or ventricles.  When the QT interval is abnormally long, it means the heart cells in the ventricles are taking longer to recharge after each heart beat.  This can upset the careful timing of the heartbeat and may trigger an abnormally fast or irregular heart rhythm which can result in dizziness, light headedness, chest discomfort and shortness of breath or fainting.  

We were told this morning that Steve's "normal" QT measurement is longer than average and has been getting a little bit longer at every ECG.  Today, it measured 182.  The drug trial protocol is that a patient's QT interval should not go above 180 for their safety and to avoid the sort of things described above happening.  

As a result of his prolonged "QT" interval, Steve will stop taking the trial drugs for a week in the hope that his heart's rhythm will return to normal. However, he can continue to take the antibiotics which show signs of helping his skin improve.  Although the rest of his blood tests were OK, they think he would benefit from some extra magnesium. Amongst other things, magnesium plays a role in the transport of potassium ions across cell membranes, a process which is important to normal heart rhythm - so that should help his heart beats return to (what for Steve) is normal.  

Reading what I have just written sounds a bit scary. However, Dr Nick pointed out that in the drug trial everyone in the same cohort gets the same dose, regardless of their height, weight, metabolism etc.  There is bound to be some variation in how people react as the dose is not tailor made for each individual. Hence the regular and frequent monitoring to ensure that everyone stays safe.

With no trial drugs to take for a whole week, we are off the hook in terms of the strict mealtimes (and Steve's fasting) regime, we've grown accustomed to over the last four weeks. It will be strange!

I will now have to cross off the hospital dates on the calendar - everything will be shunted back at least a week.  We'll see how the next seven days go and take it from there....

We came home to more sad news that another meso warrior died today. It's less than two weeks since Ian, Grace and one of their sons, met up with fellow meso warrior Mavis and Ray for coffee in Kent.  Ian's sudden deterioration has come as a shock to all.  

Our hearts go out to his lovely wife Grace, their sons - the youngest of whom is only 11 years old - and Ian's family and friends  xxx

Saturday 1 March 2014

"Life is short" : A bridge between mesothelioma and photography

Since Steve was diagnosed with mesothelioma in 2009, my priority has been to support him in whatever way I can, and in the process, raise awareness of the disease and the risks associated with asbestos.   In parallel with the meso journey, photography has become a creative lifeline; something else to focus on when times are tough; something for me to do alone when Steve has needed to rest; something to enjoy together and take us on other types of journeys when life has been good; something to share with others.  

At the outset, these two big things were very separate   However, the line between the meso journey and photography often gets blurred these days.  People we have met in the mesothelioma community enjoy looking at the photographs posted in the blog and on Facebook.  Many of the friends we have made through photography now number amongst our strongest supporters as Steve battles through another treatment regime.

Milestones, such as the start of a new year or an anniversary of something special, often trigger a bit of navel-gazing.  So perhaps it's not surprising that Steve's birthday tomorrow - his fifth since being told he was terminally ill - has triggered such thoughts.  

However, on this occasion the rest of the post I'm going to share with you is not mine.  It's a piece originally written in 2010 by David duChemin, world and humanitarian photographer, nomad and author, which was re-posted on his website today.  

Since being dealt the body blow of mesothelioma diagnosis in 2009, we have come to understand and appreciate the sentiments expressed below.  We have certainly done our best to enjoy our time together as much as possible over the intervening years.  It also seemed a fitting way to build a bridge between two strands which have run through our lives since then - a piece written by a photographer which was inspired by the experience of knowing others living with cancer

David duChemin writes: 

Life is short. Nov.16, 2010

I had breakfast with a close friend of mine yesterday and it’s that meeting that is making me write this, because I can’t keep it in this morning. His wife, one of my favourite people on the planet, is fighting for her life against inoperable brain cancer. She’s fighting, but she’s not well, and the doctors are talking in terms of quality of life, not healing, not remission. My heart is breaking for her. My heart is breaking for him. A young couple that, like all of us, thinks they have forever together, have all the time in the world to chase their dreams. But we don’t. None of us do. It’s an illusion.

Life is short. We seem to think that we’ll live forever. We spend time and money as though we’ll always be here. We buy shiny things as though they matter and are worth the debt and stress of attachment. We put off the so-called “trip of a lifetime” for another year, because we all assume we have another year. We don’t tell the ones we love how much we love them often enough because we assume there’s always tomorrow. And we fear. Oh, do we fear. We stick it out in miserable jobs and situations because we’re afraid of the risk of stepping out. We don’t reach high enough or far enough because we’re worried we’ll fail, forgetting – or never realizing – that it’s better to fail spectacularly while reaching for the stars than it is to succeed at something we never really wanted in the first place.

A woman emailed earlier this year. Her husband, the love of her life, was a fan of mine and he’d just come through a tough fight with Leukemia. She asked if I’d take some time with him, go shooting with him if he came to Vancouver, sort of as a celebration of his recovery. I said yes, of course, how could I not. But I was busy, about to travel, and could we do it in a couple months when summer rolled around and I had time to host him. Of course. Let’s talk soon. I got back two months later and sent an email saying, let’s make it happen! And 5 minutes later got a reply telling me the leukemia had returned with speed and fury and within days he’d gone. Even now, I’m writing this with tears, though anyone that knows me knows it doesn’t take much.

We think we’ve got forever and that these concerns that weigh us down are so pressing. We worry about the trivial to the neglect of the most precious thing we have: moments we’ll never see again. We talk of killing time, passing time, and getting through the week, forgetting we’re wishing away the moments that comprise our lives. We say time is money when in fact the time we have is ALL we have. Money can be borrowed, time can’t. We fear taking risks, unaware that the biggest risk we run in playing it safe is in fact living as long as we hope and never doing the things we dreamed of. And then it’s too late. We watched our favourite TV shows, we fought a losing battle with our weight, we picked up the guitar once in a while and never quite finished the french language courses we wanted to do. We managed to get a large flatscreen and new cars once in a while, but the list of things we’d have done if we could really, truly could have done anything, kept growing. And we never did them.

I don’t know how to wrap this up. There’s no resolution. I was in Sarajevo last week thinking about all this; I’d be walking the old city thinking how amazing it was, looking into the hills that surround it. And then it occurred to me, just over 15 years ago the citizen of Sarajevo that stood in this spot was likely to be hit by mortar shells or sniper fire. We’re all terminal folks. We’re all in the sniper scope. We’ve got less time that we think. For every ten people that email me and say, “I wish I could do what you’re doing. I wish I could follow my dreams, I wish, I wish…,” I wonder if even one moves forward. I hope so.

Whatever your dream is, find a way to make it happen. Your kids can come with you. Your job can wait. You can find someone to feed the cat. I know, I know, there are so many reasons we can’t and some of those reasons are valid. Life is not only short, it is also sometimes profoundly hard. But I think sometimes our reasons are in fact only excuses. If that’s the case, take stock. I talk a lot about living the dream, and I’m an idealist, I know it. But it’s not self-help, positive-thinking, wish-upon-a-star. It’s the realization that life is short and no one is going to live my life on my behalf. And one day soon – because it’ll seem that way, I know it – my candle will burn out; I want it to burn hot and bright while it’s still lit. I want it to light fires and set others ablaze.

Life is short. Live it now. And live it with all your strength and passion now. Don’t keep it in reserve against a day you might not have. While the ember is still lit, fan it to flame. Be bold about it, even if your circumstances mean all you have is to love boldly and laugh boldly. Because now is all we have, and these dreams won’t chase themselves.

I would credit the photographer, if I knew whose image this is!