beginning to bounce back

It's now two weeks since Steve finished the Vansel drug trial. During the first week off the drugs, it felt rather like two steps forward, one step back as some side effects disappeared, others carried on and some became worse.  

The good news is that it's been an improving picture this week.  Steve's appetite has returned and he is eating well most of the time.  He still feels tired, but the dreadful lethargy has faded away and he's had some energy to do a few things around the house.  

The flurry of spots on his face has died down. However, the mild nose bleeds continue on and off, as has the cough, but not quite so much...I think...

The most noticeable difference is Steve's demeanour - he is smiling and laughing much more and the body language is much more positive.  The bounce back has begun, I believe...let's hope it continues!

We are thinking about a trip to Bristol next week to visit Steve's mum.  The plant we bought as a Mothers day present (which we couldn't take to her as he was unable to venture far from the lavatory at the time) still has some flowers on it, so I'm hoping she will see it before it finishes flowering completely.

It's our wedding anniversary next Thursday - the fifth since Steve was diagnosed with mesothelioma, so it feels like another important target is within our grasp. 

We've progressed the garden makeover project to the point where we are now able to invite estimates to carry out the work.  Still a long way to go, but when it's finished, it will be wonderful to be able to sit out and enjoy the garden again after neglecting it for so long.  

Love as always to the meso warriors, especially to family and friends of Michael who died a few days ago after a valiant battle with the disease, at the tender young age of 29 years...Such a waste of a young life, made all the more poignant because it could have been avoided had asbestos been banned globally when the dangers of inhaling or ingesting the fibres became known.  

On a more positive note, the response to the Saatchi Bill consultation has been excellent, with over 18,000 people giving their support, including many in the mesothelioma community.  If you want to know what happens next, follow THIS LINK!

By the time I post again, it will probably be May.  Happy Mayday to everyone, especially those brave souls in Oxford who get up at the crack of dawn to hear the choir singing on the top of Magdalen College Tower, then head off to watch the Morris groups and others strut their stuff. And the pubs are open too....Here's David Clover's video of last year's May Morning celebrations to give you a flavour!  

slowly, slowly, slowly....

We knew better than to expect instant relief from all the side effects of treatment once Steve stopped taking vandetanib and selumetanib on completion of the VanSel drug trial. However, his last dose was on 13 April so we were hopeful that by now, a fortnight later, he would be feeling the benefits of stopping treatment.  But it's a very long, slow process....

The good news is that the Imodium went back into the medicine drawer at once and has not been needed since.  A huge relief!  However, Steve's gut remains affected in other ways.  

Occasionally he feels hungry and can manage a meal with "normal" portion sizes.  However, more often than not, it takes less food to make him feel full and longer to digest what he does eat.  We think his stomach must have shrunk over the 10 weeks on the drug trial when he eat less at mealtimes than he would do normally and was unable to "top up" later because of the fasting period around dose times   His belly certainly looks flatter - so maybe that's not a bad thing...However, he also still has the occasional feeling of nausea, which stops as soon as he eats something. 

The tiredness and lethargy continue.  Yesterday Steve dozed off during the day and was in bed before 11pm - most unusual.  When on the trial, he rarely went to bed much before midnight, having to stay up to take his evening tablets at 11.30pm.  He still has the occasional dizzy spell and a general feeling of not being quite with it some of the time.

Then there's the on and off cough, which sounds a bit more "chesty" now.  It may be that Steve has now come down with the bug that gave me a short, but very intense, cold over Easter.  Or maybe not...

There have been other unexpected things. Although Steve's skin rash had all but disappeared by the end of the drug trial, he has since developed another flurry of acne-type spots on his face - thankfully not nearly as bad as before, but surprising all the same as he's no longer taking the drugs which caused them. 

He's also noticed the slightest of bleeds when he blows his nose - just enough to stain the tissue, rather than a proper bleed. This started when he stopped taking the drugs, and continues sporadically.  

Strangest of all is the fact that facial hair growth seems to have slowed down considerably.  He's shaving far less frequently as a result.  I wonder if that is related to the return of the skin rash/spots? 

I'm recording this as I know that by the time we see the doctor again for his post-trial check up in a fortnight, we will probably have forgotten some, if not all, of it.  The blog is like an occasional diary in that respect; it can be very useful to look back for comparative purposes.  

And that's what I have just done to see how long it took Steve to recover from the side effects of the last biological therapy trial he was on in 2009 (the Velcade trial).  Re-reading that experience was quite an eye opener...

It wasn't until six weeks after finishing the last of 6 cycles of Velcade that Steve finally put away the sick bucket and anti-nausea tablets which (by then) had been living beside the bed for six months.  The peripheral neuropathy (tingles in his feet and toes) went on for much longer and in fact got worse before it got better.  At least Steve doesn't have that problem now, thank goodness! 

This all sounds a bit negative.  In fact, we enjoyed the Easter weekend (notwithstanding all my sneezing and nose blowing). Daughter Katie and her partner Ed came to stay, bringing with them gifts of cardboard eggs stuffed with little chocolate eggs of various types and sizes, as well as little "chicks" just like the ones we used to bring out every Easter to decorate the breakfast table, next to the hot cross buns on Friday and soft boiled eggs on Easter Day.  

It was also a belated birthday celebration for Steve, as he didn't feel much like celebrating back in March, and a chance to enjoy a pub lunch out together before they returned to London.  

In between all this celebrating and slowly, slowly recovering from side effects of the drug trial, we've made a bit more progress decorating inside the house and cutting back the jungle in the garden.  We have even met the neighbour who lives directly behind us and had a few enjoyable chats over the back garden wall, which was exposed when our old shed came down and shrubs cut back or removed.  He has lived there for 7 years and this is the first time we've seen each other face-to-face - just shows how overgrown everything had become....

And my photo of a chair taken in Santorini was one of the winners in the RPS 365 competition on the theme "Shadow"!

Mixed feelings

The scan results are in....the bad news is that there has been disease progression since Steve started the VanSel drug trial.  

The radiologist looked at a number of circular lesions in the right lung and compared sizes on the scan taken last week with the pre-trial scan in January. The growth was assessed as 26%, which sounds rather alarming. However, due to its nature, diffuse mesothelioma is notoriously difficult to measure accurately, so there is some margin for error in this assessment.

The good news is that in real terms the total (cumulative) increase in tumour size is only 1.7 cm.  We were told that the rate of growth is extremely low when compared to most mesothelioma cases.  The other good news is that the mesothelioma has not spread below the diaphragm or into Steve's bones, and remains confined to the right lung with no new areas showing up on the scan.  

In fact, the bulk of the cancer is still so small that it's difficult to tell the difference between right and left lung when the back is percussed.  It does not sound dull, which is what happens if the meso grows significantly.

Dr Nick examined Steve's chest and advised that the pain he experienced recently in the rib area is nothing to do with the meso - it's just a strain from coughing (which seems to have improved over the last day or two).

Under more recent clinical trial protocols, a 26% increase in tumour size would be considered "stable" disease.   However, the VanSel study started in 2011.  At that time, it was decided that the drug trial protocol would define any growth greater than 20% as disease progression.  Because Steve's has gone over that threshold, the treatment has to stop.  

Having had a couple of hours to digest the news, this outcome has left us both with mixed feelings: disappointment on the one hand and relief on the other.  

Disappointment that the combination of drugs has not stopped Steve's meso in its tracks and that, for him, its not the magic bullet to cure the disease (although it may work better on someone else).  It's also possible that the benefit of taking the drugs has yet to manifest themselves in Steve's case - there may be a delayed response, or it may have slowed what would otherwise have been more rapid growth. The bottom line is that we don't know.

But now that the decision about continuing the trial has been taken out of our hands, it feels like a weight being lifted off our shoulders.  Steve had said that even had there been a reduction in tumour size, deciding whether or not to carry on with treatment would still have been a tough call. Living with the side effects of the trial drugs, especially daily diarrhoea at unpredictable times, has keep us housebound for the last couple of months...Steve has felt too vulnerable to venture far from a lavatory. It's difficult to imagine enjoying a life like that in the long term, at least not at the moment while he is otherwise asymptomatic.

Steve remains under the care of the Early Phase Clinical Trials Unit for another four weeks and will go back at the end of that time for a post-trial check up, including blood and urine tests, temperature, pulse, blood pressure, weight and ECG. He won't need another scan having had one relatively recently, or another eye test - that was done this afternoon.  

Dr Nick will tell Steve's consultant what's happened, and he will be put back in "the system" and followed up in clinic, as normal.  However, Steve's name will be put on the waiting list for any suitable Phase 1 trials that come up in future. Because he is relatively fit (aside from the mesothelioma) he is considered an ideal candidate.  We were also told that there are other trials coming through in Oxford, so maybe he won't have to wait too long if his condition worsens.

In the meantime, he's looking forward to getting the drugs out of his system and returning to "normal" over the next few weeks.  Its a relief to know that from now on, our lives won't be regulated by dose and fasting times; we can once again enjoy the pleasure of a late breakfast and an evening meal without worrying about finishing food and drink by 9.30 am/pm.  Meals out with family and friends are on the cards again as and when Steve's gut gets back to normal, and we can think about going away for a long weekend or short break, which we have both missed this year.

And now, for the first time in 2014, we have the prospect of not going to hospital for a whole month!  The team on the Early Phase Clinical Trials Units are great, but it will be nice not to have to see them once or twice every week, as we have been going since January when the pre-trial tests started...With blue skies and sunshine, it almost feels like the start of the long school holiday.... 

....and Easter will be extra special this year!   

The trial is over

Today is Day 28 of Cycle 2 of the Vansel Early Phase drug trial which started on 3 February.  Which means after 70 days and two cycles of treatment  the clinical trial is now officially over - or at least it will be when Steve takes his dose of selumetanib tonight.  

Tomorrow we will hear the results of his scan.  Depending on the outcome, Steve may or may not continue treatment with vandetanib and selumetanib.  However, he's done his bit for medical research for the time being, so no more "PK" bloods over a 24 hour period - just going back to hospital for monthly check ups if the drugs have worked for him and he decides to continue. 

So what has it been like looking back over the last ten weeks, with the benefit of hindsight? 

No noticeable side effects for the first two weeks when he was taking vandetanib on its own.  On Day 15 when he started taking selumetanib as well as vandetanib, there was a violent episode in the evening - diarrhoea, nausea, feeling clammy and dizzy - whether directly related to the dose or a result of food poisoning we still speculate....but after the initial crisis, he felt fine again - although he needed to take Imodium, at first every other day then on a daily basis, if not more often.

On Day 18 the skin reaction started on his face, neck and chest.  First a red flush, then red spots which developed quickly into inflamed acne-type pimples and flaking dry skin, followed by open weeping wounds. Not nice. E45, hydrocortisone and antibiotic creams to the rescue!

The following week, another side effect of treatment became apparent during one of his regular ECG tests. Unknown to us, the "QT" interval which represents electrical activity in the heart's lower chambers had been getting longer and longer between each ECG.  By Day 29, the interval was longer than specified on the drug trial protocol.  Immediately treatment stopped for a week to allow his heart to recover.  One of the other benefits of the break in treatment was that his skin condition started to improve too.

When Steve resumed treatment on Day 36, it was on a lower dose of vandetanib, 100g a day rather than 200g, and that's how he continued for the remainder of Cycle 1 which lasted 42 days and Cycle 2, which was 28 days long. 

His heart rhythm has remained fine and his skin condition as continued to improve gradually.  There was one more bout of sickness at the start of Cycle 2, and another spectacular vomit in hospital in the second week of Cycle 2, but most of the time that has not been a problem.

However, the other side effects have continued - diarrhoea, now on a daily basis; occasional stomach cramps and loss of appetite; sudden nausea which is usually a sign that he needs to eat something quickly, even though moments before he has said he isn't hungry.  Not forgetting fatigue.  Occasionally his sparkle returns, but most of the time it's an effort to do anything, and he often drops off to sleep sitting in front of the computer or TV.  

We have more or less got into the rhythm of fasting for six hours a day - no food or drink (other than water) for two hours before and one hour after each morning and evening dose of drugs.  What is difficult to get used to is the unpredictability and suddenness of the other side effects....When Steve needs the loo, he needs it very quickly....When he needs to eat to stop feeling nauseous, he needs to eat very quickly.  And you never know when this is going to happen, which makes planning or doing anything far from home very difficult.  

Likewise, while his general energy levels are low most of the time, occasionally he will feel fine and get on and start something, then just as quickly feel drained and have to stop whatever it is he's doing.  So life has been very stop/start and unpredictable over the last couple of months.  Something you can live with in the short term, but in the long term? Mmmmmm....not so easy.

The last thing to mention is his cough, which seems to come and go.  Steve says it's caused by catarrh dripping the back of his throat from a runny nose, rather than deep in his chest. However, when it's been bad it has caused a pain in his right side, at the bottom of his ribcage, like a stitch.  

The mesothelioma is in his right lung, so at the back of our minds is the possibility that this pain may be caused by the cancer pressing on a rib as it grows, or coming through the chest wall, or maybe he has another pleural effusion? On the bright side, there are no outward signs of lumps or bumps in the area as far as we can see, so maybe the pain is simply because he has pulled a muscle coughing. 

We can only speculate today.  Tomorrow we will find out for sure.

I'll keep you posted. x

Mesothelioma - making sense of recent developments

April 2014 is shaping up to be a significant month for the mesothelioma community and other people with rare and life threatening diseases.  

With announcements about new regulations, draft legislation, new schemes and consultations coming thick and fast, it's easy to get confused or overlook something.  I thought this would be a good time - between Steve's end of trial scan and hearing the results next week - to take stock of all these changes, join the dots and look at the bigger picture.  

So here goes....

Clinical Trials Regulation in Europe
For mesothelioma and other diseases for which there is currently no cure, the way forward has to be through research and clinical trials.  The problem at the moment is that there is no legal requirement to register clinical trials or publish results.  

On 2 April, the European Parliament voted to adopt a new Clinical Trials Regulation.  This will require, amongst other things,

• All new trials to be registered on a publicly accessible EU clinical trials register before they begin
• A summary of the results to be published within a year of the trial's completion, including a summary understandable to non-medical people
• Clinical Study Reports to be publicly available 

There are often not enough patients in one country alone to develop new or improved treatments for rare diseases. The new regulation will make it easier to conduct cross-border, multinational trials within the EU by cutting red tape and simplifying the current rules by having:

• One straightforward authorisation procedure for all EU Member States, resulting in one single assessment outcome
• Simplified reporting procedures, with one report for all Member States
• Applying the same rules about protection of subjects to trials performed outside the EU where they are to be applied to trials within Member States
• A lighter touch regulation for "low intervention trials", for example trials comparing medicines which are already authorised  

The new regulation will also strengthen transparency and, in the process, avoid the redundancy and duplication which can happen when trials are not conducted and reported on in the public domain.  

As far as I can see, this is all good stuff.  There are only two downsides.  Firstly, although approved, the regulation won't come into effect until mid-2016, when the EU portal and database (currently under development) ought to be ready.  

Secondly, it is only concerned with new trials. It does not address the existing problem that we do not have full reporting on all trials for the medicines currently being used. Evidence is routinely and legally withheld, making it difficult to make an informed decision abut which treatment is best for a particular individual.  This harms not only patients but the pharmaceutical industry's reputation.  Shame on you!  

To find out more about All Trials which has campaigned for this change CLICK HERE . There are other useful links on this page.

The Early Access to Medicines Scheme (EAMS) 

This UK government scheme came into effect on 7 April. 

EAMS will see doctors working with patients to make innovative and promising drugs available as soon the Medicines and Healthcare Products Regulatory Agency - the UK’s regulator - has signalled that the benefits outweigh the risks following an initial scientific assessment.  Severely ill patients with life-threatening and seriously debilitating conditions will be offered the lifeline of trying ground-breaking new medicines years before they would normally reach them.

The scheme will be funded by pharmaceutical companies which develop innovative treatments, meaning patients will benefit from world-class breakthroughs at no cost to the NHS. Once drug manufacturers have received a scientific opinion from the Medicines and Healthcare products Regulatory Agency, doctors will work with patients to prescribe the drugs when appropriate.

In return, the companies will be able to gain experience of their medicines being used in the NHS and work closely with regulators to look at the value of the drugs, gaining guidance and advice much earlier in the regulatory process.

As a result, the process of patient access will be speeded up and new drugs could be made available to patients months or sometimes years before the treatment is licensed.

The scheme involves a 2 stage approach:

• Stage 1: Promising Innovative Medicines (PIM) Designation - Based on early clinical data (for example, a Phase 2 trial) where a drug shows early promise, the maker can apply for a PIM.  This can happen several years before the full clinical trial is complete and the drug licensed
• Stage 2: Early Access to Medicines Scientific Opinion - This will describe the benefits and risks of the medicine and support doctors make a decision as to whether the drug might be suitable to help a patient with a life threatening disease like mesothelioma, for whom there are no other treatment options

Full details of EAMs are now on the website of the Medicines and Healthcare products Regulation Agency, the body responsible for regulating the scheme.  You can read about it in more detail by CLICKING HERE .  The scheme is now up and running, and the deadline for submitting the first applications for a Scientific Opinion is 5 May.  

As far as we are concerned, this is wonderful news.  There have been a number of promising clinical trials involving immunotherapy drugs which Steve is unable to take part in because his medical history of autoimmune disease (arthritis) which might skew the drug trial results.  However, if one of more of these drugs achieved a PIM designation and the Scientific Option indicated that in his case, the benefits would outweigh the risk, that would open up treatment options for him in future, which can only be a good thing!

The Medical Innovation Bill aka Saatchi Bill

One of the things which holds back the medical profession from taking risks associated with new, innovative treatments is fear of litigation if it all goes horribly wrong.  This is something that the Medical Innovation Bill seeks to address, while still protecting the patient's interests.  

The law as it currently stands dictates that patients are only offered standard treatments.  However innovation departs from standard treatment.  The Bill supports doctors who endeavour to act in the best interests of the patient without fear of litigation.  

It deters irresponsible experimentation but encourages a much needed attitude change in favour of innovation in the provision of patent care. 

The Health Minister has said the Government will support the draft Bill but ONLY if it has public support.  You can read more about the Bill and add your support by CLICKING HERE!  The consultation closes on 25 April.  

Please, please, please support this Bill.  It's an important piece of the jigsaw.  

The EAMS scheme described above will only work to patients' benefit if the medical profession is bold enough to take advantage of it and prescribe promising, but unlicensed, drugs to patients who need a lifeline, having exhausted all other treatment options.  Doctors are far more likely to be prepared to make such decisions if the fear of litigation is removed.  

The Bill proposed by Maurice Saatchi (who lost his wife to cancer) would give the medical profession the reassurance it needs that innovation won't lead to litigation if decisions are made with care, the best interests of the patient at heart, and based on the best information available.  

Moreover, it will cover innovative medicine of all types - not just drugs, but also surgery and other medical procedures, and therefore benefit a wide range of patients who might otherwise die before today's innovation becomes tomorrow's gold star treatment or cure.

Mesothelioma Priority Setting Partnership (PSP)
With avenues for research, clinical trials and innovative treatment opening up as a result of the developments described above, it is of the utmost importance that patients, their families and carers have an input into setting priorities for research into the disease.  The Mesothelioma PSP has been consulting widely with this group and with the healthcare professionals who treat them.  

The consultation is due to close 30 April!  If you fall into this group and have yet to give your views on what research would make a difference to you and what researchers should be working on, then please go the the PSP website and complete the questionnaire before it's too late.  This is your chance.  Use it!  

To access the survey, please CLICK HERE!  

So what does it mean to us?
If you managed to get this far, well done you - and thank you!  

As I've been writing this, it's helped me gather my thoughts on our situation....

Steve had his end-of-trial scan on Tuesday.  Next Monday, we will find out the results of the scan and whether taking the combination of vandetanib and selumetanib in the VanSel Early Phase clinical trial has stopped his cancer growing or spreading.  If the side effects of treatment are anything to go by, something must be happening, but whether it's happening to the cancer cells as well as normal healthy cells we will have to wait until Monday to find out.

We are both aware that these drugs are primarily aimed at people with non-small cell lung cancer.  It remains to be seen whether they act the same way on mesothelioma.  However, if you don't test, you will never know.   So if it doesn't work out, at least we will not be plagued by thoughts of "what if...."

When Steve started the drug trial back in early February, we had no idea that the developments summarised above were even a twinkle in someone's eye.  The fact that they have reached these various stages by the end of the drug trial brings me hope that Steve will have other treatment options in the not too distant future, if the Vansel combination doesn't work for him.  Those of you in a similar position will know how good that feels.  

Take away treatment options, and you are likely to take away hope - at least until a cure is found.  And it will be found, one day.  

A huge and heartfelt hank you to all those who are working on it! 

VanSel1 Drug Trial Cycle 2 Days 22-23: "Fatbergs" and finding time to eat

Yesterday was hospital day - the last time Steve was required to give bloods for testing in this second, and maybe final, cycle of the VanSel drug trial.  The usual challenge on such days is to find a vein. Yesterday's additional challenge was to find a way around a "fatberg" in order to reach hospital in the first place...

One of the sewers in central Oxford has collapsed under the weight of a giant ball of fat and other stuff - the "fatberg".  A road in the city centre has been closed and traffic diverted around the station area.  

Oxford's traffic system is finely balanced at the best of times; one hiccup and there's a problem.  Yesterday, the start of the two week road closure to remove the fatberg and rebuild the sewer, traffic ground to a halt.  We were late for the hospital appointment and even later getting home again.  

Caught by the local paper's photographer, we are in the second silver car behind the blue van..sitting....waiting...and waiting....

Tied to specific dose times, Steve had no option but to take his trial drugs in the car, sitting in a traffic jam.  Luckily we had both drugs and water with us for emergencies.  We eventually abandoned the car in a side street just within our Residents Parking Zone and walked the rest of the way home. The car's still there (at least I hope it is!)

We have the same problems again today - finding a way around the "fatberg" traffic diversions to get to hospital for Steve's scan, then finding a vein for the contrast dye used to show up everything more clearly on the scan. But there is an added complication - finding the time to eat....

If you are a regular reader of the blog, you will know that Steve takes his trial drugs twice a day at set times, usually 11.30 am and 11.30 pm.  He must not eat and can only drink water for two hours before and one hour after taking the dose.  In effect, this means fasting between 9.30 and 12.30 every morning and evening.  

Those of you who have had a scan know that you are not supposed to eat or drink anything (except water) for 2 hours before the scan. Steve's scan today is at 2.00 pm, so nothing but water from 12 noon onwards.  In theory, this means that dose and scan "fasting" periods would overlap today leaving no time to eat lunch.  Oh oh!

Luckily, Steve has a little bit of flexibility about when he takes his drugs - up to an hour's window. Bringing forward his dose times last night and this morning little by little, meant we have been able to have a bite to eat late morning and were just about finished by midday.

According to the local media, traffic conditions in Oxford are just as bad if not worse today, so getting to the hospital will be a challenge again.  The bus companies have worked out a different diversion route after the major disruption to services yesterday, so maybe we'll use public transport instead and leave the car where it is for another day.  

If nothing else, living with mesothelioma has helped put life's other little challenges in perspective.  Right - take a deep breath and get on with it - here we go again.... 

VanSel1 drug trial Cycle 2 Days 16-21

One more dose of selumetanib tonight and Steve will have finished the third week of cycle 2 of the VanSel1 clinical drug trial.  Just one more week to go before we know whether it's all been worthwhile.

When asked how he's doing these days, Steve's stock answer is that he has felt better, but it's bearable.  Which is true up to a point.  None of the horrible metallic taste associated with standard chemo.  Not a lot of nausea.  No tingly fingers or toes (peripheral neuropathy). No need for blood transfusions or problems with low white blood cell counts, compromising his immune system.

But the fatigue is still there - he has little energy, so has been taking it easy most of the time, over the last 10 weeks. Daily diarrhoea takes its toll over a sustained period. He literally feels drained, although taking imodium is usually an effective way to manage this side effect.

There have been stomach cramps and times when his appetite has all but disappeared - one day, he couldn't even finish the banana he thought he might be able to eat for one meal....Then there are times when he suddenly feels the need to eat or become nauseous.  All completely unpredictable, so no point in spending a lot of time cooking elaborate meals.  We need things which can be prepared very quickly when needed, and can be eaten in small batches. Tapas to the rescue!

However, the once awful skin rash is not very noticeable now; the cough appears to be easing off a little and yesterday, for the first time in ages, Steve ate three meals - most unusual, but encouraging.  In addition, this weekend he has seemed brighter in himself.  

So... the side effects are bearable, but not the sort of thing you would wish to live with on a daily basis, given a choice. Likewise, the knock-on impact of these side effects which make it difficult to go out, visit family and friends and travel any distance would not make for the most enjoyable or fulfilling life on a long term basis.  

But if it means that the cancer stayed stable, would you be prepared to live with those sort of restrictions, and manage those side effects, if it gave you extra time? Tough choice....but not one we have to face quite yet, and maybe not at all...We'll just have to wait and see. 

Without doubt, Steve's skin condition has improved slowly since taking a break in treatment then resuming with a lower dose. Who knows, perhaps the worst of the remaining side effects may ease off over the next week in a similar manner, albeit taking a little longer....  

On the bright side, we cheered on Oxford to a convincing win in the Boat Race today!  

And being tied to the house has meant that more progress has been made with spring cleaning, redecorating and reclaiming the garden from the wilderness that has taken over over the last five years since diagnosis, when home maintenance and gardening were the last thing on our minds.  

Busy week ahead.  More of that in a future post. I'm ending today with good news.  The European Parliament has voted in favour of new legislation which will require all clinical trials to be registered and results published on a publicly accessible data base.  What a pity we have to wait until 2016 before it comes into effect.  

Still, it's another piece in the jigsaw puzzle of beneficial changes that are on the cards, including the (Saatchi) Medical Innovation Bill (if you haven't given your support yet please follow THIS LINK and sign the petition!) and the Early Access to Medicines Scheme (EAMS) , which starts this month!