Wednesday 29 July 2015

Friends, food, festival fun and mud....lots of mud!

Having decided to make the most of summer without any planned treatment, we got off to a good start last week by being sociable...

....evening drinks with our friend, near neighbour and former work colleague Murray to celebrate his decision to start a new life away from the City Council - we wish him the very best of luck :)

.... a meal out as guests of our dear friends Jonathan and Sally to celebrate Jon's birthday, at a rather wonderful pub called the White Horse, Kings Sutton.  A bit of a drive from here, but worth it.  Thank you Jon and Sally for a wonderful lunch and get together!

....singing, dancing, and eating our way around the world to music at the WOMAD (World of Music and Dance) Festival, Charlton Park on Sunday. We met up with nephew Nick, partner Kate, their delightful daughter Esme and Di (Nick's mum) for a drink and a catch up in the San Frans Disco Bar - a tent complete with drapes, dance floor and glitter ball, 

then later again in the big Siam Tent to listen to Laura Mvula do a great set. 

In between, we caught other bands (our favourite was Red Baraat - Brooklyn meets Banghra - great to dance to).....

....visited the Steam Fair, eat samosas, and churros dipped in chocolate (not at the same time, I hasten to add!) photographed the wonderful silk flags and enjoyed watching people and splashing about in the mud, which was plentiful, deep and wet.  

We finished the full festival experience by forgetting where we had left the car - fortunately Steve remembered and located it in the rain and dark - and getting stuck in the mud trying to get out - and luckily, I was able to push it far enough to get to slightly less muddy ground and we escaped.  All adds to the fun!

More this week - my birthday trip to Bath on Wednesday to deliver a print to the Royal Photographic Society and then go off exploring, and a family weekend to look forward to with daughter Katie and partner Ed and a get together with more friends, followed by a visit to son Jack and Steve's mum....let's hope the sun returns soon....

Tuesday 28 July 2015

We have a plan....sort of....

Following our recent meeting with Hannah, the Oxford meso nurse specialist, Steve contacted our friend and former neighbour who works as an oncologist at the Royal Berkshire Hospital in Reading, to talk about the pros and cons of treatment using a drug called vinorelbine.  

They had a long chat over the phone about the drug, which is apparently well tolerated by most people, with side effects being manageable.  Although the response rate is relatively low (10-15%) it's a chance worth taking, we think.  

The Reading oncologist who uses vinorelbine to treat mesothelioma is on a sabbatical at present, but will be back at work in a couple of months time. It looks likely that Steve will ask for a referral to discuss treatment with him in the autumn, assuming he still feels well enough to take more drugs at that time.

In the meantime we are going to make the most of summer, even if is unseasonably cold, wet and windy at the moment. To find out what we've been up to so far, please read my next post!

Tuesday 14 July 2015

Scan results: seeing the big picture and putting it in perspective

To understand this post fully, I need to take you back in time. 

Steve's previous scan was on 11 November 2014.  Usually the results come through in 2-3 weeks.  However, when he experienced significant pain two days after the scan, the results were fast-tracked and we were given a brief oral summary of the main findings on 14 November.  The bottom line at that time was that his disease had progressed with increased pleural thickening and two visible lesions on his liver. He was taken off the drug trial at once and arrangements were put in place for radiotherapy to the lump on his chest, which the scan confirmed as the cancer growing through the chest wall.  

His most recent scan was last week and we were told the results on Monday.  Some of the news came as a not-very-welcome surprise.  It now appears that as well as the lesions in his liver and increased plural thickening on the right lung, the detailed report on last November's scan (which we had not seen or been told about) also revealed that the cancer has spread to his left lung and spine, plus there was significant swelling of lymph glands in the centre of his chest and near his trachea (wind pipe). 

So - unbeknown to us at the time - that's where things stood in November last year.

What's happened in the eight months since then?

The bad news is that 

  • almost all lung nodules increased in size
  • several new nodules in the left lung
  • increased thickening of the pleura and new nodules in the right lung 
  • increased lymph node swelling in the middle of his chest
  • "mild" progression of the bony metastatic disease in his spine
  • he has developed sigmoid diverticulosis - a common medical condition of the colon, unrelated to the mesothelioma 

But there's good news too:

  • a significant reduction in the right chest wall mass where it has grown through his ribs (that's the radiotherapy working)
  • no worsening of the resultant rib destruction
  • no thickening of the left pleura
  • decreased swelling of the lymph node near his trachea 
  • no pleural thickening or nodes below the diaphragm
  • one liver lesion reduced in size
  • no free fluid/ascites
  • no swelling of the lymph glands in the abdomen
  • the remainder of the gut (above the colon) is "unremarkable"  
So we are now up to speed with what's going on inside.  Not the best picture, but it could have been worse.  The disease is progressing, but slowly rather than galloping away, and it has not popped up anywhere else in his body in the last eight months.

As our meso nurse specialist said, "We treat the patient not the scan".  She was pleased to hear that Steve is still enjoying life, has maintained his weight, been away on holiday and been quite energetic, with lots of walking.  She still thinks that he is well enough to take part in another clinical trial if he wishes to do so. 

The vinorelbine (VIM) randomised Phase II trial, which is planned to run in Oxford and a number of other centres, has yet to open.  We are not even sure whether Steve would be eligible as the inclusion criteria allow pre-treatment with standard chemo (pemetrexed plus a platinum-based drug) ONLY.  Since diagnosis in 2009, Steve has been on three clinical trials as well as having standard chemo, so he may be excluded for that reason.  Plus there is always the risk on a randomised trial that you get the placebo, and life revolves around weekly hospital visits for the duration of the trial without any personal benefit.  When you've already done your bit for medical science by taking part in three early phase trials and life is getting shorter all the while, you may not want to take that gamble....

However, vinorelbine is already being used to treat mesothelioma elsewhere in the UK not on a randomised trial, including Barts in London and the Royal Berkshire in Reading. As it happens, one of the Reading oncologists who works with vinorelbine is a former neighbour of ours here in Oxford, so we hope to arrange an informal chat with him about the pros and cons of going on the drug before requesting a formal referral/second opinion if Steve decides he is ready for more treatment.  I am also investigating whether we can get Steve's DNA sampled to see if he has the BRCA1 gene, as this gene seems to a key factor in how successful vinorelbine is at killing mesothelioma cells. 

Our meso nurse is also happy to arrange referrals to other hospitals if Steve decides he wants to follow up on either of the other two clinical trials currently recruiting (see my last post for details) which - on paper at least -  he appears to meet the inclusion criteria. However, those would involve long distance travel so are likely to be held in reserve for the time being.  If Steve has more treatment, he would prefer it to be closer to home.  

We also discussed a new immunotherapy drug called Nivolubab which has been given the green light recently under the Early Access to Medicines Scheme (EAMS) for another type of lung cancer. Apparently there have been numerous requests to extend its use to include mesothelioma, including requests by Prof Dean Fennel of Leicester (a name the meso warriors will be familiar with) but so far the drug company has resisted all such requests.  If Dean Fennel can't twist their arm, no one that one remains on the wish list for the time being.  

The other thing we talked about was SABR - an intense, targeted form of radiotherapy.  I gather from the discussion that it can, and has, been used to treat mesothelioma, but the parameters are very strict.  It can only be used on cancer nodules of a certain size in areas away from major vessels and organs.  She didn't say it outright, but by implication, our meso nurse does not consider that Steve's disease would meet these strict parameters, so that's not an option for him at this stage.  However, he can have one more blast of standard radiotherapy to the lump on his chest if that starts getting bigger, and another regime on other parts of his body, for example, on his spine if the cancer there causes discomfort. 

It was a long and very useful session.  Hannah, our meso nurse specialist, is happy to take as much time as we need, is very supportive and gives us honest answers.  She is up to speed on what's happening elsewhere in the country on mesothelioma, so she knows what we're talking about when I start asking questions about clinical trials elsewhere and innovative drugs.  Her view is that a second opinion is always good, especially if your own consultant is a bit risk averse and unlikely to recommend innovative drugs, even if they have been given the green light by the EAMS.

In truth, I suppose we feel a bit shell shocked....the spread of disease to Steve's left lung and spine was not something we anticipated.  However, as we now know, that had already happened by last November and it didn't stop us having fun once Steve started feeling better this year.  We can take some comfort from the fact that disease progression has not been significant in the last eight months and has not spread further. We have been able to enjoy life in the meantime.  I didn't think that would be possible late last year, when Steve was at his lowest point...

We have already started making plans for the next few weeks.  The next appointment with Hannah will be in October. In the meantime, there are treatment options to explore and a whole summer and autumn to enjoy. 

You enjoy it too x

Sunday 12 July 2015

boat trips, beaches, meet ups and catch ups

From time to time I visit Guernsey in the Channel Islands for work.  At the end of June, instead of travelling alone, Steve joined me, we extended the visit and managed to enjoy some pleasure as well as business...

....A "Puffin Patrol" boat trip, when we saw lots of puffins, not to mention a host of other sea birds (but really needed a good telephoto lens to make the most of the photo opportunities)...

.... took the ferry to Herm, where we walked across the island to Shell Beach and treated ourselves to an ice cream in the shade, before heading back to the village for lunch at the pub then taking the ferry back to St Peter Port...

...going around the Island on "The Guernsey Vaeux" local bus service, stopping off on the west coast for tea and a cake sitting at one of the beach kiosk picnic tables...

...spending a very enjoyable evening with a friend and work colleague , Jonathan, whose visit to Guernsey overlapped with ours..

After a quick turnaround on Saturday, we headed off to London last Sunday for another meet up at Tate Modern, this time with our dear cyber friend Linda Reinstein, CEO and co-founder of the Asbestos Diseases Awareness Organisation (ADAO) and Global Ban Asbestos Network (GBAN) who was visiting the UK for a conference at the London Hazards Centre which took place on Action Mesothelioma Day while we were away in Guernsey.  

Linda is one of the the most amazing, committed, energetic and dedicated people we know.  She often signs off her messages to me with a request to kiss Steve for her with bright red lipstick.  On Sunday, she delivered that kiss in person!  So very lovely to meet up with you in the flesh at long last, Linda!   xox

Since then we have been catching up at home, unpacking and sorting ourselves out; going through the backlog of e-mails; weeding, dead-heading and enjoying the sunshine in the garden; working on the "business" element of our trip to Guernsey; Steve has had his scan.  We also celebrated the birth of Reggie, the first born of Emily and Nick whose wedding we went to this time last year, and some good news on the photography front, with one picture shortlisted for the RPS International Print Exhibition, another given a silver award in PX3 (Paris Photo Prize) and a third being runner up in the Pollux Awards, as well as several Hon. Mentions in the Julia Margaret Cameron Awards for Women Photographers.

In between all this, we've been dipping into and out of the sports fest happening on TV this week - the F1 British Grand Prix, Le Tour, The Ashes and Wimbledon.  

And then suddenly, it's upon us.  

Assessment Day.  


It will be the first time Steve has seen a doctor (as opposed to the Meso Nurse Specialist) since last December when he was advised that he only had a small number of months to live.  So it should be interesting when the doctor sees his weight gain, tan, hair ....

....If truth be told, the prospect is also a bit scary, as we'll get some idea of the rate of disease progression since Steve came off the last drug trial in November 2014 and had radiotherapy in December to the lump where the cancer has grown through the chest wall and to his abdomen, where another small lump had appeared, possibly related to the metastasis in his liver.  

Plus, I'm concerned about a bout of catarrh he's had since flying back from Malaga which makes him cough in the morning, and yesterday made him wheeze quite noticeably. Then there's the occasional pain in his right shoulder which Steve insists is a pulled muscle but I have a niggling concern that it may be due to tumour growth pressing on a nerve. That's the problem with mesothelioma.... every little cough, ache and pain and you think to yourself is this the cancer taking off, when its probably something very minor and innocent... 

We'll find out soon enough.  Tomorrow we'll know whether the doctor thinks he's now well enough to take part in another clinical trial, cough and shoulder pain notwithstanding and, if so, if there is a suitable trial currently recruiting in Oxford (in particular, the Vinorelbine trial which doesn't appear to be open yet) or elsewhere. Assuming he's well enough, Steve will then have to decide whether he's ready to have another go at treatment after being knocked back so badly by the two clinical trials he took part in last year.

As usual, I have been doing the homework with a list of questions and other possible clinical trials to discuss, including the ADI-PEG 20 with pemetrexed and cisplatin Phase 1 study at Barts in London and another Phase 1 stem cell dose escalation study of VS-5584 in combination with VS-6063, currently recruiting in Leicester and at the Royal Marsden.  

I would also like to find out more about two drugs that have been approved for treating another type of lung cancer - non-small cell lung cancer (NSCLC) - under the Early Access to Medicines Scheme (EAMS).  In particular, Nivolumab immunotherapy and Zykadia which has been designated a Promising Innovation Medicine under EAMS.   

Plus, in 2013, the NHS announced that it had commissioned SABR (Stereotactic Ablative Body Radiotherapy) for NSCLC.  I think it would be helpful to know whether this very intense, targeted form of radiotherapy which spares healthy tissue might work mesothelioma and, if so, where we can find out more.

OK...I know I'm clutching at straws...but what else is there when there is no cure, disease progresses after the gold standard treatment of pemetrexed and either cisplatin or carboplatin and other trial drugs, and Steve is excluded from the very promising immunotherapy trials because of his history of autoimmune disease (arthritis).  

However... it might all be academic if the doctor doesn't think Steve is fit enough to take part, and/or Steve can't stomach the thought of more debilitating side effects.  We shall see...

As usual again, the calendar is more or less empty from now on, apart from non-use related medical appointments, family visits and one work commitment for me, date still to be confirmed.  Whether it will be filled with more hospital visits or social things (or will remain on hold while decisions are made) depends on what happens tomorrow afternoon.  Not so much "scanxiety", more about keeping options open and avoiding clashes or letting people down....

....I let you know what happens in due course...