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!

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 can....so 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

Back in the system

Like many people with mesothelioma, since Steve was diagnosed in June 2009 our lives have been structured around regular hospital check-ups.  In Steve's case, visits every three months or so preceded by an X-ray or a scan to show what's going on inside.  

We have rarely made plans or commitments beyond the date of the next assessment, so have lived life in three month blocks of time at best (or shorter periods if Steve has been receiving treatment).  As appointment day approaches the tension mounts as we wonder what news the latest scan will bring us - "Scanxiety" as the meso warriors call it.  

But for all the uncertainty and scanxiety, being in the three monthly assessments system has been a comfort in many ways....at least someone is keeping a close eye on Steve (other than me); there is an opportunity to discuss his condition and treatment options at regular intervals; we know whether the cancer has shrunk, is stable, progressing or spreading.  

When Steve was taken out of the system last December (when the doctor estimated his life expectancy as a "small number of months") it came as a shock after five and a half years of having regular three monthly assessments.  It felt like we had been cut adrift.  We had lost something that had helped give some structure to the otherwise random and unpredictable pattern of our lives.  We did not realise how much we relied on that crutch until it was taken away.  

Steve could call the hospital or GP at any time and we had made contact with the local hospice so, of course, he hadn't been cut off from medical help and support.  However, not being offered an appointment for his regular three monthly assessment underlined how serious the doctor considered his condition.  If I am brutally honest, it also made me think that a "small number of months" wouldn't stretch to three....We were preparing ourselves for the inevitable.

Regular readers of the blog will know that the expected deterioration in Steve's health has not happened - not yet at least!  He no longer looks frail; has gained weight; energy levels have improved as has his outlook.  In short, he is not the same man as seen by the doctor last December.  At least, that was our assessment and the views of family and friends who have seen him over the last few months.  What we did not know until yesterday was whether the medical profession would think likewise.  

I am delighted to tell you that nurse Hannah, Oxford's new mesothelioma nurse specialist shares our view!  She even said to us that Steve is not the person she was expecting to see, based on the notes and letters on his file.  In her view, his performance status has improved and he is now well enough to take part in a further clinical trial, if he wishes to do so - an option not open to him four months ago.  

There is a mesothelioma-specific clinical trial in the pipeline in Oxford (and elsewhere) which will start recruiting later in the year.  The drug is Vinorelbine, one of a number of drugs developed from the periwinkle plant.  It stops the growth of cancer by preventing cancer cells splitting into two new cells. It has been used as a first line treatment for mesothelioma and other cancers so is not a complete unknown, unlike the early phase trials and dose escalation studies he has taken part in before. However, there has been no randomised evaluation of its effectiveness as a second line treatment in mesothelioma, which is what this forthcoming multi-centre trial will do. The trial is being lead by Prof Dean Fennel of Leicester University.  For more details click here and here.

Steve has expressed an interest, so we shall see what happens...

I still find it frustrating that he is not allowed to take part in immunotherapy trials because of his history of autoimmune disease - the google alerts are flagging up good news for a number of immunotherapy drugs.  However, at least Steve has a possible treatment option now, if he chooses to take part and is eligible.  

He also has an appointment for three months time, in mid-July, and will have a scan before then which will act as a new baseline.  So he is BACK IN THE SYSTEM!!!  You have no idea how happy and relieved that makes us feel.  We broke open the Prosecco last night and are now thinking about lots of nice things to do between now and mid-July.  Life is no longer standing still :-)  

We both know that it could all go horribly wrong, but it feels like we have been thrown another lifeline so we will hold on for all we are worth and enjoy the ride!