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

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