Monday, 14 April 2014

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!   

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