Tuesday 19 August 2014

Flying in a holding pattern

About this time last year, Steve's meso started growing again after being knocked back by the standard treatment of pemetrexed/carboplatin over the winter of 2012/13.  

The meso carried on growing, albeit slowly, through the VanSel early phase drug trial that Steve took part in between February and April this year.  So it came as no surprise yesterday to find out at Steve's assessment that there has been disease progression.  However, seeing the X-ray from January displayed next to yesterday's X-ray was a reality check; a noticeable increase in pleural thickening and tumour growth at the base of his right lung, wiping out any faint flicker of hope that there might have been a delayed response to the trial drugs.

Although there is another clinical trial currently recruiting in Oxford, it's a dose escalation study and has only recently started, so the clinical trials team know it will be some time before they reach an effective dose.  Dr Ioannis advised that he didn't think it worth putting Steve into this trial so early in the dose escalation as he probably wouldn't benefit.  

However, we understand that there are other things in the pipeline which are possibilities.  To see whether Steve might be eligible, he had bloods taken for testing: C&G, CF7 and BF7 (if we have read the doctor's hand-writing correctly). Does any one know what these tests are for?  I've googled but found nothing - at least nothing relating to blood tests....

There are also options to re-challenge with pemetrexed / carboplatin, which produced a good response last time around, and to explore clinical trials which are recruiting elsewhere.  We told him about the MK-3475 trial that fellow meso warrior Mavis is on at the Royal Marsden, and how promising her scan results were.  He is happy to refer, if Steve wants to see what's on offer at other hospitals.

The doctor has asked for another scan to be arranged in the next couple of weeks to compare the results with the scan taken towards the end of the VanSel drug trial, in early April. This will give an indication of the speed of disease progression, which may help decide the best option to go forward.  

The scan will also show whether the lump on his chest is meso-related or not.  The doctor thinks not, based on the X-ray.  However, the more detailed scan will clarify this. Whatever it is, thankfully it's causing no pain.  In fact, Steve is still feeling good and leading a "normal" life to all intents and purposes - walking, lifting, carrying with no significant problems.

If disease progression is speeding up, Steve may wish to start treatment with pemetrexed and carboplatin sooner rather than later.  If the meso is still relatively slow-growing, Steve may wish to hold off treatment until after Christmas, or whenever a promising trial is open for him.  

We have another appointment with the clinical trials unit in late September.  Steve will also be given an appointment with the consultant oncologist Dr T, to discuss all the options when the scan results are known.  That way he remains on the clinical trials waiting list, but can also have more of the standard chemo if that's considered to be the way forward. 

So....sometime in the next 4-6 weeks, we will have a better idea of the best course of action.  In the meantime, it feels like we are flying in a holding pattern until cleared to land on one treatment option runway or another.  

Whatever happens, we will make the most of the next few weeks! Arrangements are already in place for family gatherings in London and Bristol.  Flights and accommodation are booked for a get-together with our photographer friends in Heidelberg.  The last big push on the garden makeover starts next week, with a contractor doing the really hard work....We can just sit back, watch, and enjoy choosing the plants ready to plant out when it's all finished in a few weeks time!  

With Oxford Open Doors, London Open House, Oxford Thai Festival and St Giles Fair to look forward to in the next few weeks, some socialising and a work-related trip to Guernsey (as well as a scan and more hospital appointments) September looks like it will be another busy month with little time to get too stressed about what happens next. That's the theory anyway...

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