Tuesday 4 November 2014

Clinical trial AZD0424 Cycle 2: hopes, hair loss and halloween

We weren't sure whether Steve would go on to Cycle 2 of the drug trial last week, bearing in mind his side effects and the lump on his chest.  However, all the tests were fine and he was given the go ahead last Tuesday, together with a new bottle of capsules to see him through the next 28 days.

Dr Ioanis examined and measured the lump on Steve's chest and, like Dr Toby the week before, thought it was the cancer growing.  He suggested zapping the lump with radiotherapy and would find out whether that could happen while Steve was taking part in the early phase clinical trial of AZD0424.

Steve still harbours the hope that the lump is not the meso grown through his chest wall but is caused by something else.  He will only be convinced if a biopsy shows it to be malignant or it can be identified on a scan as growing out from the pleural thickening.  In my heart, I share his hope.....but my head tells me not to hold my breath. However, I can understand why he doesn't want to have radiotherapy until there is no doubt that the lump is malignant.  

Steve is due a scan some time in the next 7 days, but the appointment letter has yet to arrive.  We chased it up again at this morning's weekly check up and were told that the scan is booked in for next Tuesday and the results usually take a fortnight to come back.  

So in three weeks time, we ought to know two things for sure - firstly, whether there has been any disease progression since Steve start on the drug trial on 30 September and secondly, whether the lump we can see on his chest is connected with, and growing out from, the mesothelioma in the lining of the lung.  

In the meantime, the hair loss (a side effect of the trial drug) continues - Steve now has no eye lashes, few eyebrow hairs and very little hair left on his head.  Strangely, his body hair is unaffected...

Here he is pre-trial

Here he is on 28 October  (I quite like his Mohican!)  

Most of the hair you can see in last Tuesday's photo has now been shed and we are trying to get used to the new "norm" of baldness.  Steve still feels self-conscious and is reluctant go out, even wearing a hat.  As a result, we hid away on Halloween - his excuse being that he didn't want to frighten the little trick or treaters.  

It was also a bit of a poignant day for us for another reason - it would have been Steve's dad's 90th birthday this year...you can't help wonder how much longer he would have lived had he not been exposed to asbestos in the Bristol shipyards pre-WW2 and killed by mesothelioma in his early sixties...

The combination of three consecutive days in hospital and treatment side effects meant that the rest of last week has been low key.  Unusually for us, we turned down an invitation to a friend's big birthday party on Saturday, with a promise that we would have a second celebration with them when Steve feels better.

Not going out has meant that we have caught up with a few things indoors; paperwork for our tax returns has been collected up and posted to the accountant; a few things have been passed on to others through "Freegle" and eBay as part of the ongoing declutter and garage clear out; I have done some preparation for a work-related trip to Guernsey next week.  

We have met our "new" neighbours...in fact they are the owners of the house next door which has been rented out for the last few years.  They are now living in it themselves.  To our delight, they plan to do a bit of garden maintenance, including getting someone in to thin and trim the tree which overhangs half of our garden, creating dense shade in the summer.  Maybe we will see a bit more sunshine in 2015, when we sit outside enjoying the fruits of this year's garden makeover labours!

We were back to hospital again this morning for the regular weekly check up.  All is well, including Steve's bloods which were are examined closely to make sure he doesn't have an infection given the catarrh he's been troubled with recently. So week 2 of cycle 2 has started...another week to get used to the new norm.  Still can't think ahead as far as Christmas...

However, we will be raising a glass tonight to celebrate with fellow meso blogger Mavis, whose tumour has shrunk by well over 50% as a result of taking part in an immunotherapy clinical trial at the Royal Marsden.  It gives hope to the other warriors around the world!  I just hope that they can get it designated as a Promising Innovative Medicine (PIM) under the Early Access to Medicine Scheme so that Steve can be treated with it, as his history of arthritis means he's excluded from the drug trial itself.  

Mavis - should you choose to take it - here is your next mission impossible: please get the makers of your drug to apply for PIM designation! If any one can do it, you can xx

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