Alas my luck has changed. Benefitting from 20/20 hindsight, on about 8 July 2014 I began developing some new symptoms, which became chest pain and shorter shortness of breath.
On 15 July an early CT scan showed cancer growth, increased pleural effusion, first-time but minor pericardial effusion, and my trial was cancelled as the GDC-0980 had lost its effectiveness after 6 months; ok, not good, but time for the various teams to meet and agree Plan B. The Drug Development Unit (DDU) at Royal Marsden Sutton had another trial drug they wanted to try, but there needed to be a 4-week flush-out period, and I also needed to ensure that Prof Kevin Harrington was involved in decisions and he was away on holidays that week, but ok, we had some time.
But by 18 July I had become really sick and ended up in A&E with my heart in fast Atrial Fibrillation and a whole host of other new problems (suspected blood clot in my left lung, suspected infection, worsened pericardial effusion). I was in hospital for 12 days while they got my heart put back in its box. I ended up on Amiodarone for heart beat and a daily injected anti-coagulant for the blood clot (suspected). I developed 22 lbs of oedema swelling from my abdomen down (!!). I was very fortunate in the A&E I chose to go to, and my time at the Chelsea & Westminster Hospital (C&W, an NHS hospital) was significant for the fantastic staff who looked after me there. You Americans may wish to note that this has cost me exactly nothing, which is just amazing, really.
On the evening of 31 July Prof Harrington visited me at the C&W and agreed that he wanted to try to get me into a new trial, likely one of these 'antibody' drugs, which was the answer we were afraid to hope for (after all, he might have taken one look at me and concluded I was too sick to treat, for all I knew).
A few days later I had a phone conversation with Prof Harrington. It turned out that getting me into an antibody drug trial was proving problematic, but he revealed that in consultation with the DDU he had learned that they had analysed my tumour and confirmed a certain mutation in my cancer, meaning that as my cancer cells divide to grow, they are limited to just one of two 'repair' mechanisms that normal cells can employ. This strongly suggested a *different* class of drug on trial for me, an ATR inhibitor, that selectively blocks the cell repair path my cancer does employ, leaving the other path available for my normal cells. This was the trial that the DDU wanted to suggest, but at this time they had no slots available for multiple weeks, but it happened that Prof Harrington had his own trial of AZD6738 by Astrazenica on the go an he could get me straight in to that, and this would be at the Royal Marsden Hospital in Chelsea, much closer to home than the RM Sutton DDU. Ok, sounds good!
Last week my wife and I attended Prof Harrington's trial clinic and we discussed the trial; it's an early stage phase 1 trial and they don't really know how it will effect people yet, and also I'm likely to get a fairly low dose as I'll be entering the dose escalation phase at an early stage; good in that it's less likely to be toxic, but maybe not so good as it might be ineffective at the low dose. However this trial allows my dose to be ramped up as subsequent groups demonstrate the safety of higher doses.
This week I have been working from home basically waiting to be called back in to the RM Sutton for trial screening, and we hope to start the trial drug next week. I've been put into contact with an amazing local charity called Trinity Hospice that, yes, does provide palliative care services but also provides many other support services, and they've been here to see us once and have been very helpful already.
My heart has been behaving, my oedema has greatly reduced (though my feet and ankles are still swollen), and my digestion is improved. I suspect the Amiodarone heart pill is causing me constipation and bloating, but getting off that that scary drug will require a cardiology follow up which will hopefully be scheduled/arranged by Prof Harrington's team.
Alas, just yesterday and last night things have begun to turn a bit worse. It's been very difficult to sleep for quite a while now; having to sleep on just my left side so my 'good' lung is 'up' - any other position means the pericardial effusion fluid shifts and presses and I can't breathe. Until recently I had no pain to speak of, but now I seem to be rather quickly developing new aches in my chest. Is this the cancer? The fluid? Probably both. I also have a pretty nasty hard dry cough.
And there you have it! It's just about 8 a.m. on Wednesday, 13 August 2014 here in London, England. My parents have flown over from the USA to be with me and are renting a neighbour's flat in the building. My wife has had to fly home to Canada to help with her own very elderly and sick father, but returns Sunday. I'm waiting for the other shoe to drop regarding this new trial, and wondering if it will do anything, and if will do that soon enough.
Damn, just over a month ago I was still bicycle commuting to work and basically felt fine, the GDC-0980 keeping my cancer in check. It's been a hell of a month.
Thanks for 'listening'.
-Seth