Yesterday I managed a meeting with Professor Kevin Harrington, my original private patient Oncologist in London who sent me to this trial I'm currently on. It was a very nice meeting, I learned he's just become a first time father (!) and is running on about one hour of sleep a night (I can hardly imagine his career and then that on top!).

Kevin seemed cautiously happy with my situation on the trial; of course we would all have preferred it if the drug caused me full remission, but 'stable' and slight reduction is pretty good.

Kevin went on to tell me that these are very exciting times in cancer, and that they are right now in negotiations to start work with a whole new range of treatments that he described as antibodies that defeat some cancer cells ability to 'hide' from one's immune system. He put it in 'Star Trek' terminology as a cancer cloaking device de-cloaking device.

There are early stories coming out of the US of a few people on trials there who have been dramatically helped by these new antibodies, and in some cases it is even starting to look like these could result in a full cure, not just another suppression tool!

These don't work on all cancers, nor for all people with the 'right' cancers yet, but Kevin figures the more time GDC-0980 buys me, the more likely there will be something appropriate and new to try if and when GDC stops forking for me (which could be any time).

One form of cancer that this new approach appears to work for is metastatic melanoma, which is one of those they have considered un-curable (same as with metastatic squamous cell carcinoma, which is mine).

Anyway, I thought all of that was pretty cool!

I have a CT scan in four days, on 6 May.

Onward through the fog we go.

It is so nice to see that you are feeling positive and enthusiastic in these trying times. My husband is on immunotherapy which is exactly what Professor Harrington told you about. The trials are being conducted all over the world albeit on small samples. It appears that some lung cancer patients have had tumour reduction and that is why they have now opened up John's particular trial to head and neck patients. Our MO feels these are exciting and interesting times. She also mentioned that if the drug John is on does not work well, there are others he can try.

Seth and Gloria-
Thank you for a smiling start to my Saturday with your uplifting reports! I remember hearing through the blur last year our MO telling us that "immunotherapy is where it is going". My husband is almost halfway through the current 30 rounds of rads to treat these stinkin' mets.
Best to you both,
Mary

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

Sorry to hear of your challenges, Seth. I hope this new trial gives some better results.

Seth -
glad to hear your parents and there to help and that your wife will return soon. Your doctors sound like they are on the ball, and hopefully the new trial will be right on target. Will be thinking of you.
Maria

Hi Seth, I'm so sorry to hear that GDC-0980 did not work out. You have been very brave in dealing with the various medical issues that have arisen and in wanting to continue with still another trial. Generations of future cancer patients will benefit from what the doctors will learn because you have decided to carry on fighting and not quitting. Post when you can, I will be cheering you on.

I have faith and hope that this new drug will do what you need it to.

You have been through one head spinning set of events. I hope so very much whatever follows works and keep the monster at bay, especially given the other health issues compounding the cancer treatment options. It does sound like you have a solid link to the best research specialist in the country so you should take comfort that all this is possible is known and reviewed for you. Best wishes and thanks for the update. Don

Seth-
Just catching up and saw your post. I am so sorry about this setback. However, it is encouraging to note the zeal and attention the doctors are showing in pursuing the antibody treatment possibility. Best of luck as this option is investigated.

Sincerely,
Mary