Well, I said I would report on progress good or bad, so here goes.
Had radiotherapy on ribs last week and much better now, I can now lie pain free on my right side so all good there. Turns out, I had actually cracked a rib at the diseased point. I actually know how I did it. It was by sneezing!
Had pre trial blood works taken 2 weeks ago. Last Friday had an extensive medical which was so intense, it was something you would expect a NASA astronaught to have! Even got breathalised!
Had base scans performed on Tuesday. However they said they needed to rerun a specific blood work as one of my levels was (only just) above the required parameter.
Unfortunately my liver function (ALP) had risen in the last 2 weeks from 35 to 42. The maximum allowed for this trial is 40. So trial is off.
Saw my oncologist today who went through everything in detail. Looks like the cancer is now going for the liver. However, more concerning, three areas up my spine have intensified and the CT scan showed clearly that I am in big danger of spinal cord compression. My back does ache a bit but had no idea it was serious. Just thought I was a bit stiff.
Looks like I will be having an emergency MRI scan followed by radiotherapy on the three areas probably during next week. It will be single dose zaps which was effective last week on my rib and 2 years ago on my hip.
After this I will wait to get on another trial. If there is none available in Newcastle, then will go down to the Royal Marsden, if that is quicker.
Although disappointing, the silver lining is that a big problem has been highlighted by having the CT scan which I was only having to be on the trial, (last one was in June). I feel quite blessed. Still walking 8-10 miles a day, though a bit slower of late.
On a previous post I said that I had blood taken for analysis in America for mutations to genes and compared against my biopsy sample taken eight years ago.
It seems that although told stage 4 at that point, the cancer has continued to mutate and there are clearly two genes which have mutated and are probably driving the cancer. This is very important. 12 months ago, my original biopsy was sequensed and these mutations were not identified.
As targeted therapy are the way forward, had the mutant genes been identified a year ago, different treatment options may have been available. However, the new blood test was not even available. Things are moving very quickly! So if you are offered to get your biopsy sample sequensed, and it was done many years ago, like mine, see if you can get this blood test.
I will report back with any progress with regards to a new trial