Had an appointment at the Royal Marsden hospital on Friday to review where we are up to. I was aware that monitoring my AFP tumour marker is going to be a key indicator in determining what happens next and when. The first thing you always do when arriving at the RMH is to have a blood test. What is frustrating is the fact that they don't have the results available for when you see the consultant. This time it was Professor Horwich who confirmed the obvious - they would await the outcome of the AFP marker level from my latest blood test (should have it today - Monday - hopefully). He was unaware of the additional tumour on my right lung which showed up on my pre-surgery CT scan - he hadn't seen the scan from the Royal Brompton. They are also awaiting a pathology report on the tumour and the additional tissue removed during the op. Apparently the initial report suggested that the germ cell tumour was also exhibiting signs of having transformed into another cancer type - the tisse has been sent to the RMH for further analysis. Knowing the exact make up of the tumour may help them define a more appropriate mix of chemotherapy treatment.
My recent tumour marker results have been 20 April - 160; 4 May - 182, 18 May - 265. Surgery was on the 29th May, and todays blood test was 10 days since surgery. In theory my AFP level could well have been up to 320 before surgery. If the tumour they removed was the only cancer source then by today the AFP level should have halved to 160 'ish. I'm not holding my breath for the result on today - even though it would stop my chest from hurting.
I have a follow-up appointment booked for two weeks (22nd June) but knowing that if I have a blood test that day they won't have the results to review I suggested I get a blood test done in Reading a few days earlier, so I do have some results for the meeting. What a good idea!! Why didn't I think of that. Oh , I just did!
I'll be coming around cap in hand shortly after the insurance company advised they don't cover stem cell treatment, which means I will probably be charged for the stem cell harvest I've already had! I'd consider a sponsored run to raise money but I can only just walk!