b-raf follow up

Well, I had my appointment today with Prof Kefford to get the deal on the b-raf trial.
I have a few tests this week, an echocardiogram and CT scan tomorrow, I have to wear a heart monitor for 24 hrs on Wednesday and Thursday and then a PET scan on Wednesday next week. The CT and heart tests are to test my suitability for the trial, so they are the one's I have to pass. If they are all good, I will then have to do a raft of blood and urine tests and an EEG. They will probably be made for Friday or Monday.
The PET scan is to give us a base line for the start of the trial.
They plan on getting me in on 8th October. They don't waste any time at all. I have to wait 4 weeks from chemo to get it out of my system before they can start me on the trial. 28 days is 7th October!!!
So about the trial, the first day I go into the chemo day suite at 7am and am there for 12 hours. I take my first dose on arrival and then am monitored closely. I have blood taken every half hour for the first 2 or 3 hours (I can't remember exactly) and then every hour for the next 6 or 8 hours and then twice more before I go home. Days 2-7 I just take the drug at home but return on day 8 for a similar regime to day 1. On day 8 I also have another PET scan, tumours have shrunk in the first 7 days of taking this drug! Isn't that the most amazing thing you have ever heard. I cried when she told me that......I am really going to beat this! (Just in case you had any doubts!!)
I figure at that rate, I will be CANCER FREE by Christmas, what a great present!
The only thing the doctors are worried about is my heart. The ECG tomorrow will determine whether or not I will be starting the trial on 8th October. If it is unfavourable, in that there is fluid build up again, and the heart isn't beating as strongly as it could be but there is improvement from the ECG in hospital, they will give me another round of chemo and try another ECG in the hope that it will improve enough to get me onto the trial. So I am glad they have a backup plan they just aren't going, "oh well, didn't work too bad move on to the next one."
Once I am on the trial, whether it takes a few goes to get me on it or not, they will have to monitor me very closely because of my heart issues. Another concern they have is how my heart will react if the tumours shrink too quickly. Now isn't that a lovely problem to be faced with!
There are only 15 trial spots available worldwide so you have to have a pretty good case to get onto it. We met the lady this afternoon that puts our case forward to the worldwide committe. She has a very tough job, she has a stack of people that want to get onto this trial, but has to choose only a handful to put forward. It must be heart wrenching, and possibly why you are not allowed to have any contact with them until you are actually b-raf positive confirmed and signed the consent form, so 'a chosen one'.
She said one of the criteria she looks at is age and family situation, so in my case, a 38 year old with a 5, 3 and 4 month old would get a call up before a 90 year old. Not because my life is more valuable, but I have dependants relying on me.
Anyway, we should know fairly quickly the outcome so by the end of the week I expect I will have the good news!
Oh by the way, it's 10:43pm for those who asked!!
Off to sleep now xxx

NEVER, NEVER, NEVER GIVE UP! (Especially now we have b-raf!)