TRITON or RE-AKT

Thanks Lyn and Geoff.

This trial is quite an exciting prospect, but it is going to be hard work I think. I got the schedule of initial appointments this morning, which involves one appointment for a MUGA scan on the 7th Aug, three separate appointments (scans etc) on the 13th August and a further three appointments on the 22nd. That is just for starters!

All assumes of course that I am found to be eligible

I still feel knocked out after the RT treatment yesterday, but hoping that it settles in a few days. But for the last week (it started before the first RT treatment) I started getting a quite pain in my right armpit. It is getting worse by the day and I find it a bit worrying. HAs anyone else experienced this?

Geoff,

It sounds like your story is very similar to my own, though I did see a nurse practitioner at the GP surgery the very first time I went about the pains in my back, She was wonderful and knew exactly what she was looking for. She sent me right away for a PSA test and everything went on from there. That was in June 2015. I have often wondered what might have happened had I got an appointment with an actual GP!

I hope your next appointment goes well and that your onco has some interesting options for you.

Peter

Thanks AC.

That is what I feared myself. In actual fact, the pain has been a little easier today, but it is still there.

I have several hospital appointments over the next week or two, so I am sure it will be investigated then.

In the meantime, I finally got my referral to the local hospice this morning. I think my onco forgot to send the referral off, but a lovely lady radiographer got it sorted for me. So that is another appointment to add to the list.

Peter

Well, finally completed all the Re-AKT eligibility tests this morning. It has been a long and tortuous process and I feel exhausted from it all.

I'm told that I should know on Friday, or worst case Monday. whether I have been accepted on the trial or not. If I am accepted, I will start the treatment on Wednesday. If not, I am left with Cabazitaxel as the only alternative.

I do feel as though it is too late for me now, but I will go along with it and try to keep positive.

Peter

Thank you very much Lyn. Got my fingers crossed here!

Peter

Well, had a longish chat with the onco this morning. He told me that my heart scan showed that my ejection rate is 47% and it needs to be at least 50% for inclusion in the trial. (I believe that the normal rate is between 55 and 70%)

I also have a long QT time in my heartbeat which is a little on the dangerous side.

So he has made an urgent appointment for me to see a cardiologist and this will be Thursday next week. With the cardiologist support, the onco thinks he can get me enrolled on the trial despite the small failings. I should say that I am grateful to my onco for latching on to this matter and arranging for me to see the cardio so quickly.

It has been ten years since I last saw a cardiologist and I do have a serious heart condition, so maybe it is a good thing that I am now referred to one again.

We did briefly discuss prognosis, but I will skip over that for now. If anyone would like to discuss this with me, send me a PM. I'll just say I'll take what he offered!

Thanks to everyone for the good wishes. They are all appreciated very much.

I was out for a while with my wife and daughter today and when we returned home, there was a message on the answerphone. It was the cardiologists secretary ringing to confirm my appointment on Thursday at 9.30. I was impressed to get that message on a Saturday afternoon! They are certainly taking my case seriously!

I did forget to mention in my last post, that the rise in my PSA is slowing down. Having risen from 90 to 119 on the 25th July, on Tuesday last (14th August) it had further risen to 123. But that is such a small increase I feel encouraged. Can the RT reduce PSA? Maybe it was that!

Peter