My name's Michael. I've got a non-Hodgkin type called small lymphocytic lymphoma, SLL.
At the confirmatory meeting with the consultant,
I was also introduced to, what I now know as, the trial research nurse, based at the same hospital.
I was told that there was the potential of going onto a clinical trial,
although it was unclear at that stage if I would qualify.
I was given information about it and I was asked, when I came back the following week,
to indicate whether I was willing to participate and they would put my name forward.
I was given a lot of information, I think it was about a 25-page leaflet,
and information about what would happen to the trial information.
I read through it carefully, my wife did as well.
We discussed it and I'd been encouraged to ask any questions I wanted but I didn't need to.
In my own case, it seemed as though, if I was accepted on to the trial,
the very worst that would happen is I would have a fairly standard treatment, but there would be more blood tests,
more oversight, so the chances were that there'd be more control over what was happening to me,
and that might help with my treatment and recovery.
The alternative, if I got the trial drug, where I'd be selected by a computer,
might be that it would be more beneficial and less difficult to cope with,
and might work better for me long-term. To me it was a no-brainer.
In my case, it has been dead easy. All I have to do is take some tablets with a set amount of water,
which I do first thing when I wake up in the morning.
Every six months or so I'm asked to fill in questionnaires about health, lifestyle and expenses that I've had.
Other than that, I keep in touch with the research nurse who's involved and she often contacts me.
She's there at my regular appointments with my haematologist.
I've had to contact her if I need to take other medication.
I have a particular problem when it comes to things like dental treatment,
as I have to have some other medication.
One of the problems there was that I had to be told when I had to stop taking the trial drug,
and when I had to start it all again.
I have to check things like any medication I might need, even for colds or even my hay fever tablets,
but other than that is very easy to manage.
I don't know if it is a better experience than I would have had if I'd been on the normal treatment or not.
There will be a lot of information. You will be told what's going on.
Read the information you're given; make a list of questions; ask those questions;
make sure that you understand the answers; make sure that you know what it means, so for example,
on rereading the information I was given a year ago,
I had forgotten that there will be continual monitoring of me once a year, possibly for the rest of my life,
even when I've ceased taking the trial drug.
But that's not a problem,
in the same way as having the old blood test every few months isn't going to be a problem for me.
Again, it might be very difficult for somebody else.
What has been emphasised throughout, is that I can withdraw from the trial, if I want to, at any stage
and there may be clinical reasons for that to happen in any event.
The reality is that my experience has been as good as one can have, if you've got a problem like lymphoma.
It's all happened very quickly. I've had treatment and so far it seems to have worked.
I realised that the help that I'm getting is something that's been developed years ago,
in terms of the actual chemotherapy infusion that I had intravenously,
and this is a way of trying to help people for the future.
For anybody who would be interested but is a bit wary of it, this experience for me has been a good one
and I would thoroughly recommend it.
I understand there may be lots of people who, for their own reasons, wouldn't want to be part of a trial.