What to Do? A Big Treatment Decision

This was the hardest decision I'd had to make regarding my macular degeneration.

Over the previous 10 years, there had been other things to decide, but I'd usually had time to think about them. This time, I was being asked to make a very important decision on the spot. I was in a bit of shock and didn't know what to say about the proposition before me.

So, what had happened?

I knew what my RS was going to say

I was in the office of my retina specialist (RS) waiting to hear if my dry macular degeneration had turned to wet. It was an emergency appointment because of a change I had noticed on the Amsler Grid.

My doctor had his computer screen in front of him showing my optical coherence tomography (OCT) scan. When I saw the rather sad look on his face, I knew what he was going to say: "Yes, your macular degeneration has turned to the wet form."

All I wanted to know was...

He began to explain to me that I could have treatment for this in the form of an injection into my eye. I listened politely as he explained the treatment, but I already knew what this meant. The many stories and comments I've read on our website have given me insight into this procedure.

All I wanted to know at this stage was when I would be having the first injection, what medication I would be given, and how often I would have to come back.

As I was about to ask him these questions, he said to me, almost as an aside, "There is one other thing that we could try."

Trials of the port delivery system

My mind started racing at that stage, trying to get ahead of him. As far as I knew, there was nothing else that could be tried other than the injections. I wondered what he was going to suggest and couldn’t guess. Careful listening was called for now!

The doctor explained that he was trialling something called a port delivery system. This is a small appliance about the size of a grain of rice. It is surgically inserted into the eye. It comes pre-filled with an anti-VEGF medication which is slowly released into the eye. It can be refilled whilst still in place. This can be approximately every 6 months, and perhaps every 9 months eventually.¹

The port delivery system is available in other countries, but it's still in a trialing phase here in Australia.

A quick risk/benefit analysis

My RS explained some of the risks involved (and it seemed there were quite a few) and some of the benefits (not having to have regular injections was one benefit).

My mind was doing a rushed risk/benefit analysis. I started to get really anxious about having to make a decision on the spot when I knew I should be reading up a lot more on this procedure at home.

My specialist said the drug being used in this trial is Lucentis. This is the only anti-VEGF medication being delivered by this system. Luckily, I knew about Lucentis because my father had it. I understood it was a good drug, but it wasn’t new.

I asked my RS what drug he would use if I wasn’t in the trial, and he said probably Eylea. That just complicated matters. I wouldn’t be getting his drug of choice. He said, don’t worry, Lucentis will work!

Finally, a glimmer of hope

At that stage, my anxious face must have registered with him. He suggested a compromise. The trial required 3 successful shots of Lucentis delivered by injection first. He said, "Why don’t you have Lucentis today, don’t burn your bridges, and you will have a month to think about the trial?"

Finally, a glimmer of hope that I would have the time and opportunity to decide on the best path forward for me!

My head in a spin, I went around to the day surgery and had my first shot of Lucentis.

A huge treatment decision to make

On the way home, I knew I had a lot of work to do. Whatever my decision, I wanted it to be based on solid reasoning. Someone had to be in the trials, but was it to be me? I had a huge decision to make!