I am confused! Not exactly Earth-shattering news, huh? Anyway, I might, maybe, should withdraw what I said about ‘lamp stuff’ being available early 2018. I really am not sure.
My BIG retinologist (Dr. Carl Regillo, Wills Eye Hospital) told me he was thinking of starting me on lampalizumab at my next appointment, which is December, 2017. I heard it. I am going blind, not deaf. We know it would not be straight phase 3 because phase 3 enrollment closed sometime ago. I assumed phase 4 which would have opened it up to just about everyone everywhere. However, articles Lin has found – and I will go over – suggested that is not the case.
I went back to clinical trials.gov for some info. The id number for the study is this: NCT02247479. The study series started September, 2014. That would be phase 1. The date for final data collection for phase 3 is December, 2017 with data analysis and publication by December, 2018.
Now technically, if sites are going to roll immediately into a phase 3b, 3/4 or even a limited 4, I could be in line to have shots in December. Might have a lot to do with who my doctor is. Other people might have to wait. I might have to wait. No clue. [Lin/Linda: we have some clues since she wrote this that are at the end of the page.]
So, there it is. As far as I heard from my doctor, he was thinking about getting me on lampalizumab as early as December 2017. As far as the published articles are saying, we are looking at early 2019. My guess would be to split the difference, early fall, 2018 according to my ‘crystal ball’. Why, because Hoffmann-LaRoche, the parent company, has big bucks tied up in the research and is probably chomping at the bit to make an even bigger profit.
I am a cynic, so shoot me. I sort of think I was born cynical. Either way, my prediction is just that, a prediction. Don’t hold me to it.
All I can say right now is wait and see what happens. “Tune in in December for the next exciting installment of ‘Sue in the Land of the Visually Impaired!’ Will the Wizard try to slow her sight loss? Will he succeed? Will he try to help other citizens of the Land? Stay tuned here in December to find out!”
Sorry I assumed. We all know about assuming… and if you don’t it is ‘to assume will make an ass out of u and me’. Cute, huh? I probably just failed to factor in who my doctor is, access to all of the good stuff and all, because I know I heard him say it. I don’t hallucinate…all that much.
Which leaves me with exactly no space to go over the article Lin sent me. Don’t worry. It is a three-day holiday weekend. I will have lots of time to write other pages. What? Did you hear that? That was the sound of Lin groaning in Georgia…? Bye!
Lin/Linda here: Yes, I am groaning but not for the reason Sue originally thought. When I searched clinicaltrials.gov for the study that she referred to above, ie. NCT02247479, I came up with 2 studies, one with that number with the information that Sue shared above. The second one has the study number NCT02745119. The title of the second one is “Long-Term Safety of Lampalizumab Intravitreal (ITV) Injections in Participants With Geographic Atrophy (GA) Secondary to Age-Related Macular Degeneration (OMASPECT)” and it says it is phase 3 & is now recruiting and ending in October 2019. Maybe this is how she will be getting the ‘lamp stuff’??
written September 2nd, 2017