When I first started my combo of binimetinib and lorlatinib, I was referred to a retinal specialist, as MEK inhibitors can cause retinal problems. My exam showed some very mild retinal changes.
I had a routine follow up appointment today and I now have blisters on both retinas; yet considered mild retinopathy but concerning enough that I am off binimetinib and advised to go to the emergency room if I experience any visual changes.
I asked the retinal specialist why MEK inhibitors have this potential side effect and she said they felt it was an auto immune response. Well, I’ve got split fingertips, pustular acne, mouth sores, slowed speech, cloudy thinking, and some pretty troublesome neuropathy in addition to my current eye issues. Not to mention high cholesterol, elevated creatinine and low iron. Why can’t killing cancer be easier?
This is a tough spot to be in. I know that binimetinib and lorlatinib have shown efficacy against my cancer. But it is highly possible that the combined toxicity shall ultimately prove intolerable.
This is a good time to remind my audience that this is the explicit purpose of phase one trials: evaluating toxicity and establishing maximum tolerable dose. The actual experience can be as brutal as it sounds.
I have scans tomorrow, review on Monday. And I am certain a discussion as to how to proceed shall ensue.
My little adventure is drawing to a close. As soon as they get a read on last night’s brain MRI, I should be free to leave (just came in, all clear!).
In the world of healthcare, unremarkable is the most remarkable finding of all. And thus far results have been, as one practitioner put it ‘stone cold normal.’
The only diagnosis thus far was almost incidental. I reported some visual changes and so was seen by an ophthalmologist. I have exceptionally dry eyes (a side effect of my previous therapy) and some central serous chorioretinopathy, a potential side effect of binimetinib. Generally it resolves on its own but I will be followed by a retinal specialist as well. I shall also be wearing a portable heart monitor for two weeks, just on the off chance this was a cardiac event.
I also got the go ahead to drive myself back home. Sooooooo relieved. I am loathe to let go of any of my independence. In fact, yesterday I had to wait more than an hour for transport to come pick me up at Mass Eye and Ear. I asked a nurse if I could just walk back to Ellison and she took one look at me (in my johnnie and down jacket) and said ‘You’re not walking anywhere.’ My first thought was does she know who she’s talking to?—not in a I’m a celebrity sort of way but rather nobody tells me I can’t walk. Nobody. I had my car keys in the pocket of my jacket and for a fleeting moment I was tempted to stand up, walk out and drive straight home. Live free or die, y’all.
I calmed down. Transport came. I had chocolate ice cream for dessert. And today, I AM GOING HOME.