Daily Archives: May 27, 2021

Where have all the rabbits gone

There were some major highlights to today. A quick meet-up with Patty Watkins (and a photo-op with the white ribbon she brought me). Hugs from not one but both of my oncologists. Lunch with one of them (Alice) and coffee afterward with Brad Power, who is hosting the Linnea Olson hackathon. Brad and I had not met outside of zoom, and we were each surprised by how tall the other was (we’re all small online).

Less festive was the stark reality of where I’m at. In short, it’s getting increasingly less likely that any rabbits will be pulled out of hats.

On a plus side, that biospy is an enthusiastic go, as there is plenty of tumor to harvest now. By the end of next week or, at the latest, early the following week, I shall be back on the table.

I also signed a new protocol today, for the lorlatinib/TNO155 trial. TNO155 is a SHP2 inhibitor and paired with lorlatinib there may be a synergistic/anti tumor effect. It is very early in a phase I trial (I shall be the second participant at MGH). And, occular toxicity is a potential side effect. Given the blisters on my retinas while on binimetinib and lorlatinib, I could have been precluded but permission was given as long an eye exam pre-trial shows no abnormalities. And, of course, I shall be followed closely by a retinal specialist once enrolled.

So. There is that. An option. Today was a day for straight talk so I asked the what ifs. If I progress or experience side effects that would disqualify me from the trial, what else is there? Dr. Lin said we would peruse a portfolio of phase one trials at that point (clearing house). And, there are two potential fourth generation ALK inhibitors in the pipeline, but I may not fit the requirements for the first one or the timeline for the second (early 2022).

And then I moved the conversation to worst/best case scenario. If I don’t respond, six, seven months? She was slightly more optimistic, feeling I could make it through the holidays. And best case? Well, I’m not likely to reach seventy. Maybe not even sixty-five–and this is based on the irreversible damage in my lungs. However, if I have an opportunity to try and respond to multiple treatments, she felt a few more years were reasonable.

Just yesterday I was thinking about what it was like to simply assume that you would live another twenty years. And also about how long it had been since I had assumed/presumed anything of that sort.

That said, I have always felt that I had the potential to reverse what was happening to my body. Against the odds, but possible.

I no longer believe that to be true. This is based on my recent scans, but also how I am feeling. Exhausted. Often short of breath. And for the first time, in pain. Alice said this is either pleural effusion or tumor pressing on the adjacent nerves. Yesterday I had a five hour zoom meeting and I was out of tylenol. This girl poured some bourbon in her coffee cup. I shared this with Jess today and her only comment was at to whether or not it helped. And it did.

So, that’s the naked skinny. In all its unclothed veracity.

The ugly reality. That’s my most recent scan on the left—ten weeks ago on the right. My left lobe is disappearing.