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.
Linnea, I have a strong belief that if anyone can effect a positive outcome from all of this you can. I know your strength & focus, and you have the endless support of those who love and support you, like me. Keep fighting, as I know you will!👈🏼✊🏼❤️
Linnea, Thanks for sharing. Hugs, Wendy
On Thu, May 27, 2021 at 6:51 PM life and breath: outliving lung cancer wrote:
> linnea11 posted: ” 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, wh” >
Thank you for sharing the straight talk. Will have to sit with this for a bit. I think I’ll pour a dram of bourbon in my coffee, too, and you know I drink to your health. Much, much love to you. xo
Linnea, I’ve been following your blog for about a year. Your scan looks like the mirror image of mine. All my ‘issues’ are on the right side while yours are on the left. My right lung has all but disappeared as it has lost so much volume. The tech at my last scan thought I had a lobectomy! I have loculated pleural effusion, a persistant tumor in the hilum area. In other words, a hot mess. The big difference is you’ve been at this for a lot longer than my 6 years and that we are on different paths to try tame the beast.
Stay strong, you are an amazing woman.
Karen, my lobular mirror twin. I am sorry about the hot mess and yes, I’ve got one of my own. Best, best of luck to you.
Positive vibes are coming your way.
Linnea, this is tough. My heart is sending love, love, love, to you. I’m watching I heart music awards. Elton John says it all.
“How wonderful life is, with you in the world”
My Wife Donna sent me a link to your blog and this post regarding the MGH Loratinib/TN0155 trial, she was the first participant. Unfortunately we had to drop out as she had a plural efusion that made her very sick after only 8 days on the drug combo. What we were told by our oncologists is that it did not appear to be working for her, hoping you have better results as the MGH group thinks it has great promise.
We went on to Docetaxel, a chemo drug which has huge side effects (decreases hemoglobin, edema). We are now changing to a oombination of Loratinib and Trametinib. As you mention in your post, we are running out of rabbits. Good luck to you with the new trial. Feel free to contact me, Donna is not up to emailing.
John, I am sorry that it did not work for Donna and I hope the current treatment regimen is easier and more successful. I shall be sending you a PM as I would love to talk to you about TN0155. Thanks for offering.
I am sending you positive thoughts and prayers that things are going better for you. I just read about your battle with the pleural effusion and having it drained. We fought this battle and we had the pleux drain put in. Praying the TN0155 is working for you!