Unfortunately hurry up and wait can play an overarching role in the management of cancer. There are even rooms for this–Waiting Rooms. And I have spent far too much of my precious time in such.
At the moment my waiting is of a different sort. The expectation was that I should be starting on TPX-0131 this week. However, at my appointment last Thursday, I learned that lead in dose has been pushed back by another week. FDA and the IRB have both signed off but this holdup is in manufacturing and labelling. Whatever that means. At this stage, I am nervous that this won’t be the last delay and–between you and me–it’s getting more and more difficult to hold my breath in the interim.
What did happen last Thursday is that I started back on the SHP2 inhibitor TNO155.
Per my oncologist’s advice, I shall not be getting a pleurodesis, but rather a (déjà vu!) pleur-x catheter. Financial assistance has been applied for and the pulmonologist’s team spoken to. That will take place Thursday morning, after which a visiting nurse shall make two visits both to drain the catheter but also to teach someone else how to do so–it is not possible to do alone.
And then, hopefully, a week later I shall be taking a fourth generation ALK inhibitor.
It is early days–I shall be one of the first–but this is the best of my current options. One on which I am pinning a whole lot of hope.
In the meantime, I am laying low. Continuing to tie up ends with my committee of personal assistants (bless each of you) and also spending time with my two kids who live in Boston. Today we went through family photos and despite their trepidation (what all this preparation represents), had a wonderful day.
And I, of course, hope that there shall be many more.
Wonderful days.
xo
life and breath: outliving lung cancer 
I have every belief there will be many more!❤️✊🏽
Linnea, you will have more days sharing great memories!! The way you have chosen to communicate with your family, friends, doctors and researchers, during your 19 years of Stage 4 lung cancer, is worth so much more, than I can find words to describe. If we could clone you, without lung cancer, we would. We love you so much! xoxo
Bless you, your family and your team. The emotional cost of each delay is enormous and painful. I hear you.
My dearest lung mirror twin, I too have to experience the “waiting” game as my newest course of chemo which was scheduled to start a week ago has been delayed until today. One can’t help but wonder how much ground the cancer gains while we sit around, waiting.
As for the pleurex catheter, I just want to say that if you enjoy swimming or taking baths, best to do that before Thursday. The hardest part when I had my pleurex catheter (for all of 2 weeks before I had it removed) was figuring out how to keep it dry while showering.
I also spent the weekend with my beautiful daughter who lives in NY (I am in Florida). It was such a blessing to have those 3 days with her, sharing laughs and memories. Glad you got to spend time with your kids.
Good luck this week but as I’ve said before YOU GOT THIS!