Last month I posted that we had traveled to Boston and my scans were stable once again. That is the best news one can hear when you’ve lived well with stage IV lung cancer (here, there, and not quite everywhere) for 8+ years and are approaching 7 years on the same TKI. We remain feeling blessed and we’re grateful to all(science, people, hope, and more) that make this possible.
On March 27 I saw Dr. Nohria, the oncology cardiologist I was referred to because of years of high cholesterol, caused by Lorlatinib (also known as lorbrena). After an ECG we went over my history and she decided I should have a different scan than I’ve had before – CT Angio Coronary Arteries. She thinks it is likely that there is radiation fibrosis as there is in my lung (and that side was zapped), and that coupled with the years of high cholesterol may have caused something that needs different treatment. But without seeing this scan, she cannot order the different medication (insurance will not cover it unless damage has already occurred). I couldn’t get the scan that day or the next (when I had all my other appointments), so we’re aiming for June 27 when I have my next day of scans. It is scheduled at Brigham, I just need to make sure with all the contrast, etc. that it is okay to add another scan in addition to the chest/abdomen/ pelvis CT and brain MRI I’ll have that day at Dana-Farber.
And then… the day after we returned home the NP on my care team called and said the radiologist had seen some “Ill-defined stranding/fluid in the left upper retroperitoneum” when reading the abdomen scan. Mee-Young Lee said it is probably not related to my cancer, but something to watch and recheck. Okay… so Wednesday, May 1 back we go to Boston for a scan and an appointment. If you’re interested in knowing more, research something called “fat stranding”. I still have no idea what it is or if we should be concerned. But, better safe than sorry.
Not to complain, just to say (for those interested, for the benefit of others going through something similar). Over the course of this many years the side effects of the radiation and the medication have a cumulative effect. They are not “stable”for all these years, but increasingly worsen. So far it’s all been tolerable and manageable. That’s just one of the joys of living well for 8+ years with stage IV lung cancer controlled by a TKI. I’ll take it. The other joys in our lives far outweigh the burden/difficulties. For example, this week our Heart Hero grandson turns 18! There’s an actual bridge between our two places of HOPE, Children’s Hospital Boston and Dana-Farber Cancer Institute. Dan and I are definitely feeling blessed and grateful! What joy this young man has brought to our lives as we’ve watched him grow and follow his passions.
Finding joy in the everyday every day. That’s me, I hope you can too. Love to all.
polepole ~ breathe 