I thank each and every one of you for the comments as well as the messages I received. My appointment yesterday was late in the day, and after arriving home around seven, I had a cup of tea and opened some emails. Too tapped out to write, I drew a hot bath and then went straight to bed.
David was out of the house early, so after driving Peter to school, I sat down at the computer and thought I better get a blog up. Alice called (bless her) with some measurements and clarification and then I decided that what I really wanted to do was go back to bed. And I did.
Morning naps are the best. I awakened rested and with that pleasant sense of momentary disorientation…still a bit tangled in the brief dreams I’d just had and totally free of yesterday’s worries.
So. The reports from the scan are not a catastrophe. What was characterized in the previous scan as ‘These findings may represent mild increase in minimally invasive adenocarcinoma‘ is now ‘Increasing round glass opacities in the lateral portion of the left lower lobe and slight interval enlargement of a nodule adjacent to the right minor fissure are suspicious for progressive lung cancer.‘
Simply put, it is clear that I am developing resistance to LDK378. My cancer, that tricky devil, has figured out a way around yet another therapy. Â The largest single lesion, which is actually a patchy ground glass opacity, measured 2.5 cm at its longest point on 2/21/12 and was stable from previous reports. On 4/03/12, there was a slight increase to 2.8 cm. The latest report, dated 5/15/12, notes an increase to 3.5 cm.
Clinical trials utilize a tricky algorithm called RECIST to measure response. The technique is planar, rather than volumetric and is based on averages from several target lesions. BAC, which is characterized by hazy infiltrates rather than clearly delineated solid tumors, is not given to easy quantification.
As Alice explained this morning, for the purpose of the clinical trial, my tumors are only minimally increased in size. This is important, because after a certain degree of progression has occurred, a participant will likely be asked to leave the trial.
That’s the good news. The bad news is that the cows are out of the barn and although not yet stampeding, they are getting mighty restless.
So what’s next? Stay the course for the moment. Inquire as to whether or not Novartis would grant permission to return to a dose of 500 mg LDK once again; albeit with careful monitoring of liver enzymes. Monitor my physical symptoms closely; there is in fact a bit of wheezing in both lungs now.
We will also watch that 6 mm spot in my right lung with interest; perhaps it might become a candidate for biopsy whereas the ground glass opacities are fairly useless in that respect. A curious aspect of this particular recurrence is that although the cancer is cropping up in pretty much the same spot it has before, the appearance is slightly different; more haze and less opacity. And that 6 mm nodule appears to be an entirely different beast altogether, prompting me to ask Alice if it is possible that these two separate areas of apparent progression might be driven by individual (and newly acquired) mutations, each conferring their own mode of resistance. Intriguingly, but damnably frustrating as well, the answer is yes, that is possible.
In conclusion, I started on LDK back in September of 2011. Nine months and counting for an experimental cancer treatment is really quite good, and I knew when I signed on, that this would be a temporary fix. I hope to squeeze another few months out of it but if that’s not possible, there are options. Which in itself, is an amazing thing.
I told Alice yesterday that I’m planning on attending Peter’s graduation from high school. That will be three years from now. She thinks it could be doable.
That’s all I need to hear.
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life and breath: outliving lung cancer 