I had a zoom meeting with Dr. Jessica Lin and Dr. Alice Shaw today to go over my scans. And…despite the fact that I am feeling more symptomatic, everything looks relatively unchanged from the previous scan six weeks ago.
However, Alice assured me, I know my own body and she takes my assessment seriously. Bottom line, this likely represents slow progression—too subtle for scans that are spaced six weeks apart.
The plan is to wait two weeks for another infusion of DS1062-a. Ideally I would have at least one more infusion after that, but once again after four or five weeks rather than three in the interest of side effect management.
Then we would reassess. Of course, I always want to know what my future options are. I am happy to report that there are two, a virtual wealth. First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, (G1202R, S1206F and G1269A) Alice feels my cancer is still primarily driven by ALK–the secondary mutations representing an effort to get around ALK inhibition. Hopefully a combo will cover enough bases.
I would characterize this as good news. I already knew my cancer was progressing but I am reassured that the progression is slow. And I like the sound of two options vs one. Better yet, should I have to begin with the MEK inhibitor/lorlatinib, it will not preclude my enrollment in the SHP2 trial.
So there you go. Business as usual. I still have cancer. But I also have options.
Difficult to believe that August is almost over. A friend of mine noted on twitter that the past eight months have felt both interminable and also fleeting. Perhaps it is the disconnect between what we previously considered reality and the space we now exist in–the year that just keeps on giving. And taking.
On Thursday I had my eighth dose of DS1062-a. Cycles seven and eight have been on schedule–three weeks apart. And because of that I am back to dealing with some side effects. My ninth dose will be pushed back by a week or two, which I am totally on board with.
Infusion kind of knocked me on my butt this time. Not day one, where thanks to the additional boost of steroids, I powered on through. I drove myself in at an insanely early hour (check in, 7 am) and didn’t get back home until almost twelve hours later. But I still managed to make myself dinner.
However yesterday morning I hit the wall. Couch surfing and then early to bed and late to rise. And I’m still wiped out.
I have never been adept at feeling poorly, as I have no affinity for inaction. Impatience is one of my prevailing qualities. By chance (or not?) my psychic energy is at an all time high right now (plans, big plans); kicking back is not on the roster.
Balance, pacing myself, making certain I don’t bonk are the takeaways in the days post infusion. That and a quiet gratitude that as strange as life now is, I’m here–experiencing it.
The bad, the ugly, but also the good.
Believe it or not, it is possible to become much less anxious about scans. So much so that you forget to share results.
It was a long, long day yesterday. I had a mini reaction to infusion and earned myself some additional drugs and more time at the Big House. After the requisite shower upon my return home, I made myself a gin and tonic. But I forgot the gin 🙂
So back to those results. Suffice it to say this will not be my last trial. The good news is that my biggest consolidations of tumor remain stable–and they are the areas that were making me symptomatic previously.
However, speaking to the heterogeneity of this disease, I have a series of small nodules that are enlarging, but slowly. Of greatest concern is an 11 mm left nodule that has increased in opacity. We will watch that one closely.
Curiously, some of what is reported is in my left lower lobe. I don’t have a left lower lobe. Evidently this is just an error and an addendum will be added to the report.
It underscores the importance of not only listening to one’s oncologist, but of also reading those radiology reports carefully. Some years back I had one that included an enlarged prostate. Now, never one to take anything for granted, I googled women and prostate glands. Turns out we have a bit of anatomy homologous to the male prostate, referred to as a Skene’s Gland. However, it is tiny and the prostate gland in my report was grossly enlarged.
There had been some cutting and pasting, with my chest CT attached to someone else’s abdominal report. The interesting thing is, it was never redacted from my records. My vestigial prostrate.
So. Not a perfect scan, but one that allows me to currently stay the course. Buying time. Day by day.