Yesterday, Stuart and I went to Dana-Farber for his planned chemotherapy infusion, three weeks since the last. In addition, Stu was scheduled to have a brain MRI; a CT scan of his chest, abdomen and pelvis; and bloodwork. He was a bit anxious because over the past week or so he’s been feeling "draggy" and coughing a bit more. He’s been unable to increase his bike mileage while training for the Pan Mass Challenge (PMC) and was feeling frustrated. He was starting to wonder if this was a sign he was anemic again or, more troubling, a recurrence of the cancer. Yesterday’s appointment ended the guessing.
The brain MRI was remarkably clean. The oncology radiologist had to go back to an old MRI to double check where the disease had been, just to make sure he hadn't overlooked something. Nothing could be seen. That's the good news....
Unfortunately, the CT scan showed progression of the cancer, once again, in the lower right lung. Although the progression is just starting (and there is some minimal pleural effusion), it was clearly there.
So, what's next? There is a new drug from a Japanese company (Daichi-Sankyo) designed for the kind of mutation that Stu has (ROS1). It’s currently in phase 1 trial, which means it’s the first time the drug is being tested in humans and they are working to find the best dose. Stuart could not join the trial back in March (after his surgery) because he was on chemo and it was working. He could only join the trial if he progressed while on the chemo. Now that he is showing progression he can join.
He had most of the prerequisite baseline scans and bloodwork done yesterday (they can use the brain MRI and CT scans from his regular visit). They drew a little extra blood and the last required baseline is an extensive eye exam, which he had this morning at the Joslin. According to our oncologist, there are some potential visual side effects that may occur from the trial drug such as flashing lights and floaters, so they need a baseline to begin. Finally, since Stu has been off chemo for three weeks (which covers the wash out period required by the trial), and we cancelled yesterday’s infusion, he will hopefully be accepted into the trial and begin next week.
Although this is a phase 1 trial, they are far enough along that they pretty much have figured out the dosing. Only about 30 people worldwide are currently in the trial. For the curious or science-oriented among you, the drug is currently known as DS-6051b if you want to Google it. Not much information or data is available at this time, however, as it's such a new drug with a small population of patients.
We will have long 8- to 10-hour Dana-Farber days once again in the beginning of this treatment which will spread out and shorten over the 9-week startup period.
Once again we thank you for your support and help when needed. We appreciate your calls, texts, emails, cards etc., even if we don't always respond. And as the music starts and we begin to turn, maybe this time Stu will grab the golden ring!
P.S. – I wrote this myself and checked for plagiarism 😉
P.P.S. – Stu has not given up on riding in the PMC. (Does that really surprise anyone?) He’s contemplating doing a shorter route than the 160 miles he was hoping to do, but it depends on how quickly he can begin the new trial, his response, and the side effects. Stay tuned…