Dear Family & Friends,
When I last wrote to you in late July, Stu was about to start a challenging month of August with chemo and radiation therapy. Many of you have been reaching out to see how he is doing so I thought now would be a good time for an update.
August started for Stu with a round of chemotherapy. That was followed by ten days of whole brain radiation and, finally, another round of chemotherapy. All within 15 days. Although the treatment was tiresome and grinding at times, Stu came through it like a trooper, once again! Besides fatigue, hair loss, a significant reduction of his sense of taste (with food, not style :-), and a bit of a "sunburn" on parts of his face from the radiation, the side effects were for the most part tolerable. The effects of radiation, however, can develop beyond treatment and appear several weeks or even months down the road, so we wait and watch.
Clinically, scans have shown that both the chemo and radiation did their jobs, dramatically reducing the cancer seen in the lungs in July and maintaining stability of the metastases in the brain. The purpose of these therapies was to provide a bridge from crizotinib--the drug he was on previously--to a new drug that has just been named lorlatinib.
Lorlatinib has just started phase 2 of clinical trials, and two weeks ago (Sep 16) we were told Stu had been accepted to the trial...great news! The protocol requires lots of screening (chest CT scan, head MRI, echocardiogram, bone scan, blood analysis, and EKG) to ensure there are no hidden risk factors. And some consent forms that Stu had to sign. He had all those tests done on Sep 21-22, with the goal of starting the trial on Thursday, Sep 24.
All the tests were normal except for a single elevated enzyme called amylase, produced in both the salivary glands and pancreas. If the increase was caused by the salivary glands that would not be an issue, however (big however), if the increase was due to the pancreas, it might indicate a problem with the pancreas and disqualify him from the trial (not good). His blood had to be redrawn and sent to the Mayo Clinic, which has one of the only labs with the ability to distinguish between salivary and pancreatic amylase. Because that process took 3 days we had to scrub the trial start on Sep 24.
On Friday, Sep 25, the results from the Mayo came in: the increase in the amylase enzyme was caused by the salivary glands. Hurray!! The trial start was rescheduled for Oct 1!
So we started the trial today...sort of. We are in a 7-day "pre-trial" period. We spent over 12 hours today at Dana-Farber where Stu received a single dose of lorlatinib this morning and was closely monitored the rest of the day. The monitoring was comprised of 9 blood draws and 9 EKGs over a 9-hour period. More blood draws are scheduled over the next 4 days, and, if he seems to be tolerating the drug, the trial will fully launch on Oct 8 with daily doses.
And then we wait. And hope.
We'll keep you posted. Thank you as always for checking in on us and for offering your help and support. Keep your positive energy flowing as we begin yet another leg of this journey.