As I ended my last update, we were hoping that Stu would finally grab the “golden ring” and have that long lasting cancer treatment we had been so longing for. As things tend to go in the cancer world, we ended up on a different ride, the roller coaster, once again.
Thursday, July 28th was the day Stuart was to begin the Daiichi Sankyo trial for the drug currently designated as DS-6051b. With his cancer just starting to progress again, he was anxious but eager and cautiously optimistic. He was hoping to have the same quick response to this new targeted pill as he had to the previous two TKIs*, Crizotinib and Lorlatinib. He had done all the preliminary testing, including blood workups, urinalysis, contrast CT scan and a brain MRI when, on the evening of Tuesday, July 26th, Stuart was denied participation in the trial. Devastating news! In order to qualify for this trial (and most trials) there needs to be a way to measure the initial “tumor “size so that any changes in the tumor while on the drug, could be compared. Stuart, as you may recall, did not have a solid tumor. He had ground glass opacity (GGO) which presented simply as cloudiness in the lungs.
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....
As they say, "No news is good news," although in Stu's case, some perceive silence with concern. We've received numerous queries about his condition and I'm happy to say that the silence is indeed good news! Nevertheless, it's been a few months since the last update so I thought now was a good time to get one out.
In the last update, I spoke about Stu's surgery and the beginning of his recovery. At the time, he was in pretty rough shape. There was some pain from surgery, but more challenging were the dual effects of progressing cancer and the impact of surgery on his breathing. They combined to knock his blood oxygen level down to the low- to mid-80s (95 or greater is considered normal). The surgical team wanted to keep Stu in the hospital with such low oxygen levels, but he was insistent that he'd recover more quickly at home.
Update, 3/17: We met today with the oncologists just before Stu had his chemo infusion. Unfortunately, all the tissue and fluid harvested during the biopsy was required for the genetic testing so Stuart Little will have to wait until there's another opportunity to collect some tumor cells. The good news is the chemo infusion went well and Stu is already feeling a bit better. More to come in a few weeks...
Last Friday Stu had his surgical lung biopsy. The procedure went well and there were enough cancer cells in the pieces of lung that were removed to enable genetic sequencing. That will take about three weeks and, hopefully, will provide insights on how his cancer got around the previous two therapies, and what may make the most sense for his next course of treatment.
Another activity the oncologists are pursuing is to create a mouse model of Stu’s cancer. In this still quite new process, a mouse with a suppressed immune system is injected with Stu’s cancer cells. Once the cancer cells “take,” the oncologists can then work on developing treatments that successfully inhibit progression of the mouse’s cancer, with the hope that they may do the same for Stu. This avenue is more of a long shot than the genetic sequencing, but there is no risk in opening multiple lines of inquiry. The same reasoning will have them starting a cell line which will allow them to test various compounds against the cancer cells in the laboratory.
Dear Friends and Family,
It has been a while since I last updated you on Stuart’s health and progress. Up until a few weeks ago there was very little to report as the trial drug was working very well and all his scans were clear. Stuart was feeling great and life had become "quasi-normal” again.
Three weeks ago (February 10), Stuart’s brain MRI was clear but his chest CT scan showed some cloudiness in the right lung, a possible sign that his cancer was beginning to rear its ugly head again. Since he had just gotten over a cold, the doctors weren’t sure whether they were seeing cancer or signs of a lingering virus. As Stu had absolutely no clinical symptoms and was feeling great, we agreed to wait until the next scheduled CT scan (March 23) and compare the two. If in fact it was viral, it should be diminished, if not gone, in the next scan.
Dear Family and Friends,
I thought Thanksgiving might be a good time to share some good news with all of you and add just a few more reasons to everyone’s “what I am thankful for” list.
On October 1st Stu started on the drug lorlatinib as part of a Phase 2 clinical study. The first three-week cycle included spending 10-hour Thursdays at Dana-Farber during which Stu received hourly blood draws and 9 EKGs after being dosed with the new drug. The next three Thursdays were also “Dana Days” but alternated between five and ten hours. Stu was definitely feeling better, presumably from the new drug, but we wouldn’t know for sure until the next scans. Those happened at the end of this six-week period. On November 18, Stuart had a follow up brain MRI and CT scan along with an echocardiogram. On Thursday, November 19, we met with the oncologists.
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.
Dear family & friends,
Thank you for all of your inquiries about and expressions of support for Stuart. Although many of you have reached out to us directly, many others have chosen to give us more space. We welcome and appreciate both considerations. Although I hesitated sending out another group update for fear our lives were turning into the “Truman Show,” I realize that it is probably easier for everyone if I do.
As you may know, Stu’s cancer reappeared in a scan in May, and showed further progression in follow up scans in June and again in July. We knew the crizotinib was losing its effectiveness and that we’d have to switch to a new therapy. However, our hope was to stick with the 2 pills/day of crizotinib until the clinical trial of a new, more powerful targeted therapy designed for crizotinib-resistant patients becomes available in early August. However, with his symptoms progressing (mostly fatigue, breathlessness, and coughing) and the trial date pushed back to the end of August, the oncologists decided that we could no longer wait for the clinical trial to begin. They suggested chemotherapy as an intervening therapy to get us there.
It's been about seven months since I last updated you on Stuart's health. Since then everything had been very quiet and Stu felt perfectly normal. He had his 'no evidence of disease' or NED status from a scan in November and again in February. He had been golfing, training for the Pan Mass Challenge, and doing consulting work. At his routine scan in May there was some cloudiness in the lower left lung which the doctors felt could be the result of a nasty cold he had in April, and they scheduled a follow-up scan in mid-July just to be sure.
Since many people have started asking again how Stuart is doing, I thought I would send out another update, particularly since the news is very good! Yesterday Stuart had another chest CT scan. The doctor told us that the scan looked “Perfectly normal” and “There was no sign of effing cancer!” She said, “If I showed your scan to another doctor who didn’t know your situation, he/she wouldn’t see a thing and would report normal findings.” Stuart was given the official NED status (No Evidence of Disease) and told he was in “complete remission.” Woot woot, high five and fist bumps all around!