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.
So they sent him home with a truckload of oxygen gear. Although the surgical team initially wanted him to wait six weeks (really?!?) before starting any treatment, Stu insisted that was crazy and sure enough, six days later, he started his chemo regimen of carboplatin and pemetrexed.
About a week later he was already feeling somewhat better and his blood oxygen was back up in the low-90s. He had the oxygen concentrator and all the tanks taken out of our home which also made him feel a bit better.
The genetic sequencing results from the biopsy came back in early April and showed a specific mutation (if you're interested, G2032R) that will help identify the best therapies after chemo. It also showed significant presence of the PD-L1 protein, which may bode well for the effectiveness of immunotherapy down the road (although the science isn't settled on that).
The next scans, on April 28, showed marked improvement (over 90% response!) over the March 23 scans, a sure sign that the chemo was working. Yesterday, June 9, scans showed continued improvement, with only a small area remaining in his right lung. Stu feels so much better that it reminded him of a scene from Back to the Future, which he included below (I don't know how).
So what's next? The chemo doublet he just had was his 5th round (7th if you include the two infusions last summer while waiting for the lorlatinib clinical trial to begin). Typically, patients will receive no more than six carboplatin infusions because of accumulating toxicity, but Stu's side effects have been very limited (fatigue in days 3-5 after infusions) and he is showing no signs of toxicity (other than the ones I've seen in him for most of the last 30+ years :-). They'll give him one more round of the doublet at his next infusion and then switch to only pemetrexed for maintenance every 3 weeks, for as long as it continues to work.
Stu's white blood cell count was a bit low, normal for a chemo patient, so they want him to be pretty careful about getting sick and to notify them immediately if he gets a fever so that they can try to knock it down quickly with antibiotics and avoid infection.
Beyond the chemo, whenever it stops working, there are a few interesting drugs, some approved, some in clinical trial, and others still in the lab. We're hopeful that list of options continues to grow and become even more effective as the science marches forward at ever increasing pace.
Finally, as you may know, Stu has committed, again, to ride the Pan Mass Challenge in August, a two-day 160+ mile ride to raise money for research at the Dana-Farber Cancer Institute. He registered last year but his cancer decided to progress in June so he was in no shape to ride. Last year, the PMC raised $45 million for Dana-Farber and was the single largest fundraising event in the country! This year, they hope to raise even more. Stu is asking for help by donating any amount, large or small, to his campaign. Just click the logo below and it will take you to his PMC page. He is more determined than ever to do it this year and welcomes your support! Go Stu!!!
My apologies for the long break from the last update. Please know that you can always ask or check in, and, needless to say, we really appreciate your interest and concern.