I just had another beautiful CT scan last week, marking my eleventh month of progression-free survival on crizotinib (Xalkori). The doctor said that results from the study are starting to suggest that people with the ROS1 mutation may actually do even better on crizotinib than people with the ALK mutation, for whom the drug was designed. Our median progression-free survival on crizotinib may be twice as long, or even more.
Progression-free survival is just what it sounds like: the amount of time a patient is able to survive without the cancer progressing, or growing. It’s not the same as overall survival, which is the length of life after diagnosis. Right now my overall survival is about 19 months.
I am remarkably well. I am down to just two prescription medications that I take on a daily basis: crizotinib, and Dexilant for reflux. I also take vitamins and some Chinese herbs from my acupuncturist.
I’ve been working out with weights twice a week at the campus gym. I just tried the first workout of the Couch-to-5K running program this morning, and it felt very good to jog and walk outdoors. There’s a fabulous big park near my house, with trails that wind through woods and along meadows full of tall grasses and wildflowers.
This spring and summer I’ve been the matron of honor in my sister’s wedding, successfully defended my dissertation proposal, and taken a two-week research trip to an archive in Indianapolis. You really wouldn’t know I had cancer, let alone Stage IV lung cancer.
I have a few symptoms and side effects, but they are fairly tolerable. My digestive system is sensitive, and if I eat certain foods or drink too much coffee I can easily get diarrhea. Over the past few months I’ve also had a couple of very random episodes of vomiting. They seem to be triggered by nothing in particular, and they go as soon as they come. I’ve started carrying my anti-emetics (Zofran and Compazine) with me again. Finally, I’ve gained some weight, and it seems to be pretty stubborn. With exercise and calorie counting I’m able to maintain weight, but not really lose any. (All the doctors and nurses say not to worry about losing weight, but I’m over 200 lbs and really wish I could be a little under.)
I am starting to get my head around the idea that I might really be able to stick around for years to come.