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.
What great news! And congratulations. 😀
I’m so happy to hear this news!!!!
This is so wonderful! I’m on my 9th month on Xalkori, and have scans next week. I hope you stay progression free for many years!
This is so great….All the best.
I am so happy to hear this. So, so, so, so. Thanks for updating us.
Hi Beth, What wonderful news. Keep it up. A simple diet that I came up with works for me. I call an SDS diet: No Seconds, no Deserts and no Snacks. I’ve lost ten pounds in the last six weeks, and a goal of another ten pounds. Good balanced meals and exercise helps. Wish you continued progress, and know there’s lots of people praying for you. L
Beth, I am so very happy to hear your good news. Mazel tov on your successful defense, your scan results and your thriving life!
This is the first time I’ve commented, though I have been reading and eagerly awaiting your new posts since the middle of June when a friend referred me to your blog. I found out in early June that I have stage 3 lung cancer, with mets in my thoracic lymph nodes. My prognosis and treatment regime are different from yours, but I have found many of your posts to be applicable and extremely helpful.
On your advice I have been collecting and maintaining my own copy of my medical records; chosen a somewhat more invasive biopsy procedure to make sure enough tissue was collected for all the path and genetic studies currently available; and called ahead for anti-emetics and EMLA cream before my first chemo.
Among the things that contribute to my thriving with lung cancer is taking action on my own behalf to the greatest degree possible. Your blog has provided me with ideas for where I might take action, and, as with the EMLA cream, taking these opportunities to care for myself reduces my pain and increases my agency and overall experience of wellbeing.
Keep writing, please, whenever you have something to share. And thank you, thank you, thank you, for all you have shared so far.
This is great news and I am happy to read about your way to a clean bill of health. Hope everything is doing well with you. Cheers!