Go Ask Alice

Ten days ago I a got a call from a radiation oncologist who told me that I probably needed to have three weeks of whole brain radiation to treat lung cancer metastases that had spread to my noggin. He was very kind and meant well; I said thanks, but no thanks. I don't have lots of extra brain tissue to spare, and the thought of irradiating the good tissue along with the bad gave me serious pause. The next day, with the encouragement of the good folks I have come to know in the ROS1 cancer community, I called the clinic of Dr. Alice T.  Shaw, an internationally renowned ROS1 and ALK lung cancer expert at Massachusetts General Hospital in Boston. Dr. Shaw has been running clinical trials of targeted therapies that treat lung cancer brain mets and overcome resistance to older treatments, and I wanted to see if I could get in on one of those. To my surprise, I was able to get an appointment with her for the following week!

After meeting with Dr. Shaw and her partner Dr. Jessica Lin on Tuesday this week, we determined

that I should enter Dr. Shaw's trial for a drug called lorlatinib. It has shown some success in overcoming ROS1 crizotinib resistance caused by new mutations (mutation resistance to my old medicine, crizotinib, is probably why my disease is no longer stable), and it treats cancer metastases in the brain. The hope is that if the drug works for me, I won't need to have any radiation at all, that the brain mets will resolve, and the drug will keep the metastatic cancer in check for months or even years. So today, I got my new medicine! That's me looking ecstatic in my lucky Elvis Presley Crown Electric work shirt.

I'm gratefully and cautiously hopeful. There are a few things to keep in mind, though. This medicine is a treatment, not a cure. It works for some people, and not for others. If it does work, we don't know how effective it will be or for how long it will work. The last drug I was on, crizotinib, has worked for years for many patients, but it only worked for a few months in my case. One thing we hear over and over again in the cancer community is that "each person's cancer is different" and "each person responds differently to treatment." Cancer is a designer disease, but with new targeted and immunotherapies, researchers are developing designer treatments.

To get that designer treatment and to make sure it fits, I will have to go to Boston once a month for evaluation and to pick up the medicine. While the cost of the medication is covered by the pharmaceutical company as part of the trial, I will need to cover my own travel expenses. Thankfully, I have some resources. And if the trials are successful, the drug will become a commercially available standard of care, and eventually patients will be able to get it locally instead of having to travel to a trial site.

If it appears that the medicine is not working for me, or if it works and then stops working, or, if for some reason my body can't tolerate the drug, I will no longer be able to participate in the study and will have to seek another course of treatment.

So, those are the challenges. The hope part is more obvious. We hope the drug works. We hope I can stay on it for a very long time. We hope by the time this drug stops working, there will be another treatment, or, in the best of all possible worlds, even a cure.

And of course there's gratitude, especially for family and friends who have been sending financial resources, good wishes, and prayers my way. Also, I am grateful to have had the resources to make this trip to Boston and to meet scientists who are changing cancer treatment for the better, one genome at a time.

As a person of faith, I am also grateful for the masses offered, the novena's said, the prayer lists, the woodland rituals, the sage, and the beseechings to the saints. I believe in all of it. I believe in miracles. I also trust science. Together, they are awesome!