Late afternoon on Thursday, I received a euphoric call from my oncologist - I have been found to have a ROS1 mutation. This is really great news for me and my family! I haven’t blogged about ROS1 before because I didn’t think about it much. Early on in my cancer journey I was tested for tumor mutations and despite having a 50-80% chance of having a common mutation, I didn’t – which was unspeakably disappointing. ROS1 is RARE. One percent of people with the type of lung cancer I have will have a ROS1 mutation. The odds were so low that I hardly registered the possibility in my mind.
So…why am I so happy? Folks with ROS1 tumor mutations are treated with an oral medication called crizotinib (aka Xalkori). It’s a pill I will take twice a day. Crizotinib will, in simple terms, correct the mutation in my primary lung tumor AND the mets to my liver and bones. No more chemotherapy...for now. Like with anything in medicine, there are risks, benefits, and limitations with crizotinib. Here’s what I’ve read or been told so far:
ROS1 and the benefits of crizotinib are relatively new findings. The articles I’ve found are mostly from 2012. Because ROS1 patients are rare, there isn’t a large body medical literature about us. Of the small population of patients reported, all have responded well to crizotinib. All targeted therapies, and chemotherapies for that matter, will work for a while, but not forever. Some of the other targeted and chemotherapies have been used for several years now, on thousands of patients, so there’s good data about how well they work and for how long. For crizotinib use in ROS1 patients the data is scant. Some information can be extrapolated from other studies because crizotinib is used in patients with another tumor mutation that is similar to ROS1 – so side effects, etc. are known. I read a small study that concluded that this medication will probably not extend the length of my life, however, will vastly improve the quality of my life. This is huge! Since I won’t have to get docataxel, my hair will grow back and soon my immune system will return to normal so I won’t be immunocompromised. I will be able to get out of my house more and even travel. Plus, all the other bad side effects I had with docataxel I won’t have on this medication. When I was recovering from docataxel side effects, I watched Wynn, Nathan and Nina suffer with me. My relief is their relief too.
There are some side effects I need to be cautious of – I will have liver enzyme testing every other week and have to be aware of my breathing and lung functioning. Vision changes, nausea/vomiting and GI problems (diarrhea or constipation) can also occur. (Sheesh, as I write this I sure hope it’s better than the docataxel.)
So yesterday, I didn’t have to have chemotherapy. I only got my bone strengthening IV, which meant only 45 minutes in the chemo chair instead of 4 hours. I was hoping to start crizotinib yesterday, but my insurance company declined coverage until further investigation. As disappointed as I am, I can almost understand it….crizotinib costs $14,000/month! My doctor said not to worry and that it’s just a matter of going through the appeals process, which means he has to write a letter of medical necessity and present to the insurance company the recommendations of some national cancer policy board – which has only one treatment recommendation for patients like me, crizotinib.
The appeals process began a couple days ago so for now, I am keeping calm, carrying on and hoping to start my new medication on Monday.
(BTW, my eye is all better.)