And the Hits Just Keep on Coming

I consulted with a radiation oncologist on Friday about the metastases in my brain. He showed me the MRI image, and it looked like my grey brain has acquired a bunch of white freckles. Those are the mets. At the time, the rad onc was hopeful that he could treat those freckles (my good friend Ann calls them fuckles) with stereotactic radiosurgery (SRS), a therapy that targets just the mets and leaves the rest of the brain untouched. It can have some icky side effects, including some memory loss (think Eternal Sunshine of the Spotless Mind), but generally it is much safer and less damaging than an older technique, whole brain radiation therapy (WBR). The SRS technique is sometimes referred to as cyberknife or gamma knife, and it is effective if there are not too many spots to treat. How many is too many? Hard to say exactly, but generally once we move into the double digits in terms of the number of metastases, things can start to get dicey.

So, as I said, on Friday during our first consult, the rad onc was willing to consider SRS, even though he was counting sixteen or seventeen mets. He gave me a copy of the MRI image and told me to go home and visualize the white freckles turning back to grey. But, after examining the MRI more closely and consulting with another rad onc, he called on Monday to say that, as it turns out, not only are there a lot of mets, some of them are problematically located in a cluster. As he sees it, SRS is not going to be an option because of the location and number of mets. He recommended whole brain radiation therapy instead.

Well, those who know me know I've been doing my research. And what I've learned after chatting with other ROS1+ patient-advocates and reading a fair number of medical journal articles and summaries from oncology conferences is that the benefit of whole brain radiation (namely that it stops tumor growth) does not necessarily outweigh the potentially negative effects (serious cognitive decline, language loss, and memory loss). It can wreck quality of life, and it does not really improve overall survival. WBR is considered more of a last-ditch palliative effort. The thinking about WBR in the past has been like this: Late stage lung cancer patients don't live very long anyway; if they have brain mets, at least we can treat them for the pain and edema and other effects the brain mets cause so the patients will be more comfortable. Since the patients will die pretty soon anyway, cognitive loss is no big deal, and besides, the brain mets will cause cognitive loss anyway, and, well, whatever.

So, I'm not doing that.

What I am planning to do instead is to consult with a ROS1 cancer specialist who is heading up some clinical trials of a new generation of tyrosine kinase inhibitors that overcome crizotinib resistance (possibly caused by a new mutation) and treat brain metastases. I have an appointment in Boston for next week. I may not be a candidate for the trials, or even if I am and get in, that doesn't mean the medicine will work. But it makes a whole lot more sense to me to try that than to, ya know, get my WHOLE BRAIN IRRADIATED! I think the rad onc means well and wants to help, and he was very kind, but in encouraging me to consider WBR, he's following an old protocol. Based on my research and discussions with other ROS1+ patients and patient-advocates, I think I still have some better options, so I'm going to pursue them. F**k the fuckles.

And the Scans Say

Disease progression. That's what my scans from this week show...tumor growth in the lungs and metastases to the brain. Apparently my wonder drug is no longer working wonders. Given that the typical median time for remaining progression-free on crizotinib is 18 months, and given that I am acquainted with a number of ROS1+ patients through a Facebook support group who have gotten several years without progression on the drug, I am really disappointed that crizotinib has not worked so well for me, and that I've only gotten 6 months. Still, I am grateful for those months. I've been able to live a more or less normal life, return to work, and do fun things with family and friends. So, there's that.

Why isn't crizotinib working anymore? We don't know. But, when I had my genomic profile done back in November 2017, a number of other mutations were identified along with ROS1. It's possible one of those is causing the cancer to progress. The problem is, none of those mutations has been as well-studied as ROS1, so there aren't targeted treatments available for those specific mutations. And honestly, we just don't know if one of those mutations is actually causing the problem. It is possible that a different TKI (tyrosine kinase inhibitor like crizotinib) currently in clinical studies might be effective, but we just don't know. It's also possible a combination immunotherapy/chemotherapy treatment could stabilize the disease, but again, we don't know. Researchers are studying mechanisms of resistance, but there are so many factors that can contribute, which means getting answers as to how to address resistance is taking a good long while.

My oncologist's most pressing concerns at the moment are to have the half-dozen small new brain mets treated as quickly as possible and to figure out a new treatment plan overall. So, I have a consultation scheduled with a radiation oncologist for tomorrow, and if it seems like a good option, I'll likely get the brain tumors zapped. It's not a permanent solution, as the chance of recurrence is pretty high with just radiation alone, so we'll definitely need to add another kind of treatment to address that and the progression in my lungs. Dr. Peacock is meeting with her tumor board this morning to discuss my case, and we'll start strategizing after that. I'm leaning very strongly toward getting another consultation with a ROS1 expert  as well to learn more about some clinical trials for which I might qualify.

Honestly, this is not the news I expected to get, as I've been feeling quite well. I just wrapped up grading for my spring semester and had decided, for the first time ever, not to teach over the summer so that I could take time for other things I love to do. In fact, I've been feeling so well that my husband and I had been making tentative plans to do some ambitious traveling to visit friends and family. I was envisioning a summer of road trips and even a quick jaunt across the pond to visit friends in Holland. Now all that planning seems like hubris. We still might get to do some of those trips, but it will just depend on my treatment plan at this point. Stay tuned, and I'll keep you posted.