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.