Sorry I left you all hanging with the PET scan hinting at stuff in my brain. I had the follow up MRI, and unfortunately it did confirm five metastases in my brain. Last week was a blur of follow up appointments with the radiation oncologist and specialized MRIs and CT scans. The radiation oncologist recommended doing SRS, or targeted radiation, but said that if I had had even one more lesion, he would have recommended whole brain radiation. I was very happy we could do the targeted radiation and Peter and I felt much better about that than we did the whole brain option. No real science-based reasons, just the concern that it might affect my cognition more than targeted radiation, and negative cognitive effects would likely affect my quality of life more than most physical ones.
So. We were waiting all last week to hear when we might schedule the radiation. We kept waiting until today, when I got a call from the radiation oncologist. Very unfortunately, it turns out that they saw another very small tumor appear on the most recent scans, so targeted radiation is now off.
I’m scheduled to start whole brain radiation tomorrow, and I’m still trying to wrap my head around it all. It kind of sounded like the fatigue and nausea might be slightly less this route, but the real bummer is that I will lose all of my hair. Well, actually, the REAL bummer is that there is a 2/3 chance of this either shrinking the tumors or keeping them the same. The Keytruda can’t work on them because our body has this awesome blood-brain barrier that won’t let most chemicals cross into the brain. Great for avoiding brain poisoning, but not so good if you are trying to treat the brain with medicine.
Radiation will be every day for 2 full weeks (it’ll end up being more like 3 weeks because of timing, but 10 days, all in all). Side effects should kick in about a week after the treatment, and could last a while. It sounds like the doctor didn’t think I would have too many cognitive side effects, other than some fogginess. I still am a bit worried about that, but I don’t want it to interfere with our summer travel plans, if at all possible. There are so many things I still need to do, like to go San Francisco!
Please, please feel free to ramp up the thoughts and prayers that this stuff works. I would really like some good news at some point!