JuneK Posted Friday at 08:38 PM Share Posted Friday at 08:38 PM Struggling mightily here with some bad news from my recent PET scan. I think it’s all the harder because our hopes have been so high recently. After chemo & nivolumab last year, an upper right lobectomy in December, and continued nivolumab every 4 weeks since, things seemed to be going well. My surgery recovery was quite difficult, much more painful & drawn out than I expected, due to what they think is extensive nerve damage. I still have major discomfort from it, but have been doing my best to learn to deal with it. Had a CT scan in late February where nothing abnormal was noted other than a small pleural effusion. Went into this PET scan a couple of weeks ago with high hopes. Blam, now the bad news. A completely new area of cancer, now on my left hip. Even worse, there are “areas of concern” in my right chest. Nothing definitive, but some areas of SUV uptake between 3 & 4, which they say could possibly be leftover inflammation from the surgery, but taking into account the new mets to the hip, most likely the start of new progression. I am beyond devastated. I felt like the immunotherapy was my one chance for a miracle, and now it seems to be failing. Even if not a cure, I had hoped to be able to get a few good years out of it like so many do. I have no targetable mutations to fall back on. Really struggling to fight off the despair I am feeling. Of course my oncologist says not to give up hope. The tumor board reviewed my case on Tuesday & recommends to radiate the hip lesion as sometimes there can be “one-off” breakthrough mets. Because of the small chance that the other readings could be inflammation they want to wait another few weeks, then do another scan. They want to be absolutely sure before abandoning the Opdivo. But if there is truly more growth it will mean discontinuing Opdivo, then on to more chemo, a different kind this time. In the meantime I have an appointment with Emory Winship Cancer Institute next Friday for a second opinion. My oncologist also suggested we start researching clinical trials. I've waited a while to post this, in hopes that I could rally some courage and be more upbeat, but that hasn't worked out, lol. I don't even know what advice I am seeking. Searching for courage but having a harder time finding it this time around. 😔 Quote Link to comment Share on other sites More sharing options...
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