8 Month Update


I got some scans in September to see how I am doing after 6 months of chemotherapy. All in all the results were very good, and while I’m still going to be on chemotherapy for the foreseeable future, I’m cautiously optimistic.

My scan in June, at 3 months, had shown considerable shrinkage in the tumors in my lungs, as well as shrinkage and resolution of a lot of the involvement throughout my abdomen and lymph nodes. We were hopeful that on this scan there wouldn’t be any new spots, and that the previous progress against the cancer would continue. The CT showed only two spots on my lungs, and possible activity in my left adrenal gland, all small enough that my oncologist wasn’t sure that they represented active disease. As before the mass on my pancreas wasn’t visible on the CT, but as we learned before didn’t mean it wasn’t still there. My blood markers are still quite high, though much lower than they were at the start, so we know that there is active disease even if it is too small to show up on the CT.

Since the CT I’ve sought a couple of additional second opinions, which I am glad my oncologist encourages, just to get more eyes on the problem. Based on all of the feedback we decided to get a repeat Endoscopic Ultrasound and a repeat PET to get imaging of the pancreas and a view into the metabolic activity remaining. The endoscopic ultrasound found no evidence remaining of the tumor on the pancreas, and everything else was clear. It was really unbelievable news.

The PET found only faint activity in my left lung and left adrenal gland, but faint enough that they can’t be sure that it represents active disease. My oncologist walked me through the before and after scans, where the before images look like a wildfire map, with large conflagrations and smaller spot fires all with an ominous red glow behind. The current images are mostly just black in the lungs now, with some scar tissue remaining. It’s good news and bad news, because I don’t fit neatly into any bucket, and clinical trials generally require “measurable” disease, but we know the cancer is still active, because my cancer markers are still high, just not at thresholds where imaging can pick it up.

My case is currently being reviewed by the surgical board at our local research hospital, and has been reviewed by radiation oncology at my cancer center and MD Anderson Huston, who don’t recommend radiation since it could cause damage and potentially have no benefit. The sites with slight hypermetabolic activity on the PET could be still active, or I could have micrometastases elsewhere that are not being seen. We have such amazing technology to track and visualize cancer, but at times like this the limitations are clear. If I have a recurrence or progression at any of the known sites there are several trials I can join locally, but obviously I’d prefer that not happen.

For now the plan is to continue chemo indefinitely. I finished 12 rounds of NALIRIFOX in September, which includes oxaliplatin, a platinum based chemo drug that causes neuropathy. I have some nerve damage from the treatment, and some of my blood counts and liver enzymes were abnormal on blood draws, so we’ve dropped that drug for now to give my body time to recover with the hope that it continues to decrease my cancer markers. If it doesn’t, we’ll have to come up with a new plan, but my bloodwork is already a lot better and my nerve issues are improving.


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