Acronyms...they're everywhere. In the cancer world, there are tons of them. Here are a few I use on a regular basis: CBC, IV, CT, PO, NPO, NSCLC, IR, CA19-9, CEA, EGFR, ALK, ROS1, cMET, AHCC...the list goes on and on.
I recently learned of NED. I searched it, read about it, and long for it. No Evidence of Disease.
At my most recent appointment I asked my oncologist about NED. I was sadly told that I will never get there. Darn. NED really means NO evidence of disease and even if my lung tumor and tumors in my liver shrink away, the mets to my bones will always show up on imaging studies such as X-rays and CT scans. I understand that once there are bone changes, even if there isn't any active cancer, the lesions in the bones are there forever.
My oncologist, a very kind young man, gently reminded me that my disease is stable...not gone. I had to remind myself that I've always been told that there is no cure for me. Oftentimes, especially when I'm feeling good, I forget that.
I frequently find myself saying, "It could be worse." Having stable disease allows me to work, exercise, see family and friends and get stuff done around the house. It's not NED, but it's not bad.
For the last few years, I have been on a low dose blood pressure lowering medication. My dad had high blood pressure, so I wasn't surprised when I, too, was diagnosed. Monitoring blood pressure is simple. Whenever I think about it, I use the home BP monitoring device I bought at Walgreens which precisely measures my BP and heart rate. I write down the results on a table my internist gave me and once a year, he looks at it and makes dosing adjustments, if necessary. Unlike BP medications, it's not possible to know if chemotherapeutic agents are working without periodic imaging studies, such as CT scans, which can't be done at home. I go to the hospital and from the time I check-in until I walk out, it's a 2-hour appointment. I start getting nervous a few days before the tests until I hear the results.
The way it works is that we cancer patients dutifully get chemotherapy, either by IV infusion or, as in my case, orally for several weeks or a few months. Many of the drugs have significant side effects, but we keep taking them despite knowing if they are working or not. Then, after 2-3 rounds of an IV chemo or 3 months on an oral chemo, we get scanned to see what's happening on the inside.
Since the beginning, I've had four imaging sessions. The first was to make the diagnosis and the last three have been for medication monitoring. The second set were monitoring scans that told me that the initial IV chemos that I was on weren't working. The third set told me that the oral chemo I was switched to was working.
Earlier this week I had my latest CT scans which tell me that the tumors in my liver appear to be smaller and a little less numerous. It looks like the size of my liver is smaller than my last scan, suggesting that, overall, the tumors are smaller. The mets to my bones are about the same. So, although there was no dramatic reduction in my cancer, I'm relieved to report that, at best, I experienced some improvement and at worst, my disease is stable. These results, coupled with recent reassuring blood test results and the fact that I feel pretty good, indicate that I will continue what I'm doing, for now.
And...as usual...I'm keeping calm and carrying on.
