Wayward Tumor. What Do I Do Now?

Last updated: June 2019

It was almost exactly a year ago that I was faced with some hard decisions. After four years of complete stability, one tumor in my supraclavicular lymph node had decided to go rogue and quit responding to the immunotherapy I was on. I named it "Wayward Tumor."

From one clinical trial to another

When my oncologist told me that I was being taken off of the clinical trial because of tumor growth, I wasn't particularly worried. That's just how much confidence I had in him having something else for me to try.

And, he did. He told me about another trial that he thought would be a good fit. I signed up. It required that I get a new biopsy, which takes a little time. Unfortunately for me, by the time I had completed all of the preliminary requirements for trial participation, someone at another facility had filled the one remaining spot open to lung cancer patients.

That was an "oh no!" moment, for sure. Now what???

Not looking forward to chemo again

My oncologist, who is first a researcher, wasn't particularly concerned. He suggested that I just begin a regimen of Docetaxel for a few months, while I waited on another clinical trial to open up.

Oh, no!!! I had done chemo. I didn't want to do it again. And, I especially didn't want to do Docetaxel because a previous oncologist had told me it was harsher than my first line treatment, which had nearly kicked my butt. He'd also said that it wasn't as effective. So, hmmm. Why would that be a good option for me??

I'm not going to say that I will never do chemo again, because that is simply not true. If I absolutely must, I will. But, not until I have exhausted every other possibility!

Searching for other options

If my clinic didn't have an open trial right that moment, I thought, maybe some other hospital did. I spent some time on clinicaltrials.gov, trying to find something that sounded feasible for me. There was only one trial that was in close enough proximity to us that I could afford to pursue it. I wrote to the investigator, using the email address provided on the synopsis on the Web site. I was hopeful once more. Except, the email bounced back to me.

You know how your mind can do crazy things? Now that I knew Wayward Tumor was no longer responding to immunotherapy, I could just feel it growing larger and larger in my neck. Time was of the essence! I had no time to waste in deciding what I wanted to do. All I really knew was that I didn't want to do Docetaxel. My oncologist suggested that maybe I could just continue on with Opdivo while waiting on an upcoming trial to open since most of my tumor burden was responding. But, Wayward Tumor wasn't responding. It was growing, I could feel it! It was near my brain. No. Opdivo didn't seem like the best option at that point either.

(Let me stop and say that I do not know if the tumor was truly growing by leaps and bounds each day like it seemed to be to my crazed mind. I honestly think that my mind was just playing tricks on me, but we'll never know for sure!)

What about radiation?

I spent a great deal of time pondering what my next move should be. It finally occurred to me that, while I had not been a candidate for radiation when I was first diagnosed because of the extent and location of my tumors, Wayward Tumor was the only one that needed attention right now. And, it was right there on my neck. Easily accessible to radiation beams.

My medical oncologist wasn't particularly pleased with my new plan for action. But, I thought it was the perfect solution. We obliterate the tumor and I don't have to do Docetaxel. Seemed simple enough to me!

I had my first radiation treatment in August 2017 and I have not regretted that decision. I have had very few side effects from radiation and ... Wayward Tumor is gone!!

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