On July 12, 2017, I had another routine CT scan. I have them every three months. Nearly every one of them comes back with the good news that I am unremarkable; that all tumors are stable. Until I was diagnosed with lung cancer, I never once thought I would rejoice over being called unremarkable! My, how your perceptions change!
Anyway, I don't worry when I have scans. For one thing, I think worry is wasted effort. It doesn't and won't change anything, but it will rob me of the joy I have today. For another, I have had scan after endless scan that declared me unremarkable. Why would I worry?
Well, this scan was a little different. The radiologist reported, "Interval increase in size of a right supraclavicular node from 1.9 to 2.9 cm on axial image nine of series 2. The thyroid gland is unremarkable." In typical fashion, this didn't worry me in the least, despite the fact that the scan taken in March had also shown some growth of the same tumor.
Usually, I would see the doctor before I get the scan results, but this time was different. It just so happened that I had the results a week or so before my next doctor visit.
I mentioned the growth in passing to my husband, but again, we weren't particularly concerned. There had been a couple of times in the past where the lymph node swelled but then went back to its original size with the next scan. Since I am anything but an alarmist, I just assumed the Opdivo would do its thing or that I had a little infection enlarging the node or anything except that my cancer was growing again.
You're Off the Trial
I was looking forward to my next doctor visit. I was getting infusion #99 of Opdivo (nivolumab). I had been counting down for treatment #100. I don't know if anyone else has ever gotten 100 treatments of immunotherapy, but I suspect there are not many, if any. I had my sights on a centennial party in just two more weeks!!!
When my medical oncologist told me that he was pulling me off of the trial and that there would be no Opdivo infusion that day, I was dumbfounded. I couldn't be concerned about the reason behind being pulled off for my dismay at not making that milestone 100th treatment that I'd had my eyes on for months.
My medical care team all were concerned about me and the fact that my cancer was growing again. All I could think about was that I would not celebrate 100 Opdivo infusions. Tears came to my eyes. But, again, it wasn't because I had new challenges with my cancer, but because I wasn't going to make that milestone. (The mind is a funny thing sometimes, right?)
My doctor assured me that he was going to take care of me and that we would find another treatment. I guess one reason I never worry is that I trust that he will do just that. I'll let him be the one to worry about my treatment plan.
He had already come up with an alternative plan. He recommended that I enter into another trial, this time a Phase One. I spoke with a new researcher and prepared to have a required biopsy to ensure that I had enough PDL-1 proteins in my tumors to qualify for the trial.
Still, I wasn't worried. I wasn't concerned about the biopsy, entering a Phase 1 trial, or about the growing tumor. It was a bump in the road, but we go over lots of bumps and still reach our destinations safe and sound, right?
Soon after I had the biopsy, I received a call from my doctor. For the first time, the reality of what I was facing hit me. "My" spot in the trial had been filled before I could take it. There were no more spots available. My doctor recommended instead that I begin chemotherapy again while we waited for another trial to open up in a few months.
Forks in the Road
For the first time since learning that the tumor was active again, I cried. The chemo that was being recommended to me was Docetaxel. This was the same drug that my first oncologist said he would recommend if I chose not to go into a clinical trial. When telling me about it, he said that it wasn't as effective as the first line treatment and that it had more side effects.
I hadn't tolerated my first line treatment all that well (which is to say that I felt just horrid the first week of treatment with throwing up and terrible fatigue). The idea of going to something worse was definitely not enticing. It took me no time at all to decide to go into a clinical trial instead.
Now, four years later, the same drug is once more being recommended as the preferred line of treatment. No!!!
For four years, I hadn't had a new normal that you hear people talk about so much as I had just kept on living life to the fullest. I never felt like I had a new normal that was worse than my old normal! And, I was in no hurry to return to life on chemo.
I asked myself, again and again, "Will I lose my hair? Will I be as sick as I was before? Will I get neuropathy? Will it even work? Am I willing to go through this again?"
The more I thought about and fretted over the idea of returning to chemo, the more convinced I became that I needed to find an alternative plan. I simply wasn't willing to go back to life as it was when my cancer was first discovered.
Before my next doctor visit, I put my fingers to work ... I looked at clinicaltrial.gov and began looking for another trial for which I might qualify, even if it meant I would have to change doctors and medical facilities. This is an indication of how much I disliked the idea of returning to chemotherapy. I LOVE my doctor AND the facility. To change would be like tearing off my right arm.
I found several opportunities that sounded viable, including one in Houston that combined radiation with gene therapy and immunotherapy. I was interested enough in this study that I wrote to the researcher about the likelihood of my qualifying to participate. It would be a problem to get to it since I live in Dallas, but sometimes we just do what we have to do.
I sent my bio to the Houston researcher on the weekend before my next doctor appointment that was on Monday. When I went to the appointment, I had a list of things to discuss. My doctor was out of town, so my appointment was with my nurse practitioner (NP). I love and trust her as much as my doctor. What's more, I feel like she is not only my care provider but also my friend. I believe I can trust her to tell me if I am going down a path that makes no sense at all.
First on the agenda was the fact that I had decided against chemo. That option was just not going to fly with me. Quality of life is far more important to me than quantity. I wasn't willing to suffer through the side effects of Docetaxel in hopes of slowing down my tumor.
So, with that off of the table, where should we go?
First, my NP assured me that genetic testing of my tumors had previously been done. I didn't have any mutations that would call for targeted therapies.
Well then, I asked, why couldn't we just radiate the tumor? I understood that I wasn't a candidate for radiation nearly five years earlier because of the location of the tumors. But, now, I had only one tumor, now called Wayward Tumor, that was causing problems. It wasn't even in my lungs. It was easily accessible for radiation, in my mind, up near my collarbone.
With limited knowledge, but lots of bravado, I decided that I wanted SBRT radiation to the spot. Let's just annihilate the silly, troublesome tumor and be done with it. Stereotactic Body Radiation Therapy (SBRT) requires only a few, high-dose radiation treatments to the tumor. Sounds like a great plan, right? Sure beats traditional radiation, I thought. Traditional radiation treatment requires lots and lots of trips back and forth to the hospital. I live 45 minutes or so away from my treatment facility. I didn't want to make lots of trips.
After an hour or more of discussion, it was clear to my NP that I would not rest easy with any treatment decisions unless I had discussed radiation options with a radiation oncologist. She agreed to make a referral.
And so, a new learning experience was about to begin! Wayward Tumor was about to meet its match. But, not exactly the way I planned it.
(As a side note, my email to the Houston hospital bounced back to me. The researcher's inbox was full. After my discussion with my NP, I decided not to make contact with them at least until after I had met with the radiation oncologist here in Dallas.)
To be continued!!! I have lots more to tell and even some pictures to share in future posts.