A Window Opens…

I had the first trial progress CT scan on Monday. I didn’t go into it feeling great, either physically or mentally–I’ve been having increasing pain in my chest, especially on the right side. As much as I tried to blame the pain on too much evening WoW, it was hard not to also acknowledge that it was probably also from the cancer.

I went in on Tuesday for treatment and the scan results, and I was pretty nervous. This was the first scan in months so it wouldn’t just tell us whether the treatments were making a difference: it would tell us how quickly the cancer was spreading. Dr. Ani gave me the mixed news: the CT didn’t seem that different from the previous one in July, but there was increasing fluid building up in the pleural lining of my right lung that obscured any view of the lesion they were tracking for trial progress. At first it looked like I couldn’t be treated that day, but it turned out I could be treated if they believed there was clinical benefit, so they went ahead. Dr. Ani also scheduled a PET scan for the following day to get a more clear look at the tracked lesion.

I was less nervous last night than I had been the night before the scan. To me, the good news from the CT scan was that the cancer hadn’t grown huge amounts. I figured if the cancer had spread enough that it was threatening my life, it would be clear on a CT scan. I also realized that the comparison scans were from July but I didn’t start treatment until mid-August. The cancer was growing on every scan in July (three in total) so it stood to reason it would have grown between the last scan in July and when treatments started in August.

So I went in for the PET scan today hoping the lesion was just a little larger, which I would consider to be stable. Stable cancer is a positive outcome on Opdivo. The goal is to turn a terminal illness into a chronic but treatable one.

A PET scan is a long process, especially when you’re waiting for results the same day. When Dr. Ani came in with the results a couple hours later, I was genuinely shocked. Two lymph nodes showed active cancer, one smaller than the previous scan and the other a bit larger (although it’s not clear whether that growth came before or after treatments started). Beyond that, there was no cancer at all. Every lesion and nodule in both lungs was… gone.

CTs give good information but a PET scan is generally considered definitive, especially for negative results. I’m still processing this news, but it’s unexpectedly good–especially since I’m in considerable pain in my chest. Now it looks like that pain is from the fluid rather than cancer. I’m going to have a procedure next week to have the fluid drained and tested.

So what does this mean? It means the trial drugs successfully enabled my immune system to fight off the cancer. It’s not clear whether the two remaining lymph nodes will respond–we’ll know more in the next scan in a few months. If they don’t and they’re the only cancer spots remaining, they can be treated separately (with radiation or surgery).

Opdivo usually doesn’t remain effective forever. Cancer mutates–mine mutated to become resistant to platinum chemo, which is why it came back so quickly after that first clear PET after chemo-radiation. Opdivo can work for months or years, or for an unknown period. It’s so new that some patients from the original trials are still on it after 3+ years. So I’ll be on epacadostat and Opdivo for as long as they keep working for me. If they stop working, the Houston trial is waiting–and I take my positive immune response to this trial as a positive sign for the Houston trial as well.

For me, this opens a window to the possibility that I might survive this for a little while.


Until this scan, we had no sense of how quickly the cancer was growing. I never expected to have the Opdivo work so well or so quickly. It’s a reminder that you can never guess how things will turn out. The important thing is to appreciate the time that you have. I’m incentivized now to come fully out of my holding pattern and get back to living.

1 Comment


Leave a Reply

  1. We are all holding on to the positives and glad you are getting back to living and enjoying fun things with Charlie. You are still in my prayers and I wish you comfort and peace.

    All my love,

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.