Mets Day 1168: Tenth Opdivo infusion & "complete response"

Today I met with Dr. Hahn prior to getting my tenth infusion of nivolumab. We reviewed the CT scans, and he pulled up the images and showed me the nodes in my neck that three months ago had been more than three times larger.  Dr. Hahn said that the target nodes were now about the same size as regular nodes.  The only reason they were paying any attention to them is because the doctors knew that they used to be the site of metastatic tumors.  If a radiologist unfamiliar with my history and without access to my prior scans looked at my scans of last week, the radiologist likely would not conclude that there was evidence of metastatic disease.  Dr. Hahn added that there was no evidence of carcinoma anywhere else in my body. In his view, I have had a complete response as a result of my nivolumab treatments. Woo hoo!

Because we know that the nodes were the site of tumor cells, however, Dr. Hahn is not willing to say that there is "no evidence of disease", or NED. He does not know whether there is any active cancer left in those nodes. He said it was possible that the tumors are completely gone, or that any residue is inert. But it is also possible that the cancer is still present, but just not growing right now. And of course my cancer is systemic, and not confined to those lymph nodes that were actively growing. The hope is that the nivolumab has acted upon the cancer where ever it is, but it's too soon to say that it is eradicated. Only time will tell whether it truly is gone, or whether it is still lurking and searching for a way to start growing again.

At the Spring 2015 meeting of the American Association for Cancer Research (AACR), some papers were presented that noted that many cancers contained multiple mutations, yet most tumors were a result of the active growth of a single mutation. The researchers theorized that cancer might be viewed as a line of mutations, with the dominant mutation growing fastest, and the other mutations biding their time. If a therapy such as chemo or immunotherapy kills the dominant mutation, a less dominant mutation might kick in and start growing. In my case, it may be that my two different types of platinum-based chemo could have suppressed the mutation that caused my original tumors in my bladder. The PD-L1 mutation may then have kicked in, growing in my lymph nodes in my neck. The nivolumab appears to have acted on those tumors, prompting today's good news of a complete response.  The questions now are (1) whether the effect of the nivolumab on the PD-L1 mutated tumors is permanent, or temporary, and (2) whether another one of my mutations will kick in and start growing. Like I said, only time will tell.

For now, I'm going to bask in the sun of the pronouncement a complete response. I'm so grateful for this news. I believe it is an answer to the prayers of so many. Most prayers are answered in the form of the actions of other people, and I'm thankful for the actions of the doctors and other health care professionals who have made possible my access to this newly developed drug. I'll continue with the nivolumab infusions, as data from the metastatic melanoma clinical trials suggests that continuing with the drug increases the odds that the tumors will not reappear.

After Dr. Hahn and I finished celebrating his pronouncement of a complete response (which took about a half second), I asked him about the radiologist's observation that my thyroid cyst seemed to be slowly increasing in size. I told him how that cyst had been noted on my scans for quite a while, and that everyone had ignored it. He said that it was highly unlikely to be cancerous, and even less likely that it was related to my metastatic bladder cancer.  But he said that I should have an ultrasound and biopsy done to make sure. He'll put in the orders and I'll schedule that up in the next month or two.

I also asked him about the small pulmonary cysts noted in the chest scan, and whether  they were related to my pulmonary embolisms of last fall.  He said that they were not, but were instead residual scar tissue from old viral infections. The radiologist felt obligated to comment on them, but they were nothing to worry about. My tenth infusion of nivolmab was unmarkable - my port is working just fine, and everything went like clockwork (albeit a slow clock).

I've decided that I'm going to drop the "Mets Day xxxx" count from the title of my blog posts.  I know that I've still got mets BC, but I'm hoping that I can now focus on getting to five years with no evidence of disease. If and when I hit that mark in the summer of 2020, then perhaps I can consider myself to be cured. That's a long shot, but it's nice to think about. Maybe I'll replace the mets day count with "CR", or maybe I'll just drop the whole counting thing.

I'm mulling on what I should do to celebrate my CR. Maybe I'll buy another Harley. I sold my hog last spring after realizing that I'd ridden it less than 100 miles in 2 years, and thinking that I'd likely given up riding for good. Hope rides a Harley. Humm, I like that.