Because we know that the nodes were the site of tumor cells, regardless of the reality, Dr. Hahn isn't willing to say that there is "no evidence of disease", or NED. He doesn't know whether there is any active cancer left in those nodes. He said it was possible that the tumors are thoroughly long past, or that any residue is inert. But it is additionally possible that the cancer is still present, but just no longer growing at the moment. And of path my cancer is systemic, and no longer confined to those lymph nodes that were actively growing. The hope is that the nivolumab has acted upon the cancer whereby ever it is, but it be too soon to say that it is eradicated. Only time will tell whether it inevitably is long past, or whether it is still lurking and are searching for a strategy to birth growing lower back.
At the Spring 2015 meeting of the American Association for Cancer Research (AACR), some papers were offered that noted that many cancers contained multiple mutations, yet most tumors were a end 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 just like chemo or immunotherapy kills the dominant mutation, a less dominant mutation might kick in and begin growing. In my case, it may be that my two option types of platinum-based chemo could have suppressed the mutation that led to 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 seems to be to have acted on those tumors, prompting present day good news of a whole response. The questions now are (1) whether the effect of the nivolumab on the PD-L1 mutated tumors is permanent, or transient, and (2) whether every other one of my mutations will kick in and begin growing. Like I said, only time will tell.
For now, I'm going to bask in the sun of the pronouncement a whole 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 kind of the movements of other americans, and I'm thankful for the movements of the doctors and other health care professionals who have made possible my access to this newly constructed drug. I'll continue with the nivolumab infusions, as data from the metastatic melanoma scientific trials suggests that continuing with the drug increases the odds that the tumors will no longer reappear.
After Dr. Hahn and I finished celebrating his pronouncement of a whole response (which took a couple of zero.5 2d), I asked him about the radiologist's observation that my thyroid cyst gave the impression to be slowly increasing in size. I told him how that cyst had been noted on my scans for moderately a while, and that everyone had ignored it. He said that it was highly unlikely to be cancerous, and even less most probably that it was related to my metastatic bladder cancer. But he said that I should have an ultrasound and biopsy done to ensure. He'll put in the orders and I'll schedule that up in a wiser month or two.
I additionally 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 no longer, but were as an alternative residual scar tissue from old viral infections. The radiologist felt obligated to comment on them, but they were nothing to worry about. My 10th infusion of nivolmab was unmarkable – my port is working just satisfactory, and every little thing 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 be nice to think about. Maybe I'll replace the mets day count with "CR", or possibly I'll just drop the entire counting thing.
I'm mulling on what I should do to have fun my CR. Maybe I'll buy every other Harley. I sold my hog last spring after understanding that I'd ridden it less than 100 miles in 2 years, and thinking that I'd most probably given up riding for good. Hope rides a Harley. Humm, I like that.