CR 504: Infusion 43, and a potential advocate for BC

Yesterday I received a call from Liz, a Hopkins employee who is working to increase the visibility of The Greenberg Bladder Cancer Institute, and asked if we could chat while I was there for infusion #43. Sure, I said. She brought with her colleague Michael. They were interested in having me participate in a Facebook Live session with David McConkie, the Director of Hopkins Greenberg Bladder Cancer Institute. We set up a meeting after Thanksgiving with Dr. McConkie to kick around the idea a bit more. They also asked that I author a guest blog for their Cancer Matters blog. I said that I was happy to add my voice to sing the praises of the place that saved my life.

We talked about why more patients are not enrolling into clinical trials and getting immunotherapy. There is no simple answer. Most patients, when they are diagnosed with cancer, want their doctor to tell them how to treat them, but don’t get into the details. Cancer triggers such a primal fear in most patients. They think of it as an acute disease that demands immediate action, not a chronic condition to me managed. Usually, the first doctor they see makes the treatment decisions. Few seek second opinions or go to an NCI center such as Hopkins. It’s not that much different from when your car has a major engine problem and has to be towed to a mechanic. Most people will have that first mechanic work on the car, regardless of the mechanic’s level of expertise, or cost, or the availability of other mechanics. But that mechanic may not be the right person, and the recommended repairs may not be the right repairs. When your car (or body) breaks, you want it fixed. You don’t want to go get multiple estimates from different mechanics (or doctors).

Today Dr. Hahn told me how a new study had just been released that compared pembrolizumab to adjuvant chemotherapy. The data showed a significantly better prognosis for patients getting immunotherapy. This means that more and more patients will be able to get immunotherapy for metastatic BC first, instead of having to try and fail chemo. I told Dr. Hahn that was great news, but even better would be studies showing that immunotherapy worked on muscle invasive bladder cancer (MIBC) before RC. Patients could get rid of their cancer without having to lose their bladder and go through all of the side effects. Dr. Hahn said that would be great, but there would have to be lots of more studies (and a number of years) before we were at that point.

I related this to Liz and Michael, and said that until immunotherapy becomes the proven first line treatment for MIBC, urologists will continue to be the first point of contact for almost all BC patients. (Ironically, the standard treatment for non-MIBC is a type of immunotherapy called a BCG wash, which is typically locally administered by urologists.) For now, too many urologists who are not attached to NCI centers have little motivation to send their patients with MIBC somewhere else. They usually wait until the cancer goes metastatic, an even then the patient typically will be referred to a local oncologist. And most clinical oncologists are not participating in immunotherapy clinical trials. The challenge is getting the word out about immunotherapy to both patients and doctors. I’ll do what I can to evangelize. Knock knock. "What do you know about bladder cancer? Would you like to know more?" Humm, maybe there is a better way . . . .

Meanwhile, infusion #43 was routine, other that, when doing my vitals, the scale that I stood on said that I had lost 40 pounds in the past two weeks. I snorted and said that couldn't be correct. I knew that I had eaten way too well in Scotland and Ireland for that to be the case. We found another scale that confirmed I was still fat, dumb, and happy (well, two out of three, I thought angrily). Dr. Hahn said that my labs were 100% normal – none of the 40+ things they tested were outside the typical range. And last week the Hopkins radiologists reviewed all of my scans while on the trial, and wrote that my last scan showed no evidence of any of my target tumors. I mentioned this to my nurse and he was accessing my port, and he smiled broadly and said that was something that they didn’t hear too often.

Tomorrow Jennifer and I are flying to Utah for my nephew’s wedding. We’ll get together with my side of the family, and Jennifer’s family is also having a gathering. And we’ll of course get to stay with and play with the grandchildren. I am fortunate indeed.