Mets Day 1021: Notes on clinical trial options

For the past several days I have been further researching my clinical trial options. I have boiled it down to three choices:

1. Dr. Dawson's MPDL3280a trial at Georgetown; or
2. The nivolumab trial at either Hopkins or Memorial Sloan-Kettering in NYC; or 
3. Dr. Apolo's cabozantinib trial.

In the past couple of days, Dr. Apolo and I have exchanged several emails, and yesterday she called me to give me a further update. She said that she has been in contact with both MSKCC and Hopkins about their nivolumab trials. She learned that Hopkins had not been accepting patients with mets bladder cancer for their trial. She asked that they make an exception for me, which they apparently are considering. She had better luck with MSKCC; they have only a few slots left in their trial, but they said they would hold a slot for me. Dr. Apolo suggested that I take a trip to NYC to speak with either Dr. Rosenberg or Dr. Bajorin about my options, since she respected both of them and knew that deciding on the next treatment was a subjective decision. I have the wheels in motion to get that scheduled; MSKCC needs my NIH records before setting up the appointment. 

Today Dr. Aragon-Ching called me to talk about my choices. She said that, if I was going to got an immunotherapy drug, now was probably the best time to get it, while my tumor burden was relatively low. She saw no significant difference between the Roche's MPDL3280a drug and Squibb's nivolumab drug. She cautioned, however, that the nivolumab trial also had a cohort that combined that drug with ipilimumab.  She explained that ipilimumab (marketed under the name of Yervoy) is is a monoclonal antibody that works to activate the immune system by targeting  a protein receptor called CTLA-4 that downregulates the immune system. Cytotoxic T lymphocytes (CTLs) can recognize and destroy cancer cells, but the body generally inhibits the CTL mechanizem. Ipilimumab turns off this inhibitory mechanism and allows CTLs to to destroy cancer cells. But it also has a number of significant side effects. It has a higher number of toxicities than nivolumab or other PD-L1 immunotherapies. She said that I should be aware of the possible auto-immune problems that the combined ipi/nivo can cause. Yikes.

Dr. Apolo and Dr. Aragon-Ching also tried to reassure me about the side effects to cabozantinib. They both said that most patients found the side effects to be minimal, and tolerable. 

Yesterday I also exchanged emails with Dr. Spira at Inova Fairfax. He confirmed that his MPDL3280a trial was not open to me, since I was not chemo naive. But he invited me to keep tomorrow's appointment so we could discuss other possible clinical trials. I figure that getting opinions of knowledgeable doctors is probably a good thing, so I'll meet with Dr. Spira tomorrow.

Currently, I'm leaning towards doing a PD-L1 trial. My first choice would be the MPDL3280a trial at Georgetown, but there's only a 50/50 chance that I'd be randomized into the arm that I want. If I get put into the taxene arm, I'd probably withdraw. My backup plan is to enroll in the nivolumab trial, hopefully at Hopkins (since it's much closer), but if not, the one at MSKCC.

Meanwhile, I am aware that my cancer is spreading. For the first time, I can palpitate the enlarged nodes in my neck. The largest node under my clavicle is hard to manipulate, but there are a couple of other nodes on the left side of my neck that I can feel. Fortunately, I am not in any pain, but I am aware that the clock is ticking.