CR 248: 26th infusion

I officially am halfway through my two-year clinical trial with nivolumab. During my meeting with Dr. Hahn, his fellow, and two clinical trial nurses, they gave me a cupcake and sang "happy clinical trial birthday to you.' Just kidding. But I did ask them about dermatologic toxicity. They noted how my rash had subsided, although the nodules on my legs were still visible. Dr. Hahn said that he was unable to predict whether I would see a recurrence of the rash after today's and future infusions. based upon the limited experience of other patients who had taken Opdivo (including those with other types of cancer), he said that rashes did not follow any set pattern. Most commonly, patients whose immune systems reacted to nivolumab with a rash did so early on, within the first few cycles. Cases like mine -- a significant rash after more than 20 infusions -- were less common. And once a rash presented, there was little pattern to what happened next. Sometimes the rash did not recur. Other times it recurred in different locations. Other times it recurred in the same locations, but not as strong. Other times it repeated just as strongly. And in a minority of patients - less than 5% -- the rash increased in size and itchiness. The difference in reactions, Dr. Hahn explained, was due to the individual makeup of patients' immune systems. Frequently the T cells would figure out that it should not continue reacting to Opdivo with rashes. Only by waiting and seeing would we know. Dr. Hahn said that if the rash recurred in the same degree or worse, I could take an oral dose of over-the-counter Benadryl as well as continue using the corticosteroid. If the rash grew to grade 2 (less than 50% of the body surface area, or BSA), he might consider adding a steroid to the next infusion. If it got to grade 3, then he would discontinue the Opdivo until the rash resolved. I said I'd keep him informed if there was a (ahem) rash of problems.

I also was told by the clinical trial nurse that Bristol Myers Squibb was in the process of closing this specific trial, and is in the process of accruing data for an interim report that it will present at the Spring ASCO meeting. The hope is that the data will be broken down by cancer type and current status. The nurse told me that Hopkins had enrolled eight mets bladder cancer patients in this specific trial, and that there were between 60-80 mets BC patients in this trial at all locations. About half of those patients received combination therapies of nivolumab and ipilumumab, and the other half (including me) were monotherapy patients of nivolumab only. Dr Hahn is on the ASCO review committee for immunology, so he will get a sneak peek at the data. I'm eager to read the report and see the chart reflecting the durability of responses.

Earlier this week I signed up for Kaiser Permanente's Medicare Advantage plan for Fairfax County Virginia. It took several weeks of back-and-forth for me to find out whether Kaiser would be ok with my continued participation in my clinical trial at Hopkins. I was given at least four different answers before I found the definitive answer in Kaiser's 263 page long "Annual Notice of Changes for 2016." Sections 5.1 and 5.2 detail the conditions in which Kaiser will permit its members to participate in clinical trials outside of its coverage area. The short answer is yes, Kaiser is ok with my continuing in my trial, and might even agree to bear some of the standard of care expenses that accompany the trial. Before that happens, I need to get enrolled, meet with a GP, who will refer me to an oncologist, who will review the facts and (probably) will agree to work with Hopkins. And even if they don't, I'll have somewhere to go for any non-cancer health issues that may pop up, as well as a cheaper place to fill my prescriptions. In anticipation of a March 1 enrollment, I brought home three paper scrips. Hopefully this will all work out, but I won't be surprised if I hit some bumps.

In other news, a couple of days ago my youngest son Garrett learned he had been accepted to BYU. Yay! He's still waiting to hear from Carnegie Mellon and MIT. (He must have got the math gene from Jennifer, because it certainly did not come from me.) If he's accepted to more than one, we'll be looking at the financial aid packages offered by each before he makes his decision. I'm playing financial aid hardball: unemployed, totally disabled, receiving SSDI, fighting metastatic cancer with a 90%+ mortality rate. There are few silver linings to my cancer cloud, but getting college financial aid for one of my kids might be one of them.