Infusion 51: reports of my CR are premature

Last week Garrett and I flew from SLC to IAD, and spent a couple of days prepping him for delivery to Carnegie Mellon. He admitted that he was a bit more nervous about starting college than he was starting a 2 year mission for the church, because his schedule was more set on his mission. I told him that, of all of his siblings, he was the best prepared and most mature to attend college. I helped him move into his dorm room, gave him a hug, and said I’d see him at graduation. Dad! he said. I replied that I hoped that I would, but who knows what will happen in 4 years. But I’d also see him at the parent weekend in October, maybe for Thanksgiving, and certainly for Winter Break. And he was launched.

Om Tuesday, August 21, went in for blood work. The first tech managed to blow two veins before I asked for another tech, who had no problems with the draw. My labs are utterly unremarkable. My ALT and AST levels, which had been creeping up earlier in the year, are back in the normal range, indicating my liver is happier.  I met with Dr. Ferreira, my Kaiser oncologist. She acknowledged that she was somewhat surprised by the radiologist’s conclusion from last month’s PET scan that there was no evidence of disease, and I’d had a complete response. She took a hard look at the scan images and detected a bit of metastatic uptake in the area of my primary tumor in my neck. She showed them to me, and she’s right – there is a bit of uptake – not a lot, but not nothing. So it looks like the report of a CR was premature. But I’m not complaining. It’s still a great result! More than 90% reduction in tumor size is wonderful. It just suggests that I should keep on taking Opdivo for a while, and continue getting scans. We scheduled another visit and a CT for October, after the parent’s weekend at Carnegie Mellon.

After visiting with Dr. Ferreira, I drove up to Baltimore for my final meeting at Johns Hopkins with Dr. Hahn under the aegis of the clinical trial. Brad Witt, the clinical trial nurse, said that I was the last Hopkins patient in the original Opdivo clinical trial who was still considered to be within the trial. The 40 or so other genitourinary mets patients at Hopkins in the trial had long since stopped taking the drug. Those still living were still being followed, but were no longer considered to be part of the trial. I’d started the trial in early 2015, taken the drug for nearly 2 years, then took a break for about 18 months before resuming treatment. Hopkins will still continue to email or call every 12 weeks or so to make sure I’m not yet on the cart (not quite dead yet), but my obligations to visit Hopkins as part of that clinical trial is done. I’m profoundly grateful to have been part of that clinical trial; to Dr. Andrea Apolo at NIH for helping to arrange for my participation; for the clinicians at Hopkins who provided my care; and to Bristol Myers Squibb for developing Opdivo and providing the drug at no cost. Opdivo has saved my life not once, but twice. It may not work for everyone, but it’s continues to work for me.

Dr. Hahn and I spoke about one of his former fellows, Dr. Ben Maughan, who now is with Huntsman Cancer Center in Utah. Dr. Hahn thinks that, once I officially relocate my care to Utah, my transitioning to Dr. Maughan’s care is a great idea. I’ve started vetting the Medicaid Advantage plan associated with the Huntsman Cancer Center.  SO far the reps have no idea whether Opdivo would be a covered drug. That’s potentially a very expensive question (up to $50,000 per year, perhaps). I won’t change my care from Kaiser until I’ve got that issue worked out. I shook Dr. Hahn’s hand and thanked him for saving my life.  Our paths are likely to continue to again at various BCAN or NIH/NCI initiatives.

Today (Wednesday), I went back to Kaiser for Opdivo infusion #51. Utterly routine. So far the side effects of the 4 week infusions of nivolumab has been no different from the two week infusions – an occasional rash here and there, and a bit looser bowels. Nothing to worry about. I appreciate having to come in only once every 4 weeks. I’m flying back to Utah this evening. Chelsea is due to delivery any day now, and I’m glad to help with the other kiddies. And it will be good to see Jennifer.

I’ve been investigating my health care options in Utah. Since the federal government considers me to be as totally and permanently disabled due to my metastatic bladder cancer, I’ve been Medicare-eligible since I was 50 years old. I started on Medicare in January 2016, after my formal retirement from my law firm left me without work-sponsored health insurance. Beginning in January 2016, I’ve been with Kaiser Permanente’s Medicare Advantage plan. I’ve become spoiled, since it’s been the best health care I’ve received in my adult life. I was already on my clinical trial through Hopkins when I joined Kaiser, and Kaiser not only agreed to continue supporting my care through Hopkins, but the plan enrolled me into their additional benefits through the Kaiser Family Foundation, which meant that I have not had to have any further expenses such as deductibles or copays. I have not had to worry about the cost of Opdivo, or my scans, or anything else.

In Utah, however, Medicare plans are not as generous. I’ve learned that because Opdivo is given by infusion, it is classified as a Medicare Part B drug that is subject to a 20% copay up to the annual plan deductible (around $5000). I’m told that non of the Utah Medicare Advantage plans cover the Part B copay. I don’t yet know how much the plans charge Medicare for my monthly 480mg dose of Opdivo, so I don’t know the amount of my copay. I’m doing further investigation, so I know my costs up front. Until I get that worked out here, I’ll fly back out here for my treatments. I’ve already bought my tickets for September and October.