Tuesday, December 6, 2016

CR 530: Suspending my Opdivo treatments after infusion #45


For the past few months I’ve been having an ongoing dialog with Dr. Hahn about when I should end my infusions. The original terms of the clinical trial called for up to two years of infusions. I would hit that two year mark in February 2017. My working assumption had been to go for the full two years. But lately I’ve been wondering if there is any benefit to my doing that. I’ve had the good fortune to have had a complete response (CR) with no evidence of disease (NED). My most recent CT scan showed no trace of my original tumors. I wondered why I should keep shooting when there are no targets? Dr. Hahn agreed that there was no scientific basis to continue therapy. So last week I decided that this week’s infusion would be my last. Dr. Hahn fully supported my decision, and so did the trial sponsor, Bristol Myers Squibb. I’ll get CT scans every 3 months, and have the right to resume treatment at any time should my cancer rear its ugly head.

While waiting for my drug to be compounded, I met with Dr. David McConkey, the new leader of the Johns Hopkins Greenberg Bladder Cancer Institute. He is looking for ways to increase the visibility of the immunotherapy and the rapidly emerging changes to how bladder cancer is treated. We spoke of how to reach both patients and clinicians, and how ignorance and fear are the greatest barriers to taking advantage of medical advances. He asked me to review some of the copy being developed for the Institute’s new website, and also to do a Facebook Live webcast with him. I told him that I was in Hopkins’ debt and was happy to help spread the word however I could. We’ll see what comes of it.

My 45th and last (hopefully) infusion was routine. As wonderful as the nurses and staff at the infusion area are, I’m not going to miss it. I thanked the nurses in the G pod that have cared for me over the past two years – Liam, Shantel, Rachel, and so many others – who quietly celebrated the good news of a CR and NED patient. I looked at many of the other patients who were getting chemotherapy, bald, weak, cold, and could appreciate what they were going through. I look forward to the time when immunotherapy will be the primary therapy for cancer, displacing chemotherapy and hopefully even surgery.

From time to time I’ve blogged about coming to grips with the new reality of my durable response to nivolumab. I’ve been told that some doctors don’t like to refer to my condition as being in remission, because my treatment is experimental and there is no historical data to use as a comparative basis for my response. But NIH’s NCI website says that “remission means that the signs and symptoms of your cancer are reduced. Remission can be partial or complete. In a complete remission, all signs and symptoms of cancer have disappeared. If you remain in complete remission for 5 years or more, some doctors may say that you are cured.” According to WebMD, “Complete remission means that tests, physical exams, and scans show that all signs of your cancer are gone. Some doctors also refer to complete remission as ‘no evidence of disease (NED).’” I find “remission” to be a squishy non-technical term that is not particularly useful to me. I instead think of my cancer status as being NED since June 2015. If and when I get to June 2020, I can begin to flirt with the idea of a cure. But that is a long way away.

For now, I’m happy to live one day at a time, finding joy in the little things as well as the big things in life. I can look forward to my family milestones: In two weeks, my son Spencer will graduate from George Mason University with his bachelor’s degree. In May 2017, my daughter Kirsten will receive her bachelors from GMU. Jennifer and I are planning a celebration trip with them over the Christmas break: we’ll fly to Peru, hike the Inca Trail into Machu Picchu, then spend a week in the Galapagos. It’s a bucket list trip with my children, and an opportunity to have joy and rejoicing with my posterity.