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.
