Today's infusion was uneventful. Hopkins and Kaiser got all their ducks in a row, and my labs that Kaiser did on Tuesday expedited the release of my drug today. To my pleasant surprise, I did not develop a rash after my 27th infusion two weeks ago. I kept waiting for those itchy nodules to appear. I didn't feel sad that the angel of rash passed me by. Or maybe I got a placebo infusion instead. Like most things in life, I'll wait and see what happens next.
During my meeting with Dr. Hahn, he told me to expect publication of the interim results from this trial in connection with the ASCO meeting. Dr. Hahn could not promise whether that data would provide much guidance to me, however, since I am in the leading edge group of people getting nivolumab for mets bladder cancer. But he said that we could look at data from other nivolumab studies with other cancers, as well as data from other immunotherapy drugs, and extrapolate from that. He'll be there to help me along. Since there will be a lot more information available in the next few months, I'll be patiently drumming my fingers until then.
<drum, drum>
Meanwhile, spring is springing in the mid-Atlantic, and I'm enjoying the warmer weather. I've been busy coordinating the finishing of our lake house, and collecting furnishings both so we can use it and to help it sell. In case it does not sell quickly, we're going to make as much use of it as we can.
<drum, drum>
Jennifer and I continue to noodle over future plans. The whole idea of making long term plans still feels a bit strange to me, kind of like we're tempting fate. But like Simba, I walk on the wild side. I laugh in the face of danger. So I have started to plan, and God laughs. Nevertheless, Jennifer and I have decided in principle to simplify and downsize as our nest empties. We have not yet settled on how we'll do that, or when, or where we'd go. There's no rush, however: As long as I'm in this clinical trial, it makes little sense to move. I expect we'll be here for at least the next year or so.
For the next few months, we have enough on our plate: getting the lake house on the market; a family gathering in Florida in April; Jennifer's graduation from her MSW program in May; Garrett's graduation from high school in June and his likely departure on a mission in July; and Chelsea giving birth to our first grandson in August. That should keep us occupied for a while.
<drum, drum>
Hi Ken: I just found your blog. I've been battling cancer since July 2013. A friend suggested I look and see if there were any blogs regarding opdivo. I had
ReplyDeletesurgery, chemo (both IV and oral)and started on opdivo
last June. I had 7 infusions. The first scan showed
a lot of improvement in my condition (but so did the
chemo at first). My scan in November was clear and
my doctor decided to stop the infusions. My last scan
was Feb 29th and it was clear also. The reason for
my looking for others going through what I am is because I've experienced a lot of side effects in-
cluding dizziness, blurred vision, tiredness and the itching on the back on my head (you mentioned). I
have also have several illnesses including colds,
bronchitis, and flu type stuff. Actually I remember
in early December that I felt normal for the first time in 2 years. We went on a cruise and I caught a cold and that feeling left me and hasn't returned.
I am surprised even shocked to hear you have had so many infusions. The one thing I realize is that is
a new game and the rules and possible outcomes are still being discovered. I'm seeing my doctor tomorrow
and will ask him about your comments, etc. I have a type of bladder cancer that spread to my abdomen,
lymph nodes in my arms, groin, and lastly my lungs.
As Pitbull says "for those out there having problems
every day above ground is a great day- remember that!" Thanks for your blog Brian
Pitbull never had cancer...
DeleteLove checking in and seeing your outlook is the same as ever, Ken. Lots happening in your family. Excited for Jennifer to be finishing up her degree. My love to you both, Lori
ReplyDelete