December 2015 Update

It’s taken me a while to get around to writing this post.  Not because there hasn’t been anything to say, but because I’m grappling with all that is going on.  I’m in a funk, and it’s hard to go here now.  But let’s try.

A week before Thanksgiving, my oncologist called to give me the results of the scan I’d had two days before.  The Sutent wasn’t working.  There was growth in pretty much all of my cancer sites – lungs, adrenal glands, pancreas, the abdominal bed where my left kidney used to be.  I tuned out at some point during the litany of sites, but there were more.  The growth in each site tended to be between 1 and 3 mm, and most, if not all, of my sites are still in the low centimeters.  (up to 10)

We talked a little bit about what treatment comes next, and we quickly agreed to go for Opdivo (nivolumab), which is an immunotherapy treatment.  Basically, the drug may help the body’s immune system fight cancer cells.  Opdivo has been used to treat lung cancer and melanoma with significant benefits, and immunotherapy is the big thing in cancer right now.  You may have heard that Jimmy Carter has presented with No Evidence of Disease (NED) after treatment for melanoma.  He was using another, similar drug, called Keytruda.  Opdivo was approved for use in advanced kidney cancer on the 23rd of November, but I got a jump start, and had my first infusion on the 20th.

What happens now?  I have a one hour infusion every other Friday.  After about 2 1/2 months of treatment, I’ll get another scan to see if there is any positive effect (no growth or shrinkage).  Until then, we wait and see.  So far, I’m not having much in the way of side effects – low magnesium and a little bit of joint pain, which is easily managed.  I get my lab work done before each infusion to make sure everything looks ok.  The infusions themselves are pretty easy.  I generally use it as time to get a nap.

I’ve had a lingering cough since September, which has been getting more and more difficult to live with.  I went to the ER this past weekend because I was having difficulty breathing.  Got scans and lab work, and was basically told “No pneumonia, no blood clots, we’re sending you home.”  (Not very helpful, that.)  My oncologist seems to think that the cough is caused by the mets in the lungs.  He’s given me Robitussen with codeine, which has helped me tonight (fingers crossed).  He does seem hopeful that the Opdivo will reduce the size of the sites in the lungs, which could help the cough.  We’ll see.  In the meantime, I still cough, and I find it difficult to do much.  A trip to the grocery store left me winded multiple times.  I move very slowly, and continue to schedule about one thing a day to avoid over doing it.

All of this has hit me pretty hard.  I realized I was hoping/expecting the Sutent to work for six cycles or more, so I was rather crushed to find it didn’t help at all.  I find myself moving forward with low expectations for Opdivo, low expectations for my quality of life going forward.  I am trying to find positivity within myself, but having a hard time with that.  The holiday season doesn’t interest me at all.  Yeah, there is depression happening – a mixture of the season’s shorter days, disappointment over the lack of efficacy of the treatment, gloom about dying.

Over the past few weeks, I’ve had a number of instances where people have shown that they’re not clear on my status.  “You’re getting better, right?”  “We’re going to have you around for another 10 years or so, right?”

The reality is that, no, I’m not getting better.  And the reality is that, most likely, any positive results will mean that my life might be extended in periods of time measured by weeks or months, not years or decades.   I hope for good results with this treatment, or the next, or the next, or the next or the next.  (And right now, that’s the extent of the nexts we have available.)  I hope that I can join Jimmy Carter and be able to tell you that I’m NED.  There is a chance of that, but it is slim.  Very slim.

So, I’ve finally written this all out, and  I hope that I can shake off some of the blues I’m feeling.  I hope that I’ll cough less, sleep more, and gain some energy.  I keep myself going with the image of myself, sitting on the beach in Hawaii with a mai tai in hand, watching the kids boogie board and snorkel (and hopefully doing some of that myself.)  Two weeks.  Two weeks.

Just get me there.