Oh, Fudge

Like Ralphie, no one here said "Fudge" reviewing the PET scan.

This past Thursday, whilst I was in Redwood City slaving away over a hot PS4 playing a videogame, Karen went in for her latest PET scan. She stuck around afterwards to get the DVD of the scan and so, when I returned home Friday evening, I popped the disc in my PC and had a look. The images confirmed the unhappy suspicions we'd been having for some time.

Some quick background: over the last week or so Karen's coughing has grown worse. She's been having trouble drawing a full breath and she occasionally has that "bubbling" sound in her breathing. The right side of her upper back has been causing her pain and she's experiencing discomfort/pain when swallowing. Her energy continues to flag as well. There are times that she's struggling to recall words and that is uncomfortably similar to her symptoms right around the time we discovered the brain mets; this said, it could just be fatigue, or the weed, or the oxy, or lingering chemo brain, or or or...we aren't panicking over it. Not yet, anyway.

Because why panic over the unknown when there are known things more than deserving of anxiety? The PET scan confirmed all of our worries and then some. The difference between April's scan and last week's is striking. The lymph nodes in her neck and under her arms are lit up up like searchlights. Worse, both lungs have clear progression of growths, particularly the right lung which features a poisonous archipelago of tumors scattered top to bottom across the lung. These masses also seem to be located in the rear portion of the lung, which likely explains the pain Karen is experiencing in her back. 

Additionally, there seems to be cancer in her esophagus which provides some explanation for the pain Karen feels while swallowing. That is new--she never had any cancer in her esophagus before. There is also some relatively slight activity in her liver (it was worse 1.5 years ago when she was first diagnosed) and there appears to be a few brand new cancer outposts staking claims across what we believe to be her colon. 

So, all in all, not especially great news.

Now, granted, we are not professional PET scan readers and there is a chance that we could have this all wrong. But I strongly believe that we don't. We'll get the official word on all this next week from our oncologist but our medical team has already validated our personal diagnosis in a roundabout way, by informing Karen (based on her symptoms and those blood markers) that they didn't believe chemo was working for her anymore. As a result, they prescribed a new oral med before Karen even had the scan that she will take instead of doing any more chemo. At this point, the PET scan is really just confirmation of the oncologists' belief that maintenance chemo has run its course.

The new med is Zykadia and you can click on its name there to find out more if you're so inclined. It was just approved by the FDA and it specifically addresses the ALK+ type of lung cancer Karen has. Roughly--very roughly because the sample size is very small--55% of former crizotinib-gobbling patients can expect some sort of benefit from taking it. Karen made similar odds with the crizotinib back in January of 2013 (and, man alive, does that  feel like five lifetimes ago) so we're keeping our fingers crossed for a similar outcome. If the Zykadia doesn't get the job done then we move on to new, more unpleasant chemo.

So, the good news is there are options. The bad news is that they are growing less reliable, more toxic, and eventually more limited. 

This is why you don't take chemo drugs on vacation.

And I'd be lying if I said we were optimistic right this minute. While we hope for the best, Karen and I both have a sense that maybe we've hit an unhappy threshold, that this is the tipping point where our good luck runs out and things start getting....oh, let's say....not quite as breezy and carefree. 

In the meantime, Karen will be leaving with Miranda  and Margaret (Karen's best friend since high school) the day after tomorrow to go visit her sisters and mom in North Carolina. That trip is why she's not starting the Zykadia right away--the stomach issues the drug seems certain to cause are not exactly vacation-friendly.

STATUS UPDATE

• Karen's latest PET scan shows a fair amount of cancer progression. This being said, this is our take on the test and we could be wrong (though that seems enormously unlikely).
• There is evidence of cancer recurring in both lungs (especially the right one), her lymph nodes, and her liver.
• There is also evidence of the cancer spreading to new locations in her esophagus and her colon.
• Karen is through with maintenance chemo and will instead begin taking Zykadia, a brand new drug that has a 55% chance of providing her with some benefit.
• In terms of symptoms, Karen continues to struggle with ebbing energy, persistent coughing, an inability to draw a full breath, and various aches and pains that are likely caused by the cancer.