Thursday, September 28, 2017

Has My Cancer Crossed the Rubicon?

Years ago, I worked at a burgeoning sole proprietorship where the owner loved to kick off the week with his staff. Every Monday morning, bright and early, we’d gather in the biggest room in the biggest building to let him wax philosophic on the world, economics, libertarianism and our work, usually in that order. He was well-read and fiercely opinionated. One morning, in anticipation of a lecture on economics, he began with a question:

Julius Caesar leading his troops across the Rubicon River in Italy, painting by Jacob Abbott
By Jacob Abbott [Public domain],
via Wikimedia Commons
Can anyone tell me what “Crossing the Rubicon” means?

As usual, mine was about the only hand that shot up. I have been like that since I was a child; I had a sharp memory and retain some pretty strange stuff. "Crossing the Rubicon" is a reference to a river in northern Italy. It was the outer boundary of the Roman military dominance in 49 BCE; Julius soon-to-be Caesar had been forbidden to cross. If he crossed, he began a civil war.

Julius had other ambitions. He crossed and said “the die is cast.” Today, “Crossing the Rubicon" means making an irrevocable decision, or crossing a point of no return. 

Crossing My Rubicon

About a week ago, I awoke in a tremendous, new pain. This was not the bone pain/fever combination I had been fighting. This was something else entirely. It was 11 on the 10 scale of pain. I was on fire in my hips, up and down my spine, my head, everywhere I’d ever had arthritis, everywhere. Or so it felt. Over the counter remedies barely touched it. After trying to manage for a day and a drugged night with little relief, I got whiny and plead-y with my doctor’s office. They scrambled to find someone capable who would see me on a Friday afternoon. (One does not simply come in to see the Oncologist in this practice; they all have too many patients and not nearly enough time.)

They found someone awesome. I dragged my stiff rear into a different office, and the PA took a long look. An hour long, to be exact. She listened carefully to the symptoms, asked good, targeted questions, did her exam. She was reassuring (and correct) that I did not have mets fractures. This was too bilateral and diffuse -- it was widespread inflammation, possibly still the Kadcyla.

But then she reviewed my PET and my MRI. No brain mets, good news. But the number of sclerotic lesions in my bones is beyond concerning, at least to me. (Not to them: they call it minimal progression.) Even my skull has lesions, per the MRI. 

By the end of the hour long appointment, she told me that yes, it was possible that I have crossed the Rubicon: it is possible that my bones and the cancer are finally causing even this widespread pain. Or not. No one knows. But I walked out with my first ever Norco script…the one I’ll get refilled over and over from now on, most likely. That’s a Rubicon, too. I can count on one hand the times I've had Vicodin or Norco outside of the hospital. Even inside.

Xrays confirmed no fractures. And when I think about where these lesions are, I still think I'm dealing with Kadcyla. The problem is, I'm off. I’m done. I am well beyond the end of the cycle it and I should be getting better. I think am making progress, but it’s hard to be sure it will stay that way. I couldn’t get my flu shot because the fevers are still happening. Kadcyla seems to linger. But how long?

My biopsy is next week. I am reassured that they will do a more thorough job; the nurse read the notes to me: my doctor has requested several areas, not just the one tumor, and more sample, so the Human Epidermal Growth Receptor (HER2/neu) assay has enough tissue. This is a critical piece of information, and information is power. I will be in the trial if positive, and we'll do something else if negative. But no treatment until then. 

I will update when the updates come along. As always, I love your targeted comments. 

Tuesday, September 5, 2017

Reactions and Side Effects

My last round of Kadcyla hit almost immediately. I could feel the fever and the bone pain; taking a dexamethasone pill seemed a no-brainer, so I took one early in the morning the next day.

It wasn't long before I knew this one wasn't going well. I could feel the reaction come on, but I was helpless to do anything about it. I felt the welling of negative emotions; the shakiness of my hands and knees; the increase in heartrate and respiration. I knew what was going on; I was having a steroid reaction. I called hubby to come help. He did great, because he knows what to do. He held me and let me cry until the original sense of panic and mania subsided, and then took me for walk later to help smooth out the rough spots. Nonetheless, it would be three days before I slept more than two hours at a time, and I still don't feel well.

That's the downside of trying to treat the side effects of this chemo; steroids have awful side effects of their own, and I had one. I hadn't even taken a whole pill! Most of the time, once onboard, I feel great. This time, not so much. I am so grateful that this should be the last time I ever have to do this awful drug again. I'm moving on.

The Clinical Trial

I've applied for the HER2CLIMB trial.  This is a double-blind, Phase II study. That means that I'll receive certain standard of care treatments regardless -- some of which we might have tried anyway -- and there's a chance that I'll receive this new treatment as well.

The new treatment targets a part of the cell that signals growth, the Tyrosine Kinase enzyme. By interfering with the signal, it is hoped that the cancerous cell that has gotten the growth signal stuck "on" can't signal anymore. Earlier studies show optimism for about a third of the study participants.

To get into the study, I have to qualify. They are going to check everything from brain mets to tumor histologies again. Some of those are being scheduled now, including an EKG, another CT, lots of blood work and an MRI. I will be on another 21 day cycle, but there are many more pills involved. Herceptin is the only infusion -- everything else is a pill. I'll have to 1. stick around for treatment, and 2. travel farther to get it, both of which are also downsides.

The biggest concern that I have for this treatment is something called "hand-foot syndrome." Hand-foot syndrome causes redness, swelling, pain and blistering on the palms of the hands and/or the soles of the feet. This is common enough with one of the drugs -- the one I might have tried anyway. As near as I can tell, something about our hands and feet causes the chemo to sweat out and burn. My new caregiver assures me that I will be fine by following a specific care regimen-- she's ready to make sure of it. I'm finding that reassuring.