Columbus and the Valley

Have to Stop Taking Votrient

“In an essay titled “A View From the Front Line,” Jencks described her experience with cancer as like being woken up mid-flight on a jumbo jet and then thrown out with a parachute into a foreign landscape without a map:

“There you are, the future patient, quietly progressing with other passengers toward a distant destination when, astonishingly (Why me?) a large hole opens in the floor next to you. People in white coats appear, help you into a parachute and — no time to think — out you go.

“You descend. You hit the ground…But where is the enemy? What is the enemy? What is it up to?…No road. No compass. No map. No training. Is there something you should know and don’t?

“The white coats are far, far away, strapping others into their parachutes. Occasionally they wave but, even if you ask them, they don’t know the answers. They are up there in the jumbo, involved with parachutes, not map-making.”
Siddhartha Mukherjee, The Emperor of All Maladies

I had a meeting with my favorite white coat, Dr. Andy Pippas,  yesterday afternoon. After a couple of times waking up from a sound sleep with a splitting headache and the sensation that I’m seeing my blood pulsing in my field of vision and the steady, precipitous dropping of my weight — I realized I might have a problem. The results of my weigh in this morning showed I have now officially lost 100 pounds. Vomiting has become an almost daily occurrence. My cancer drug, Votrient, is whittling the list of foods I can eat down like a runaway buzz saw. The most pressing issue is that my blood pressure has decided to hop onto the front car of the roller coaster and it is click, click, clicking upward. WTF!

My white coat pointed his finger at me.

He really didn’t, but that steady, Greek (……a guess) gaze through those ultra cool glasses Dr. Pippas wears as he said, “Mike, you’ve got to stop taking Votrient immediately. You need to stop for two weeks, beginning today. Your body needs to reset. Then we’ll see.” He went on to tell me that most who take this drug get about six or seven months of a reprieve from their marching kidney cancer. I have been taking the drug for almost 15 months and my body is telling me that it needs a break.

Think: 2″ thick USDA prime ribeye steak.

I did. Almost my very first thought.

My last scans were clear. The adrenal tumor is gone. But, the ground that has been gained has been paid for with muscle tissue, nausea and fatigue.

Jill is a stunning soldier and I love her.

That was six days ago. I have discontinued taking the Votrient, despite it keeping me alive and despite the fact that the medication has shrunk my adrenal gland tumor completely! Don’t think I am doing this without some extreme concern. It isn’t easy to ignore a medication that didn’t “bring me to the dance,” but damn sure has kept me alive and healthy enough to be at the dance within earshot of the jukebox! So, yes, I am beginning to feel better. Yes, I am throwing up less and diarrhea is less of an issue than it was a little over a week ago. But, at what cost? Am I opening the door for the cancer to rekindle and mount another assault on my body? Unfortunately, I don’t know the answer to these questions and neither does anyone else. So, we’re going to mind my favorite white coat and lay off the Votrient for a total of two weeks. Then I’ll be back in Dr. Pippas’ office asking some questions about what we do next.

Meanwhile, I still can’t fathom eating that steak. I still can’t eat much of anything and according to my friends, “I’m the perfect look for that guy in a Viagra commercial.” I’m thin, I’m white haired and doggone it, I must look like I suffer from erectile dysfunction and already exploring what are risks of using a penis pump on myself.

 

Drug Side Effects Still Taking a Toll

On the surface it seems we have been successful in relegating my case of stage IV renal cell carcinoma (kidney cancer) into acting like a chronic disease. Something like diabetes. Something you can live with and keep at bay with medication. It doesn’t appear to be actively trying to snuff me out and thankfully it also appears that the oral chemotherapy I’m taking daily, although it is making me very nauseated and giving me constant diarrhea, has done a number on at least two tumors on my left adrenal gland. The tumors are gone!

Jill and I met with Dr. Andy Pippas yesterday morning. Except for a slightly elevated billirubin count, my lab work is exceptional. The higher than normal billirubin is a direct result of my taking the Votrient, which is an oral chemotherapy drug called a tyrosine kinase inhibitor. Our discussion with Dr. Pippas went toward the shocking weight loss I’ve experienced — now almost 100 pounds! He looked at my chart and proclaimed that I’d lost about 10 more pounds since I last saw him just 4 weeks ago. He is concerned, as are we, that I’m really starting to lose muscle mass and tone.

We talked about my nausea a lot during this visit, I guess because it has gotten worse over the past month. I am really having a difficult time eating almost everything EXCEPT Vietnamese food. I’m surviving on a dish at Uptown Vietnam Cuisine called hu thieu, which is a pork broth based soup, similar to pho (pronounced  /f?/). It fills me up. It makes it happy and it is a very healthy dish, according to Beth Bussey, my nutritionist. Other than that meal, I am finding it very difficult to eat a single other thing without feeling nauseated. For a former fat foodie, this is really quite difficult to take.

Dr. Pippas prescribed a timed-release patch containing a drug called ondansetron (trade name Zofran), and the idea was for it to provide me with a constant infusion of the drug for a solid week and keep my nausea at bay. I applied the patch yesterday afternoon and so far, I have been nauseated almost every waking moment. I’m not sure if I’m experiencing a “breaking in” period or whether there is something else going on, but I’m at the edge of a dry heave all the time. So far, today hasn’t been much fun.

Dr. Pippas also told me about another product which is a wristband that gently stimulates the median nerve in the wrist and signals the “vomit center” in the brain not to fire. Who knew the brain had a vomit center? I am doing some research on that product now and may add it to my anti-nausea regime to see if we can get me back to a better place.

So, all things considered, I am in a pretty good position right now for someone with stage IV cancer. I’m not in immediate danger of dying. I’m able to enjoy my family and friends. And, even though I have a real intimate relationship with my toilet, I can enjoy and fairly respectable amount of good time during a day. As I see it, things could be a lot worse. If this is all there is, I’m happy to have it.

The other news is that I’m feeling like I might be able to write again and I hope that will translate into my being more communicative in this blog. Time will tell. In the meantime, I hope you have a fabulous Christmas with your family and friends. If you celebrate other holidays at this time of the year, I hope yours is a great one! For all my brother and sister cancer sufferers out there, hang on, there’s a better year coming.