PLX

It’s been so long since I last wrote about the cancer journey, I had to go back and reread my post “Waiting Period” to catch myself up. So when I last left off, Mike and I were basically forced to idle uncomfortably while waiting for the genetic testing to be complete and determine our next step. In the meantime, we attempted to manage the pain, constant vomiting, weight loss, shaking chills and drenching sweats the best we could, feeling like we were running out of time. Finally, on May 3rd, 2011, a month after Mike checked into the ER at Sacred Heart, we received promising news. Seattle Cancer Care Alliance called to tell us Mike had the genetic mutation required for the study.

“PLX” was the word that provided the most secular hope in my mind. No, I don’t mean PDX, like the Portland Airport. I mean the medication, which was then called PLX4032 (now known as vemurafenib, or brand name Zelboraf). What we affectionately referred to as just “PLX” became our worldly mantra after Mike was told he had the BRAF genetic mutation and could now enroll in the Phase 3 clinical trial at Seattle Cancer Care Alliance. Over 60% of melanomas have this mutation. Having this genetic mutation was like winning the melanoma lottery. In the oncology world, PLX was big news, showing very promising results with advanced melanoma patients. This is what we were told anyway. And it’s true. In comparison to chemotherapy for melanoma, PLX4032 was, and still is, groundbreaking. In early clinical trials, about 80% of patients treated with PLX had either partial or complete responses of their tumors. That’s awesome! People would tell Mike and I how great this new drug was. However, I refused to get on the internet and research it. There was too much emotion and fear involved. If what I read was worse than what I hoped, then I would be terrified and doubt would enter. My objective was to be optimistic and expect the best possible outcome.

The next day, May 4th, we went back to Seattle immediately. I felt like we were hanging by a thread, racing against time. Mike was throwing up more and more, to the point where he wasn’t even keeping water down. At his appointment, they had Mike pee in a cup to do a urinalysis, just because it was shocking how dark it was. Mike still had the wit to joke to the nurse that his concentrated urine looked like “a nice Alaskan Amber.” He had a baseline CT scan and lab work done, which were required prior to starting the study.With his blood work that day, they determined Mike’s anemia had worsened to the point where he no longer qualified for the clinical trial. This delayed starting the new medication by one day. No big deal, they just spent the next day pumping somebody else’s blood into him for 5 hours. Something about watching an IV bag full of thick, dark blood being transfused into his arm was a bit creepy. Afterwards, that day we went over to Whole Foods and got some groceries for the hotel. Mike rode around in one of those little motorized carts because he was weak and his back and hips hurt so bad.

Finally the next day, May 5th, we met with Dr. Margolin again, the head of the clinical trial. She reviewed Mike’s CT scan with us, which, of course, made me shake and tremble. She appeared surprised by how much cancer Mike actually had. She said since his last CT scan, the cancer had overall grown a little, as expected. Dr. Margolin went over the PLX side effects in depth, and she also drastically increased Mike’s Oxycontin dose; no sense in being in pain all the time. He was now up to taking 120mg of Oxycontin every 8 hours. Since working in a pharmacy for about 5 years, I’ve never seen anyone else on a dose that high. Not that it’s an uncommon dose among cancer patients, I’ve just never seen or dispensed a prescription for that high of a dose before. Mike was also taking breakthrough pain medication (either hydromorphone or oxycodone – and usually two or three tablets) at least twice between every Oxycontin dose. He easily could have increased his Oxycontin dose and probably should have to use less breakthrough medication. Sorry, lots of pharmacy jargon. It just blows my mind.

At the end of our appointment, Dr. Margolin gave us the prescription for PLX4032 and we went to the Seattle Cancer Care Alliance pharmacy and they gave us our brown paper goody bag filled with 30 days worth of study drug and oodles of Oxycontin. What a blessing to be able to have the convenience of taking a cancer drug orally instead of getting an infusion. In the hotel room that night, Mike took his first dose of PLX, which consisted of 4 huge pink tablets, that he would have to take twice per day. Our fear was he would throw them back up, and therefore it wouldn’t work. But he took them like a champ. The clinical trial would require monthly check ups, lab work, and CT scans. So we left to drive back home the next morning with nothing but hope that PLX would be the thing to turn it all around.

Mike’s pile of medications when we came back from SeattleAlmost a week had gone by on the new study drug and Mike was still vomiting like crazy. It was so frustrating to see him eat a bowl of cereal for breakfast and just hope to have it stay down so he could have some nourishment and calories, only for him to throw it up a few minutes later. A part of me almost felt frustrated with him, like he should try harder to keep it down, which I knew was ridiculous. I desperately wanted to see him gain weight and show signs of getting better, not lose more weight. Then he’d drink a glass of water and I’d think, well at least he’ll get some fluids, only to see him throw that up right away too. I remember finding him downstairs in the bathroom on his hands and knees bent over the blue garbage can puking so hard he had tears streaming down his red face. I came and sat with him and he expressed his fear that he couldn’t stop vomiting. He was concerned that he couldn’t keep anything down and was just continuing to lose weight. My heart was wrenched out. It had been a while on the new study drug and things weren’t getting better. That moment was one of the heights of our panic and desperation.

We went to see Dr. Nichols at Cancer Care Northwest in Spokane the next day because we were worried that there was some sort of intestinal blockage that was making it impossible for Mike to keep anything down. Mike made it all the way to Spokane without throwing up, and then once we were in town he let loose in his garbage can. Dr. Nichols agreed we should do an endoscopy and check things out. While we were there, she had him get some IV fluids as well. There was something kind of pleasant about the IV rooms no matter where we went. Once the initial anxiety about the phlebotomist placing the IV was over, it was a time to sit there mindlessly and wrap up with a heated blanket while eating free snacks. That afternoon, somewhere in Mike’s body, a tumor shrunk enough to allow him to keep food down. He started eating snack after snack and drinking cans of juice during his infusion. Afterwards we went to Didier’s Frozen Yogurt in Spokane, and each got a cup of yogurt, then when I got full and couldn’t finish mine, he ate the rest of mine too. I was like a proud mother. My heart swelled with joy in response to his appetite and not throwing up.

I can’t quite describe in words how spiritually fulfilling the next day was; it was something shared mainly between Mike and I. But we had been referred to a pastor in Colville who apparently had the gift of healing. I had called him and talked to him on the phone about our situation and he was incredibly intuitive and wanted to meet us. In the car ride up there, Mike began to cry. These were the moments that wrenched the knot in my stomach even tighter. Mike was my leader, the person I looked to for strength and confidence. When he started to cry and be afraid, my fear heightened dramatically. My goal was usually just to remind him to have faith and instill some confidence in him, and help him focus on one day at a time.

We arrived at the pastor’s house and after introductions, we sat in the living room with him and another pastor’s wife from their church. The next couple hours or so were filled with holding hands, praying, crying, the pastor speaking in tongues, awkward declarations out loud on Mike and my part, and asking a lot of questions. The pastor said their ministry at their church was faith based healing and he described accounts of people who were healed after being told by their doctors they would not live. I was having a hard time with completely understanding this stuff. I believed him, but again, I’m a skeptic. I asked questions like, “If you were diagnosed with cancer, would you seek treatment?” He answered honestly that he in fact struggles with that concept. There were just so many things I didn’t understand, but we left feeling deeply fulfilled and optimistic. In great spirits, Mike asked me to stop at McDonald’s on the way home. I sure as hell wasn’t going to turn down his request for food. He ordered two cheeseburgers, fries, and a smoothie and scarfed it all down without getting sick. We drove home with our spirits soaring, talking about how he was already cured, we just had to keep believing that he was already healed and we had victory over cancer. I will discuss in more detail the spiritual aspect of those 6 months in my next post, because the story is not complete without it.

We got back home and sat on the deck eating popsicles together, warmed by the sun. Mike smiled and laughed, and I had never seen him so beautiful and felt so happy the entire time since he’d had cancer. We drove the golf cart down the driveway and fed the pony some carrots. It was like Mike was back to being the leader, taking care of me, at least for a few minutes. I felt like that day was a turning point in his cancer, his journey, our spiritual lives, and our relationship. My heart soared with optimism and positivity.

That high was short lived, as the next day we drove to our storage unit together which was a little ways away. Mike started crying again about the fear of leaving me behind and about the fear of dying. It was a constant battle, trying to live in the spiritual world of believing with all our heart that Mike was already healed and not believing what the world and logic told us: that he was terminally ill. What an incomprehensible concept, to know you’re facing death, and to truly think about what dying means, and the world going on without you. How painful. I couldn’t take the agony he was going through and the heartache it was giving me. He fell asleep for much of our drive, and through my tears I envisioned driving his beautiful new Toyota truck off the cliff and putting us both out of our misery. I couldn’t stop it, the imagery of us careening off the side of the mountain and the finality of both of our lives ending together. What a beautiful thought, both of us going to heaven together, never having to be apart.