A New Chapter Begins: Goodbye MDX-1106, Hello Sutentby Dena Battle, caregiver on September 9, 2011
This morning while we were sitting in the Johns Hopkins cafeteria, waiting for the scan results to come back, Chris looked up from one of the many “This Is Cancer” magazines that decorate the Weinberg Cancer Building, clearly inspired by one of the articles, and asked, “Did you feel guilty when we got the cancer diagnosis?” I may be paranoid, but I’m pretty sure his eyes suggested I should feel guilty, and I reminded him that I had nothing to feel guilty for, that all the evidence against me was circumstantial and that prosecutors had declined to go forward with the case. Besides, if my nagging really caused cancer, as he claims, people would be dropping like flies all over the country. Our poor doctors and nurses would have goiter-like appendages hanging off of their faces, and without question that incompetent woman at Comcast likely would have just collapsed on the spot from a hemorrhagic brain tumor.
But apparently some people do feel guilt, anger and a whole range of emotions when a loved one is diagnosed with cancer. Mostly I felt sad and afraid. I remember looking wistfully at the milk in the refrigerator. Milk that I had bought before cancer. How I deleted the e-mail messages that I had written and received before cancer had invaded our lives. They seemed so weightless and simple – and, overnight, life suddenly seemed more complex and heavy.
Today, we learned that Chris’s disease has progressed again – that while the MDX-1106 perhaps kept it from growing more rapidly, it wasn’t doing enough to contain the disease and we would no longer be able continue on the trial. I felt sad again. No more Thursdays with Fabulous Alice. No more hope-laden infusions of the drug that we’d prayed would “melt the tumors away.” This was not the miracle we’d longed for. We hope it is for others.
But just as I threw away the pre-cancer milk, just as we moved on from life before cancer into life after cancer, we’ll move on from MDX-1106. We have a new drug to try and for that, we are thankful. Sutent was not a new concept to us; it was the first drug offered to us – and is, in fact, the first drug offered to most of those facing metastatic kidney cancer.
Unlike MDX-1106, which is mild with its side effects, Sutent is known to kick a little ass. As our oncologist, Dr. Hammers, told us in his heavy German accent: “We’re going to hurt you a little.” Chris actually laughed out loud at this because we’ve come to appreciate Hans use of the English language, and we knew that “hurting us a little” was Hans’ way of letting us know he wants to hurt the cancer a lot. He pointed out that the intensity of Sutent’s side effects varies with each individual, but he was candid, which we appreciate, in pointing out that Chris “isn’t a large man” and he expected that Chris would feel the full impact of the side effects. This is especially so because Dr. Hammers wants to use the highest dose possible; we can reduce the dosing if the side effects prove too great. We agree with, and have a lot of confidence in, Dr. Hammers. He’s aggressive, and it’s why we’ve stayed with him and will continue to do so.
Whereas IL-2 and MDX-1106 work on smaller populations but have potentially better and more durable results, Sutent works on larger populations but the results are generally more limited – both in the lesser likelihood of achieving the holy grail of NED (No Evidence of Disease) and in the fact that we know it will stop working at some point. Still, we know lots of folks who have seen remarkable shrinkage of tumors on this drug – and have in fact been able to stay on it for years. And if it gives us some time and reduces Chris’s tumor burden, perhaps our miracle will come along yet.
For now, the MDX-1106 chapter is over, but we have a new chapter to start. And I know you’re all looking forward to Chris’s extraordinary descriptions of hand-foot syndrome, mouth sores, power nausea, Whiny Fatigue Syndrome (my own medical term for what no doubt will be Chris’s excuses for not doing the dishes) and all the things we have to look forward to with this new drug.
I am sad today, but I’m also hopeful. I’ve sometimes said that living with cancer makes “hope” a lifestyle. It’s how Chris and I have chosen to approach this journey. Sad but hopeful – not a bad way to start a new chapter.