A New Chapter Begins: Goodbye MDX-1106, Hello Sutent

by 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.

7 Responses to “A New Chapter Begins: Goodbye MDX-1106, Hello Sutent”

  1. September 10, 2011 at 12:15 pm, Bryna said:

    My heart goes out to you both, Dena. Wishing for the best for Chris with Sutent. Sending good energy your way.
    [RCC Stage I/II dx’d 12/94, L rad neph (“old school”)
    NED thus far]


  2. September 19, 2011 at 2:46 pm, Mike said:

    Your article warms my heart and I reflect that you’ve got this sucker down.. .There is so much that you have no control over. Its your attitude that you can. . You can make yourself (and others) miserable or not. . your choice. Cancer has a broad enough impact, lets not add to it if we don’t have to.

    [RCC Stage IV, dx 11/07, various surgeries, IL2 5/09, NED 11/10. . and Praying for you]


  3. October 07, 2011 at 6:39 pm, Joe bono said:

    Hi Chris, I am a 50 yrr old never smoker diagnosed with stage 3 lung cancer almost exactly 8 years ago (10/2/2003) . I have been stage 4 for the last 6 years, and even survived thevremoval of a large brain met in the occipital lobe of my brain in November of 2006 (5 years ago – with no recurrence there). I have done a vaccine for lung cancer at the NIH in Bethesda, md, and just recently finished 3 cycles of mdx 1106 atvthe university of Michigan near where I live. My results were similar, ct 1- progression (inumerable’ nodules in the lung did grow a bit, but I argued it was inflammation from the immune response and they let me keep going), ct 2- stable/ reduction in tumors. I was right, and asbu have stated immunotherapy takes time. Ct 3- progression, on to something else. Theybare verybreluctant to let me continue afraid of lung pnemunitis whichnin my case could be fatal. Are we giving up on this too soon? I have read melanoma cases were it took a year for the immune system to really kick in and work. Email me if you want to discuss boon_Joe@hotmail.com. Thanks Chris!


  4. November 03, 2011 at 3:48 am, Lynn said:

    Perhaps he can go back on MDX 1106 after the tumor burden is minimized. Lynn


  5. November 08, 2011 at 5:58 pm, Cari said:

    I would very much like to communicate with you. My husband was diagnosed with kidney cancer last month.


  6. April 05, 2012 at 2:30 am, Dennis said:

    I haven’t Googled RCC or MDX1106 for some time and a friend was just diagnosed with Bladder cancer so I googled MDX 1106 to see what was new. but my experience also with Alice and Dr Drake at Hopkins was the opposite of you. Hello MDX1106 – Goodbye Sutent. I was diagnosed with Stage IV RCC in 2007 and went on Sutent after surgury. After mixed results my oncologist who interned at Hopkins got me in a trial in 2008, Panozipib with Sutent and it initially worked (with side effects) but eventually my Neutruphils were depleted and after several reductions in both Sutent and the other drug, my tumors grew again. Sutent dosage of 50 mg is just not enough to control the cancer. I then got on the MDX trial two years ago. after one year of infusions every two weeks my lung tumers disappeared but my lymph nodes would not reduce and they stopped the treatments. Finally one year after I stopped, (lymph nodes remained about the same size) – CT scans were called “stable metestatic disease”, I had a PET scan and lo and behold NO CANCER. The MDX WORKED. So after 5 years of ups and downs, surgery and two drug trials I am now disease free. I am not taking any medication and couldn’t feel better. Just wanted others to know that my experience is that MDX1106 is a miracle drug. So don’t give up on it yet.


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