Will new immunotherapy alter treatment of kidney cancer?

by Chris Battle, survivor on February 13, 2011

This article is cross posted from The Kidney Cancer Chronicles.

This has been a difficult week. It started with outpatient surgery (let’s just say it involved the colon and leave it at that) and ended with a trip to Baltimore to meet with the medical team to discuss whether I should undergo a clinical trial.  Dena and I had to make a decision about whether to go with a proven drug regimen, Sutent, that we know will eventually quit working or to roll the dice with an unproven but possibly curative therapy, MDX-1106. Trepidation hung in the air as we drove through Baltimore. I will admit: We were scared.

Scared about cancer? No – bless your heart, we’ll whip that. We were terrified of Baltimore.

Have you been there? It makes Detroit seem like a keen timeshare destination. Watch the HBO series “The Wire,” about the drug gangs that rule the streets of the city, and you’ll get a sense of what we’re up against. We weren’t entirely sure where we were going, and as we navigated our way through the streets looking for the hospital there seemed no end to boarded storefronts and barred windows. The economy has not been kind to Baltimore (but then again, neither has its tax-happy government). We found ourselves nervously stalled at an intersection next to an adult movie theater, waiting for a loitering crowd of men eyeballing passing cars to clear out of the middle of the street. I considered buying a gram of coke just to be polite. Vera, our usually accurate and sultry-voiced GPS system, grew increasingly hysterical, repeatedly urging us to “please make a legal u-turn,” as if she just wanted to turn around and go home.  Dena became a little unhinged herself and starting shouting through the window that she had a Glock and knew how to use it. We were the Griswalds in National Lampoon’s Oncology Vacation, and by the time we miraculously pulled onto the Johns Hopkins campus, free of shank wounds and needle tracks, I wasn’t sure whether to head to the oncology ward or the psychiatry department.

Once inside the Sydney Kimmell Comprehensive Cancer Center – a long-named facility after a large man who dominates the hall via a kingly oil painting on the wall – everything changed. An efficient and kind set of nurses guided us through registration, into the little rooms for the obligatory vitals check, and then into a comfortably arranged lobby with cushiony chairs. Relaxed, I popped open a bottled water and unwrapped a donut from the café, wondering where I might be able to make dinner reservations. I found myself a little annoyed when the nurse interrupted my reverie to take me back to see the doctor.

Dena and I met in an examining room with three doctors who would comprise my research team. They were all kind, attentive and forthright in answering our questions. At times a little too forthright. I actually prefer to be misled on occasion – like when we asked about side effects and the lead doctor told me that death was one that might pose a problem. Dr. Hans Hammers, a German oncologist who previously held a fellowship at Hopkins, explained that the drug could result in autoimmune complications, meaning my immune system more or less going berserk and attacking everything in my body. Perhaps he wanted me to fully understand the risks, but he wouldn’t let the whole death thing go.

“We had one man die from pneumonitis,” he noted.

He paused to let it seek in.

“That’s a fatal side effect,” he added unnecessarily.

I wanted to ask him to humor me. Let’s talk about nausea and fatigue and that kind of thing, but I was concerned how he might respond with his thick and at times intimidating accent. Nausea? Oh, yes, we did have one woman vomit herself to death.

Dena, who attended high school in Germany, brushed the whole thing off with a wave of her hand – “all Germans talk like that.”

In the end, Dr. Hammers made clear that while autoimmune complications were a concern, they were uncommon. Most patients have tolerated the drug extremely well. The research that Dena and I have done support that conclusion. It is one reason that the oncology world is excited about the drug – it’s potential curative effect but also its contribution to “quality of life,” a term you hear quite a lot in this realm. Some drugs can extend life, to use the appropriate parlance, but make you so sick that you can’t function normally. It is entirely possible that I will experience very mild to no side effects, and in any case the drug will not likely interfere with my ability to carry on in life as normal – playing video games at work, pretending to be sick when Dena wants me to do chores around the house, doing touchdown victory dances when I beat Kate on the Wii, and feeding Josie cookies for breakfast so that I can read the newspaper uninterrupted.

I was initially disappointed to learn that I would receive 1 mg doses, via intravenous infusion. I think you know about my history with needles. Moreover, I know that the previous trial tested 1, 3 and 10 mg doses, and I wanted to go as aggressive as possible. However, Dr. Hammers explained that the evidence so far does not show that the higher dosage guarantees better results. In fact, the only complete responder (elimination of all evidence of disease) so far was a patient administered 1 mg. You can find some excellent background research on the results of the previous trial, which supports Hammers’ point, on Action to Cure Kidney Cancer’s website.

The most important statement came from Dr. Hammers toward the end of our consult. He acknowledged that he was biased in favor of MDX-1106, as one of the key researchers involved, but told me that he believes this trial has the potential to revolutionize the treatment of kidney cancer.

The team made clear that they would like to have me in the trial, provided I qualify. Luckily, I have progressive cancer and growing mets, so I meet that requirement. Now I need to make sure that my insurance will cover the trial, and I have to take a brain scan Wednesday. Brain mets would disqualify me.

Alice, the trial nurse who has guided us through every step so far, said that she would handle the insurance for us. We are grateful that she will be our primary contact, as she’s resourceful and caring. Which may sound sappy but matters when you’re in a sterile hospital ward and people are poking you with strange instruments.

Indeed, we left feeling confident in, and happy with, the entire team. Dr. Hammers is a renal specialist and clearly puts my welfare above the research objectives of the trial. Johns Hopkins has a bad reputation in some circles of the kidney cancer community. There have been, and maybe still are, some doctors with notoriously bad bedside manners, and a number of patients have departed the hospital to find care elsewhere. This reputation must have reached somebody of consequence, as Hopkins has hired a number of new physicians who bring sterling credentials and great personalities. I would include the entire team with which I met Thursday in that category.

Based on all of the above, Dena and I have decided to move forward with the trial, provided no unexpected developments arise that would disqualify me. Our reasoning is that this a drug that is not accessible to me otherwise; it has shown positive results; as with IL-2 it has the potential to result in a complete response; and even if I fail to get a response, I can always fall back on Sutent.

Driving through the streets of Baltimore seems like a reasonable risk if this new drug could potentially cure me of cancer. Besides, it’s kind of a turn-on when Dena starts waving her Glock around.

4 Responses to “Will new immunotherapy alter treatment of kidney cancer?”

  1. March 01, 2011 at 1:30 pm, The MDX-1106 Chronicles: Copious Bloodwork | ACKC said:

    […] Will new immunotherapy alter treatment of kidney cancer? // […]


  2. March 01, 2011 at 3:37 pm, Donna said:

    Not sure where this comment is going … new to kidney cancer site. I have stage IV kidney cancer. Left Kidney removed last year (Jan 2010). In March 2010 started weekly chemo (Torisel) due to numerous small nodules on lungs. Have tolerated Torisel well, and no further growth or outbreaks of cancer. On a ‘holding’ pattern. I am interested in learning more on MDX-1106. At what point did you seek other treatments? You mentioned Sutent … that was going to be my treatment, but oncologist decided on the Torisel. I live in western PA (20 miles north of beautiful Pittsburgh, home of our Penguins). I have been told that one year of same chemo is a milestone … which, of course, has me concerned that Torisel may lose its effectiveness. Please send along any and all information on your cancer/treatment. Thank you,


  3. March 22, 2011 at 3:22 pm, The MDX-1106 Chronicles: Side Effects | ACKC said:

    […] Installment One: Will new immunotherapy alter the treatment of kidney cancer? […]


  4. August 14, 2011 at 1:25 am, Karen Ross said:

    Hi Chris, I enjoyed reading your blog.

    It looks like David may be ending our almost 6 year love affair with sutent that managed kc liver mets. His med onc has upped his dosage to 50 mg, 2 wks on 1 wk off to see if this will help as his latest ct scan showed progression. If he does not respond to this the Dr. is offering him 2 options 1.) MDX 1106 trial (he has had Interferon and ILII and did not respond to either) 2.) Afinitor

    Hopefully he will respond to the higher dose but we always like to have plan B in place while Plan A is in progress. My question to you is have you found any data out there on how patients that did not respond to other immunotherapies do on MDX 1106?

    We have just begun to do our research and would love to hear any information that could help us make our decision when the time comes.


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