The burden of uncertainty and the search for a new cancer treatment

What do the doctors say?  That’s what people keep asking us now that Chris’s third treatment (and second surgery) has failed.  Do they know what you should do next?  The short answer is no.  The long answer is no, too. While trying to be helpful about potential treatments, they acknowledge for the most part that they just don’t really know. We still have options, but the doctors can’t really say whether one might be better than the others. Neither can we.

Chris and I have poured through pages and pages of clinical trials, read articles on Molecular Cancer Therapeutics, subscribed to daily web updates from various cancer research sites, conferred with fellow patients and, of course, conferred with our oncologist as well as other specialists in the field.  We’ve always tried to stay one step ahead, with a plan in place if a treatment failed.  But now we find ourselves in a more frightening place – further up a mountain, where the terrain is steeper, rockier and the air more thin.  The paths forward aren’t clear, and there’s no view around the bend.

Two of the trials we’re reviewing are early phase I trials.  Yes, that’s redundant because phase I by definition means early.  But these are really early phase I trials – barely out of the mouse trials. In fact when the trial nurses see Chris, they seem genuinely surprised that he’s not a mouse.  When we did the MDX-1106 trial, it was also phase I — but it was the hot new therapy that everyone in the renal cell medical community was whispering about.  Like the great new rock band that all the college kids are listening to but hasn’t quite hit the mainstream yet.   These new trials don’t even have a garage to play in.  One trial we are considering – IL-15 – has had a grand total of 12 people undergo the treatment. Twelve. Not just twelve kidney cancer patients – twelve total. In the world.

I e-mailed one of the doctors who is running the IL-15 trial at the National Cancer Institute in Bethesda.  I’ve become really bold about just randomly e-mailing doctors and assuming that they’ll get back to me.  (Odd little secret, they actually usually do.  My track record is 100 percent.  Thank you doctors!).  Not only did I e-mail this doctor, I just flat out asked him: Do you think that this drug will work for my husband?  He wrote back (I told you, they always do!)  The answer was, of course, “I don’t know.”  And in fairness, how could he offer any other answer. However, he was kind enough to send me a long response with data attached – data that told us: “You could try it – it might work.”  And he’s right. It might. Maybe. Who knows?  Picking clinical trials (treatment regimens in general, really) is starting to feel more like buying lottery tickets– and that’s not a great feeling.

If we don’t do a trial, we do still have a number of FDA approved therapies to choose from.  But they’re the class of drugs that elicit this kind of response from doctors, “Sure, you can try it … although I’m not really excited about it.”  I vacillate between appreciating the honesty and wanting to scream “This isn’t a new flavor of ice cream we’re talking about – it’s my husband’s life!”

The weight of these decisions is so shockingly heavy that it’s almost comical.  And it’s not just the obvious life versus death factor – each choice has repercussions for future choices.  If we do a c-MET inhibitor now, it could make Chris ineligible for a promising new drug that hasn’t yet gone to trial.  But then again, he might be ineligible for that drug down the road anyway, and forgoing the trial now might mean missing out on a key component to battling his disease.

Chris and I will sit down and discuss the pros and cons of this treatment plan or that one. At one point we kind of stopped and laughed. The cons were numerous in each case while the pros pretty much boiled down to one: It might work.

At church on Sunday, this is what I prayed about:  I always pray for a miracle.  But then I also pray for wisdom and courage.  And strength. As with the doctors, I don’t get an answer.  I do, however, get a sense of peace and, I feel, a little bit of renewed strength.  I’m reminded to make each decision with hope – and faith – even when we’re this far up the mountain with no clear way to get back down.

More from Immunotherapies (IL-2, IL-15, PD-1s, etc.)

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