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The Kidney Cancer Chronicles: Why Put Off Sutent?

Posted by on September 20, 2011 in My Health Updates, Sutent, Targeted Therapies (Sutent, Afinitor, Cabo, etc.) - 5 Comments


I’ve started suffering the first of the side effects from the new drug regimen with Sutent. The prescription comes with a long list of potential side effects – indeed there are entire websites dedicated to them – but nowhere have I seen this particular adverse reaction: Severe Golf Swing Debilitation. On a beautiful Sunday afternoon I went out and played some very ugly golf. It couldn’t have been my fault and so I’m looking for a 1-800 number to call Pfizer or the FDA and tell them they need to update Sutent’s Black Box Warning: “Sutent can cause serious liver problems, including death – oh, and appalling golf.”

Other than Golfus Morbidus, however, I have not felt any side effects. I don’t think. I’ve been a little tired, but I’ve had a lot going on over the past week, including a Scooby Doo Wii marathon with my daughter. I thought I was special, but some friends of ours told us that they had not experienced any side effects on Sutent for about two weeks.

So, we’ll wait and see.

A note to our many friends in the kidney cancer community who have asked why Dena and I have been opposed to going on Sutent.

Well, first, because one of the warnings that came with the drug was that it can cause dizziness, which will be made worse if taken with alcohol. And, really, who wants to go on a drug that can’t be taken with alcohol?

That said, we’re not opposed to going on Sutent. Sutent remains the first line of defense for many people with kidney cancer. And the drug has produced wonderful results for many. In one sense, it is a relief to be starting a treatment regimen with a well-documented record of success in fighting this uncommon cancer.

So why didn’t we start off with Sutent? As Dr. George, our oncologist at Duke, put it: There are only so many tools in the toolbox to fight kidney cancer, and we should try to use them all. It’s a question of sequencing.

I opted to start with High-Dose Interleukin (IL-2) because – well, because I could. Not everybody can undergo IL-2. It is a brutal treatment with dangerous side effects that must be well managed in an intensive care unit at a hospital that has experience administering the drug. Many patients are denied the opportunity to undergo the treatment because of physical limitations – you can’t be beyond a certain age or fitness level, for example. You can’t have any heart problems. Others do try it but must stop because of the severity of the side effects. So why go through all of that? Because IL-2 is the only FDA-approved drug that can result in a durable complete response – our buddy NED (No Evidence of Disease). I didn’t want to “extend life” but to live it indefinitely. Morphine drips and a few hallucination-fueled sweaty nights seemed well worth the effort.

Sure, it didn’t work. But I’d do it again. And I’d advise anyone who can undergo the treatment to seriously consider it before immediately jumping to Sutent.

When the IL-2 failed, we decided to try lung surgery. Duke has a renowned thoracic surgeon who was able to remove all the mets from my lungs. While we knew that the mets would eventually return, our hope was that it would give us a couple of years before that happened. And when it did, then we could consider Sutent.

Unfortunately, the disease came back more rapidly than we expected. (Almost immediately.) At that time, we considered Sutent but decided to try the clinical trial with MDX-1106. Why? Because although the research was limited, the oncology realm was abuzz about the positive results associated with the drug. And the side effects were minimal.

So, okay, this failed too. Not the drug necessarily, but my treatment on it. I failed it, but that doesn’t mean others will. Clearly MDX-1106 works on some people. The question, to me, is whether it ends up working on a small percentage of patients, like IL-2, or whether it proves effective to a far greater number of people. The research is too early to tell what level of dosage will work best. I was assigned a low dosage – 1mg. Others have tried 10mg. I hope that they find the right dosage level and it proves to be an effective therapy. It offers hope of a durable response, like IL-2, but with few of the debilitating side effects. It could prove to be a wonder drug.

So now we turn to Sutent.

We have a lot hope with this drug, but we’ve put it off, hoping for success with the other treatments, because we know that Sutent’s progression-free survival rate is limited. A median of 11 months. Of course, that’s a median – and many have survived with Sutent’s help for years. And our hope is that we too will live with it, and live with cancer, for years to come. If, when, the drug does stop working there may be new treatment options available to us. I haven’t given up on the coffee enemas, for example.

Finally, we waited because we knew that Sutent would destroy my golf swing. My doctors have taken numerous steps to manage this particularly cruel side effect. They’ve sent me Jack Nicklaus videos. They purchased a subscription to Golf Digest. They’ve hooked me up to IVs to keep me hydrated while feeding me a diet of the Golf Channel — 12 hours on, 12 hours off. They brought in the uncle of one of the nurses who had been a golf pro at some Texas country club back in the 70s, but after numerous trips to the range he just threw his clubs down in disgust and stomped off, cursing me and Sutent both.

Now that I can blame my awful swing on drugs, I’m ready to move forward full force. I look forward to blaming a lot of things on Sutent. Come to think about it, I probably should have started a lot sooner. There are so many chores I’ll be able to get out of.

  • Richard Catlett

    After an 18 month run on Sutent I did the only prudent thing…I gave away my clubs. I did achieve NED, however the golf game was gone forever.

  • jimmy stewart

    i have kidney cancer they want me to start on suntent but i dont know what to do is it a drug that can help in some way

  • Richard Catlett

    After an 18 month run on Sutent I did the only prudent thing…I gave away my clubs. I did achieve NED, however the golf game was gone forever.

  • Jim Stewart

    i have kidney cancer they want me to start on suntent but i dont know what to do is it a drug that can help in some way.

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