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Out with clinical trials, in with IL-2

Posted by on January 3, 2010 in IL-2, Medical Procedures and Other Drugs, My Health Updates - No comments


First, let me address Dena’s comment that the nurse’s remarks about my particularly advanced fitness and virility “went to my head.” What the nurse said was: “You’ve got a heart like a track star.” Well. Indeed.

Actually, the heart thing is important. Many patients don’t have the IL-2 treatment as an option due to age or poor heart or lungs. The treatment can be hard on the body – it’s administered in an intensive care unit – and so you have to meet certain fitness requirements; the side effects, so to speak, can be extreme. What’s the point of undergoing cancer treatment if you’re going to drop dead from a heart attack right in the middle of it?

On the bad news side of things, we did not get into the clinical trial. Not the end of the world, though. It would have been good to be able to stay in the DC area for logistical reasons, and it would have been even better to have the government pay for the treatment. On the other hand, and I am being honest, there is a part of me that is happy we are going to Duke nonetheless. I’ve worked for the federal government. I’ve seen the level of bureaucracy and lack of customer service – the shut up and get in line attitude – that comes with an organization that is not responsible to anybody. During my trip to Duke, I was impressed by the level of attention and good care we received from the staff, nurses and doctors during our short visit. The facilities were state-of-the art, and the medical campus was pleasant – indeed the Duke Cancer Center is actually located on the university campus, all stone buildings and well-trimmed gardens. And get this: There is a Chick-Fil-A in the hospital’s food court. If that doesn’t get your fight-or-flight juices flowing, then clearly you have no soul.

Some have asked why we couldn’t get into the clinical trial. The syphilis didn’t help. But mostly it was the fact that clinical trials are very specific research projects, with very specific protocols, and they are looking for candidates who fit very particular parameters. In this case, the only trials available are for candidates who have already tried HDIL-2 and it has failed.

Dr. George, my oncologist at Duke, wants to get started on IL-2 as soon as possible. He suggested January. However, my new insurance program (giving me a broader national network that covers Duke) doesn’t kick in until February 1, and he felt that waiting another month shouldn’t be a problem. So we’re likely looking at early February.

The treatment process itself is something like the following:

We go down to the hospital, have a port inserted into my chest, and they pump high dosages of interleukin-2 into my veins. Synthetic interleukin mimics the natural proteins of the body’s immune system. In a nutshell, they are trying to kick my immune system into high gear so that the body’s natural defenses attack the cancer cells. They inject multiple doses a day for five days. The body undergoes a kind of shock during this period. This is why the treatment must be administered in the intensive care unit. They watch for precipitous drops in blood pressure, which could cause cardiac problems, and how the weight of the fluids is impacting the lungs, which have been known to collapse under the pressure. These are some of the more extreme negative effects, and unlikely to be a threat to me unless I drink too much bourbon the night before. More normal side effects are extreme chills, rigors, fevers, nausea, hot flashes, sweats, etc. Here is a passage from text listing some of the side effects some individuals face: swelling of the face, swelling of the feet and hands, jaundice, peeling all over, rashes, tingling in the face, low blood pressure at times and high blood pressure at other times, agitation, hallucinations, headaches, nausea, fever, dizziness, itching, weight gain (due to fluid injections), weight loss (due to illness and loss of appetite), etc. Luckily, most of these sides effects are not long-term and abate after the treatment is over.

After a five-day course of treatment in which the doses are injected around the clock, as I understand it, and, provided your body does not reject it or react too adversely, then you are given two weeks to recover. Then you return for a second cycle. Same thing all over again: IV into the port, nasty excess fluid pumped into you like a frat boy with a beer bong, chills nausea fever hallucinations and other symptoms reminiscent of pregnancy, and then another two weeks off. Except that, after the second cycle of treatment, they then wait for another six weeks to see of the treatment is having any effect. If the tumors show shrinkage, then we start anew with several more cycles. If no response is evident, then we call it quits and look to Plan B. Which will likely be the drug Sutent.

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