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New IL-2 Side Effects: Muscle Pain, Drunken Stagger and Jimmy Durante Nose

Posted by on June 26, 2010 in IL-2, Immunotherapies (IL-2, IL-15, PD-1s, etc.), My Health Updates - No comments


Okay, seriously, who kicked hell out of me? I feel I should be in one of one of those salacious tabloid stories: Psychopathic Monkey Beats Man with Stick! (Which, by the way, also happens to be the title of a screenplay Dena is working on).

Every hour of every day the nurse or the assistant would come in “take my vitals” – blood pressure, heart rate, oxygen, temperature, etc. And during each visit they would ask if I had any pain. Other than the emotional pain of having embarrassed myself passing out on the bathroom floor – setting off a chain of ward-wide alarms, panic and horror-stricken nurses saying, Look this way, honey, no this way, don’t shut your eyes, can’t you see me, how many fingers am I holding up, who’s the president,  hey! Look at me! – my answer was always, “Nope, no pain.”

But it’s Saturday morning, now, and there’s no nurse here to ask if I’m having any pain. I feel like I’ve gone and worked out for the first time in years. There’s not a muscle in my body that isn’t sore. I get in and out of the car like an old man, using my hands to help lift my legs in and out of the carseat.

Enough. Whine #1 is over.

Here’s Whine #2: I can’t walk straight.

My line-of-sight and mental imagery may set me on a perfectly straight line of forward movement, but my legs rebel and go in a different direction. This is a new kind of dizziness, different from what I’ve previously reported. I’m not even sure dizziness is the right word. I’ve had dizzy spells consistently since the last round of IL-2. Nor is it another round of vertigo. What I’m experiencing now is different from that. It’s more like slow-motion drunkenness, the kind of drunk who keeps a flask taped to his leg and drinks all day long, right before your eyes without you ever seeing it, one who never acts openly hammered but, if you watch carefully, you notice that he sometimes brushes up against a wall or misses that third step in the stairwell.

Unlike with the dizziness, I’m not worried about passing out. Which is a good thing. There has been too much with the passing out. The entire 9th Floor at the hospital was terrified of me. Every quarter to half hour I was asked if I felt faint or dizzy. I was consistently deemed a “fall risk” and forced to wear those canary-colored “extra grip” padded socks, which were meant to prevent me from randomly slipping, as well as one of those Lance Armstrong-style wrist bracelets, also of the canary variety, that stamped a public Scarlett Letter on me that said Beware all ye who approach this man, he lacks all reasonable motor skills and may collapse upon you or otherwise embarrass you with unexpected bodily acts which may include but are not limited to vomiting, bleeding, stumbling, strange hand gestures and asking awkward or inappropriate questions.

Ok, Whine #3.

I have Jimmy Durante Nose. Not the size thing. I have developed, what, a rash? Each round the IL-2 has wre

aked some kind of havoc on my skin. (A round constitutes two separate weeks of treatment, the first trip to the hospital is referred to as 1a, while the second trip is 1b, with both of them constituting Round 1.) Round 1a was the worst on my skin by far. My face was literally scabbed in some areas, and skin fell off me for nearly two weeks. Both cycles of Round 2 resulted in ongoing chafing (rather than outrigh peeling, which was progress). This third round, knock on wood, seems the least peely of all.


Except for this Jimmy Durante thing. Maybe Durante is the wrong comparison. Or I should clarify the late-stage Durante – that is, a nose that is continuously red from broken blood vessels just beneath the skin, usually due to too much drink. Maybe injecting intravenous doses of IL-2 is not unlike pounding shot after shot of whiskey. The good news is that the redness and chafing seem to be fading already.

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