Renal Cell Live!

Thursday, June 15, 2006

Joys of side effects

Ah, side effects. Right now I'm sitting in my living room with a bandana over my shaved head - first my hair turned white, then grey, then started falling out by the handful. The most reasonable thing to do was to get clipped. I only wear a bandana or hat if I'm cold or if I'll be out in the sun. Then there's the blistering around my eyes, and buildup of dead skin cells on my face. And, of course, the sun sensitivity, the fatigue, and the high blood pressure. When I was on the full dose of Nexavar I had a bout with confusion that required hospitalization, and the beginnings of hand-foot syndrome, where nerve impulses are so erratic that the brain can only interpret them as pain and people can suffer permanent damage.

These are mild side effects, compared to some that I've had in the past year of therapies. Last fall I ended up in the hospital 4 times with internal bleeding, and the last episode nearly killed me (requiring a LifeFlight to an ICU unit at OSU hospitals). Nothing like a very expensive ride in a helicopter that one can't enjoy - the windows are pretty small and one tends to be hampered by tubes, needles, and hovering medical attendants. The internal bleeding arises from esophageal varices, related to portal hypertension which is in turn caused by the liver damage from the tumors, and exacerbated by the drugs taken to starve the tumors. Think internal varicose veins and you sort of get the picture. I suspect I'll be a "black box warning" case for Sutent - one of those "In very rare cases individuals have developed [blah blah blah]" statements disclosed in patient information leaflets and the voiceovers on advertisements. Such an honor, I must say. The bleeding was combined with extreme mental confusion and lack of concentration - I believe I have memories of doing a rather good James Brown imitation in a hospital room but I could be mistaken.

Last summer I was fatigued to near immobility and lost distressing amounts of weight, with diarrhea and almost constant stomach upset. Last winter, with the high-dose IL-2, I had freqent problems with blood gas imbalances leading to hospitalization, diarrhea, confusion and loss of appetite. On the whole, though, I tolerated the medication better than most people do - too bad it didn't do anything for me. And for most of the past 18 months I was freezing all the time.

What's amazing about all of this is the resilience of the human body - it takes so little to put all your systems out of whack, but it takes correspondingly as little to get things back in order again. Much of the time spent in hospital has been spent tinkering with medication and dosages and, for now, my body just sort of bounces back. Maybe it helps to be a stubborn Swede. Also amazing, of course, is that the will to live is so great that people willingly go through all of this in hopes that their disease will be conquered. I feel pretty lucky - almost everything I've gone through can be controlled with medication, and only the internal bleeding was really frightening.



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