Tag Archives: medicine

An Important FDA Safety Announcement for my Donor Stem Cell Transplant Brothers and Sisters

FDA warns about increased risk of cancer relapse with long-term use of azithromycin (Zithromax, Zmax) antibiotic after donor stem cell transplant

The French study which the FDA based a recent safety announcement on had to be discontinued after two years because the rate of the return of cancer and even death was too high in those patients with cancers of the blood or lymph nodes who undergo a donor stem cell transplant and were taking the antibiotic azithromycin (Zithromax, Zmax) long term to prevent a certain inflammatory lung condition [LUNG GVHD/BOS].

While this FDA Safety Announcement focuses on those taking azithromycin long term as a measure to prevent Lung GVHD/BOS, if you’re like me and you have been taking it long term to treat Lung GVHD/BOS, you also might want to discuss this announcement with your oncologist and consider whether or not the risks exceed the benefits.

After discussion with my oncologist I have decided to discontinue taking the antibiotic after having taken it now for over eight years. I will undergo a PFT in a couple of months to see if there has been any further degradation to my lungs as a result of discontinuing the drug.

You can read the full FDA announcement here and you can read the announcement from the drug manufacturer here.

Best of luck to you all.

#vote

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Kurt receiving acupuncture treatment for his many ailments

The Purpose of Pain

When it comes to physical pain, it’s purpose is hardly in question: It focuses us to where our immediate attention and action is required.

We accidentally rest our hand on a hot stove top burner and, without our sense of pain, our hand, if it weren’t for our sense of smell, would become cooked well enough to serve up at the next meal.

We could laugh at this, but sadly and horrifically there are some who do not experience the sense of physical pain due to a rare condition known as congenital analgesia.

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One Night

dilantin-induced hallucinations
busulfan and fludarabine-laced dreams
black outs and cold sweats

It’s 2:00 a.m. There is a blue glow to the room as I lie on my back trying to sleep. I’ve been trying to sleep for a long time. My toes burn and my back is hot. My skin itches. The black motion of sleep hovers right above my eyes, slowly rolling back and forth, and up and down, and in and out, like lava in a lonely lamp. I pray for it to come down and put me under. Occasionally I feel its numbing tingles of unconsciousness seductively pulling me down. But just when I think to myself that I’m finally falling asleep, it pulls back and continues its slow dance right beyond my reach. After each tease, I am more awake than before. I want to change positions but I know that if I do the black motion of sleep will disappear completely. I don’t want to lose it so I will not move. No matter how hot it gets between the mattress and the back of my body, I will not move. No matter how much my skin itches, I will not move. My hand pulls to try to scratch at the itching, but I will not let it go. As I continue to watch the black motion of sleep and feel myself not moving, my head becomes heavy, much too heavy for the pillow. It is so heavy I no longer have the strength to hold it atop of the pillow and it begins to sink as if it were lying in quicksand. I must finally be sleeping I think and I feel relieved. But the black motion of sleep is still there, hovering out of reach. I am still awake. My toes still burn. My back is sweating. My body itches more than ever. I am still awake and yet my head continues to slowly sink within the pillow. My ears disappear and all of the low, humming hospital sounds are muffled out. I only hear my nervous breathing. My head continues to sink and I can’t lift it up to stop it. Soon my mouth will go under, then my nose, and then I won’t be able to breath. I know I have to force myself to lift my head out of the pillow before I suffocate but I can’t move. I try with all my might but it just continues to sink. If I can move something, open an eye, wiggle a toe, cough, anything, my head will stop sinking and I will be okay. But I can’t. I can’t move anything. Nothing moves. I am in a moving car, standing where front seat passengers normally sit. My head, upper body, and most of my legs extend through the top of the car. I look down to see who is driving but it is too far down and all I see is a shadowed figure behind the wheel. The night wind is cold on my face and I enjoy the sensation of standing while the car moves. I feel as if I am flying. We are on a familiar road, Campbell Road, and I see that the cows are not in the field. Their barn is dark. There are so many stars out the night sky appears as bright streams of light. I’ve driven down this road many times. It’s the way home. The Susquehanna Trail is up ahead and I instinctively feel my body trying to slow itself down in preparation for the stop. I see the stop sign in the distance but it doesn’t seem as if we are slowing down as we should. I try to communicate with the driver but the wind will not let any sound escape from my mouth. I try to squeeze myself down into the car but I am too big. The car begins drifting to the right. The right side tires bounce off the road and onto the shoulder. Gravel kicks up. Up ahead, parked on the side of the road, is a State Highway Patrol car. We head directly for it. I panic. I bend over at the waist and lean over the outside of the front window to look into the car so I can see who is driving. My wife is asleep behind the wheel. I stand up to cover my face from the crash but at the last second our car swerves away from the cruiser and makes the left turn without stopping, barely missing the oncoming cars. I scream. I look back, expecting to see the flashing lights of the cruiser in pursuit of us but the car remains parked on the side of the road. We have a right turn coming up quickly but our car drifts across the center line into the path of another oncoming car. The car swerves into the other lane and misses us. We continue drifting more into the left lane until we are once again driving with half of the car on the shoulder. Cars continue to miss us. We drift all the way off the road and into the grass and head directly toward a large tree. I hold my hands out in front of me to try to prevent the crash. As the front of the car crashes into the trunk of the tree, branches whip my face and my fingers grab for them. It’s 3:00 a.m. I have to pee. I lift my head and I feel woozy but I have to pee so I rush out of bed. Standing, I really feel woozy, drugged up even. I unplug my IV pump and wheel it with me. The bathroom lights hurt my eyes. My vision is blurry. I reach down for my urine decanter and the blood rushes to my head. I stand up feeling dizzy and unstable. I begin filling the decanter. The dizziness doesn’t go away and my legs begin to feel weak. My mouth begins to water. I feel a tingling sensation moving up my body and tiny black spots begin appearing before my eyes. I’m going to black out. I have to get back to bed before I do. But I haven’t finished peeing. I feel bile rising up my throat. The black spots get bigger. I can’t pass out yet. If I fall and hurt myself it may jeopardize my transplant. I feel sick. I have to puke. I finish going to the bathroom. I fumble with the lid as I try to snap the decanter shut. The floor spins as I bend down toward it. I set the decanter down and stand up. My head spins and I totally black out. Blind, I grab for my IV pump for stability. I push the pump in front of me for protection as I head back to bed. I make it. I sit down and feel my body rushing in every different direction. I see nothing but complete, pulsing black. It’s hard to breathe but I force deep breaths. Cold sweat emerges from every pour of my body. The cool dampness is relieving and calming. My stomach settles. I lie back down in the bed and watch the black spots slowly disappear as the blue glow of the room returns.