Neupogen & Neulasta: Buckle Up for a Wild Ride
Among my fellow cancer survivors, those who have experienced Neulasta or Neupogen find the TV commercials about those drugs hilarious. In the advertisements, it looks marvelous. A woman traipses through a garden in bloom, a delighted recipient of a miracle medication that allows her to continue chemo despite being neutropenic, meaning that her neutrophils and white blood cell count have dropped to a dangerously low level. If the advertisers dared produce a more accurate commercial, the breast cancer patient would be strapped into a roller coaster, issued a warning to hold on, and then immediately drop into a freefall. She would skid through a series of hairpin turns, hanging upside down for extended periods, while a corkscrew drills directly into her bones. It is less stroll through the tulips and more barrel rolls alongside Maverick in Top Gun.
Chemo causes neutropenia and once a patient has entered the immune-compromised basement, any infection may be fatal. The body lacks defenses to protect itself from invaders even as the chemo show must go on. Neulasta and Neupogen, two variations of the same type of medication, come to the rescue by forcing bone marrow to create more white blood cells. With the boost they deliver, the cancer patient develops a modicum of protection against infection even as chemo pushes the immune system’s gas tank to empty.
After several rounds of Abraxane dropped my neutrophils to a frightening low level, the oncologist decided we couldn’t risk infusion that week. Massively disappointed, I protested loudly because chemo represented my best chance at escaping a terrifying cancer. I didn’t want to miss a drop. My oncologist said we had no choice but to hold up while I was prescribed Neupogen, which required that I inject in my abdomen several days in a row. If I found the courage to grab a fold of skin and plunge the needle in, I wouldn’t have to return to the hospital for professional intervention. Most importantly, Neupogen should deliver me to the Promised Land whereby my weekly infusion schedule could get back on track.
My habitual reluctance to investigate potential side effects left me unprepared for the experience of Neupogen. Following my first dose, I awoke in the morning with the unwelcome and alarming sensation that my body was coming apart from within. Like a distended Green Gumby figure, I felt like silly-putty pulled thin. It took hours before I connected the bizarre sensory experience with Neupogen and, in the meantime, I feared something had gone terribly wrong. An intense, vibrating pain relentlessly pounded in my back, causing me to wonder how I had injured myself to such a degree (I couldn’t recall any incidents). The sensation expanded and fluttered, like it sprouted wings and intended to lift off from my hips. I soon felt like a pinball machine come to life, with a bouncing ball of bone pain and muscle aches stretching from the bottom of my feet into my hands, and soaring up to my shoulders. My bones felt like jello and there were moments when I couldn’t stand up straight. I feared that I wouldn’t be able to walk or drive my car. My body felt like a rubber band that had been extended to its limit and held in this elongated and unnatural position for a good long while before being snapped back into place. The entire ordeal was topped off with a heavy dose of nausea.
I pulled out my yoga mat and tried all manner of stretches but the expansive, vibrating sensation only intensified. I felt certain that I must have developed metastasis to the bones, which was particularly discouraging because if the cancer had gotten loose while we were gunning for it with chemo, I was in serious trouble. Filled with dread, I resolved to call my oncology team later in the morning and request guidance. I anticipated grim news.
I arrived at my office twisting like someone in opiate withdrawal, unable to stop moving my arms and legs. During a virtual meeting I continually shuddered on camera. With my lower back threatening to detach from my spine, I couldn’t sit in my desk chair. I knelt on the floor to type and answer email.
At some point during the morning, it occurred to me that this bizarre experience might be due to the Neupogen injection. Immediately, I searched the internet and pulled up information about side effects. Bingo! The symptoms checked all the boxes and I was flooded with relief. No bone mets! Just my bones being mined for blood cells by a very aggressive and cantankerous medicine. Taking direct aim at the bone marrow, the factory for the white blood cells, Neupogen prodded my core into a sudden and vigorous production.
I took an Ibuprofen and by early afternoon, the side effects had dimmed to a dull roar. Even so, my knee was still vibrating when I arrived home that evening.
Of all the varied experiences associated with cancer treatment, Neupogen was by far the most surreal. But damn, it delivered as promised. The following week, my white count soared to an all-time high and my neutrophils landed in stable territory. We were back in business and I was once again hooked up to the chemo pole.
Those TV ads got something right. It was indeed convenient to inject at home and avoid travel back to the hospital. Now if they would only tell the rest of the story!
Yikes, Clare, the physical discomfort is bad enough but worse are the fears that bubble up with the unknown sensations. I’m glad you can laugh about it now!
If only I had bothered to look up the side effects, I could have saved myself a lot of trouble. I can tell you that ALL of us who have had Neulasta or Neupogen laugh at the commercials. Thanks, Lynne!
Oh my, Clare, what a story. I’m not familiar with this drug and while it did the trick (Thank God!) what a miserable, frightening thing to go through. This reminds me of how many people, when informed that chemo was in progress, would say “What doesn’t kill you makes you stronger”. Now officially one of my least favorite comments of all time. No, what doesn’t kill you makes you feel like you’re dying. And that doesn’t feel like strength, rather it’s a terrifying, painful, demoralizing, exhausting feeling. And then it works!! But dang, you still had to go through it and that is not trivial. Love from us both here in A2.
Everyone I know who has taken Neupogen or Neulasta has had a similar experience. One of those things that is hard to explain until you live through it. Thanks for checking in and much love to you and S!!!
I had no idea about those side effects! What an intense and scary experience! I pictured you on the floor answering emails. Of course you would do that, not missing a beat. I don’t know anyone as strong and resilient as you are, Clare!
I’m so happy that this experience is behind you and I hope you get relief soon from the lymphedema!
Love from all of my family!
Chris
Thank you, Chris! I truly appreciate all your support throughout the past 5 1/2 years. Much love!
I was on Neulasta, and completely agree that those commercials of patients running through fields and enjoying a ride on a sail boat are amusing!!! I felt extremely ill when it kicked in, sometimes so ill I had to resort to a wheelchair. The oncologist advised me to take Claritin…yes an allergy medication, a week prior to receiving the injection. To my amazement it actually worked. The side effects were not as bad, but still not great!! Thank you for sharing!
Oh – good point about the Claritin. Thanks for the reminder. We’ve been on a crazy ride!