What No One Told Me About Lung Cancer, Prednisone, & Bone Loss 

May 25, 2025

Dear Reader,

Hi. Long time, no see. This is not due to boredom or lassitude. Au contraire, Pierre, if things get any more interesting, well, I just don’t know.

It appears I started a new job when we returned from New Zealand, as composer-conductor of a complex, multi-layered symphony. Sometimes it’s more like a jazz cacophony. Or, lately, a traffic jam.

One theme goes like this:

The night before a PT appointment, I wake up at about 2 a.m. to find my left leg swollen and discolored. Pulmonary embolism is always the first thought, so the internal debate begins: go back to bed or to the ER? Except the car is in the shop due to the bumper being ripped off and a cab would take forever…so I compromise: I’ll make an urgent care appointment for after my PT appointment—no sense going to the ER unless you absolutely have to, right?

Morning comes. I catch the bus to PT, but the appointment runs long and I miss the streetcar to urgent care. No problem, I call Lyft and skid into the office right on time. In the exam room, I tell the P.A., “Your job is to tell me I do not have to go to the emergency room.” He grins and pulls a stool over to poke at my leg, then sits back with a sorrowful look. “I’m so sorry…” he begins. “Oh, man,” I say, “You had one job. One.” “I know,” he says. “I’m really sorry. I’ll call them and let them know you’re coming, how about that?”

Lyft again, then the typical ER experience: waiting, more waiting, followed by scary machines: x-rays, vascular ultrasound, who knows what else, and finally a dopey verdict. The swelling and discoloration is probably my body’s attempt to flush inflammation from a really bad fall I’ve taken more than a week ago, after tripping on a lousy sidewalk. <sigh> At least it’s not a pulmonary embolism.

Is it luck that I have a previously scheduled appointment for a bone density scan just a few hours after being spit out of the ER? I hole up in the hospital cafeteria until it’s time. After the test, I peek at the screen, catch sight of a note on the test order saying something about “high doses of prednisone.” Sweet chimes start to sound a new melody, which quickly fades as I page Lyft again– there’s stuff at home to do.

Think of this next tune as the “folks at home” theme. My mom, who lives with us, has extreme spinal stenosis and overall spine degeneration. The back pain has become severe. Who can help? Research, appointments, tests, consults: primary care (like a chorus between verses of an endless song), spine center, PT, acupuncture, a pain specialist…. To try to cope, I drop one of the classes I’m auditing and hang on for dear life in the one I’ve kept.

Remember the new bell-like tune that started a few paragraphs back? It makes a full-on debut during a primary care visit for my mom. The doc says to me casually, as she types on her computer, “Oh, I got your Dexa scan results. You’re on the border of needing medicine for osteoporosis.” The new theme swells climactically as she tells me to do as many squats and deadlifts as I can, then quiets as she returns attention to my mom.

The problem is, I’ve done some weird thing to my shoulder (hence the aforementioned PT) and can’t do weighted squats and deadlifts. Anything the PT has tried sets me back. No road bicycling, no gardening. Can you hear a distant rumble? It’s the big percussion section warming up.

I’m at the gym, working out a routine with the trainer and it’s very hard. I’m in the car on the way to appointments. I’m watching my mom’s face collapse in pain as she pushes up from the dinner table. I’m supposed to be cutting down inhaled asthma steroids, but my old pulmonologist retired and the first available with the new guy is on August 5. “Thanks,” I say sweetly. “Until then, what should I do about the steroid inhaler?” I’m switched to the physician assistant, who says she will check with the doc, who might want to see me, and the next day I get scheduled for a video call the following week. I’m doing my PT exercises and trying to pretend my shoulder is better, and yes, I can raise my arm over my head (Hallelujah!) but that’s not enough to support the robust weed-a-thon my garden needs. Hell, it’s not even enough to carry a cup of coffee upstairs.

Oh, coffee. I’ll get to that later. It’s a humdinger of an ending.

By now the orchestra is careening along. I have no choice but to let it caterwaul—I become paralyzed if I look at my calendar to find an open hour when someone can call me.

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Them Bones, Them Bones…

Who knew 7 months of high-dose prednisone would suck the life out of my bones? Because that’s what I’ve learned: prednisone can save your life, but it can also give you osteoporosis.

(For those who missed the first year of my cancer experience, I faced life-threatening pneumonitis. Many people with lung cancer get pneumonitis. If it doesn’t resolve itself, the standard treatment is a course of high-dose prednisone, or, if the inflammation doesn’t respond, hospitalization. I was lucky—I responded. But it was a pretty high dose—80 mg—and whenever docs tried to taper me off the drug, my lungs seized up again. I remained on prednisone for months with no idea what it was doing to my bones.)

Osteoporosis seems like no big deal when you’re younger. Up until your early 20s, your body has the ability to make new bone faster than it breaks down old bone tissue. But as you age, old bone tissue can break down faster than it is created. This can cause your bones to become more porous and fragile, resulting in osteoporosis, which can increase your risk of bone fractures.

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That still doesn’t sound like a big deal, until you learn that if someone has osteoporosis, they can break their backs by sneezing. And mostly, people don’t know they have it until they’ve already broken a bone. By then, their lifespan has begun to shrink and they don’t even know it.

According to the International Osteoporosis Foundation, globally, 

1 in 3 women over age 50 and 1 in 5 men over age 50 will experience osteoporosis fractures. The effects of spinal fractures can cause a person to become shorter because these fractures can shorten the spinal column. In some instances, bone fractures may require surgery.

According to research, bone fractures can increase your risk of disability or death. Hip fractures, in particular, are associated with a 15% to 20% increase in mortality within a year, especially among men. Osteoporosis can also cause bone pain that can affect your ability to perform daily activities.

Let’s put that in further context. The International Osteoporosis Foundation also says, 

A 50-year-old woman from the US has a 2.8% risk of death related to hip fracture during her remaining lifetime, equivalent to her risk of death from breast cancer and 4 times higher than that from endometrial cancer.  (Cummings et. al. 1989).

I’ve been working on a plan to build bone density without ever taking bone building medication. My dear friend, who died last year of Stage 4 lung cancer, spent his last months in excruciating pain from necrosis of the jaw, brought on by such medication. Supposedly, this is a “rare” side effect, but between the “rare” risk of mandibular necrosis and the “rare” risk of atypical femoral fracture* (i.e., broken thighbone), I’m feeling pretty committed to my no-meds position.

The good news: you can build bone density; you can reverse osteopenia and even osteoporosis. How you do it has been what I’ve been trying to figure out. It’s taken a huge amount of time and effort, but I’ve got a start on an exercise routine combining resistance training and impact training. Right now, this involves two very intense sessions at the gym each week, plus stuff at home. (Heel drops, Baby, heel drops!)

I wish every lung cancer person knew about prednisone’s dark side.

Here is some information I’ve used to build an exercise plan. I hope you find it helpful.

• Exercise prescription to support the management of osteoporosis: For physiotherapists and exercise physiologists. (2024, February). Healthy Bones Australia. https://healthybonesaustralia.org.au/
• Exercise: Preventing bone loss and reducing fracture risk. (2016). The Royal Australian College of General Practitioners. https://www.racgp.org.au/
• Bae, S., et al. (2023). Exercise Guidelines for Osteoporosis Management and Fall Prevention in Osteoporosis Patients. Journal of Bone Metabolism, 30(2), 149–165. https://doi.org/10.11005/jbm.2023.30.2.149
• Daly, R. M., et al. (2019). Exercise for the prevention of osteoporosis in postmenopausal women. Brazilian Journal of Physical Therapy, 23(2), 170–180. https://doi.org/10.1016/j.bjpt.2018.11.011

Now, About That Coffee

Hoarseness has returned. My doc thinks I need to stop drinking coffee entirely; she thinks the acid is scorching my vocal cords. I mention hoarseness as a symptom of lung cancer progression and she says, “That’s not what this is.”  Whatever. I’ll carry out the no-coffee experiment for a few weeks until I see Dr. Oncology, who may once again find the hoarseness significant.

Here’s a picture of the last cup I had:

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Thanks for reading. I hope spring is springing with a vengeance where you are. Enjoy a cup of coffee for me!

Reference

*Black, D. M., Geiger, E. J., Eastell, R., Vittinghoff, E., Li, B. H., Ryan, D. S., Dell, R. M., & Adams, A. L. (2020). Atypical Femur Fracture Risk versus Fragility Fracture Prevention with Bisphosphonates. New England Journal of Medicine, 383(8), 743–753. https://doi.org/10.1056/NEJMoa1916525