Neulasta's Painful Extra Protection: Is it Worth it?

Patient Expert

Ten years ago, very few women routinely received an infection-fighting Neulasta injection as a regular part of chemotherapy treatment. Now, it's given as a matter of course. Unfortunately, many women find the shots painful enough to be debilitating. How much protection do you really need? And is Neulasta's pain worth its gain?

Ten years ago, two weeks after receiving my final chemotherapy injection, I came home from work on a Friday afternoon and collapsed into bed, exhausted.

Hmmm" Yeah, it was a long week, but this just doesn't feel right, I thought. I shouldn't be THIS tired. Maybe I'm coming down with something.

I dragged myself out of bed and took my temperature: 101 °F. Well, that explains it, I thought. My oncologist had said, "If you ever develop a temperature over 100 °F while on chemo, let me know, or contact the on-call oncologist in the emergency room."

Was I still on chemo, 2 weeks after my final treatment? Better safe than sorry; I'd best call.

Within the hour, I was admitted to the hospital with a raging infection that turned out to be pneumonia. I spent the next 10 days in isolation - no flowers, no visitors, just anxious, masked-and-gowned nurses and doctors checking my vital signs around the clock, trying first one antibiotic, then another, becoming increasingly worried until, finally, I turned the corner.

I made it home on Christmas Eve, dragging an oxygen tank with me. I was on oxygen for a week after leaving the hospital.

I'd had what was called a neutropenic infection: illness caused by lack of neutrophils, the white blood cells that destroy bacteria and fight infections. The chemo that had battled my cancer for the past 4 months had also waged war on my white blood cells, pushing them to dangerously low levels - a condition called neutropenia.

And, though I'd managed to stay healthy throughout my chemo regimen, I'd let down my guard once it was over: working too hard, not paying attention to the sniffling, sneezing people around me every day. Ultimately, I paid the price; a life-threatening case of pneumonia.

Thankfully, there's now a drug, Neulasta (pegfilgrastim) that counteracts the devastating effect chemo has on your neutrophils (white blood cells). By stimulating your body to make more neutrophils than normal, Neulasta - and its more powerful sibling, Neupogen (filgrastim) - effectively improve your chance of remaining healthy during chemotherapy. A simple injection of Neulasta, 24 hours after chemo, protects you until your next infusion.

All good, right?

Not quite.

As with any breast cancer treatment, Neulasta comes with potential side effects. The most common are an allergic reaction at the site of the injection: pain, itching, redness, and swelling. Many doctors prescribe Claritin as a good preemptive strike against such a reaction.

More bothersome, though, is the joint and muscle pain many women report as a result of their Neulasta injection. "Excruciating" and "debilitating" are words I've heard attached to this pain. A long-time member of our community here, Peglove, described her Neulasta experience like this:

"Written in Pain Delirium: I have a hot pack on my back for the Neulasta pain, but boy does it hurt""

After several painful Neulasta injections, Peg decided, against her doctor's recommendation, to skip the Neulasta, undergoing a prophylactic 10-day course of antibiotics instead. Here's what she wrote:

"If the last two chemo's w/ Neulasta were a 10+ on the screamer scale, I would vote this one as a 5 or 6. And that is good news. I think the Neulasta is good for some people, maybe that are already battling secondary infections or older people with other health issues. I definitely think you have to think long and hard about not getting it, and ask about other ways of staying protected (like antibiotics)."

How much risk was Peg at, not taking Neulasta?

How about you?

No one can say for sure; there are too many variables, including underlying health issues (diabetes and impaired liver function can both increase your risk of neutropenia); age; environment (are you around lots of people, or fairly isolated?), and how well you protect yourself (rest, exercise, diet).

Some women on Neulasta will contract an infection anyway; it's not 100% effective. Many women NOT taking Neulasta will sail right through chemo, healthy as a horse. The challenge is, you don't know which group you'll be in until you've either finished chemo healthy - or come down with an infection.

If your doctor recommends Neulasta during chemo (as nearly every oncologist does these days), you'll probably want to give it a try. Yes, it helps keep you healthy during chemo, and believe me, that's important; a light cold can quickly turn into pneumonia when chemo has compromised your immune system.

However, if you take Neulasta, and its side effects are so severe that they impact your daily life, you might want to consider a course of antibiotics instead - like Peg did.

It makes sense to access the extra insurance against infection offered by Neulasta. But if you have a severe reaction, and decide to take your chances without it, don't guilt-trip yourself. Up until 10 years ago, women didn't have access to Neulasta; and the vast majority did just fine without it. Hopefully, that'll be your experience - as it was Peg's, who's now out of active treatment and doing well. Here's what she posted a few months ago:

"I think this is finally the time that I can say I feel like my old self again. I waited to feel that, and it may not be permanent, but it's here now, and like the sun shining on your face, after a cold, hard winter, it is welcomed and unquestioned."*

May all of you currently undergoing treatment reach that same happy, healthy place - with Neulasta, or without it.

*Read Peglove's entire post: Skate party marks the end of "the bad time."