How to Manage LEMS Weakness While Treating Lung Cancer

If you’ve been recently diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), you might be experiencing low-to-intense muscle weakness.

And, of course, cancer itself — as well as the treatment — can wear down your energy. In fact, 80 percent of people living with cancer experience fatigue, says Jennifer Armendariz, RN, a nurse practitioner in El Paso, Texas, who specializes in hematology and oncology.

When you’re managing both LEMS and cancer, it can be difficult to tell if you’re feeling muscle weakness from LEMS or cancer-related fatigue.

Here’s how to tell the difference — and what you can do to better manage both so you can feel your best.

“Cancer-related fatigue is a type of exhaustion that does not get better with sleep,” says Armendariz.

With LEMS weakness, symptoms can improve for a brief moment. Christopher Nance, MD, a neurologist with University of Iowa Health Care in Iowa City, who specializes in neuromuscular diseases, says that those with LEMS often feel a very brief respite (seconds to minutes) from their weakness after doing a small amount of exercise. This is often referred to as the “warm-up” or “facilitation” effect.

If you notice your weakness or fatigue feels like it improves temporarily, and is located mainly in specific areas, it’s likely related to LEMS. Let your care team know so they can figure out the best approach to manage this.

Medication can really help you manage LEMS weakness. Amifampridine (Firdapse) is the primary medication that’s been approved by the U.S. Food and Drug Administration (FDA) for this condition.

Because this medication enhances the nerve-to-muscle signals in the body, the dose needs to be considered carefully. “When you prolong the activity of nerves, it can cause other side effects, such as seizures,” says Dr. Nance.

Because of this, your doctor should start you off on the lowest dose possible, and gradually adjust it so you get the most help with the least side effects.

Here’s what that might look like:

1. Prioritize “must-do” tasks. Armendariz advises doing the most important tasks early in the day when you have the most energy. Then, delegate the rest to loved ones or via services like grocery delivery and laundry pickup.
2. Plan ahead. Armendariz suggests asking family or friends to help you with meal prep. You can also group activities to avoid unnecessary trips. For example, you might run multiple errands in the same shopping plaza trip (such as bank and pharmacy visits) instead of driving to multiple areas, if possible.
3. Pace yourself. Take frequent breaks while performing tasks or chores, such as once every 10 minutes to hydrate and rest, even if you don’t feel tired.
4. Position yourself properly. Consider your physical position to make activities easier, such as using a shower chair. Armendariz recommends using grabbers to pick things up off the ground, or sitting while brushing your teeth or getting dressed.
5. Practice pursed-lip breathing. This type of breathing technique is helpful for whenever you need to exert yourself. It allows you to inhale and exhale more air. Practice this at various times of day for when you need it.

Managing LEMS at the same time as lung cancer can feel overwhelming, but you don’t have to do it on your own. Rely on your care team as much as possible, including your oncologist, neurologist, primary care physician, and any other specialists you may need depending on your symptoms.

And bring up any new symptoms, or any treatment changes, to your oncologist and neurologist to facilitate coordination of care, says Nance. It’s also a good idea to look for a physical or occupational therapist who can tailor a restorative exercise routine and help you stay active and strong without overtaxing yourself.

• Both LEMS and small-cell lung cancer can make you feel fatigued and weak, but there are a few ways to tell which one is causing your symptoms at any given time.
• Let your care team know what types of symptoms you’re experiencing so they know how best to treat them and improve your quality of life.
• Rely on medication and energy-saving strategies to maintain as much movement and energy as possible while you undergo treatment.