Living with Lambert-Eaton Myasthenic Syndrome (LEMS), a rare autoimmune disorder affecting the nerves and muscles, often requires seeing multiple specialists to help with your condition. That’s partly because 50 percent to 60 percent of cases are paraneoplastic, meaning they co-occur with cancer, particularly small-cell lung cancer. LEMS is triggered when the immune system mistakes part of the brain, muscles, and nervous system for invasive cancer cells and attacks them.
And if you have developed LEMS as a result of cancer, you’ll likely see both a neurologist and an oncologist.
Cancer treatment can be very taxing on the body, and managing LEMS is crucial for maintaining mobility during this time. To do this, you’ll need help from everyone on your care team. While your oncologist will primarily treat your cancer, it’s also important to discuss your LEMS with them. Here’s what you should be asking your oncologist about this condition.
Question 1: How Do I Tell If It’s LEMS Symptoms or Cancer Fatigue?
LEMS and lung cancer both cause weakness and fatigue, but it’s important to understand the differences between the types of symptoms so your team can help manage them. Christopher Nance, MD, a neurologist with University of Iowa Health Care in Iowa City, who specializes in neuromuscular diseases, says this can be a challenge.
“The way neurologists differentiate these is by noticing if brief exercise makes patients stronger for a few seconds or a minute or so before they fatigue again,” he says. If this is the case, it’s likely LEMS. Cancer-related fatigue, on the other hand, tends to wave and wane with each dose of treatment.
In addition, LEMS often involves proximal muscle or gait instability, such as difficulty with getting up from a chair, things requiring core muscle strength,” says Krushangi Patel, MD, a medical oncologist at City of Hope in Long Beach, California.
To help your oncologist better understand your symptoms, Dr. Patel recommends keeping a journal of all symptoms, including when they’re occurring, as well as what side of the body is involved. LEMS often causes symptoms on both sides of the body.
Question 2: How Will Cancer Treatment Impact My LEMS Symptoms?
Treating the underlying cancer is generally the first step in managing your LEMS. However, most cancer treatments (including chemotherapy) cause generalized fatigue, and while this may feel like it’s exacerbating your LEMS, that’s not necessarily the case.
“As the cancer becomes better controlled with treatment, the LEMS also will improve, and in some situations, resolve completely as the disease improves or is lessened,” says Patel.
But there are exceptions. Patel says certain medications used to treat chemo-related nausea, such as olanzapine (Zyprexa, which is also an antipsychotic), sometimes exacerbate LEMS symptoms temporarily.
Discuss all your treatments with your doctors to find out the full extent of the potential impact.
Question 3: Do I Need to Avoid Specific Medications or Procedures?
Certain medications and procedures can be dangerous for people who have both LEMS and small-cell lung cancer, so it’s important to always check in with your team about everything you’re prescribed or recommended as well as any supplements you’re taking.
If you have LEMS, you may be more sensitive to the neuromuscular blockers used in anesthesia, which can present a higher risk of prolonged muscle weakness or postoperative respiratory failure for you during any treatment or procedure that might require this.
Additionally, certain antibiotics (including erythromycin and fluoroquinolones) can also have neuromuscular blocking effects, while certain beta-blockers exacerbate LEMS weakness.Always ask your oncologist about the risks and benefits of every treatment they recommend.
Question 4: How Will You Coordinate With My Neurologist on a Shared Care Plan?
While oncologists and neurologists do their best to stay in constant communication, you can take additional steps to ensure this is happening.
“Bring up any new symptoms you’re having to your oncologist and neurologist,” says Dr. Nance.
Patel also suggests always having a list of your medications and their doses with you, especially if anything has changed since your last visit.
She says this is more streamlined when working with doctors who are part of the same hospital system. If they aren’t, though, make sure your doctors have all the contact information for one another to close communication gaps.
“And then ask questions. ‘Is this something the neurologist is okay with?’ or ‘Is this a plan that’s been discussed with them?’ Oftentimes, the plan will be discussed at length between providers,” says Patel.
Question 5: What ‘Red Flags’ Mean My LEMS Is Affecting My Respiratory Health?
LEMS can impact your respiratory system, and it’s important to be able to identify symptoms that require emergency intervention.
“Having any diaphragmatic or respiratory muscle involvement is extremely dangerous,” says Patel. “If patients are having any difficulty breathing for whatever reason, leave it up to us to figure out the reason, but seek immediate medical attention.”
Patel recommends watching out for these warning signs:
- Difficulty breathing that’s worse from your baseline
- Difficulty getting across the room without running out of air
- Spasming of the airway
- Secretion management issues like drooling or having an extremely dry mouth
“Sometimes a choking sensation with eating or swallowing can happen. Those symptoms we take very seriously,” says Patel.
And because the onset is very acute, you can quickly go from feeling like you’re struggling to breathe a bit to needing respiratory support. If possible, she recommends having someone around who can speak to medical personnel if you’re unable.
The Takeaway
- Develop a strong relationship with your oncologist and ask targeted questions to ensure you’re always getting the best care for managing LEMS and lung cancer.
- Keep a journal of all your symptoms, including what type, when they occurred, how long they lasted, and any additional details to share with your oncologist.
- Always let your neurologist and oncologist know of any changes in medications or procedures.
- Never ignore respiratory symptoms and seek help immediately.
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