On May 4th The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) held another webinar in its 2021 IWMF Global Education series titled Peripheral Neuropathy: No Easy Feat. As the title implies, the focus of this webinar was on peripheral neuropathy, which is a complication that appears in some patients living with WM. When severe, peripheral neuropathy can have serious quality of life impacts, so it is a subject of great concern for this patient community, particularly those who are being treated regularly for active disease.

About WM

Waldenström’s macroglobulinemia, which is also known as lymphoplasmacytic lymphoma, is a rare type of blood cancer that affects two types of B lymphocytes, including plasma cells and lymphoplasmacytoid cells. A distinct characteristic of this type of cancer is the presence of a high concentration of IgM antibodies. It is a slow-progressing form of blood cancer, and many patients can lead active lives. While it cannot be cured, it is treatable; some patients are able to experience years of remission without symptoms. There are only about 1,500 new cases per year in the U.S. Although it mostly occurs due to sporadic genetic mutations, a family history increases risk. Symptoms include vision loss, headaches, enlargement of the lymph nodes, liver, and spleen, bleeding nose and gums, weight loss, fatigue, and general weakness. To learn more about WM, click here.

A Firsthand Experience

Dr. Guy Sherwood spoke about peripheral neuropathy from the perspective of a patient who had to deal with it firsthand. Guy was 40 years old in March of 2001 when he first received his WM diagnosis. Peripheral neuropathy is defined as nerve damage that affects the nervous system outside of the spinal cord and brain. It can impact motor function, sensory function, and autonomic function. Symptoms can include:

• Motor function
  • muscle twitching
  • cramps
  • tremors
  • gait changes
  • loss of coordination/balance
  • fatigue/weakness
• Sensory function
  • numbness
  • reduced sensitivity to temperature/pain
  • tingling, itching, crawling, pins/needles sensations
  • pain
  • skin allodynia (severe pain from normally non-painful stimuli)
• Autonomic function
  • incontinence (loss of bladder control)
  • abnormal sweating
  • muscle pain
• Other symptoms may include:
  • changes to the skin, hair, and nails
  • bone degeneration
  • muscle atrophy

Guy talked about several symptoms that he dealt with when he had peripheral neuropathy. He noted his experience with numbness, changes to temperature, and pain-sensing; saying that he could no longer enter a hot tub or bath with certainty. He also complained of periods of sudden, excessive sweating, often during social situations. His most serious symptom, however, was chronic pain. The experience of pain alone can be enough to drastically debilitate a patient and degrade their quality of life.

Guy outlined several treatments that were used for peripheral neuropathy, such as plasma exchange, chemotherapy, and immunotherapy. For many moderately affected patients, rituximab is the most common approach.

He also discussed the importance of controlling and managing pain. Guy emphasized that addressing the underlying cause of pain is paramount. Opioids are the most common method used for managing serious chronic pain; extended-release opioids were the most effective approach in his case. However, regimens must be tailored to the patient’s individual needs and should be strictly controlled to avoid side effects, such as constipation or addiction/dependency.

From the Physician’s Standpoint

Dr. Todd Levine also presented during the webinar to discuss the underlying mechanisms behind peripheral neuropathy. He also provided a more in-depth review of some of the treatments that may be used for it, such as anti-convulsants, nutritional supplements, antidepressants, magnetic and electrical stimulation, and infrared light therapy.

When numbness affects the extremities, Dr. Levine emphasized the importance of protecting the feet, as it is possible for significant injury to occur without the patient noticing. The feet should be cleaned regularly and the toenails cut on a weekly basis; around 40,000 amputations occur annually because of neuropathy.

Sleep can often be challenging in peripheral neuropathy due to pain, and patients may deal with involuntary movements such as restless leg syndrome; sometimes, these can be treated with drugs used in Parkinson’s. Others may deal with sexual problems, such as difficulty with orgasm and vaginal dryness or erectile dysfunction.

When autonomic function is affected, sometimes the digestive system is impacted. Symptoms can include pain or vomiting after eating, weight loss, or gastric stasis (food doesn’t travel through the system). Heart rate and blood pressure control may be affected too, leading to palpitations, fatigue, fainting, or lightheadedness.

Mood disorders can also appear, such as anxiety and depression, and about 30 percent of people with chronic peripheral neuropathy report feeling depressed. Treatment may include antidepressants, cognitive behavioral therapy, and exercise.

Dr. Levine also talked about how WM can cause peripheral neuropathy. Research suggests that myelin-associated glycoprotein is an antibody that attacks nerves and can be present in high numbers in some patients. In cases of very high IgM levels, the protein that is elevated in patients and is a distinguishing sign of WM, the protein itself may start to damage the nerves. WM may not be the cause if the process is purely sensory and only the axons appear damaged. Treatment such as chemotherapy can also cause neuropathy at times.

It’s important for patients to realize that every WM symptom is not related to neuropathy. Accurate diagnosis is critical as individual symptoms can often be treated. Identifying the cause can also make a huge difference in outcomes and sometimes the symptoms can be resolved without additional therapies, reducing the risk of side effects.