Peripheral Neuropathy: A patient primer

Our first guest post by the current leader of the MM fighters - Chris Beebe... glad to have his contributions!

The scourge of many Multiple Myeloma patients is peripheral neuropathy – a condition which causes weakness, numbness, and pain, typically in the hands and feet, but it can also affect other areas of the body. .  Neuropathy is often caused by some of the anti-Myeloma treatments that we take to battle our cancer, but may have other causes as well, including light-chain (AL) amyloidosis, or in some patients, diabetes.  Unfortunately, this remains an understudied part of our disease, and there is no cure once neuropathy is established.  But there are a number of ways to try to alleviate the symptoms of neuropathy, and hopefully reduce it to a manageable level.

Neuropathy often starts as a tingling or numbness in your hands or feet, and can progress to pain or a burning sensation, often impacting one’s ability to walk, balance or do simple manual tasks.  Obviously, it is best never to get neuropathy, or alter treatment at the onset of symptoms, so the patient needs to be sure to communicate clearly with their care team as soon as any of the above symptoms start to appear. 

The medications most widely known for causing neuropathy are Bortezomib, and to a lesser degree, Lenalidomide and Pomalidomide. The recently approved bispecific antibodies Teclistamab and Elrantamab, as well as CAR T cell therapy (Cilta-cel and ide-cel), have also been reported to cause this. If symptoms of neuropathy appear while taking any of these medications, a dose reduction, or switching to less frequent dosing has been able to help in some cases. Given the higher rates of neuropathy with twice weekly bortezomib, most oncologists have switched to using once weekly bortezomib; however, if you are on twice weekly bortezomib and experiencing neuropathy, changing to weekly dosing is very reasonable.  However, if symptoms worsen, then a change in therapy is sometimes the best course of action, if that is an option for the patient.

For more serious cases of neuropathy, especially when pain is present, there are several drugs that have been used to help relieve such pain.  One drug many oncologists use is duloxetine.  Another commonly prescribed medication is gabapentin, which has several brand names.  Pregabalin is also sometimes prescribed, as it belongs to the same class of drugs as gabapentin.  As with all drugs, these three medications come with side effects, some of which may be severe.  Be sure to discuss these side effects with your care team.

For patients that want to avoid more ingested medications, or whose neuropathy related pain is not severe, certain creams, lotions or patches are sometimes employed to block nerve signals to alleviate this pain.  Products with menthol, capsaicin, and lidocaine all are potential options.  Others care teams suggest taking a combination of calcium and Vitamins B6 and B12 to help with symptoms.

Some patients with milder neuropathy symptoms can turn to several physical treatments that seem to help many patients lessen the impact of neuropathy by stimulating the nerves in the hands or feet.  These can also be used in conjunction with the above treatments in a multi-pronged treatment of the various symptoms.

The easiest is walking for 20-30 minutes a day, as this stimulation can help regain some feeling in their extremities and can also help improve balance.  Acupressure, or strong massage can also help bring back some feeling and lessen pain and has the benefit of being able to be done at home if you have a willing care partner. 

Another avenue to take is seeing an outside specialist who can help with the challenges presented by neuropathy.  Acupuncture may also help with relief, but you should find an acupuncturist who has experience with cancer patients and neuropathy in order to be treated correctly.  Physical therapists can also help by applying kinesiology tape to the bottom of the patient’s feet.  The tape must be kept on for up to a week, depending upon the physical therapist, but has also proved to be beneficial for some patients.

All Multiple Myeloma patients are different, and each can react to treatments in different ways.  Be sure to discuss with your care team options that might work for you.  Several different options might need to be attempted in order to find the one that is most effective for your situation.