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Numbness and tingling from bortezomib: how it is managed | CION Cancer Clinics
Numbness, tingling or burning in the feet and hands is a common side effect of bortezomib, and the most useful step is to tell your team as soon as it starts. They can lower or space the dose, give it under the skin, treat nerve pain or switch medicines. Many people improve over months. This page explains the signs, what the team does and how to protect your feet at home. At CION Cancer Clinics, our haematology team plans myeloma and lymphoma care with you, discussed at a tumour board and explained in plain words.
On this page
- What can be done about numbness and tingling from bortezomib?
- What does bortezomib nerve damage feel like?
- How does the team manage it?
- How can you protect your hands and feet at home?
- What do people often believe about this nerve damage?
- What do the words in your notes mean?
- Common questions about nerve damage from bortezomib
The short answer
What can be done about numbness and tingling from bortezomib?
Tell your team as soon as it starts. When nerve damage from bortezomib is reported early, the team can change how the medicine is given, and the numbness and pain often ease over the following months.
Why bortezomib affects the nerves
Bortezomib is one of the main medicines for myeloma. Along with myeloma cells, it can affect the long, thin nerves that run to the hands and feet. The longest nerves are affected first, which is why symptoms usually begin in the toes and soles before the fingers.
Why speaking up early matters
Many people keep quiet because they fear the treatment will be stopped. In most cases the team adjusts it rather than abandoning it. The longer the damage goes unreported, the more likely it is to last. A mild tingling mentioned today is far easier to manage than a burning pain that has built up over several cycles.
Other causes the team will consider
Myeloma itself can damage nerves, and so can thalidomide, diabetes, low vitamin B12, an underactive thyroid and alcohol. Your team may check for these, because treating them helps whatever the main cause is.
Never stop, skip or change a dose yourself. Report the symptom and let the treating team decide.What you may notice
What does bortezomib nerve damage feel like?
It is different for everyone. These are the patterns people describe most often.
Numbness and tingling
Pins and needles, a feeling of wearing socks or gloves when you are not, or reduced feeling in the toes and fingertips.
Burning or shooting pain
Pain in the feet, often worse at night, or sudden electric-shock pains. Even light bedsheets may feel uncomfortable.
Clumsiness and balance
Trouble with buttons, writing, picking up coins or holding a cup. Unsteadiness on uneven ground or in the dark.
Tell the team if you
- Drop things more often
- Trip or nearly fall
- Cannot feel the floor well
Dizziness and gut changes
Nerves that control blood pressure and the bowel can be affected too. You may feel dizzy on standing, or become constipated.
Not sure whether this applies to you?
Ask an oncologistCall your treating team today, or go to the nearest emergency department or call 108, if there is sudden weakness in the legs or arms, fainting or a fall with injury, severe constipation with stomach swelling or vomiting, or difficulty passing urine. In myeloma, new leg weakness with back pain can also mean pressure on the spinal cord, which needs emergency care.
The plan
How does the team manage it?
Asking and grading
Before each dose the team asks about numbness, pain and daily tasks. They grade how much it affects your life, not only how it feels. Keep a short diary so you can describe changes clearly.
Changing how it is given
Depending on the grade, the team may lower the dose, give it less often, pause it, or give it as an injection under the skin, which tends to affect nerves less than a drip into the vein.
Treating the pain
Ordinary painkillers often do little for nerve pain. Medicines such as pregabalin, gabapentin or duloxetine may be tried. They take time to work and can cause drowsiness.
Switching if needed
If symptoms remain troublesome, the team may move to myeloma medicines that are less likely to harm nerves. This is discussed with you, not decided silently.
Day to day
How can you protect your hands and feet at home?
When feeling is reduced, small injuries go unnoticed and heal slowly. A few habits lower that risk and make falls less likely.
Feet
Check your feet every evening for cuts, blisters or redness, using a mirror or asking a family member. Wear soft, closed footwear that grips, even indoors, rather than walking barefoot or in loose chappals. Keep toenails trimmed straight and skin moisturised, but not between the toes.
Heat and water
Test bath water with your elbow or a thermometer, not your hands or feet. Take care near the gas stove, pressure cooker and hot vessels in the kitchen, and use cloth holders. Avoid hot water bags on numb feet.
Falls
Keep a night light on the way to the toilet, remove loose mats, and fit a grab bar in the bathroom if you can. Stand up slowly, sitting on the edge of the bed for a moment first if you feel dizzy. Gentle walking and balance exercises, taught by a physiotherapist, help many people.
What this page cannot tell you
It cannot tell you how severe your own nerve damage is, whether it will recover fully, or whether your dose should change. Those judgements need an examination and knowledge of your whole treatment plan. What it can tell you is that reporting early, honestly and in detail gives your team the most room to help.
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Commonly believed
What do people often believe about this nerve damage?
Usually the team adjusts the schedule or the way the medicine is given. Hiding symptoms makes lasting damage more likely and leaves the team with fewer choices later.
It might be partly those, but new numbness during bortezomib should always be reported. The team will look at every cause, and more than one can be present.
Vitamin B12 helps only when it is low. Supplements, herbal oils and tonics can interact with treatment. Ask before taking anything new, and bring what you already use to clinic.
For many people it improves, sometimes a great deal, once the medicine is changed. For some it improves only partly. How much recovers is hard to predict at the start.
In your notes
What do the words in your notes mean?
- Peripheral nerves
- The nerves outside the brain and spinal cord, running to the arms, legs, hands and feet.
- Sensory symptoms
- Changes in feeling: numbness, tingling, burning or pain.
- Motor symptoms
- Changes in strength or control of muscles, such as weakness or trouble gripping. These are taken especially seriously.
- Autonomic symptoms
- Effects on nerves that work automatically, such as blood pressure control, bowel movement and bladder emptying.
- Subcutaneous
- Given as an injection just under the skin, usually of the tummy or thigh, instead of into a vein.
Questions we are asked
Common questions about nerve damage from bortezomib
Will the numbness go away after bortezomib is stopped?
For many people it improves over months once the dose is lowered, spaced out or stopped. Some are left with mild numbness in the feet. Pain often settles sooner than numbness. How much recovers depends partly on how severe it became, which is why early reporting matters.
Why does it get worse after the course finishes?
Nerve symptoms can continue to build for a few weeks after a dose, because damaged nerves take time to show it. This does not mean something new has gone wrong, but tell your team, as they will want to record it and plan the next part of treatment accordingly.
Is the injection under the skin as effective?
Studies found that giving bortezomib under the skin controls myeloma about as well as the drip while causing less nerve damage. It is now the usual way it is given. It can leave redness at the injection site, which usually fades within days.
Can I still drive or ride a two-wheeler?
Only if you can clearly feel the pedals and controls, react quickly and grip safely. Numb feet on a brake or numb hands on handlebars are dangerous. Nerve pain medicines can also cause drowsiness. Discuss this honestly with your team, and let someone else drive when in doubt.
Do cold packs or special gloves help?
Cooling the hands and feet is used for some other cancer medicines, but good evidence for bortezomib is lacking. Comfortable footwear, keeping feet warm but not hot, and gentle exercise are reasonable. Ask before trying devices or creams sold for nerve pain.
Does massage or yoga help?
Gentle stretching, walking and balance work can help strength and confidence. Massage of the feet may ease discomfort for some. Avoid deep pressure over bones affected by myeloma, and ask your team or physiotherapist which movements are safe for your spine.
My father will not admit it is getting worse. What can we do?
Watch for dropped objects, trouble with buttons or slippers, shuffling, or reluctance to walk. Note these and gently share them at the next visit, ideally with him present. Explaining that early reporting usually keeps treatment going can make him more willing to speak.
Does lenalidomide cause the same problem?
Lenalidomide is much less likely to damage nerves than bortezomib or thalidomide, though it has its own side effects. That is one reason it is often used for longer-term treatment. Your team weighs these differences when planning, taking your nerve symptoms into account.
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Sources
- Cancer Research UK — Bortezomib (Velcade)
- Macmillan Cancer Support — Bortezomib
- National Cancer Institute — Nerve problems and cancer treatment
- American Cancer Society — Multiple Myeloma
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
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