Treating and preventing problems caused by myeloma

Myeloma and its treatment can affect you in different ways. It can cause symptoms and problems. Supportive treatments can help to either prevent or control these problems.

The problems or symptoms you have depend on how the myeloma is affecting your body. And it also depends what treatment you have. 

You might have supportive treatments to prevent or help control the following problems:

• infection
• low red blood cells
• bone problems including pain, spinal bone fractures, high calcium and spinal cord compression
• kidney problems
• nerve problems
• symptoms caused by thickened blood (hyperviscosity)
• blood clots
• shortness of breath
• tiredness (fatigue)

Infection

Myeloma and its treatment affect your immune system. So you are more at risk of getting infections.

Treating infections

Signs of infection can include:

• a change in temperature - 37.5°C or higher or below 36°C
• aching muscles
• headaches
• feeling cold and shivery and generally unwell
• diarrhoea
• pain having a wee, going more often or cloudy or foul-smelling wee
• new pain anywhere in your body that was not there before 

You might have other symptoms depending on where the infection is.

For some infections you can have treatment at home. But other infections can be life threatening, and you will need treatment in hospital. This is so that you can have the antibiotics into your bloodstream through a drip.

Treatment for infection includes:

• antibiotics which treat bacterial infections
• antiviral drugs which treat viral infections
• antifungal drugs which treat infection caused by a fungal infection

Preventing infection

Medicines to prevent infection

Doctors sometimes suggest you take medicines before you get an infection. This is to try to prevent it from happening. These are called prophylactic medicines. Prophylactic (pronounced prof-il-ak-tik) means preventative.

You might have medicines to prevent bacterial, viral or fungal infections.

Vaccines

Vaccines are a way of protecting you against certain infections. Your doctor is likely to suggest that you have:

• a yearly flu vaccine
• a vaccine to prevent pneumonia
• a coronavirus vaccine

There are two main types of vaccines. These are live vaccines and inactivated (not live) vaccines.

You shouldn't have live vaccines if you have myeloma. This is because live vaccines contain a very weak version of the illness. Your doctor can tell you which vaccines are safe, and which ones to avoid.

Antibody treatment (immunoglobulins)

You might have a low level of antibodies in your blood. These antibodies are called immunoglobulins. Immunoglobulins fight infection.

You are more likely to get infections if you have low levels of immunoglobulin. You might need immunoglobulin treatment if your immunoglobulin levels are low. And if you keep getting infections despite taking prophylactic antibiotics.

You usually have immunoglobulins as a drip into your vein (intravenous) every 3 to 4 weeks.

Treatment for low red blood cells (anaemia)

A low red blood cell count is called anaemia. Red blood cells carry oxygen around the body. Your body cells don't have a good supply of oxygen if the level of red blood cells is low. So you feel tired (fatigued) and might also feel breathless. Your doctor will check your blood counts. 

Anaemia is quite common in people with myeloma. Your bone marrow might not make enough red blood cells because of the myeloma or treatment. Anaemia is also common if your kidneys are not working very well. Healthy kidneys make a hormone called erythropoietin (EPO). This helps the bone marrow to make red blood cells.

Blood transfusion

You can have a blood transfusion if you are anaemic. This can help you to feel better.

Some people have a reaction to the blood, although this is rare. Tell your doctor or nurse if you feel hot or cold and shivery during the infusion. Your nurse will give you medicines to reduce the reaction.

Erythropoietin injection

Erythropoietin isn't a common treatment. But your kidney doctor might prescribe it if:

• your kidneys are not working properly
• you have severe anaemia that keeps coming back despite blood transfusions

You have erythropoietin as an injection under the skin, usually in the leg or in the tummy (abdomen).

Bone problems including pain

It is common for people with myeloma to have bone problems and bone pain. Myeloma weakens the bones which can lead to breaks (fractures). Treating the myeloma helps to control bone damage and pain.

Controlling pain

Most people with myeloma have some pain because of bone damage. Having pain has a big impact on how your feel in yourself and interferes with your daily life. It is important to talk to your healthcare team if you have pain so they can help you manage it.

The myeloma treatment might help with your pain. But there are other ways of managing pain.  Your specialist might also suggest:

• painkillers
• bisphosphonate drugs
• radiotherapy
• surgery

Painkillers
There are different painkillers (analgesics) that might help. If one doesn't work, tell the team looking after you so they can prescribe something else. People with myeloma need to avoid non steroidal anti inflammatory drugs  - for example, ibuprofen. This is because these drugs can cause kidney damage. 

Bisphosphonate drugs

Bisphosphonate drugs  can help to reduce bone damage. They slow down the damage caused by myeloma cells. There are different types of bisphosphonates, but the most common are pomidronate and zolendronic acid (zometa). You usually have these as a drip into the vein (intravenously) every 4 weeks. 

You might also take calcium and vitamin D supplements if you are having bisphosphonates. Your doctor will tell you about this.

Radiotherapy

Radiotherapy to an area of myeloma might reduce pain. There may be a limit to the amount of radiotherapy you can have to any part of your body. So if you have pain in an area where you have had radiotherapy, you might not be able to have this treatment again. 

Surgery

Surgery can help if pain is caused by a break (fracture). Or if your pain is caused by spinal problems.

Spinal bone fractures (breaks)

Some people with myeloma have breaks (fractures) of the spinal bones (vertebrae). This can put pressure on the spine and be very painful. The vertebrae can collapse, making the spine change shape. Your spine can become very curved. Doctors call this kyphosis. You might lose some height because of this.

Your doctor might offer a treatment such as:

• vertebroplasty
• balloon kyphoplasty
• surgery
• radiotherapy

 During a vertebroplasty your doctor injects special cement into your spine. This strengthens it and reduces pain.

Balloon kyphoplasty is similar but the doctor puts little balloons into your spine. They slowly inflate the balloons so that the spinal bones go back to as near normal height as possible. The doctor then injects special cement into the space created by the balloon. This can strengthen your bone, relieve pain and restore some height. 

Other treatments for spinal fractures include:

• surgery to strengthen or repair weak or broken bones
• radiotherapy to slow down the damage and help your pain
• wearing a neck brace or back brace to support your neck or spine and to relieve pain  

Spinal cord compression

Spinal cord compression happens when there is pressure on the spinal cord stops. The pressure stops the nerves working normally. The symptoms depend on where the pressure is in the spinal cord.

Treatment

You might need to lie flat for some time to reduce movement in your spine. This is to prevent any more damage to your spinal cord.

You'll see a physiotherapist who will help you sit up carefully and give you ways to move around, once it is safe to do so. They might give you a collar or brace to wear to protect your spine.

Treatment for spinal cord compression should start as soon as possible. This is usually within 24 hours of diagnosis. This reduces the chance of permanent damage to the spinal cord.

You might have one of the following treatments:

• steroids
• radiotherapy
• surgery
• myeloma treatment such as chemotherapy or targeted drugs

High calcium

When myeloma damages your bones, they release calcium into the bloodstream. Too much calcium in the blood is called hypercalcaemia.

This makes you feel very thirsty, sick and tired. You might also pass a lot of urine, as your body tries to get rid of the extra calcium. Constipation may also be a symptom.

If hypercalcaemia is not treated and gets worse, it can make you drowsy and difficult to wake.

Treatment

You might have one or more of the following treatments:

• fluids
• bisphosphonates
• steroids

Kidney problems

Some people with myeloma have kidney damage. You might have this problem at diagnosis, or you might develop this problem at a later time.

Causes

Kidney damage happens for different reasons. Myeloma cells make an abnormal protein called paraprotein. These block the small tubes in the kidney that filter urine, causing damage to the kidney. This is the most common way for myeloma cells to damage the kidney.

Another reason is that myeloma causes bone disease or damage. Bones contain calcium. As the bones are damaged, high levels of calcium are released into the blood. As the blood passes through the kidneys it can cause damage. 

Some drugs such as non steroidal anti inflammatory drugs (NSAIDS) may also affect the kidneys. So your doctor might advise you not to take these.

Dehydration can make the situation worse, so it is important to drink as much as you can. Doctors generally encourage patients with myeloma to drink 2 to 3 litres each day

Symptoms
You might not have any symptoms. But if you do, symptoms of kidney damage include:

• thirst
• loss of appetite
• feeling or being sick
• passing much more or much less urine than usual, or not passing urine
• swollen ankles
• breathing problems

It is very important to let your doctor or nurse know of any new symptoms as soon as you notice them. They will do regular blood tests to monitor how well your kidneys are working. They are likely to notice early changes in how your kidneys are working before you have any symptoms.

Treatment
Kidney damage often improves with fluids into your vein, and other treatments. The main treatment is treating the myeloma itself, because this is the cause of the kidney damage. You might need to see a kidney specialist. Kidney specialists are called renal doctors.

Some people with myeloma need haemodialysis, usually 3 times a week. Dialysis is a treatment that removes waste products and extra fluid from the body when the kidneys stop working. It is usually a temporary treatment, but can be permanent for some people.

Nerve problems

Tingling, numbness or burning sensation in your fingers and toes can be a sign of damage to the nerves. This is called peripheral neuropathy. It is most common with myeloma treatments such as thalidomide and bortezomib. But it might also be caused by:

• the myeloma itself 
• other medical conditions 

Peripheral neuropathy can also cause nerve pain, loss of sensation, or burning and might also affect your balance. It most commonly affects your feet and hands, but it may also affect nerves elsewhere in your body. 

Your team will check for signs of peripheral neuropathy during treatment. Let them know if you notice any new symptoms. 

Nerve pain

There are medicines (such as amitriptyline, gabapentin and pregabalin) that can help with nerve pain. Painkillers such as paracetamol might also help. Or a cream called capacisin can be useful for some people.

Peripheral neuropathy as a result of treatment is often temporary. It might improve once treatment stops, or the dose of the drug is reduced. Rarely, these effects can be permanent in some people. 

Thickened blood (hyperviscosity)

This condition is rare.

Symptoms such as dizziness, headaches and confusion can happen with advanced myeloma. The myeloma cells produce an increased amount of protein (paraprotein). The extra protein in the blood makes the blood thicker. The thicker blood circulates around the body slower than normal. This is called hyperviscosity.

Hyperviscosity can clog up small blood vessels. This can cause symptoms such as confusion, dizziness, headaches and stroke like symptoms. This is due to the thickened blood blocking very small blood vessels in the brain.

Plasmapheresis
Plasmapheresis (or plasma exchange) quickly removes the excess protein from the blood. This is a procedure that you can have in the day unit. Your nurse or technician connects you to the plasmapheresis machine. They use 2 tubes similar to the infusion tubes used for drips. One tube takes your blood into the machine and the other gives it back into your vein.

The machine separates the blood cells from the blood plasma (the liquid part of the blood). The protein is in the plasma. The machine replaces the plasma with a solution that is very similar to normal plasma. It is given back to you with your blood cells. This process takes 2 to 3 hours.

You can have this treatment more than once if you need to. Your doctor will closely monitor your protein levels.

Preventing blood clots

Some myeloma treatments increase your risk of developing blood clots. For example, thalidomide and lenalidomide. Clots can block the normal flow of blood through the veins.

Let your doctor or nurse know if you have:

• unexplained pain in your leg or arm
• redness and swelling in your leg - this may be just in the calf or include the whole of your leg

There is a risk that a blood clot can become loose and travel through the bloodstream to the lungs. This can cause a blockage there (a pulmonary embolism). Symptoms include:

• shortness of breath
• chest pain
• coughing up blood
• feeling dizzy or light headed

If you have any symptoms of a blood clot when you are at home, you should contact a doctor immediately. This might be your emergency GP service. Or call 999 or go to your nearest accident and emergency department (A&E).

Your doctor will assess your risk of developing blood clots. They might suggest you take medicine to lower the risk. Medicines might include:

• aspirin
• heparin
• warfarin
• a type of direct oral anticoagulant (DOAC), such as apixban

Feeling very tired (fatigue)

Fatigue means tiredness and lack of energy. It is a common symptom of myeloma and affects everyone differently.

Fatigue can be due to anaemia or might be a side effect of treatment. It may be mild or it can impact greatly on your daily life. For some people it affects their memory and their concentration. It can also cause low moods and feeling irritable. and it can make you to feel weak and have difficulty sleeping.

Your doctor can assess you and try to treat any underlying cause of your tiredness. If your myeloma treatment is making your fatigue worse, this should improve once treatment finishes.

There are things you can do that might help you cope with fatigue. 

Help controlling symptoms

Your doctor or specialist nurse can:

• give you medicines

• get equipment that you need

• suggest other ways of controlling your symptoms

• refer you to a symptom control team (a palliative care team)

Symptom control team

Members of this team are experts in controlling symptoms. They can help you to stay as well as possible for as long as possible. There are symptom control teams in most cancer units. They are also in hospices and many general hospitals.

Most symptom control teams have home care services so they can visit you at home.