Controlling symptoms of myeloma

Anaemia means that you have a low red blood cell count. Red blood cells carry oxygen around the body. If the level of red blood cells is low your body cells don't have a good enough supply of oxygen to work properly. So you feel tired (fatigued) and may also feel breathless. This is quite common in people with myeloma, particularly if your kidneys are not working very well. Healthy kidneys make a hormone called erythropoietin (EPO) which helps the bone marrow to make red blood cells. You may have blood transfusions to increase your red cell count. 

If your anaemia is severe and keeps coming back despite blood transfusions, and if your kidneys are not working well, your doctor may suggest erythropoietin treatment. You have it as an injection under the skin, usually in the leg or in the tummy (abdomen).

Fatigue means tiredness and lack of energy. Fatigue is a common symptom of myeloma and affects everyone differently. It can be due to anaemia or may be a side effect of treatment. It may be mild or it can impact greatly on your daily life. You may have a poor memory and feel unable to concentrate properly. You may have low moods and feel irritable. And you may feel weak and have difficulty sleeping.

Your doctor can assess and treat any underlying cause of your fatigue. If cancer treatment, such as chemotherapy or biological therapy, is making your fatigue worse this should improve once your treatment finishes.

If you feel very tired there are ways of dealing with this and it can help to carefully plan your daily activities. You can find helpful tips in the section about managing cancer fatigue.

Frequent infections are another common problem with myeloma. You may need to have treatment with antibiotics. If you have a low white blood cell count, you may need to go into hospital when you have an infection so that you can have the antibiotics into your bloodstream through a drip.

UK myeloma supportive care guidelines recommend that people with myeloma have vaccinations to protect against flu and chest infections. Your doctor or specialist nurse can advise you about this.

Myeloma often causes damage to areas of bone. This can weaken the bone in those places and may cause pain. Bisphosphonate drugs can help to reduce this problem. These drugs bind to areas where bone has been destroyed. This slows down the damage caused by the myeloma cells. A 2010 Cochrane review showed that bisphosphonates reduce bone pain and reduce the risk of fractures in damaged bones. 2 main types of bisphosphonates are used to treat myeloma patients

• Pamidronate (Aredia) and zoledronic acid (Zometa) are given as a drip into a vein once a month
• Sodium clodronate (Bonefos) is taken as tablets twice a day

Research has shown that intravenous zoledronic acid works better than clodronate tablets for reducing bone damage.

You can read this review of bisphosphonates for myeloma in the Cochrane Library. It was written for researchers and specialists and so is not in plain English.

Radiotherapy can also strengthen areas of bone damage and reduce pain. There is a limit to the amount of radiotherapy that you can have to any part of your body. So, if you have pain in an area where you have already had radiotherapy, you may not be able to have this treatment again.

Even with bisphosphonate treatment and radiotherapy, bone pain may still be a problem for some people with myeloma. A wide range of painkillers (analgesics) can be used to treat pain. There is information about cancer and pain control in the coping with cancer section.

Tingling and numbness in your fingers and toes (peripheral neuropathy) can happen for several reasons in people with myeloma. It may be due to the myeloma itself or may be caused by other medical conditions. Or tingling and numbness may develop, or get worse, as a side effect of some chemotherapy treatments (such as vincristine) or biological therapies (such as thalidomide or bortezomib).

Peripheral neuropathy can cause nerve pain, loss of sensation, a feeling of tightness and may also affect your balance. It most commonly affects your feet and hands, but it may also affect nerves elsewhere in your body. Your doctor and nurses will be looking for signs of peripheral neuropathy during your treatment. You should always let your doctor or nurse know if you notice any new symptoms.

Your doctor can give you medicine to help with nerve pain. Doctors often use lower doses of antidepressant drugs and drugs that prevent fits (anti epileptics), as well as painkillers such as paracetamol. A cream called capsaicin may also help some people.

Peripheral neuropathy from treatment is often temporary and improves once treatment stops or the dose of the drug is reduced. But unfortunately for some people the effects can be permanent. There is detailed information about peripheral neuropathy after treatment in our question and answer section.

Some people with myeloma have fractures of the spinal bones. Fractures caused by myeloma put pressure on the spine and can be very  painful. The bones of your spine (vertebrae) can collapse, making the spine change shape. It can become very curved – doctors call this kyphosis. So you may lose height. A technique called vertebroplasty can help to treat spinal fractures. Vertebroplasty involves injecting special cement into the spine to strengthen it and reduce pain.

The National Institute for Health and Clinical Excellence (NICE) has issued guidance on the use of vertebroplasty for treating spinal fractures. It says that vertebroplasty appears to be safe enough and works well enough for use in the NHS. But they add that it should only be considered if other ways of treating your pain don't work.

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

NICE guidance on the balloon kyphoplasty procedure says that, as with vertebroplasty, it appears to be safe enough and works well enough for use in the NHS. As these treatments are relatively new, there are not many UK centres that can do this procedure. But it is becoming more widely available as more doctors are trained.

It is important that you understand the potential benefits and risks of these procedure before you agree to treatment. And the treatment should be discussed by a team of doctors including a spinal surgeon and a radiologist (a doctor trained in using X-rays and imaging). Doctors doing these procedures must be trained and experienced in using these techniques.

Dizziness or stroke symptoms can happen with advanced myeloma. These symptoms are caused by the increased amounts of protein (immunoglobulin) produced by myeloma cells. The extra protein in the blood makes the blood thicker and it circulates around the body more slowly than normal. It can clog up small blood vessels and cause symptoms such as confusion, dizziness and stroke like symptoms. This is due to the thickened blood blocking very small blood vessels in the brain.

A procedure known as plasmapheresis removes the excess protein from the blood. This is a similar process to having a stem cell collection. Your nurse or technician connects you to the plasmapheresis machine by 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. You can have this treatment more than once if you need to.

People with myeloma can also be more likely to develop blood clots. This can be a side effect of some myeloma treatments. Or it may be caused by infection or by not moving around very much. If you are at a higher than normal risk of developing blood clots you may have blood thinning medicines such as aspirin or warfarin.

The abnormal protein (immunoglobulin) may also cause kidney damage. The myeloma proteins may damage the small tubes in the kidney that filter urine. High levels of calcium in the blood, due to myeloma bone disease, may also cause kidney damage. Some drugs such as non steroidal anti inflammatory drugs (NSAIDS) may also affect the kidneys.  Dehydration can make the situation worse, so it is important to drink as much fluid as you can. Doctors generally encourage patients with myeloma to drink 2 to 3 litres of fluid each day.

The symptoms of kidney damage can include, thirst, loss of appetite, nausea and vomiting, and either passing much more or much less urine than usual. You may also have swollen ankles or 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 monitor how well your kidneys are working. This means that your doctor or nurse are likely to notice early changes in how your kidneys are working before you have any symptoms. If you do get kidney damage it is often improved with fluids and other treatments. The main treatment is treating the myeloma itself, because this is the cause of the kidney damage. You may need to see a kidney specialist. Kidney specialists are called renal doctors.

These are teams of doctors, nurses and other health professionals who specialise in controlling symptoms of diseases, especially cancer. You may be referred to the palliative care team at any stage of your illness if you have pain or other symptoms that are difficult to control. The team will advise on treatments or drugs that can control your symptoms.