Controlling the symptoms of myeloma
There are several ways of easing the symptoms of myeloma, so it is important to let your doctor know if you are having any problems.
Bone pain is a common symptom of myeloma. Myeloma cells speed up the destruction of bone cells and slow down the production of new bone cells to replace them. This causes areas of bone to weaken and sometimes fracture.
There are many painkillers available to treat different types and levels of pain. Other treatments such as radiotherapy, chemotherapy, bisphosphonates and surgery can also help reduce pain. Your doctor or nurse will aim to find the best treatment to manage your pain.
Giving your doctor or nurse as much information as you can about your pain will help them to assess it and plan treatment. You may want to think about:
How does your pain rate on a scale of 0 (no pain) to 10 (worst pain)?
What words best describe your pain? (for example, dull, sharp, shooting or aching)
Does anything make the pain better or worse?
How does your pain affect your everyday activities?
How does the pain affect your sleep?
A group of drugs called non-steroidal anti-inflammatory drugs (for example, ibuprofen) can cause kidney damage in people with myeloma and shouldn’t be taken without first checking with your doctor or nurse.
Bisphosphonate drugs can be given to reduce pain and strengthen weakened bones. They can also reduce the amount of excess calcium in the blood (hypercalcaemia).
Bisphosphonates can help delay bone damage and prevent pain and fractures, so treatment may be started before any bone problems become noticeable. Research has shown that some bisphosphonates may also help treat myeloma.
They may be given as a drip into a vein (intravenous infusion) once a month. This takes between 15 minutes and four hours, depending on which drug is used.
Bisphosphonates are also available as tablets. It’s very important to take the medicine exactly as instructed. Your nurse, doctor or pharmacist will explain how to take your tablets. You may wish to mark off each dose you take on a calendar or use a 7-day pill container to help you remember to take them on time.
Generally, side effects are mild and include indigestion and feeling sick (nausea). However, a very rare side effect of bisphosphonates is osteonecrosis of the jaw. This condition involves damage and decay of the jaw bone. You should have a dental examination before starting treatment and let your dentist know you’ll be taking bisphosphonates. Your doctor should be informed if you need any dental treatment while you’re taking bisphosphonates.
Research studies are being carried out into the use of bisphosphonates for myeloma. As part of your treatment, you may be invited to enter a clinical trial.
Radiotherapy treats cancer by using high-energy rays to destroy cancer cells while doing as little harm as possible to normal cells. Radiotherapy is given by a machine similar to an x-ray machine.
The rays can be directed at specific bones where the myeloma cells have created a weak area. This treatment can be very effective at relieving pain in bones weakened by myeloma, allowing the bones to repair themselves. You may only need one or two treatments and your pain should reduce within 2-3 weeks.
In advanced myeloma, if chemotherapy is no longer effective, radiotherapy can be given to the whole body in two sessions, several weeks apart. One session treats the upper half of the body, while the other session treats the lower half. This is known as hemibody irradiation and may help to reduce symptoms and control the disease for some time.
Radiotherapy may also sometimes be used as part of the preparation for a stem cell transplant.
Radiotherapy is given in the hospital radiotherapy department. How the treatment is given can vary a lot, depending on your particular needs. If you only need one or two treatments, you may not need a lengthy first appointment to plan the treatment.
If you’re having a longer course of treatment, you’ll need to go to the hospital before your treatment starts so that the area to be treated, and the dose to be given, can be accurately worked out. Normally, treatment is given Monday–Friday for 2–4 weeks, with a rest at the weekends.
Radiotherapy for myeloma only occasionally causes side effects, such as nausea and vomiting. If these do occur, they can easily be treated - just let your doctor or nurse know. Any side effects should disappear once your course of treatment is over, but tell your doctor if they continue.
Radiotherapy can make you feel very tired, so try to get as much rest as you can, especially if you have to travel a long way each day for your treatment.
Surgery is sometimes needed to repair a bone in the back, arm or leg that has been damaged or weakened by the myeloma cells. The operation will be done under a general anaesthetic and the damaged bone is strengthened with a metal pin or plate. Once in place, this can’t be felt or seen.
You may also need radiotherapy to the broken or weakened bone to destroy the myeloma cells and help it to heal.
If the bones of the spine (vertebrae) are weakened by the myeloma, they may collapse. This is known as a compression fracture and it can cause pain, difficulty moving around and loss of height. It’s often treated with painkillers, bed rest and by wearing a spinal brace. Operations that can be used to treat compression fractures of the spine include percutaneous vertebroplasty and balloon kyphoplasty.
This procedure repairs the compression fracture by injecting a special cement into the vertebrae, which can help stabilise the bone and relieve pain. This will only be carried out in specialist centres. Side effects are uncommon but can include infection or damage to the nerves in the spine.
This may be used to improve the strength of the spinal bones, which can relieve pain and help people move around more easily. It involves inserting a balloon-like device, called an inflatable bone tamp, into the vertebrae and then slowly inflating it. Once the bone returns to its normal height, it can be injected with bone cement (as above).
This is a newer technique, which will only be carried out in specialist centres. Possible side effects are similar to those of a percutaneous vertebroplasty.
Your doctor or specialist nurse will explain more about percutaneous vertebroplasty or balloon kyphoplasty if they feel that either treatment is appropriate for you.
The National Institute for Health and Clinical Excellence (NICE) gives advice about which treatments should be available on the NHS in England and Wales. It has issued guidance on the use of percutaneous vertebroplasty and balloon kyphoplasty.
It says both treatments are safe and can be used in the NHS, but that other ways of controlling pain should be considered first. NICE also recommends that your doctors fully discuss the treatments with you so that you’re aware of the potential benefits and risks.
Pressure on the spine (spinal cord compression)
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Myeloma can develop in the bones of the spine. Sometimes, the bone may become weakened and put pressure on the spinal cord. This is called spinal cord compression and may cause symptoms such as pain, muscle weakness, and sometimes tingling and numbness of the limbs. If the lower spine is affected, it may also affect how the bowel and bladder work.
If you have weakness, pain, tingling or numbness in your legs, it’s very important to tell your doctor or specialist nurse straight away so that treatment can be given as soon as possible to prevent permanent damage.
Spinal cord compression is usually treated with radiotherapy. Steroids are also given to help reduce the pressure on the spinal cord. Sometimes, surgery is needed to repair or remove the affected bone.
Anaemia is a shortage of red blood cells and is a common symptom of myeloma. It’s caused by myeloma cells reducing the amount of red blood cells produced in the bone marrow. This may make you feel tired and breathless.
It’s common to have anaemia when myeloma is diagnosed, but it will normally get better when treatment begins to bring the myeloma under control.
Sometimes, anaemia can develop as a side effect of your chemotherapy treatment. If this happens, your doctor may suggest that you have a blood transfusion. The blood will be given into a vein in your arm or through your central line or PICC line if you have one.
If you’re having kidney problems, your doctor may give you a drug called erythropoietin to treat anaemia, rather than a blood transfusion. Erythropoietin is normally given by an injection under the skin (subcutaneously).
Excess calcium in the blood (hypercalcaemia)
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Damage to the bones from myeloma can cause an increase in the level of calcium in the blood. This condition is called hypercalcaemia and can cause symptoms such as tiredness, nausea, constipation, thirst, irritability and confusion. In some people, hypercalcaemia is discovered by a blood test before any symptoms develop.
Your doctor may ask you to start drinking plenty of water and will put a drip of fluids into a vein in your arm (intravenous infusion). This will encourage your kidneys to get rid of the excess calcium from your body in your urine.
You may also be given a bisphosphonate drug. These prevent damage to the bone and will quickly reduce high calcium levels. The drug is given into a vein over a few hours and brings the calcium level down over the next 2-3 days. You may need a further dose if your calcium level starts to rise again.
The paraproteins produced in myeloma can block the very fine tubes in the kidneys and stop them filtering waste products from your blood properly. A build-up of calcium in the bloodstream from damaged bones can also cause kidney problems.
This can be treated by giving extra fluids through a drip (infusion). This encourages your body to flush the waste products out of your kidneys in your urine. You can help prevent kidney problems by drinking plenty of fluids each day – three litres (five pints) or more if you can.
Treatment for myeloma will usually reduce the amount of paraprotein in the blood and so help stop kidney problems.
In a small number of cases, kidney damage is severe and the kidneys stop working altogether. This is known as kidney failure. If you have kidney failure, blood is not filtered properly and no urine is produced. Excess fluid then begins to build up in the body. If this happens, you’ll need to have your blood artificially filtered, which is called kidney dialysis.
You can contact our cancer support specialists on 0808 808 00 00 to discuss dialysis.
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Rarely, if myeloma causes a very high level of paraproteins in the blood, the blood can become thicker than normal.
This can cause symptoms such as headaches, confusion, dizziness, blurred vision and abnormal bleeding. To help correct this problem, it’s sometimes possible to have a procedure that removes the excess paraproteins from the blood, called a plasma exchange (plasmapheresis).
Myeloma and some myeloma treatments can cause problems with eating and digestion. If your appetite is poor, you can add high-protein powders to your normal food or you can replace meals with nutritious, high-calorie drinks. These are available from most chemists and can be prescribed by your GP or a dietitian.
If you’ve lost your appetite, medicines such as steroids may help improve it. You can also ask to be referred to a dietitian at your hospital. These are experts in assessing the food needs of people who are ill. They can advise you which foods are best for you and whether any food supplements would be helpful.
If you’re at home, your GP can arrange this for you.
Coping with a poor appetite
Our slideshow has tips about what might help if you have a poor appetite.
Many people with myeloma feel tired and have less energy to do the things they normally do. This may be due to anaemia or may be a side effect of treatment. Try not to do too much. Your body will tell you when you need to rest, although it’s important you don’t completely stop doing things.
When you do feel like doing things, try to pace yourself. Start by setting yourself goals, maybe cooking a light meal or going for a short walk. Keeping a treatment diary of when you’re most tired can help you record your energy levels and plan activities for when you’re likely to feel stronger.
Our section on coping with fatigue has tips to help you cope with tiredness. Or you may want to watch this video to hear how fatigue affected Denton and how he managed it.
Denton talks about coping with fatigue after he had treatment for prostate cancer.