In addition to treatments directed at controlling your myeloma, there are many other ways to help you cope with the symptoms and to avoid developing complications. There is a certain amount of overlap between symptoms of myeloma and side-effects of treatment, so the following sections explain the symptoms you may encounter, although it is unlikely you will have them all. It may be helpful to refer to the symptoms and treatments outlined in this section only when you need to, rather than trying to take in everything that could possibly happen all at once. In any case, keeping a close eye on your general health, and keeping your doctor informed of any changes, will help greatly.
Anaemia
Anaemia is a common problem with myeloma due to a decrease in the number of red blood cells. This leads to a feeling of weakness, lack of energy and tiredness. The bone marrow and its capacity to produce red blood cells can recover with myeloma treatment, so the anaemia does not always need to be treated itself. If it does need treatment, you can be given a blood transfusion to restore the level of red blood cells quickly. Alternatively, erythropoietin (EPO) injections can be given to stimulate production of more red blood cells.
Appetite loss
Sometimes you may have a sore mouth from chemotherapy, or simply do not feel like eating. In this situation, a meal replacement drink may be useful.
Or it can be easier to eat smaller meals, more often than usual, and take a larger meal when you feel able to. Avoid fatty or fried foods and those which are very sweet or spicy. It is important to keep drinking water or other drinks – milk, decaffeinated tea or coffee, ideally up to three litres (five pints) each day, or ordinary tea or coffee in moderation.
If these approaches do not really help, you can ask to be referred to a dietician who can recommend some more alternatives.
Blood problems
The presence of a large amount of paraprotein in the blood of myeloma patients can cause it to thicken (it becomes hyperviscous). This can slow down the passage of blood to the brain and cause dizziness, confusion or even symptoms like those of a stroke. You or someone near you should call for medical help if these symptoms occur. Blood thickening can be treated quickly by a technique called plasmapheresis, which takes blood from a vein and separates the blood cells from the liquid (plasma) component containing the paraprotein, which is discarded. The blood cells are mixed with replacement plasma from a donor and returned to your blood system.
Myeloma can also increase your risk of a blood clot (which could present a risk of deep vein thrombosis or pulmonary embolism), especially if you are taking thalidomide or lenalidomide (Revlimid) in combination with high-dose steroids or chemotherapy drugs. You will be assessed for your risk if you are starting on thalidomide or lenalidomide, or if you need to go into hospital, and treated, if necessary, with an anticoagulant (blood thinner) drug such as warfarin or fondaparinux.
Constipation
This can arise owing to high levels of calcium in the blood, from the breakdown of bone. It can also be a side-effect of treatment with thalidomide or bortezomib. It is important to take advice, so you can find out the cause. Don’t be afraid or embarrassed about telling your doctor about constipation, as they are quite used to this sort of problem and will be able to help resolve something that can be very uncomfortable and have a significant impact on your quality of life.
It is much easier to prevent constipation rather than to treat it, so it is a good idea to make sure that your diet includes some foods that are high in fibre, e.g., bran, wholegrain bread, fruit, vegetables and especially beans or lentils. Cake and white bread should be kept to a minimum; also, sugar-rich foods in general. It is also important to make sure that you don’t become dehydrated, and most people need to drink between 2-3 litres of water every day. That sounds like a lot, but it includes water in tea and coffee. There are also several natural remedies that may help, including seeds, syrup of figs and bran husks, but it is advisable to consult your doctor to check that any natural remedies you wish to try won’t interfere with your medication. Finally, gentle exercise like walking, swimming or cycling should be a regular part of your routine.
If constipation becomes a big problem, your doctor can prescribe several types of laxatives, which either reduce the removal of water from the faeces in the intestine, making them softer, or increase their bulk, or stimulate the movement of the bowel.
Diarrhoea
Diarrhoea is described as episodes of passing loose or watery bowel movements more than three times a day. Â It can be accompanied by headache, stomach cramps and loss of appetite or even nausea and vomiting. Some anti-myeloma drugs e.g., bortezomib (Velcade) or chemotherapy can cause diarrhoea, or it can result from an unrelated infection.
Diarrhoea can also arise if you have AL amyloidosis as well as myeloma.
AL amyloidosis is a disorder which involves the production of an abnormal protein (amyloid) in the bone marrow. AL amyloidosis can occur as a separate condition but can also be identified after a diagnosis of myeloma.
Whatever the cause of your diarrhoea, you should report it to your doctor or nurse so the most appropriate treatment can be prescribed. There are also several things you can do yourself that will help. You should make sure to drink plenty of water or diluted fruit juice and avoid tea and coffee. Keep to small, light meals including chicken, eggs and white fish, and avoid spicy foods. You may also try something known as the B.R.A.T. diet that includes bananas, rice, apple sauce, and toast to help counter the diarrhoea.
Dysphagia (difficulty swallowing)
Some people with myeloma suffer from difficulty in swallowing solids, liquids or both, which is known as dysphagia. This may be associated with coughing or choking while eating or drinking. The cause is not quite clear but may be related to fatigue and weakness or the blood viscosity being raised because of the paraprotein it is carrying. The risk of dysphagia also seems to increase after receiving a stem cell transplant.
Treatment depends on the symptoms experienced, but avoiding meat (which can be hard to swallow) may help, and also therapy can help to reduce the chance of choking.
Fluid retention and kidney failure
Myeloma results in high levels of paraprotein in the blood and a high levels of blood calcium; both of which can damage the kidneys. Acute kidney failure (known as myeloma kidney or cast nephropathy) is often the first symptom of myeloma, which can sometimes severely reduce the kidney’s capacity to filter even before damage has been detected. The kidney failure is caused by the excess light chains blocking the kidney tubules, causing them to fail, thus making them unable to remove waste substances from the blood.
Chronic kidney failure develops over a longer period (weeks or months) and is shown by the presence of light chain proteins in the urine and a rise in creatinine in the blood. Chronic kidney failure is caused either by cast nephropathy, or by deposition of amyloid protein in the kidneys, in patients with amyloidosis. In chronic kidney failure, urine tests show a high level of albumin, while blood tests show low albumin levels. Damaged kidneys let albumin pass from the blood into the urine. Low albumin levels in the blood make it difficult for fluid to stay in the blood vessels, so it then flows into the soft tissues, causing swelling in the legs, ankles or feet.
Kidney failure is usually treated by dialysis and about 20% of myeloma patients need this treatment after some time. Kidney transplantation is not usually available to myeloma patients. It is important in the treatment of myeloma to prevent the occurrence of kidney failure rather than to treat it, and useful guidance is to avoid dehydration (to keep the kidneys actively functioning) and to avoid non-steroidal anti-inflammatory drugs (e.g. ibuprofen). Bisphosphonates (especially zoledronic acid and pamidronate disodium) should be used with caution as these can make kidney problems worse.
Fatigue
Fatigue is a very common symptom of both myeloma and its treatment. It is often made worse by anaemia. Your tiredness can make even routine tasks feel too difficult to attempt, but several approaches can help.
It’s important to get enough sleep, so try to develop a routine of going to bed and getting up at the same time, and take a rest in the daytime when you need to. Gentle exercise can help by improving your appetite and your energy level.
When you need to do particular tasks, spread them out over time and don’t try to do everything at once; focus on whatever is most important or urgent. Accept offers of help from your family and friends – as well as helping you, this can enable loved ones to support you and feel useful. If you are working, investigate whether you could work from home, or reduce your hours or responsibilities.
Hair loss
Most chemotherapy drugs used in treating myeloma cause hair thinning rather than complete loss, which is mainly related to the intensive chemotherapy given before a stem cell transplant. It happens because the chemotherapy drugs attack all the cells in the body, which are rapidly dividing, and among these are the hair follicles. Hair loss can be distressing, but the hair will grow back within a few months after the treatment is completed. Your new hair may be finer than before, or curlier, or a slightly different colour.
Having your hair cut short before you start to lose it through chemotherapy can work well, as you can feel more of a sense of control while it is thinning and growing back. As an alternative, today’s wigs are very natural-looking, or you could use a scarf – many people choose not to cover their heads at all. It’s whatever feels right for you.
Infertility
If you are hoping to have children in the future, you need to know that some myeloma treatments can affect fertility by changing the function of the ovaries or of sperm production, and should take advice from your doctor. This infertility is often temporary, but could be permanent depending on which drugs you are given. Those most likely to affect fertility are cyclophosphamide and melphalan, and permanent infertility is more likely with higher doses, like those given just before a stem cell transplant. Infertility can also arise from radiotherapy of the pelvic area.
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If this is important for you, your doctor can refer you to a fertility specialist to discuss what can be done. It may be possible to undergo sperm or egg collection for later use, and fertility counsellors can provide supportive advice.
Keratopathy or visual changes
Nausea and vomiting
If you have a relatively low level of white blood cells (neutrophils) in your blood, which can happen especially after chemotherapy, you could be at greater risk than normal of food poisoning caused by bacterial or fungal contamination. The shortage of neutrophils, which would normally counteract these agents, is called neutropoenia.
Infection is harder to fight if you have myeloma and neutropenia, so watch out for signs such as a raised temperature, sore throat, nausea, vomiting, or diarrhoea. You should contact your doctor if your temperature goes above 38°C. You may be given antibiotics or antivirals to treat the infection, or intravenous antibodies (immunoglobulins) to boost your immune system.
The risk is also increased because the lining of the gut can be damaged by chemotherapy and radiotherapy, which makes it easier for bacteria in food to enter the bloodstream.
If you develop neutropoenia, you will be given detailed advice by your doctor or dietician on which foods to avoid and which are good alternatives. The strictness of this advice depends on your level of neutrophils. You may need to continue following this guidance even after your neutrophil count has recovered, as you may still be at a higher risk of infection.
The main foods to avoid are unpasteurised dairy products (like farm-fresh milk); soft or blue cheeses; raw or lightly cooked shellfish; raw, undercooked, or smoked meat, poultry or fish; raw or undercooked eggs or foods that contain them, like sauces or ice-cream; foods, drinks and supplements described as ‘probiotic’ or ‘bio’, and meat or vegetable pâtés.
You will also need to follow a high level of food safety hygiene practices in everything related to your food – shopping, food preparation and storage. There are many points to consider, and you will be given detailed guidance, but for example: avoid buying food with damaged packaging and avoid large packets that will be open for longer thus increasing the chance of contamination. Always store raw and cooked foods separately and make sure that any frozen food is covered and stored at the bottom of the fridge (rather than at room temperature) for defrosting, to avoid it dripping onto other food. Cook all food thoroughly until it is piping hot throughout and the meat juices run clear. Take care with hand hygiene: always wash your hands before preparing food and after touching your hair, pets, rubbish, dirty laundry and visiting the toilet. Keep a separate chopping board for raw meat or fish and do not use it for other foods.
Pain
Peripheral neuropathy
Peripheral neuropathy means damage to the peripheral nervous system, all the nerves in the body except the brain and spinal cord. These nerves communicate between the brain and the other parts of the body and are composed of two types of specialised cells: motor neurons and sensory neurons. The motor neurons carry electrical impulses from the brain to the muscles and enable them to carry out movement by contracting or relaxing. The sensory neurons carry information about the sensations of pain and touch to the brain from all external parts of the body. When these sensory neurons are damaged in peripheral neuropathy, the sensory messages can be distorted or interrupted, which the brain interprets as tingling, numbness, altered sensation, increased sensitivity to touch, or pain. The sensations are most often felt in the hands and feet.
Peripheral neuropathy is present in a small proportion of patients when they are diagnosed with myeloma, but about four out of five will develop its symptoms to some extent later; either through myeloma itself through deposits of paraprotein in the nerve cells, or as a side-effect of treatment. Thalidomide, bortezomib (Velcade) and vincristine can all contribute to peripheral nerve damage.
The treatment for peripheral neuropathy depends on what has caused it. If it is caused by myeloma, then the myeloma treatments themselves should reduce the neuropathy. If it has arisen as a side-effect, then the treatment concerned can be stopped or given at a reduced dose. If it is a side-effect of bortezomib (Velcade), it may be sufficient to change from intravenous to subcutaneous administration (injection into the skin rather than into a vein). Some of the neuropathy caused by medications may subside once you stop or change doses, but some of it may also be permanent.
Pain from peripheral neuropathy can be relieved by a range of drugs including amitriptyline, gabapentin or carbamazepine; by local anaesthetic or by a TENS machine (transcutaneous electrical nerve stimulation), which delivers tiny electrical impulses to the nerves in the skin.
Skin conditions
Thalidomide and bortezomib (Velcade) can result in dry, itchy skin rashes, or rarely, thalidomide can cause a more serious rash with blistering. If this happens, the medication should be reduced or withdrawn.
It is worth also being aware of shingles, which is a viral infection to which myeloma patients are more susceptible than other people. Shingles is an infection of a nerve and the skin around it, and causes an itchy, painful rash that is normally on one side of the body; on the chest, abdomen or face. The rash forms blisters which eventually burst and crust over. Shingles can be treated by antiviral tablets (aciclovir, valaciclovir or famciclovir), which work best if started in the early stages. Calamine lotion will relieve itching and has a cooling effect, or a cloth soaked in cold water will soothe the blistered skin but should be stopped once the blisters have stopped oozing.
Spinal cord compression
Myeloma bone disease involves the breakdown of bone faster than it can be repaired. If this happens in the spine or ribs, even minor pressure can cause the bone to fracture. A break in one or more spinal vertebrae can cause the vertebrae to collapse and is sometimes the cause of compression of the spinal cord and loss of height. The symptoms of spinal cord compression are sudden back pain and loss of sensation in the legs or genital area, and it may also involve incontinence, inability to pass urine, or constipation.
Urgent treatment is requiered, and this is considered an emergency. To prevent permanent damage to your spinal cord a surgical procedure may be needed. One option is a percutaneous vertebroplasty, a type of bone cement is injected into the vertebra, which stabilises the joint and reduces pain. The other, known as balloon kyphoplasty, involves inserting a small inflatable balloon into the vertebra before the cement is injected. In some cases, this can also restore height and correct any spine curvature, as well as relieving the pain.
Thrombocytopaenia (low level of blood platelets)
The production of abnormal plasma cells in the bone marrow leads to a lower production of other blood cells, including blood platelets. These are involved in blood clotting, so if you have a relatively low level of platelets in your blood, you can be more prone to bleeding or bruising. It can also occur as a side-effect of myeloma treatments, including thalidomide, bortezomib (Velcade), lenalidomide (Revlimid), cyclophosphamide and melphalan.
The condition is known as thrombocytopaenia, and it may give no symptoms at all, or spontaneous bleeding from the gums or nose, extended bleeding from cuts, excessive bruising, or a red rash of tiny pinpoint marks, commonly in the lower legs.
The routine lab test looking at your complete blood count (see Diagnosis test) will monitor any changes in the level of blood platelets. The condition will improve gradually as a result of your myeloma treatment, and the bone marrow will become better able to produce platelets. If the thrombocytopaenia is a side-effect of treatment, it may be necessary to reduce the dose, or delay treatment until your platelet level recovers.
You should monitor for any unusual bleeding and report it to your doctor. It is also a good idea to avoid anything that could give rise to bleeding or bruising, and to use a soft toothbrush to avoid damaging your gums. Limiting your alcohol intake is helpful, as alcohol tends to reduce the platelet level and ‘thin’ the blood. If you see blood in urine, stools or vomit, this should be reported immediately.
