Treatment side effects

As it is mentioned in the treatment section, since AL amyloidosis is a disease which manifests quite differently from patient to patient, treatment usually is highly individualised as well. Your doctor might take different approaches involving different types of drugs or procedures. Below, you will find a list of side effect that you might experience depending on the treatment you are receiving.

Sometimes you may have a sore mouth from chemotherapy, or simply don’t feel like eating, so a meal replacement drink may be easier to consume.

It can also 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 that are very sweet or spicy. It is important to keep drinking water or other drinks too – milk, squash, decaffeinated tea or coffee each day, or ordinary tea or coffee in moderation.

If these approaches don’t help, you can ask to be referred to a dietician, who can recommend some more alternatives.

AL amyloidosis itself may result in constipation. Constipation may also arise as a side effect of treatment, so it is important to ask for advice from your doctor or healthcare team to find out the cause. Don’t be afraid or embarrassed to tell your doctor about constipation, as they are quite used to this sort of problem and will be able to help resolve what can be a distressing problem with a big impact on your quality of life.

As it is much easier to prevent constipation than to treat it, 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; the same goes for sugar-rich foods in general, as simple carbohydrates can cause or worsen constipation. It is also important to make sure that you don’t become dehydrated. Use of natural remedies should be discussed with your doctor, too, in case of any interaction with your medication. Finally, gentle exercise like walking, swimming or cycling could be a regular part of your routine but must be performed carefully especially in patients with heart involvement.

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 is considered as episodes of passing loose or watery bowel motions more than three times a day. It can be accompanied by headache, stomach cramps and loss of appetite or even nausea and vomiting. AL amyloidosis can give rise to diarrhoea due to its disruptive effect on the normal functioning of the gastro-intestinal tract. Some chemotherapy drugs, for example, bortezomib, can also cause diarrhoea, or it can result from an unrelated infection.

If you are experiencing diarrhoea, you should report it to your doctor or healthcare team so the most appropriate treatment can be prescribed. There are also several things you can do yourself that will help. Make sure you 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.

Dysphagia refers to difficulty in swallowing solids, liquids or both, and may be associated with coughing or choking while eating or drinking. Dysphagia is a possible side effect after a stem cell transplant. Treatment depends on the symptoms experienced but avoiding meat (which can be hard to swallow) may help, and therapy can help reduce the chance of choking.

Amyloid proteins can cause damage to the kidneys among other organs. Misfolded light chain proteins can block the kidney tubules, causing them to fail to remove enough waste substances from the blood through urination.

Chronic kidney failure develops over a longer period (weeks or months) and is shown by the presence of protein in the urine (proteinuria); this is caused by the deposition of amyloid protein in the kidneys. The urine shows a high level of albumin, and the blood has a very low level. Fluid retention follows, causing

swelling in the legs, ankles or feet. Rapid increase of body weight can be a sign of fluid overload. Other symptoms include tiredness and difficulty breathing.

To reduce the risk of fluid overload, your doctor can recommend that you limit your fluid intake (likely to be around or less than 1.5 litres) and keep your salt intake to a minimum. Daily weight checks can help detect fluid overload and your doctor might ask you to weigh yourself every day – if he/she thinks you are at risk, in order to take appropriate measures. If, despite an appropriate diet and fluid intake limitations, you experience fluid overload, it can be treated with diuretics.

Renal failure is usually treated by dialysis. Preventing the occurrence of kidney failure rather than treating it once it arises is much more viable, so avoid getting dehydrated (to keep the kidneys actively functioning), and using non-steroidal anti-inflammatory drugs (e.g. ibuprofen).

Fatigue is both a common symptom of AL amyloidosis, as well as a regularly experienced side effect of treatment. It can be aggravated by anaemia.

Exhaustion can make it difficult to meet even the basic challenges of day-to-day life, however, some approaches may be helpful to mitigate this.

Getting enough sleep is vital. Try to make a routine of going to bed and getting up at the same time, and take a rest during the day when you need to. Gentle exercise can help by improving your appetite and your energy level.

When you need to do certain tasks, spread them out over time instead of trying 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 will make them feel that they are being useful in some way. If you are working, investigate whether you could work from home, or reduce your hours or responsibilities.

Most chemotherapy drugs used in the treatment of AL amyloidosis cause hair thinning rather than complete loss, which is mainly related to the intensive chemotherapy given before a stem cell transplant. Hair loss 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. Otherwise, today’s wigs are very natural-looking, or you could use a scarf – and many people choose not to cover their heads at all. It’s entirely a matter of what feels right for you.

Some of the medications used in the treatment of AL amyloidosis can affect fertility. Hence, it is vital to consult your doctor in case you are planning to have children in the future. The infertility caused by treatment 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.

Your doctor may be able to 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. Reimbursement for these procedures varies from one country to another; you can ask your doctors what your healthcare system’s options are.

Side effects from chemotherapy drugs (e.g., bortezomib) may include nausea and vomiting. Infections that arise when treatment suppresses the immune system can also cause nausea and vomiting. In case these are chemotherapy-related, they can be treated with anti-emetics. If they are caused by an infection, antibiotics may be needed. Aside from drug treatment, it can be helpful to eat small, frequent meals and avoid foods that are fatty, spicy or have a strong smell, as these may further aggravate your nausea or upset your stomach.

Chemotherapy may result in a lower level of neutrophils (a type of white blood cell) in the blood, and a shortage of neutrophils is referred to as neutropaenia. This may put you at greater risk than normal of food poisoning caused by bacterial or fungal contamination. There is also an increased risk of other kinds of bacterial infections such as pneumonia or urinary tract infection. The risk is also increased because the lining of the gut can be damaged by chemotherapy, which makes it easier for bacteria in food to enter the bloodstream.

If you develop neutropaenia, you will be given detailed advice by your doctor or dietician about which foods to avoid and which are good alternatives. In addition, avoiding crowded areas is also important when trying to prevent infection. 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 pates.

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 take into account, and you will be given detailed guidance. For example, avoid buying food with damaged packaging and avoid large packets that will be open for longer, and could increase the chance of contamination. Always store raw and cooked foods separately and make sure that frozen food is defrosted, covered and at the bottom of the fridge (rather than at room temperature), to avoid it dripping onto other food. Cook all food thoroughly until it is piping hot all the way through and the meat juices run clear. Take care with hand hygiene too: 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.

Granulocyte-colony stimulating factor (G-CSF) is a medication that may be administered to hasten neutrophil recovery. G-CSF is mostly given via an injection under the skin. It can also be injected into the bloodstream (intravenously).

Any form of pain or discomfort, regardless of whether it arises as a symptom of the disease itself or as a side effect of therapy, should be reported to your doctor or healthcare team, as they may be able to prescribe medication to lessen or alleviate your discomfort, or evaluate what the cause is.

Damage to the peripheral nervous system (PNS) is referred to as peripheral neuropathy. The PNS includes 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 may occur as a result of the deposition of amyloid protein in and around the nerves, or as a side effect of treatment, for example, bortezomib can cause peripheral nerve damage.

The treatment for peripheral neuropathy depends on its cause. If it is caused by the disease, then treatment may 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, it may be sufficient to change from intravenous to subcutaneous administration (injection into the skin rather than into a vein).

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.

Some chemotherapy drugs (e.g., bortezomib) can result in a rash and dry, itchy skin rashes. If this happens, the medication should be reduced or withdrawn.

Blood platelets are vital for the blood clotting process. Consequently, a low level of platelets in the blood can make you more prone to bleeding or bruising. Having a below normal level of platelets is known as thrombocytopaenia. This may arise as a side effect of treatment with bortezomib, cyclophosphamide and melphalan. Thrombocytopaenia 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. If the thrombocytopaenia develops as a side effect of treatment, it may be necessary to reduce the dose, or delay treatment until your platelet level recovers.

You should watch 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 alcohol intake is helpful too, as alcohol tends to reduce the platelet level and ‘thin’ the blood. If you see blood in your urine, stools or vomit, report it immediately to your doctor.

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