Patient information - AL amyloidosis - Daratumumab and CyBorD (cyclophosphamide, bortezomib and dexamethasone) weekly

• You may get low blood pressure.
• You may feel dizzy or light-headed.
• Tell your doctor if you are taking blood pressure medication.
• Your doctor will monitor your blood pressure regularly while you are on this treatment.
• When you want to get up from a sitting or lying down position, get up slowly to let your body adjust to the new position.
• Tell your doctor or nurse if you get any of the signs or symptoms listed above.

• Allergic reactions are uncommon but can be life threatening.
• If you feel unwell during the infusion or shortly after it, or:
  • get a fever, shivers or shakes
  • feel dizzy, faint, confused or anxious
  • start wheezing or have difficulty breathing
  • have a rash, itch or redness of the face

While you are in hospital: Tell your doctor or nurse immediately.

After you leave: Contact your doctor or nurse immediately, or go to the nearest hospital Emergency Department.

• At the injection site you may get pain, redness, swelling or bruising.
• These symptoms are usually not serious.
• Tell your doctor or nurse immediately if you notice any redness or pain during or after treatment.

• You may feel sick (nausea) or be sick (vomit).
• Take your anti-sickness medication as directed even if you don’t feel sick.
• Eat small meals more frequently.
• Try food that does not require much preparation.
• Try bland foods like dry biscuits or toast.
• Gentle exercise may help with nausea.
• Ask your doctor or nurse for eviQ patient information - Nausea and vomiting during cancer treatment. 
• Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you have uncontrolled vomiting or feel dizzy or light-headed.

• You may find that food loses its taste or tastes different.
• These changes are likely to go away with time.
• Do your mouth care regularly.
• Chew on sugar-free gum or eat sugar-free mints.
• Add flavour to your food with sauces and herbs.
• Ask your doctor or nurse for eviQ patient information - Taste and smell changes during cancer treatment.

• This treatment lowers the amount of white blood cells in your body. The type of white blood cells that help to fight infection are called neutrophils. Having low level of neutrophils is called neutropenia. If you have neutropenia, you are at greater risk of getting an infection. It also means that your body can’t fight infections as well as usual. This is a serious side effect, and can be life threatening.
• Wash your hands often.
• Keep a thermometer at home and take your temperature regularly, and if you feel unwell.
• Do your mouth care regularly.
• Inspect your central line site (if you have one) daily for any redness, pus or swelling.
• Limit contact with people who are sick.
• Learn how to recognise the signs of infection.
• Ask your doctor or nurse for eviQ patient information - Infection during cancer treatment.
• Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you get any of the following signs or symptoms:
  • a temperature of 38°C or higher
  • chills, shivers, sweats or shakes
  • a sore throat or cough
  • uncontrolled diarrhoea
  • shortness of breath
  • a fast heartbeat
  •  become unwell even without a temperature.

• This treatment lowers the amount of platelets in your body. Platelets help your blood to clot. When they are low, you are at an increased risk of bleeding and bruising
• Try not to bruise or cut yourself.
• Avoid contact sport or vigorous exercise.
• Clear your nose by blowing gently.
• Avoid constipation.
• Brush your teeth with a soft toothbrush.
• For minor pain take paracetamol. Do not take any medications containing aspirin or ibuprofen without talking to your doctor or nurse.
• Tell your doctor or nurse immediately, or go to your nearest hospital Emergency Department if you have any uncontrolled bleeding.

• You may get muscle, joint or general body pain and stiffness.
• Applying a heat pack to affected areas may help.
• Talk to your doctor or nurse about other ways to manage these symptoms. You may need medication to help with any pain.

You may have bowel motions (stools, poo) that are less frequent, harder, smaller, painful (constipation) or difficult to pass or that are more frequent or more liquid (diarrhoea)

• You may also get:
  • bloating, cramping or pain
  • a loss of appetite 
  • nausea or vomiting.
• Tell your doctor or nurse if you have not opened your bowels for more than 3 days or are experiencing diarrhoea
• Tell your doctor or nurse immediately, or go to your nearest hospital Emergency Department if your diarrhoea is not controlled, you have 4 or more loose bowel motions per day, and if you feel dizzy or light-headed.

• You may have a cough.
• You may feel short of breath.
• Tell your doctor or nurse immediately if you feel you have a cough or feel short of breath.

• You may feel very tired, have no energy, sleep a lot, and not be able to do normal activities or things you enjoy.
• Do not drive or operate machinery if you are feeling tired.
• Nap for short periods (only 1 hour at a time)
• Prioritise your tasks to ensure the best use of your energy.
• Eat a well balanced diet.
• Try some gentle exercise daily.
• Allow your friends and family to help.
• Tell your doctor or nurse if you get any of the symptoms listed above.

• You may feel warm.
• Tell your doctor or nurse if you get this symptom.

• You may gain weight over a short amount of time.
• Your hands and feet may become swollen, appear red or feel hot and uncomfortable.
• Wear loose clothing and shoes that are not too tight.
• Try not to stand up or walk around too much at one time.
• If your ankles or legs get swollen, try raising them.
• Make sure that any cuts or areas of broken skin are treated as soon as possible.
• Tell your doctor or nurse as soon as possible if you get any of the symptoms listed above or gain 1 to 2 kg in a week.
• Tell your doctor or nurse immediately or go to the nearest hospital Emergency Department if you become short of breath. 

• You may get: 
  • blood in your urine, sometimes with blood clots
  • pain or burning when you urinate
  • the urge to urinate more than normal
  •  stomach or pelvic pain or discomfort.
• Empty your bladder often.
• Tell your doctor or nurse as soon as possible if you notice any blood in your urine.

• You can take paracetamol if you have a headache.
• Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you get a very bad headache that is not helped by pain medication.

• You may have trouble falling or staying asleep. 
• Try some gentle exercise daily.
• Avoid coffee, tea and other caffeinated drinks around bedtime.
• Try something to relax before bed, like a bath or meditation.
• If you can't sleep get up and do something quietly, such as reading, until you feel tired.
• Tell your doctor or nurse if you have difficulty sleeping.

• You may not have any signs or symptoms if you have high blood pressure. 
• If it is severe you may get headaches, shortness of breath or feel dizzy. 
• Your blood pressure will be taken regularly during your treatment.
• Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you get any of the signs or symptoms listed above. 

• You may notice a change in the sensations in your hands and feet, including:
  • tingling or pins and needles
  • numbness or loss of feeling
  • pain.
• You may find it difficult to do everyday activities, such as doing up buttons or picking up small objects. 
• Test water temperature with your elbow when bathing to avoid burns.
• Use rubber gloves, pot holders and oven mitts in the kitchen.
• Wear rubber shoes or boots when working in the garden or garage.
• Keep rooms well lit and uncluttered.
• Ask your doctor or nurse for eviQ patient information  – Nerve problems during cancer treatment. 
• Tell your doctor or nurse if you get any of the symptoms listed above.

• You can develop a chest infection whilst receiving this treatment.
• Tell your doctor or nurse as soon as possible if you get any of the following symptoms:
  • shortness of breath
  • difficulty breathing
  • wheezing
  •  coughing up mucus

• Steroid medication may cause:
  • mood swings and behaviour changes
  • an increased appetite
  • weight gain
  • swelling in your hands and feet
  • stomach upsets
  • trouble sleeping
  • fragile skin and bruising
  • an increase in your blood sugar level
  •  weak and brittle bones (osteoporosis)
• Take your steroid medication with food to reduce stomach upset
• You may need to monitor your blood sugar levels closely while you are taking steroids
• If you have diabetes, your blood sugar levels may be tested more often and your diabetic medication may need to be adjusted because of the effects of steroids. Talk to your diabetes advisor if you have any concerns
• Tell your doctor or nurse if you get any of the symptoms listed above.

• You may get a red, bumpy rash and dry, itchy skin. 
• Moisturise your skin with a gentle non-perfumed moisturising cream like sorbolene or aqueous cream.
• Do not scratch your skin.
• Protect your skin from the sun by wearing sun-protective clothing, a wide-brimmed hat, sunglasses and sunscreen of SPF 50 or higher.
• Talk to your doctor or nurse about other ways to manage your skin rash.

• Blood clots can occur with this treatment. 
• Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you get any of the following signs or symptoms:
  • redness, heat or pain in your leg(s)
  • numbness or weakness in your face, arm or leg
  • chest pain
  • sudden shortness of breath
  • dizziness
  • trouble speaking
  • blurred vision
  • severe headache
  • unexplained falls or loss of balance.

• You may feel dizzy, light-headed, tired and appear more pale than usual.
• Tell your doctor or nurse if you have any of these signs or symptoms. You might need a blood transfusion.
• Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you have any chest pain, trouble breathing, or feel like your heart is racing.

• Your hair may start to fall out from your head and body.
• Hair loss usually starts 2 to 3 weeks after your first treatment.
• You may become completely bald and your scalp might feel tender.
• Use a gentle shampoo and a soft brush.
• Take care with hair products like hairspray, hair dye, bleaches and perms.
• Protect your scalp from the cold with a hat, scarf or wig.
• Protect your scalp from the sun with a hat or sunscreen of SPF 50 or higher.
• Moisturise your scalp to prevent itching.
• Ask your doctor or nurse about the Look Good Feel Better opens in a new tab or window program 

• You may not feel like eating.
• Try to avoid drinking fluids at meal times.
• Try to eat small meals or snacks regularly throughout the day.
• Try to eat food that is high in protein and calories.
• If you are worried about how much food you can eat, or if you are losing weight, ask to speak to a dietitian.

• You may notice that you are unable to concentrate, feel unusually disorganised or tired (lethargic) and have trouble with your memory.
• These symptoms usually improve once treatment is completed.
• Ask your doctor or nurse for eviQ patient information – Memory changes and chemotherapy (chemo brain). 
• Tell your doctor or nurse if you get any of the symptoms listed above.

• Lung problems are rare, but can be serious. They may occur throughout treatment or after the completion of treatment. 
• You may get:
  • shortness of breath
  • fever
  • dry cough
  • wheezing
  • fast heartbeat
  •  chest pain.
• Your doctor will monitor how well your lungs are working during your treatment.
• Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you have chest pain or become short of breath.