AL Amyloidosis Treatment Centre

The AL amyloidosis team includes doctors, clinical nurse specialists (CNSs) and clinical trials practitioners who specialise in treating AL amyloidosis. You will also meet other healthcare professionals during your care, such as: 

• pharmacists
• cardiologists – experts in heart and blood vessel health
• nephrologists – experts in diagnosing and treating kidney conditions

The team is called a multidisciplinary team (MDT) because it includes experts from different areas of medicine and care. The MDT meets regularly to discuss each patient’s diagnosis and treatment plan. They make sure every patient receives the best care, with the right tests and treatment. 

You’ll be assigned a main consultant who oversees your care. During your visits, you may also see other doctors in the team. You can ask to see a specific doctor, but this may not always be possible with the way the clinic is scheduled. All our doctors work closely together to provide you with the best treatment and care. 

If you need to stay in hospital, the ward’s specialist myeloma team will care for you. They will work closely with experts from the haematology, heart, and kidney teams to give you the best care.

Outpatient appointments take place every Tuesday and Wednesday at the University College Hospital Macmillan Cancer Centre. 

If suitable, we may offer you a telephone appointment instead of asking you to come to the hospital. We will let you know in advance if your consultation will be over the phone.  

You can view your appointment details and clinic letters on our patient portal, myCare UCLH. If you have any trouble signing up, your CNS can help you. 

Blood tests

If you have a follow-up appointment in the clinic, you should have your blood test taken before your consultation. This is to make sure that we have all the information we need to assess your condition and plan your treatment.

You can have your blood test on the lower ground floor of the Cancer Centre on the day of your face-to-face appointment. If you have a telephone consultation, you should have your blood test a couple of days in advance. We will talk to you about this in more detail. 

You can now book your blood test using a system called Swiftqueue. If you have any problems with using the system, speak to your CNS.

Clinical nurse specialists (CNSs) are here to support you. They:   

• are your main contact for any questions or concerns 
• give you clear information about your diagnosis, tests and treatment 
• offer emotional support to you and your family throughout your care  
• advise on how to manage at home  
• talk with you about any side effects, health worries or medicines you take     
• check your blood pressure and weight, and help with any medicine changes  
• work closely with your healthcare team to coordinate your care in hospital and at home    
• refer you and your family to support services, such as counselling, complementary therapy, or help with benefits   
• share information about clinical trials you may be able to join.

Many patients have some or all of their treatment in the Daycare Unit at the Cancer Centre. Some people may need to stay in the hospital for treatment, depending on their health needs. Your CNS will advise you on this.

AL amyloidosis is a serious illness that can affect important organs, such as your heart and kidneys. While there isn’t a cure yet, there are treatments that can help to manage the condition. These treatments focus on the underlying cause – a type of blood cancer that causes the amyloid protein to build up. One of the main treatments is chemotherapy. It helps to lower the amount of protein that forms amyloid and slow down further damage. 

Right now, we don’t have a way to remove the amyloid that’s already in your organs. But your doctor will work with you to manage your symptoms and support your wellbeing. 

What happens next depends on how far the condition has progressed. Some people need to spend more time in hospital, especially if there are complications. These complications, such as heart or kidney failure, are life-threatening.  

Sadly, around 4 in 10 people with advanced cardiac amyloidosis die within the first three months of diagnosis, often suddenly. Of those who survive the early stages, about 2 in 10 may die within five years. These numbers can be difficult to hear, but they help give a clearer picture of how serious the condition can be. 

Your consultant and CNS are here to support you. If you ever have questions or worries, please contact them. They will take the time to talk to you and your family or carers about what to expect. This may include:

• the different treatment options available to you
• possible side effects and how they can be managed
• guidance on continuing to work
• how to get in touch for advice and support throughout your care
• practical tips for managing your condition day-to-day

We have also included some helpful advice below.

Control your fluid intake

When your heart and kidneys are affected by amyloidosis, it may be harder for your body to get rid of extra fluid. This can lead to fluid building up in your body. 

If you have cardiac amyloidosis, it’s very important to control and measure how much fluid you drink. When your heart gets stiff, it can’t pump blood properly. This leads to fluid buildup. You may notice swelling in your legs or ankles, feel breathless, or have worsening kidney problems. 

Both too much or too little fluid can make things worse. 

• Most people should drink 1.5 to 2 litres of fluid per day.
• Some people need to stay under 1.5 litres. Your doctor will tell you your exact limit.
• Drinking too little can cause low blood pressure or kidney issues. Your healthcare team will tell you the minimum amount you should drink.

What counts as fluid?

Anything you can pour counts – water, tea, coffee, juice, soup, milk (even on cereal).

Your fluid needs may change based on your symptoms or blood test results. Your doctor or nurse will let you know if any changes are needed.

Limit your salt

Too much salt makes your body hold onto more fluid. 

Try to: 

• avoid adding salt to food
• eat less salty food like crisps, canned soups or meat, sausages, bacon and smoked fish

If your blood salt level is too low, we may ease this restriction. Your doctor or nurse will advise you. They can also arrange an appointment with a dietitian if you need support with food choices.

Check your weight daily

Gaining weight can be a sign of fluid buildup.

• Weigh yourself every morning after going to the toilet and before eating.
• Use the same digital scale, wearing only underwear.
• Record your weight in kilograms.

Call your doctor or nurse if you:

• gain 2kg or more in a couple of days
• feel breathless or your legs swell

Diuretics (water tablets)

Your doctor may give you water tablets to help your body get rid of extra fluid. These tablets make you pee more, which helps remove extra salt and water from your body.

They can help with: 

• swelling in your legs or ankles
• feeling breathless

The dose may change depending on your symptoms and weight. Always follow the advice of your doctor or nurse about the dose you should take. When you come to the clinic, know the current dose you are taking.

Monitor your blood pressure

People with cardiac amyloidosis often have low blood pressure. It may drop when you stand up.

We recommend:

• Buying a home blood pressure monitor (let us know if this is a problem for you). 
• Measuring your blood pressure every morning: 

1. First while lying down. 
2. Then again after standing for 1 minute (keep the cuff on your arm). 

Your team will give you a chart to record your results. This helps your doctor to assess your fluid levels and manage your medicines. 

Call for advice as soon as possible if you:  

• feel light-headed
• tire easily
• faint when standing

You may need a medication to help raise your blood pressure.

Please note: Some blood pressure medications may need to be stopped. Always tell your hospital team about all the medicines you're taking, including those from your GP or other doctors.

Please tell your doctor or CNS about any symptoms you notice – either at your clinic visit or by calling the haematology helpline on 020 3447 7359. 

Some symptoms are more serious and need urgent medical attention. Do not wait for your next appointment if you have any of the symptoms below. Call your doctor or CNS right away on 020 3447 7359 or 07852 220 900. If you feel very unwell, call 999 for an ambulance.

These symptoms include:

• Fever – A temperature over 38°C for more than an hour, or any temperature over 39°C.
• Breathlessness – If you cannot speak a full sentence without becoming breathless.
• Very low blood pressure – If you are unable to record your blood pressure or if it is below 90/60. For reference: A typical reading is around 120/80 but this varies from person to person and changes with age.
• Fainting or sudden collapse.
• Extreme tiredness or fatigue – So severe that you cannot get out of bed or do your usual activities.
• Severe nausea (feeling sick), vomiting (being sick), or diarrhoea (loose, watery poo).
• Rapid weight gain.
• Ongoing chest pain.

This is not a full list. If you feel something is wrong, please seek medical help straight away.

Haematology helpline: 020 3447 7359 (Monday to Friday, 9am to 5pm)

Out of hours, weekends and bank holidays: 07852 220 900

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