Panobinostat, bortezomib and dexamethasone

Panobinostat, bortezomib and dexamethasone are a combination of cancer drugs. You can see below how to pronounce the drug names.

• panobinostat – pan-oh-bin-oh-stat
• bortezomib – bor-teh-zoh-mib
• dexamethasone – deks-ah-meth-uh-zone

It is a treatment for myeloma.

You may have it when other treatments have stopped working or the myeloma has come back.

How does panobinostat, bortezomib and dexamethasone work?

Panobinostat and bortezomib are types of targeted cancer drugs called cancer growth blockers. They work in different ways to stop myeloma cells dividing and growing.

Dexamethasone is a steroid. It helps the other drugs to work better and kills myeloma cells.

How do you have panobinostat, bortezomib and dexamethasone?

You take panobinostat as capsules, and dexamethasone as tablets. You have bortezomib as an injection under the skin.

Taking your tablets or capsules

You should take the right dose, not more or less.

Talk to your healthcare team before you stop taking a cancer drug, or if you have missed a dose.

Injection under the skin

You usually have injections under the skin (subcutaneous injection) into the tummy (abdomen) or thigh.

You might have stinging or a dull ache for a short time after this type of injection but they don't usually hurt much. The skin in the area may go red and itchy for a while.

How often do you have panobinostat, bortezomib and dexamethasone?

You have panobinostat, bortezomib and dexamethasone as cycles of treatment  . Each cycle is usually 21 days but sometimes a 28 day cycle is used. 

You usually have between 8 and 16 cycles, depending on how well the treatment is working and if the side effects aren’t too bad.

Bortezomib can be given once a week or twice a week.

Exactly how you have your drugs may depend on your circumstances. The following is an example. 

For the first 8 cycles of treatment you usually have panobinostat, bortezomib and dexamethasone in the following way:

For cycles 9 to 16, you have treatment in a similar way but you have bortezomib once a week and dexamethasone twice a week. You continue with panobinostat 3 times a week.

Tests

You have blood tests before and during your treatment. They check your levels of blood cells and other substances in the blood. They also check how well your liver and kidneys are working.

What are the side effects of panobinostat, bortezomib and dexamethasone?

Side effects can vary from person to person. They also depend on what other treatments you're having. 

When to contact your team

Your doctor, nurse or pharmacist will go through the possible side effects. They will monitor you during treatment and check how you are at your appointments. Contact your advice line as soon as possible if:

• you have severe side effects 

• your side effects aren’t getting any better

• your side effects are getting worse

Early treatment can help manage side effects better. 

We haven't listed all the side effects here. Talk to your healthcare team if you have any new symptoms that you think might be a side effect of your treatment.

Remember it is very unlikely that you will have all of these side effects. But you might have some of them at the same time.

Common side effects

These side effects happen in more than 10 in 100 people (more than 10%). You might have one or more of them. They include:

Increased risk of getting an infection 

Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in temperature, aching muscles, cough, headaches, feeling cold and shivery, pain or burning feeling when weeing, or generally feeling unwell. You might have other symptoms depending on where the infection is.

Infections can sometimes be life threatening. You should contact your advice line urgently if you think you have an infection. 

Breathlessness and looking pale

You might be breathless and look pale due to a drop in red blood cells. This is called anaemia.

Bruising, bleeding gums or nosebleeds

This is due to a drop in the number of platelets in your blood. These blood cells help the blood to clot when we cut ourselves. You may have nosebleeds or bleeding gums after brushing your teeth. Or you may have lots of tiny red spots or bruises on your arms or legs (known as petechiae).

Less commonly, you might have bleeding in the stomach or bowel, or inside the skull (intracranial haemorrhage). Call your advice line if you have any signs of bleeding.

Loss of appetite and weight 

You might lose your appetite for various reasons while having cancer treatment. Sickness, taste changes or tiredness can put you off food and drinks.

Low levels of minerals in the blood

You might have low levels of phosphate, sodium or potassium in your blood. Less commonly, you might have low levels of calcium or magnesium. You will have regular blood tests to check for this.

Difficulty sleeping (insomnia)

If you have difficulty sleeping, it can help to change a few things about how you try to sleep. Try to go to bed and get up at the same time each day and spend some time relaxing before you go to bed. Some light exercise each day may also help. 

Headaches or dizziness 

Let your doctor or nurse know if you have headaches. They can give you painkillers. Don’t drive or operate machinery if you feel dizzy.

Low blood pressure

Tell your doctor or nurse if you feel light headed or dizzy. You have your blood pressure checked regularly.

Less commonly you might have high blood pressure. Symptoms include headaches, nose bleeds, blurred or double vision or shortness of breath.

Breathlessness and cough 

Tell your doctor if you have a cough or feel short of breath. This could be due to different reasons, including an infection such as pneumonia. The cough could be dry, or you might have phlegm. You might also sweat, feel shivery, and have a fast heartbeat.

Less commonly you might have wheezing or there might be changes to how well your lungs are working.

Diarrhoea 

Contact your advice line if you have diarrhoea. For example, in one day you have 2 or more loose bowel movements than usual. If you have a stoma , you might have more output than normal. Your doctor may give you anti diarrhoea medicine to take home with you after treatment.

Try to eat small meals and snacks regularly. It’s best to try to have a healthy balanced diet if you can. You don’t necessarily need to stop eating foods that contain fibre. But if your diet is normally very high in fibre, it might help to cut back on high fibre foods such as beans, nuts, seeds, dried fruit, bran and raw vegetables. 

Drink plenty to try and replace the fluid lost. Aim for 8 to 10 glasses per day.

Feeling or being sick 

Feeling or being sick is usually well controlled with anti sickness medicines. It might help to avoid fatty or fried foods, eat small meals and snacks and take regular sips of water. Relaxation techniques might also help.

It is important to take anti sickness medicines as prescribed even if you don’t feel sick. It is easier to prevent sickness rather than treat it once it has started.

Indigestion

Contact your doctor or pharmacist if you have indigestion or heartburn. They can prescribe medicines to help.

Tummy (abdominal) pain 

Tell your treatment team if you have this. They can check the cause and give you medicine to help. 

Tiredness and weakness (fatigue)

Tiredness and weakness (fatigue) can happen during and after treatment. Doing gentle exercises each day can keep your energy up. Don't push yourself, rest when you start to feel tired and ask others for help.

Fluid build up 

You may have swelling of your hands and legs due to a build up of fluid (oedema). 

Damage to your nerves

Bortezomib can cause nerve damage. For example, you might feel pain or a burning sensation when you touch something. Or you might have pain in part of the body that hasn’t been injured. 

You might also have numbness or tingling in your fingers or toes. This is often temporary and can improve after you finish treatment. You might also have weakness in your arms and legs, but this is less common.

Tell your healthcare team if you're finding it difficult to walk or complete fiddly tasks such as doing up buttons.

Constipation 

Constipation is easier to sort out if you treat it early. Drink plenty and eat as much fresh fruit and vegetables as you can. Try to take gentle exercise, such as walking. Tell your healthcare team if you think you are constipated. They can give you a laxative if needed.

Pain in the muscles or joints 

You might feel some pain in your muscles and joints. Less commonly, you might notice you have less strength in your muscles, or you have muscle cramps. You might also have pain in your arms and legs.

Speak to your doctor or nurse if you have any of these symptoms. They can tell you about what painkillers you can take to help with this.

High temperature

If you get a high temperature, let your healthcare team know straight away. Ask them if you can take paracetamol to help lower your temperature.

Occasional side effects

These side effects happen in between 1 and 10 out of every 100 people (between 1 and 10%). You might have one or more of them. They include:

• sepsis - a serious reaction to an infection - signs can include feeling very unwell, not passing urine, being sick, a very high or very low temperature or shivering - contact your advice line straight away if you have any of these symptoms

• low thyroid hormone levels – symptoms include feeling tired, weight gain and feeling cold

• high blood sugar levels

• low level of fluid in the body (dehydration)

• low levels of a protein in the blood called albumin

• high levels of uric acid in the blood

• fainting

• shaking (tremor)

• taste changes

• changes in heart rate – you may feel like your heart is fluttering or pounding (palpitations)

• sudden drop in blood pressure when you stand up – tell your nurse if you feel dizzy or light headed

• dry mouth or lips

• sore mouth

• inflammation of the lining of the stomach, or more rarely the bowel

• liver changes - you have regular blood tests to check for any changes in the way your liver is working

• skin changes such as a rash or itching, dry skin and red inflamed skin or an infection, including fungal infections - some skin problems can be severe

• swollen joints

• your kidneys not working properly (renal failure)

• urine leakage (incontinence)

• urine infection

• wind (also known as flatulence and farting)

• changes in levels of minerals, salts, blood sugars, enzymes, and a chemical called uric acid in your body. You will have regular blood tests to check for this

• dizziness

• shingles - this might be all around your body and can also affect your eyes

• headaches that can be severe

• eye problems such as swelling and infection and changes in your sight. Rarer problems include blurred or double vision, pain, dry eyes, watery eyes, or discharge. Let your healthcare team know if this happens

• feeling sick and dizzy with ringing in your ears and a sense of things moving around you (vertigo)

• mood changes, such as feeling very low or confused. Less commonly you may have memory problems, see things that aren’t there, feel anxious or agitated

• sore throat

• shivering or chills

• weight loss

• cold sores

• ear infection

Rare side effects

This side effect happens in fewer than 1 in 100 people (1%):

• heart attack – call an ambulance if you have chest pain or shortness of breath. The pain may move from your chest to your jaw, neck, arms or back
• coughing up blood or vomiting blood – call an ambulance
• rare blood disorders, that may cause infections, bleeding, and problems with clotting 
• tooth infection
• too much cortisol in your body (Cushing’s syndrome) – you may gain weight and notice your skin bruises easily
• high levels of thyroid hormones
• stroke
• memory loss
• swollen lymph nodes
• seeing or hearing things that are not real (hallucinations) and believing things are true when they are not (delusional)
• changes in your blood glucose levels 
• symptoms affecting the nervous system (this includes the brain, the spinal cord, and the nerves in the body). Including severe headaches, problems with speech, fits (seizures), memory loss and uncontrollable movements of your arms, legs face and chest, difficulty walking, pain in the area if you previously had shingles, and memory loss
• blood clots that can be life threatening; signs are pain, swelling and redness where the clot is. Feeling breathless can be a sign of a blood clot in the lung. Contact your advice line or doctor straight away if you have any of these symptoms
• hiccups
• Stevens Johnson Syndrome (SJS)- a severe skin reaction that may start as tender red patches which leads to peeling or blistering of the skin. You might also feel feverish and your eyes may be more sensitive to light. This is serious and could be life threatening
• weight increase
• pain in the genitals
• night sweats
• problems getting an erection

Other side effects

There isn't enough information to work out how often these side effects might happen. You might have one or more of them. They include:

• hair thinning
• seizures - if you have epilepsy this could become worse when taking dexamethasone
• inflammation of the pancreas  
• loss or changed sense of smell 

If you have other side effects that aren’t listed on this page, you can look at the individual drug pages:

• bortezomib
• steroids

Coping with side effects

We have more information about side effects and tips on how to cope with them.

What else do you need to know?

Other medicines, foods and drink

Cancer drugs can interact with medicines, herbal products, and some food and drinks. We are unable to list all the possible interactions that may happen. An example is grapefruit or grapefruit juice which can increase the side effects of certain drugs.

Tell your healthcare team about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies. Also let them know about any other medical conditions or allergies you may have.

Pregnancy and contraception 

This treatment may harm a baby developing in the womb. It is important not to become pregnant or get someone pregnant while you're having treatment and for at least 6 months afterwards.

Talk to your doctor or nurse about effective contraception before starting treatment. Let them know straight away if you or your partner become pregnant while having treatment. 

Loss of fertility 

You may not be able to become pregnant or get someone pregnant after treatment with these drugs. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.

Men might be able to store sperm before starting treatment. And women might be able to store eggs or ovarian tissue. But these services are not available in every hospital, so you would need to ask your doctor about this.    

Breastfeeding

It is not known whether these drugs come through into the breast milk. Doctors usually advise that you don’t breastfeed during this treatment.

Treatment for other conditions 

If you are having tests or treatment for anything else, always mention your cancer treatment. For example, if you are visiting your dentist.

Immunisations

Don’t have immunisations with live vaccines while you’re having treatment and for up to 12 months afterwards. The length of time depends on the treatment you are having. Ask your doctor or pharmacist how long you should avoid live vaccinations.

In the UK, live vaccines include rubella, mumps, measles, BCG, yellow fever and one of the shingles vaccines called Zostavax.

You can have:

• other vaccines, but they might not give you as much protection as usual
• the flu vaccine (as an injection)
• the coronavirus (COVID-19) vaccine - talk to your doctor or pharmacist about the best time to have it in relation to your cancer treatment

Members of your household who are aged 5 years or over are also able to have the COVID-19 vaccine. This is to help lower your risk of getting COVID-19 while having cancer treatment and until your immune system recovers from treatment.

Contact with others who have had immunisations - You can be in contact with other people who have had live vaccines as injections. Avoid close contact with people who have recently had live vaccines taken by mouth (oral vaccines) such as the oral typhoid vaccine. Sometimes people who have had the live shingles vaccine can get a shingles type rash. If this happens they should keep the area covered.

If your immune system is severely weakened, you should avoid contact with children who have had the flu vaccine as a nasal spray as this is a live vaccine. This is for 2 weeks following their vaccination.

Babies have the live rotavirus vaccine. The virus is in the baby’s poo for about 2 weeks and could make you ill if your immunity is low. Get someone else to change their nappies during this time if you can. If this isn't possible, wash your hands well after changing their nappy.

More information about this treatment

For further information about this treatment go to the Medicines Health and Regulatory Authority (MHRA).

You can report any side effect you have to the MHRA as part of their Yellow Card Scheme.