PVD

You will be given PVD at a day unit as an outpatient or sometimes during a stay in hospital. 

During treatment, you usually see a

• cancer doctor
• cancer nurse or specialist nurse
• specialist pharmacist.

This is who we mean when we mention doctor, nurse or pharmacist in this information.

Before or on the day of each treatment, a nurse or person trained to take blood (phlebotomist) will take a blood sample from you. This is to check that it is safe for you to have treatment. 

You will speak to a doctor, nurse or pharmacist before you have treatment. They will ask how you have been feeling. If your blood results are okay, the pharmacy team will prepare your targeted therapy. 

You usually have bortezomib in hospital, as an injection under the skin (subcutaneously). You have panobinostat as capsules that you can take at home. You usually take dexamethasone as tablets at home. 

You should only take panobinostat on the days you have been told to. You take the capsules once on those days. Try to take them at the same time each day. You can take panobinostat with or without food. There are some things to remember when taking it:

• Swallow the capsules whole with a glass of water. 
• Do not chew, crush or open the capsules before you take them. This may increase side effects. 
• Avoid eating grapefruit, star fruit or pomegranate, and avoid drinking grapefruit or pomegranate juice during your treatment. These may increase side effects.

Always take panobinostat exactly as your nurse or pharmacist explains. This is important to make sure it works as well as possible for you. Your doctor will talk to you about how long to take panobinostat for.

If you forget to take panobinostat, you can still take it up to 12 hours after the time you usually take it. After this, do not take the missed dose – take your usual dose at the usual time the next day. You should never take a double dose.

Other things to remember about your capsules:

• Keep them in the original package and at room temperature, away from moisture, heat and direct sunlight.
• Keep them safe, somewhere children cannot see or reach them.
• If you are sick just after taking the capsules, contact the hospital. Do not take another dose.
• If your treatment is stopped, return any unused capsules to the pharmacist. Do not flush them down the toilet or throw them away.

Try to take the dexamethasone tablets in the morning after breakfast.

You usually have a course of several cycles of treatment over a few months. Your nurse or doctor will talk to you about how the treatment will be given. They may give you a copy of the treatment plan to take home with you.

A cycle of PVD usually lasts 21 days (3 weeks). In weeks 1 and 2, you have:

• bortezomib 2 times a week 
• panobinostat 3 times a week
• dexamethasone 4 times a week.

Week 3 of the cycle is a rest period. During this time, you do not have any of the treatment drugs. 

After 8 cycles, how often you have the drugs changes. You will have:

• bortezomib once a week
• panobinostat 3 times a week 
• dexamethasone 2 times a week.

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If your white blood cell count is low, you may be more likely to get an infection. A low white blood cell count is called neutropenia.

An infection can be very serious when the number of white blood cells is low. Your doctor may give you antibiotics and other drugs to take during this treatment. These may help reduce your risk of getting an infection. 

But it is still important to get any infection treated as soon as possible. If you have any of the following symptoms, contact the hospital straight away on the 24-hour number:

• a temperature above 37.5°C 
• a temperature below 36°C
• you feel unwell, even with a normal temperature
• you have symptoms of an infection.

Symptoms of an infection include:

• feeling shivery and shaking
• a sore throat
• a cough 
• breathlessness
• diarrhoea
• needing to pass urine (pee) often, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.

Your white blood cell count will usually return to normal before your next treatment. You will have a blood test before having more treatment. If your white blood cell count is low, your doctor may delay your treatment for a short time, until your cell count increases.

You may be given a drug called G-CSF. This encourages the body to make more white blood cells. You have it as a small injection under the skin.

This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot.

If the number of platelets is low, you may bruise or bleed easily. You may have:

• nosebleeds
• bleeding gums
• heavy periods
• blood in your urine (pee) or stools (poo)
• tiny red, brown or purple spots that may look like a rash – these spots can be harder to see if you have black or brown skin. 

If you have any unexplained bruising or bleeding, contact the hospital straight away on the 24-hour number. You may need a drip to give you extra platelets. This is called a platelet transfusion.

This treatment can reduce the number of red blood cells in your blood. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may feel:

• very low in energy
• breathless 
• dizzy and light-headed. 

If you have these symptoms, contact the hospital straight away on the 24-hour number. You may need treatment for anaemia. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

This treatment may cause severe diarrhoea. Diarrhoea means passing more stools (poo) than is normal for you, or having watery or loose stools. If you have a stoma, it will be more active than usual. 

Your doctor, nurse or pharmacist may give you anti-diarrhoea drugs to take at home. 

If you have diarrhoea or a mild increase in stoma activity, follow their advice about: 

• taking anti-diarrhoea drugs 
• how much and what type of fluids to drink 
• any changes to your diet that might help. 

Contact the hospital straight away on the 24-hour number if:

• you have diarrhoea at night 
• you have uncomfortable stomach cramps
• you have diarrhoea 4 or more times in a day 
• you have a moderate increase in stoma activity 
• the anti-diarrhoea drugs do not work within 24 hours.

You may need to give a stool sample, or go to hospital to have fluids through a drip or antibiotics.

This treatment can cause constipation. Constipation means that you are not able to pass stools (poo) as often as you normally do. It can become difficult or painful. Here are some tips that may help:

• Drink at least 2 litres (3½ pints) of fluids each day.
• Eat high-fibre foods, such as fruit, vegetables and wholemeal bread.
• Do regular gentle exercise, like going for short walks.

If you have constipation, contact the hospital on the 24-hour number for advice. They can give you drugs called laxatives to help. 

If you have not been able to pass stools for over 2 days and are being sick, contact the 24-hour number straight away. 

This treatment may affect the nerves in your fingers and toes. This can cause numbness, tingling or pain in your hands or feet. This is called peripheral neuropathy. You might find it hard to do fiddly tasks such as fastening buttons or tying shoelaces.

If you have these symptoms, always tell your doctor, nurse or pharmacist. They sometimes need to change the drug or the dose of the drug. The symptoms usually improve slowly after treatment ends. But for some people they continue and are a long-term side effect of treatment.

Bortezomib may cause low or high blood pressure. Tell your doctor or nurse if you have ever had any problems with your blood pressure.

If you are taking medicine to lower your blood pressure, your doctor or nurse may need to adjust the dose. When you get up from a lying or sitting position, you may feel:

• dizzy
• light-headed
• faint.

It can help to move more slowly when you do this. Drinking plenty of fluids can also help.

Your nurse will check your blood pressure regularly during treatment. Let them know if you feel dizzy or have any headaches.

Your doctor, nurse or pharmacist will prescribe anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as they tell you to, even if you do not feel sick. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluid often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or if you are sick (vomit) 1 to 2 times in 24 hours, contact the hospital on the 24-hour number as soon as possible. They will give you advice. They may change your anti-sickness treatment. Let them know if you still feel sick.

This treatment can affect your appetite. Don’t worry if you do not eat much for 1 or 2 days. But if your appetite does not come back after a few days, or if you are losing weight, tell your doctor, nurse or pharmacist. They can give you advice. They may give you food or drink supplements. Or they may suggest changes to your diet or eating habits to help.

Feeling tired is a common side effect of this treatment. It is often worse towards the end of treatment and for some weeks after it ends. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can help you feel less tired. 

If you feel sleepy, do not drive or use machinery.

This treatment may cause headaches. If you have headaches, tell your doctor, nurse or pharmacist. They can give you advice about painkillers that may help. Tell them if the headache does not get better, or gets worse.

You may get pain or discomfort in your abdomen (tummy area) or have indigestion. Your doctor can prescribe drugs to help improve these symptoms. Tell them if the pain does not improve or gets worse. 

Tell your doctor straight away if you:

• have sudden or severe pain in your tummy 
• have signs of bleeding from the rectum (back passage)
• have black stools (poo)
• vomit up blood (or have vomit that looks like coffee grounds).

You may get pain in your muscles or joints for a few days after treatment. If this happens, tell your doctor, nurse or pharmacist. They can give you painkillers and advice. They can also tell you if any of the painkillers you usually take are suitable. 

Tell them if the pain does not get better. Having warm baths and resting regularly may help. 

PVD may affect your skin. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day. PVD can cause a rash, which may be itchy. 

If you are out in the sun, use a suncream with a sun protection factor (SPF) of at least 30 to protect your skin.

Always tell your doctor or nurse about any skin changes. They can give you advice and may give you creams or medicines to help. Any changes to your skin are usually temporary and improve after treatment finishes.

Rarely, a more serious skin condition may develop. You may have a skin rash which then blisters, and your skin may peel. You may also feel unwell with flu-like symptoms such as a high temperature and joint pain. If you have any of these symptoms, contact your doctor or hospital straight away.

Sometimes bortezomib can make your eyes feel sore and itchy and look red (conjunctivitis). Your doctor will prescribe eye drops to help prevent this. It is important to use these as your doctor tells you.

Bortezomib may also make your eyes more sensitive to light and cause blurry vision. If you have pain or notice any change in your vision, always tell your doctor or nurse. It is important not to drive or operate machinery if you notice these effects.

This treatment can cause inflammation of the lungs. This is called pneumonitis. Contact the hospital straight away on the 24-hour number if you notice any of these changes during treatment or after it ends:

• breathlessness
• a cough that does not go away
• wheezing
• a fever, with a temperature over 37.5°C.

You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs. You may need steroids or other treatments.

This treatment can cause a build-up of fluid in the body. This will slowly get better after treatment ends. Contact the hospital on the 24-hour number if you:

• are gaining weight 
• have swelling in your face, legs or ankles.

They can give you advice and treatment to help.

You may feel low or depressed, or have mood swings, during this treatment. Talking to family and friends about how you feel might help. If mood changes last for more than a few weeks, tell your doctor, nurse or pharmacist. They can talk to you about different ways to manage low mood or depression.

This treatment can affect how your kidneys and liver work. This is usually mild and goes back to normal after treatment. You will have blood tests to check how well your kidneys and liver are working.

Some foods may taste different or have no taste. Try different foods to find out what tastes best to you. You may also get a bitter or metallic taste in your mouth. Your doctor, nurse or pharmacist can give you advice. It might help to try:

• sucking sugar-free sour or boiled sweets
• eating cold foods
• eating sharp-tasting fresh fruit.

Taste changes usually get better after treatment ends. We have more information about coping with changes to taste.

Cancer and some cancer treatments can increase the risk of a blood clot. Contact the hospital straight away on the 24-hour number if you have any of these symptoms during or after treatment:

• throbbing pain or swelling in a leg or arm
• reddening of the skin in the area – if you have black or brown skin, this can be harder to notice, but the skin might become darker
• suddenly feeling breathless or coughing.

Always call 999 if you have:

• chest pain
• difficulty breathing.

A blood clot is serious, but it can be treated with drugs called anticoagulants. These thin the blood. Your doctor, nurse or pharmacist can give you more information about preventing and treating blood clots.

Some medicines can affect how this treatment works or be harmful while you are having it. Always tell your cancer doctor, nurse or pharmacist about any drugs you are taking or planning to take, such as: 

• medicines you have been prescribed
• medicines you buy in a shop, pharmacy or online
• vitamins or supplements 
• herbal drugs and complementary or homeopathic therapies
• recreational drugs – for example, cannabis.

Doctors usually recommend that people with cancer have vaccinations for flu and for coronavirus (covid). These help reduce your risk of serious illness from these infections. Most people can have these vaccines, including people with weak immune systems.

If your immune system is weak, you should not have live vaccinations. Live vaccines can make you unwell because they contain a very weak version of the illness they will protect you against. Live vaccines include Zostavax^®, which is a shingles vaccine, and the yellow fever vaccine.

It is important to ask your doctor, nurse or pharmacist for advice about having vaccinations. They can explain what vaccines are right for you and when it is best to have them.

Your doctor, nurse or pharmacist will advise you not to get pregnant or make someone pregnant while having this treatment and for some time afterwards. The drugs may harm a developing baby. It is important to use contraception to prevent pregnancy. Follow their advice about:

• what types of contraception to use 
• how long after treatment you should continue to use contraception. 

Some cancer drugs can affect whether you can get pregnant or make someone pregnant. If you are worried about this, it is important to talk with your doctor before you start treatment.

You are advised not to breastfeed while having this treatment, or for some time after treatment ends. This is because the drugs could be passed to the baby through breast milk. 

Your doctor, nurse or pharmacist can give you more information.

If you need medical treatment for any reason other than cancer, always tell the healthcare professional that you are having cancer treatment. Give them the contact details for your cancer doctor or cancer team so they can ask for advice.

If you have appointments with a dentist, always tell them you are having cancer treatment. Talk to your cancer team before you have any dental treatment.