Polycythaemia vera (PV)
Polycythaemia vera (PV) is a type of rare blood cancer called a myeloproliferative neoplasm (MPN). These are conditions that cause an increase in the number of blood cells.
Polycythaemia vera is part of a group of conditions called myeloproliferative neoplasms. They also include:
myelofibrosis
essential thrombocythaemia
Researchers around the world are looking at better ways to treat polycythaemia vera and manage treatment side effects.
Go to Cancer Research UK’s clinical trials database if you are looking for a trial for polycythaemia vera in the UK. As this is rare cancer there may not be an open trial. Do talk to your doctor or specialist nurse, they may know of trials available in the UK for polycythaemia vera.
You can find a clinical trial on our clinical trials database. Click on the ‘recruiting’, ‘closed’ and ‘results’ tabs to make sure you see all the trials.
Some of the trials may have stopped recruiting people. It takes time before the results are available. This is because the trial team follow the patients for a period of time and collect and analyse the results. We include this ongoing research to give examples of the type of research being carried out.
Find a clinical trial for polycythaemia vera (PV)
All cancer treatments must be fully researched before they can be used for everyone. This is so we can be sure that:
they work
they work better than the treatments already available
they are safe
To make sure the research is accurate, each trial has certain entry conditions for who can take part. These are different for each trial.
Hospitals do not take part in every clinical trial. Some trials are only done in a small number of hospitals, or in one area of the country. You may need to travel quite far if you take part in these trials.
Researchers are looking at ways to improve the diagnosis and treatment of all myeloproliferative neoplasms (MPNs).
The JAK2 gene makes a protein that controls how many blood cells the make.
Some research suggests that it may be better to group MPNs depending on whether they are:
JAK2 positive or
JAK2 negative
This might improve targeted treatments in the future.
Researchers are looking in more detail at how myeloproliferative neoplasms develop. And to use this information to develop new treatments in the future. They think MPNs might develop because proteins called tyrosine kinases act as growth factors and tell cells to keep dividing. Trial teams are looking at white blood cells in samples from people taking part in a study. They are looking for tyrosine kinases proteins and for any features or damage that may make them keep on dividing.
UK trial teams are also looking more closely at the relationship between PV and blood clots.
Trial teams are looking into new types of treatment to stop the JAK2 gene signalling to stem cells to make more blood cells. These are called JAK2 inhibitors.
Ruxolitinib is a JAK2 inhibitor. It works by slowing or stopping the growth of cancer cells. Some people with polycythaemia vera have ruxolitinib if another drug called hydroxycarbamide is not suitable for them.
One trial is comparing ruxolitinib with hydroxycarbamide for people with high risk PV. In this trial, people have ruxolitinib as their first treatment. Researchers want to find out:
how well ruxolitinib works as the first treatment
more about the side effects
how it affects quality of life
Doctors are also looking at giving ruxolitinib with another treatment called azacytidine. They want to find out whether they work better together or not.
Find out more about ruxolitinib
Another study is looking at how well givinostat works in people with myeloproliferative neoplasms, including polycythaemia vera. Givinostat is a drug that blocks particular proteins (enzymes) in the body. Blocking these enzymes may stop abnormal cells from growing and dividing.
In another study, researchers are looking at a new type of targeted drug called a cancer growth inhibitor. They want to find how well it works in treating cancers that affect how well the bone marrow works. This includes polycythaemia vera. To do this the trial team needs to do a large clinical trial. But before doing this they need to find out:
what is the best dose
more about the side effects
how acceptable it is to take by itself and with ruxolitinib
Many people with PV and other myeloproliferative neoplasms have an enlarged spleen. This can cause bloating and pain in the tummy (abdomen). A study is comparing a medicine called fedratinib with current available treatment. The study team wants to know if fedratinib works better at reducing the size of the spleen and improves the symptoms.
Polycythaemia vera is often diagnosed later in life. Generally speaking, the outlook is good, if the condition is carefully monitored and treated as needed.
Some people with PV go on to develop a more aggressive disease. This might include progressing to myelofibrosis. This is where the bone marrow becomes scarred and less able to produce cells. Less commonly, people with PV can go on to develop acute myeloid leukaemia (AML).
Everyone is different. Your specialist will be able to give you a clearer idea of how things look in your situation.
Coping with a rare condition can be difficult both practically and emotionally. Being well informed about your condition and possible treatments can make it easier to make decisions and cope with what happens.
It can also help to talk to people with the same thing. But it can be hard to find someone with a rare condition. You can look at Cancer Research UK’s discussion forum - Cancer Chat. It is a place to share experiences, stories and information with other people who know what you are going through.
There are organisations that also offer help and support.
MPN Voice provides information, community and advocacy for people with myeloproliferative neoplasms and their families or carers. They also have information for healthcare professionals.
Email: info@mpnvoice.org.uk
Telephone: 07934 689 354 (Monday to Friday between 8am and 5pm)
Leukaemia Care is a national blood cancer support charity, committed to ensuring that anyone affected by blood cancer receives the right information, advice and support.
It provides a range of support services to patients and their carers, including information, support groups, patient and carer conferences, and buddy support. The buddy support service is available if you want to chat to someone who has had a similar experience.
Freephone helpline: 08088 010 444, open Monday to Friday 9am to 4:30pm
Chat via WhatsApp on 07500068065
Blood Cancer UK funds research, provides information and support to those affected by blood cancer. They publish information booklets and you can also connect and share experiences with other people dealing with blood cancer.
Support line: 0808 2080 888
Support line opening hours are:
10 am to 4pm on Monday, Wednesday, Thursday and Friday
10 am to 7pm on Tuesday
10 am to 1 pm on Saturdays and bank holidays
Email address: support@bloodcancer.org.uk
Last reviewed: 02 Jan 2024
Next review due: 02 Jan 2027
Polycythaemia vera (PV) is a type of rare blood cancer that causes your body to make too many red blood cells.
Myeloproliferative neoplasms are a group of rare disorders of the bone marrow that cause an increase in the number of blood cells.
Myelofibrosis is a rare blood cancer. It causes scarring of the bone marrow which can develop into acute leukaemia in some people.
AML starts from young white blood cells called granulocytes or monocytes in the bone marrow. Find out about symptoms, how it is diagnosed and treated, and how to cope.
Essential thrombocythaemia is a rare blood cancer that causes a high number of blood cells called platelets to form. These are blood cells involved in blood clotting.
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