At UCLH you will have access to the latest treatments and technology and have a personal, individual care plan based around your needs. You will receive expert care from an experienced team in a safe and award winning environment.
Your treatment will be delivered within a number of comprehensive specialised services led by medical and nursing cancer care experts. This is enhanced further by support from a dedicated team of Clinical Nurse Specialists (CNS) who complement the medical team and oversee your treatment journey. They offer on-going support from diagnosis and treatment to investigations and outcomes. This includes telephone advice and support when you are at home.
Our adult inpatient facility is housed over two floors of the University College Hospital, wards T13 North and T16 South (and from 1st December 2015, additional wards on T14 and T16 North). Nearly all of our 46 beds are in single rooms with en suite facilities which have the provision for a family member to stay overnight. On both wards, the average nurse to patient ratio is one nurse for every three or four patients. Day case, ambulatory care and outpatient care is provided from the state-of-the-art University College Hospital Macmillan Cancer Centre.
In 2014/15, there were 20,000 inpatient stays for patients with blood diseases - 25% more than the next largest treatment centre.
Your treatment plan
Most patients with chronic phase chronic myeloid leukaemia (CML) will receive the majority or all of their treatment as an outpatient, in the University College Hospital Macmillan Cancer Centre.
Patients who are unwell at diagnosis may begin their treatment as an inpatient, particularly if they have a very high white blood cell count or feel unwell. Once chronic phase CML with BCR-ABL1 presence is diagnosed, treatment is with a daily tablet medication to inhibit the tyrosine kinase enzyme and block its effects. These medications, called tyrosine kinase inhibitors, are normally highly effective and most patients on these will normalise their blood counts within a few weeks of treatment.
There are different types of tyrosine kinase medications in use. Patients may change to a different tyrosine kinase inhibitor medication if they experience certain side effects or their CML doesn’t respond adequately. Your doctor and clinical nurse specialist will discuss the side effects of the various medications with you and together you will decide which medication to use or change to.
The aim of treatment is to achieve the following:
- by three months, correct the blood count and reduce the levels of BCR-ABL1 in the blood to less than 10%.
- by 12 months, clear the bone marrow of cells containing the Philadelphia chromosome and get to a stage where the levels of BCR-ABL1 are less than 0.1% in the blood. This is called a major molecular response.
Your response to tyrosine kinase inhibitor medication will involve a blood test and clinic appointment as an outpatient every 3 months. Initially you may be seen more frequently to ensure the blood count is responding and that any side effects are identified and well managed. As well as checking your blood count, renal and liver function are unaffected the blood test will include a PCR test to quantify the percentage of BCR-ABL1 transcripts (tiny amounts of product made by the BCR-ABL1 fusion gene) in the blood. This is a reliable and sensitive test that can detect one leukaemia cell in up to a million normal blood cells. If the level of BCR-ABL1 transcripts is reduced 1,000 fold it’s referred to as a major molecular response (MMR). If the patient achieves MMR within the expected timeframes they will not require any further bone marrow tests unless there is an inexplicable rise in BCR-ABL1 percentages or a change to the blood count.
A bone marrow or stem cell transplant can offer a cure for chronic myeloid leukaemia, although as an intensive treatment with associated risks and side effects it is only suitable and necessary for a small minority of patients. Transplantations have better outcomes if the donor has the same tissue type as the person who is receiving the donation. The best candidate to provide a donation is usually a brother or sister with the same tissue type, although we can also use a matched unrelated donor if you don’t have a matched sibling. Your doctor and clinical nurse specialist will discuss transplantation with you if this becomes an option for treatment.
In the UK, occasionally a clinical trial will be underway that aims to find the best way to treat chronic myeloid leukaemia. Clinical trials for CML are studies that use new and experimental techniques to see how well they work in treating chronic myeloid leukaemia. There is no guarantee the techniques being studied in the clinical trial will be more effective than current treatments.
Your doctor, clinical nurse specialist and research nurse will be able to let you know whether there are any clinical trials available in your area, as well as explaining any potential benefits and risks involved. There may not be a clinical trial open, or you may choose not to take part in a trial, in which case you will be offered the best treatment available at that time.
The CML service at UCLH is headed up by a consultant Haematologist, Dr Andres Virchis. In addition to Dr Virchis there is a cancer clinical nurse specialist, Claire Nicholas. When clinical trials are open there is also a research nurse available.
Dr Virchis and Claire run a joint clinic in the University College Hospital Macmillan Cancer Centre on a Monday morning, where patients are seen for a blood test and consultation every three months or so. They will also review any newly diagnosed patients on the ward or elsewhere in the hospital.
Claire will be the keyworker for all patients with CML, this means patients should contact Claire if they have any questions or concerns in relation to their CML or its treatment.
Patients will be provided with a phone number for our haematology patient telephone line to relay a message for Claire; change appointments or request repeat prescriptions; as well as access to an emergency advice line for urgent queries at weekends, nights and bank holidays.
Patients who may be on the haematology ward at the beginning of treatment will initially be cared for by a bigger team consisting of a consultant haematologist, clinical nurse specialist, specialist registrars, senior house officers, haematology nurses and other health care workers.
Your clinical nurse specialist will provide you with a written information prescription, this will consist of a folder containing information about chronic myeloid leukaemia and your individual treatment. It will include information about the specific medication you are taking and its side effects. This information will be explained to you and you will have time to ask questions, or request more information.
You will also be given a leaflet about the clinical nurse specialist and her contact details. In the information folder you will also receive a welcome pack. This will contain written information about the various departments and support services available at UCLH, including information about claiming free prescriptions, access to transport, counselling, welfare and benefits advice. It will also include information about our Macmillan Support and Information Centre, including a timetable of events and how to access services there. Either the clinical nurse specialist or Macmillan cancer support worker will go through this with you.
At some point shortly after diagnosis you will be offered a holistic needs assessment by the clinical nurse specialist, either as part of your usual clinic appointment or in addition to this. You will receive information about this in your welcome pack.
The Macmillan Support and Information Service is based at UCLH and provides comprehensive and appropriate information and emotional support to anyone affected by cancer or a haematological condition, including the patient's family and friends.
Opening Times: 9am to 5pm, Monday to Friday
Tel: 020 3447 8663 (78663 internally)
Address: Ground floor of the University College Hospital Macmillan Cancer Centre, Huntley Street, London WC1E 6AG.
Macmillan Cancer Support is a charity providing written information, online and telephone support and information to patients and carers affected by cancer.
Telephone: 0808 808 00 00 (Monday to Friday 9am - 8pm)
Address: Macmillan Cancer Support, 89 Albert Embankment, London, SE1 7UQ