Relapse in Acute Lymphoblastic Leukaemia (ALL) - A Guide for Patients

Page created by Armando Mcbride
 
CONTINUE READING
Relapse in Acute Lymphoblastic Leukaemia (ALL) - A Guide for Patients
Relapse in Acute
Lymphoblastic
Leukaemia (ALL)

A Guide for
Patients
Relapse in Acute Lymphoblastic Leukaemia (ALL) - A Guide for Patients
Introduction

    A relapse is the return of leukaemia after treatment.
    Specifically, this booklet is about a relapse in acute
    lymphoblastic leukaemia (ALL).
    The booklet was written by our
    Patient Information Writer,
    Isabelle Leach, and peer reviewed
    by Dr. Richard Kaczmarski at
    The Hillington Hospital NHS
    Foundation Trust, Dr Mark
    Mansour at University College of
    London Cancer Institute and Dr
    David O’Connor at GOSH. We are
    also grateful to our reviewer, Kerri
    Baker, whose son had a relapse in
    ALL, for their contribution.

      If you would like any information on the sources
      used for this booklet, please email
      communications@leukaemiacare.org.uk
      for a list of references.

                                                            Version 1
                                                     Printed: 01/2019
2      www.leukaemiacare.org.uk                  Review date: 01/2021
In this booklet
Introduction                                             2
In this booklet                                          3
About Leukaemia Care                                     4
What is Acute Lymphoblastic Leukaemia?		                 6
What is a relapse?		                                     8
Symptoms and diagnosis of relapsed ALL                  12
How is relapsed ALL treated?                            14
Glossary                                                20
Useful contacts and further support                     23

                           Helpline freephone 08088 010 444   3
About Leukaemia Care

    Leukaemia Care is a national charity dedicated to ensuring
    that people affected by blood cancer have access to the
    right information, advice and support.

    Our services                           found on our website at www.
                                           leukaemiacare.org.uk/support-
    Helpline                               and-information/help-and-
    Our helpline is available 9.00am -     resources/information-booklets/
    10.00pm on weekdays and
                                           Support Groups
    9.30am - 12.30pm on Saturdays.
    If you need someone to talk to,        Our nationwide support groups
    call 08088 010 444                     are a chance to meet and talk
                                           to other people who are going
    Nurse service                          through a similar experience.
    We have two trained nurses on          For more information about a
    hand to answer your questions          support group local to your area,
    and offer advice and support,          go to www.leukaemiacare.org.
    whether it be through emailing         uk/support-and-information/
    nurse@leukaemiacare.org.uk,            support-for-you/find-a-support-
    over the phone on 08088 010 444        group/
    or via LiveChat.
                                           Buddy Support
    Patient Information Booklets           We offer one-to-one phone
    We have a number of patient            support with volunteers who have
    information booklets like              had blood cancer themselves
    this available to anyone who           or been affected by it in some
    has been affected by a blood           way. You can speak to someone
    cancer. A full list of titles – both   who knows what you are going
    disease specific and general           through. For more information
    information titles – can be            on how to get a buddy call

4      www.leukaemiacare.org.uk
08088 010 444 or email               service, LiveChat (9am-5pm
support@leukaemiacare.org.uk         weekdays).

Online Forum                         Campaigning and Advocacy
Our online forum,                    Leukaemia Care is involved in
www.healthunlocked.com/              campaigning for patient well-
leukaemia-care, is a place           being, NHS funding and drug
for people to ask questions          and treatment availability. If you
anonymously or to join in the        would like an update on any of
discussion with other people in a    the work we are currently doing or
similar situation.                   want to know how to get involved,
                                     email advocacy@leukaemiacare.
Patient and carer conferences        org.uk
Our nationwide conferences
provide an opportunity to            Patient magazine
ask questions and listen to          Our quarterly magazine
patient speakers and medical         includes inspirational patient
professionals who can provide        and carer stories as well as
valuable information and support.    informative articles by medical
                                     professionals. To subscribe go
Website                              to www.leukaemiacare.org.uk/
You can access up-to-date            communication-preferences/
information on our website,
www.leukaemiacare.org.uk, as
well as speak to one of our care
advisers on our online support

                                    Helpline freephone 08088 010 444      5
What is Acute Lymphoblastic
    Leukaemia?

    In acute lymphoblastic leukaemia    •• Five-year survival is
    (ALL), high numbers of abnormal,      approximately 90% in children,
    immature lymphocytes called           but only 30% to 40% in adults
    blasts start over-multiplying in      and elderly patients.
    the bone marrow. Lymphocytes
    are white blood cells involved in   In children with ALL:
    the immune response. There are      •• 80% to 85% of ALL consists
    two types of lymphocytes:             of early B-cells (also called
                                          precursor B-cell)
    1. B-cells (formed in the bone
      marrow) which produce             •• 15% are early T-cells
      antibodies that seek out and
      immobilise bacteria, viruses,     •• Approximately 2% are mature
                                          B-cells
      and toxins which invade the
      body.                             In adults with ALL:
    2. T-cells (formed in the thymus    •• 75% of cases are early B-cells
      gland, behind the sternum)
      which destroy the invading        •• 25% are malignant early T-cells
      organisms that have been
                                        Prognostic risk factors
      tagged by the B-cells as well
      as any cells that have become     Prognostic risk factors at initial
      cancerous.                        presentation, which can also be
                                        used to inidicate a poor outcome
    ALL has different rates of          or the chances of a relapse
    occurrence, survival and type of    occurring, include:
    lymphocytes involved in children
    and adults:                         •• Age at diagnosis: younger than
                                          6 months and older than 60
    •• Approximately 50% of patients      years
     with ALL are children under 15
     years of age (with a peak from     •• Male sex, possibly because of
     two to five years of age), and       the impact of a major relapse
     the remaining 15% of ALL cases       site being in the testicles
     are adults, mainly aged over 50
     years.
                                        •• High white blood cell count of

6      www.leukaemiacare.org.uk
greater than 300,000 white
  blood cells x 106 cells/L

•• T-cell lymphocyte ALL rather
  than B-cell lymphocyte ALL

•• Spread of ALL to the central
  nervous system (CNS)

Certain abnormal gene
rearrangements can also act as
prognostic risk factors. These
include:

•• t(9;22) BCR-ABL1 (Philadelphia
  chromosome)

•• MLL (KMT2A) translocations
•• t(17;19) TCF3-HLF
•• Near haploidy (24-30
  chromosomes). Haploidy is
  having only half of the normal
  number of 46 chromosomes

•• Low hypodiploidy (31–39
  chromosomes). Hypodiploidy
  is having less than the normal
  number of 46 chromosomes

                                    Helpline freephone 08088 010 444   7
What is a relapse?

    What is a relapse?                    in their bone marrow after
                                          treatment. This is called refractory
    Relapse in ALL is the return of       ALL.
    ALL in patients who have already
    undergone treatment and reached       Between 10% and 20% of patients,
    complete remission.                   who have achieved complete
                                          remission after initial treatment
    For complete remission to have        for ALL, will have a relapse. In
    occurred, the following conditions    children, the relapse rate is near
    will have been met:                   to 10%, while in adults relapse rate
    •• Blood cell counts returned to      is closer to 50%. Relapse of ALL
      normal                              generally occurs within two years
                                          of initial treatment, although
    •• Less than 5% of blasts             it may occur several months to
      (abnormal, immature, early          years after the initial remission.
      lymphocytes) are still present in
      the bone marrow                     Why does relapse
    •• There is no leukaemia present      happen?
      elsewhere in the body               Patients with ALL are known to
                                          have a number of characteristics
    When a relapse occurs, as with        that make them more likely to
    newly-diagnosed ALL, the blasts,      relapse. Patients with a likelihood
    which begin in the bone marrow,       or risk that they will have a
    start over-multiplying again,         relapse after treatment can be
    reaching high levels beyond           subdivided into well-defined
    levels considered appropriate for     risk groups according to these
    remission. This is also called a      characteristics.
    recurrence.
                                          By way of an example, there is a
    While a large number of patients      well-established risk stratification
    go into remission after induction     for ALL patients, which is used by
    therapy, there are subsets of         many doctors, shown below. This
    patients who do not at all, and       risk stratification is for children
    still have numerous blast cells       since the majority of patients with

8      www.leukaemiacare.org.uk
ALL are children.                       Chromosomes are thread-like
                                        structures which carry the genes
National Cancer                         and are located in the nuclei
Institute/Rome criteria                 of every cell. Genes are made
for children                            up of DNA (deoxyribonucleic
                                        acid) which stores the genetic
The National Cancer Institute/          information required to make
Rome criteria uses only patients’       human proteins.
ages and white blood cell counts
to determine their risk, and            The presence of abnormal gene
predict relapse and outcome.            rearrangements alone cannot
                                        predict a relapse rate in patients,
Standard risk - Both of the             but the relationship between
following criteria must be              genetic rearrangements and the
present:                                prognosis of the first occurrence
•• White blood cell count less than     of ALL can.
  50 x 109 cells/L
                                        How often does relapse
•• Age of patient between one and       occur?
  nine years
                                        Despite the fact that around 85%
High risk - Both of the following       of cases of ALL occur in children,
criteria must be present:               its presence in the remaining
•• White blood cell count greater       15% of adults who get ALL carries
                                        a much more serious prognosis
  than 50 x 109 cells/L
                                        than the children.
•• Age of patient younger than one      In children, although complete
  year or older than nine years
                                        remission occurs in 97 to 99% of
Since this risk classification          patients following initial multi-
was established, numerous               agent chemotherapy treatment,
other risks factors for relapse         between 15 and 20% will have a
have been found, none more              relapse.
so than the implications of
faulty chromosomes and genes.           In adults, despite complete

                                     Helpline freephone 08088 010 444         9
What is a relapse? (cont.)

     remission rates of between 78%
     and 93%, relapse will occur in 60-
     70% of patients.

     In addition to different rates of
     relapse for ALL patients according
     to their age at diagnosis, other
     prognostic factors at initial
     presentation can also indicate
     those patients where relapse
     occurs more often.

     Although not having any of the
     prognostic risk factors at initial
     presentation predicts less chance
     of relapse and a better outcome,
     there is always a risk of relapse
     irrespective of a patient’s age or
     prognostic factors.

10      www.leukaemiacare.org.uk
Helpline freephone 08088 010 444   11
Symptoms and diagnosis of
     relapsed ALL

 What are the                          platelets. In a relapse, ALL patients
                                       have lower-than-expected red
 symptoms of relapsed                  blood cells and platelets.
 ALL?
                                       A peripheral blood smear
 The symptoms of relapsed ALL
 are the same as those for newly       A sample of blood is viewed under
 diagnosed ALL, and include:           a microscope to count different
                                       circulating blood cells and to see
 •• Anaemia                            whether the cells look normal. In
                                       relapsed ALL patients, there are
 •• Bruising or petechiae (small red   too many blast cells.
     spots on the skin)

 •• Fever                              Bone marrow aspiration and
                                       biopsy
 •• Recurrent infections               The aspiration procedure removes
 •• Abdominal pain                     a liquid marrow sample and the
                                       biopsy removes a small amount
 •• Bone and joint pain                of bone filled with marrow.
 •• Swollen lymph nodes (showing       Medication is given to numb the
     up as lumps and bumps on your     area, or a general anaesthetic is
     neck, armpits and groin)          performed, to remove a sample
                                       from the hip bone. The following
 •• Dyspnoea (difficulty in            can be examined:
     breathing)
                                       •• Percentage of ALL cells are in
 How is relapsed ALL                     your bone marrow
 diagnosed?                            •• Any abnormalities of the ALL
 To make a diagnosis of relapsed         cells
 ALL, your doctor will carry out the
                                       Immunophenotyping
 following tests:
                                       This procedure identifies the
 Full blood count (FBC)                types of proteins on the surface of
 This will show the number of red      the cell to find out if the ALL cells
 blood cells, white blood cells and    are B-cells or T-cells.

12     www.leukaemiacare.org.uk
Lumbar puncture
This will determine if the ALL cells
are in your CNS.

Chromosomal analysis (also
called cytogenetic analysis)
The blood smear sample can
also be used to identify certain
changes in the number and size
of chromosomes within cells that
might have led to the relapse.

Other tests and scans
X-rays are used to monitor the
presence of ALL in any organs.

                                       Helpline freephone 08088 010 444   13
How is relapsed ALL treated?

     Patients with relapsed ALL remain     another complete remission.
     curable despite the failure of the    The treatment of relapsed ALL is
     initial course of treatment. The      normally more intensive than for
     treatment strategies for adult        newly diagnosed ALL. Treatment
     patients with ALL are similar to      outcome depends on the time of
     those for children with ALL.          the patient’s relapse and the type
                                           of ALL:
     The mainstay of the treatment
     for relapse ALL is chemotherapy,      •• For patients who relapse
     often given with steroids to            during, or just after finishing
     improve the effectiveness. If           chemotherapy, another course
     required, novel target therapy          of chemotherapy is unlikely to
     drugs which attack specific             achieve a cure. An ASCT in the
     components of the leukaemia             second remission period is the
     cells can be given. High-risk           only way to cure these patients
     patients are frequently offered an      with ALL, and should be the
     allogeneic stem cell transplant         main focus whenever possible.
     (ASCT) because the likelihood of a
     cure with chemotherapy alone is       •• For patients who relapse six
                                             months or longer after finishing
     very low.
                                             treatment, many patients can
     Chemotherapy                            achieve a second remission
                                             with therapy similar to that
     Chemotherapy for ALL                    used in initial treatment.
     normally consists of induction,
     consolidation, and long-term          •• For patients with B-cell ALL
     maintenance therapy, with CNS           with a late first bone marrow
     prophylaxis treatment to prevent        relapse and low levels of MRD,
     blast cells entering the brain or       chemotherapy can achieve a
     spinal cord, often given during the     positive outcome. In addition,
     first year of treatment.                the dual specific antibody,
                                             blinatumumab, is known to
     After a first relapse, patients         inactivate the T-cell immune
     should receive re-induction             response against B-cells and
     therapy to try and achieve

14      www.leukaemiacare.org.uk
directly activate T-cells against    prognosis for both children and
  the ALL blasts. Blinatumumab is      adults. It only occurs in 3% to
  recommended by the National          5% of patients with ALL, but less
  Institute for Health and Care        than 40% of them are cured with
  Excellence (NICE) as an option       intensive chemotherapy.
  for treating Philadelphia
                                       A young person who is
  chromosome-negative relapsed
                                       Philadelphia chromosome-
  or refractory B-cell precursor
                                       positive will be a candidate for
  ALL in adults. A recent study of
                                       an ASCT in the first remission.
  113 adults with B-cell precursor
                                       Patients who relapse but achieve
  ALL in complete haematological
                                       a second complete remission
  remission showed that
                                       may also benefit from an
  blinatumumab achieved a
                                       ASCT. However, the success
  complete MRD response in 78%
                                       of tyrosine kinase inhibitors
  of patients. However, an ASCT,
                                       in chronic myeloid leukaemia
  particularly for those patients
                                       (CML) has encouraged their use
  with unfavourable genetic
                                       in Philadelphia chromosome-
  factors and/or who are MRD-
                                       positive ALL patients. The
  positive, offers a significant
                                       tyrosine kinase inhibitor,
  benefit.
                                       imatinib, has achieved complete
•• For patients with T-cell            remission rates of 90%-100% for
  ALL, intensive multi-agent           patients who have Philadelphia
  chemotherapy can achieve good        chromosome-positive ALL with
  outcomes.                            relatively low toxicity. However,
                                       the combination of a tyrosine
Discovery of abnormal gene
                                       kinase inhibitor with standard
rearrangements in patients
                                       chemotherapy has led to a longer
with ALL will also influence
                                       survival in both adults and
the choice of treatment. The
                                       children.
Philadelphia chromosome (BCR-
ABL) is the most common genetic        Relapses can result from a
abnormality associated with            lack of response to standard
adult ALL and has a very poor          chemotherapy agents. In patients

                                      Helpline freephone 08088 010 444     15
How is relapsed ALL treated?
     (cont.)

     with refractory ALL, or patients     Clinical trials of CAR T-cell therapy
     who have had several relapses,       for relapsed or refractory B-cell
     multidrug treatment is often         cancers, such as B-cell leukaemia
     used with the aim of eliminating     and lymphoma, and several solid
     blast cells and targeting therapy-   tumors, have shown promising
     resistant cells that could cause     results. The anti-CD19 CAR T-cell
     further episodes of relapse.         therapy has achieved remission
                                          in up to 90% of patients with
     Introduction of new treatments
                                          B-cell ALL. CD19 is a B-cell receptor
     from trials for high-risk patients
                                          associated protein present on
     is an option for improving
                                          the surface of B-cells. However,
     outcome. Other possibilities
                                          relapse after CAR T-cell therapy is
     which can also be explored
                                          still a problem, often because the
     include the following:
                                          ALL cells lose expression of CD19.
     •• Ground-breaking combinations      The anti-CD19 agent
       of chemotherapy drugs
                                          tisagenlecleucel (Kymriah) is
     •• Antibodies directed against the   the first CAR T-cell therapy to be
       leukaemia                          approved in the United States for
                                          the treatment of patients up to 25
     •• Drugs that stimulate the body’s   years of age with B-cell ALL that
       immune system to attack the        is refractory or in second or later
       leukaemia                          relapse. In Europe, this anti-CD19
                                          CAR T-cell drug has been approved
     Chimeric Antigen Receptor
                                          by the European Medicines
     (CAR) T-cell therapy:
                                          Agency and NICE.
     This new cancer treatment
     works by removing the patient’s      Chemotherapy for T-cell ALL,
     own immune cells, genetically        paying special attention to the
     modifying them to recognise the      patient’s responses to previous
     tumour cells, and then re-infusing   treatments, has also resulted in
     them back into the patient so they   good survival rates. Patients with
     can target the cancer cells.         mature T-cell ALL have a better
                                          outcome than those with early

16      www.leukaemiacare.org.uk
T-cell ALL.                             Careful selection of SCT for ALL
                                        patients is important to achieve
A major challenge in the future
                                        the best outcomes. Human
treatment of ALL will be to devise
                                        leukocyte antigen (HLA)-matched
less toxic regimens for patients
                                        sibling donors are recognised as
with low-risk disease and high
                                        the best option, but this is only
cure potential, with the ultimate
                                        available for 30% of patients.
goal of improving their quality of
                                        Alternative sources of stem cells
life.
                                        for the remaining 70% of patients
                                        include matched unrelated adult
Allogeneic stem cell                    volunteer donor, a haploidentical
transplantation                         donor or a cord blood unit.
High-risk patients are frequently
                                        ASCTs are increasingly performed
offered an ASCT because
                                        due to the improved availability
the likelihood of a cure with
                                        of alternative donors and
chemotherapy alone is very
                                        refinement of indications
low. Currently an ASCT is an
                                        according to the NHS England
established treatment for high-
                                        Clinical Commissioning Policy
risk acute leukaemia.
                                        for Haematopoietic Stem Cell
Patients who have a bone                Transplantation. In addition, the
marrow relapse following                advent of the haploidentical stem
initial chemotherapy treatment          cell transplantation (HID-SCT),
may benefit from a stem cell            where the donor matches exactly
transplant (SCT); however, this         half of the HLA, offers another
is not uniformly recommended.           option for patients, although
General procedure for ASCT in           this option only accounts for
ALL patients involves total body        approximately 10% of ASCTs in the
irradiation, because outcomes are       UK.
improved in patients who undergo
                                        Adults with Philadelphia
transplant after achieving a low
                                        chromosome-negative ALL in
MRD status.
                                        their first complete remission

                                     Helpline freephone 08088 010 444       17
How is relapsed ALL treated?
     (cont.)

     will benefit from an HLA-matched       Adults with ALL who relapse have
     donor ASCT or a HID-SCT.               a poor prognosis. Young adults
     Moreover, children with T-cell ALL     less than 30 years old with a first
     benefit from ASCTs, including          complete remission of two years
     HID-SCT.                               or more may have the chance of
                                            long-term survival; however, older
     Philadelphia chromosome-
                                            patients (>30 years) who relapse
     positive ALL patients who
                                            early do not have realistic survival
     have received a HLA-matched
                                            options with current therapies.
     donor ASCT compared to those
     who had a HID-SCT showed               Despite the great improvements
     similar results in studies with        in the treatment of ALL in children,
     children and adults. In a study        with a five-year overall survival of
     of 82 Philadelphia chromosome-         approximately 90%, the prognosis
     positive ALL Chinese patients,         is still much lower for children
     HID-SCT was associated with a          who have relapsed, compared
     meaningful lower relapse rate          with newly diagnosed ALL.
     compared with HLA-matched
     donor ASCT (44.8 vs. 19.1%,
                                              If you would like some
     respectively), although overall
     survival times were the same.            support or advice
                                              about your relapse,
     If an HLA-identical sibling donor
                                              you can speak to the
     is not available, the probability of
     finding a fully matched unrelated        Patient Advocacy
     donor should be estimated to help        team by calling
     inform the decision on whether           08088 010 444 or
     to search for an unrelated donor         emailing support@
     or find an alternative source
                                              leukaemiacare.org.uk
     of haematopoietic stem cells
     (haploidentical donor or cord
     blood unit).

     Prognosis

18      www.leukaemiacare.org.uk
Helpline freephone 08088 010 444   19
Glossary

 Allogeneic Stem Cell Transplant      to stop the growth of cancer cells,
                                      either by killing the cells or by
 Transplant of stem cells from a
                                      stopping them from dividing.
 matching donor.
                                      Chromosomes
 Antibody
                                      Thread-like structures include
 Blood protein produced by the
                                      an individual’s genes, and are
 B-cell lymphocytes in response
                                      located in the nuclei of every
 to, and counteracting, a specific
                                      cell in the body. There are 46
 antigen such as a bacteria, virus,
                                      chromosomes (23 pairs) in
 or foreign substance.
                                      humans.
 Autologous Stem Cell
                                      CNS3 status
 Transplant
                                      CNS3 status occurs when the
 Transplant of stem cells derived
                                      cerebrospinal fluid sample
 from part of the same individual.
                                      contains equal to or greater
 Blasts                               than 5 white blood cells/µL with
                                      identifiable blasts, or there is the
 These white blood cells are not
                                      presence of a cerebral (brain)
 fully developed and are called
                                      mass or cranial palsy.
 blasts or leukaemia cells.
                                      Complete Remission
 Bone Marrow Relapse
                                      Complete remission occurs when
 Bone marrow relapse is defined
                                      the following conditions have
 as the presence of 25% of
                                      been met:
 lymphoblasts or more in a bone
 marrow aspirate following the        •• Blood cell counts returned to
 first complete remission.              normal
 Central Nervous System (CNS)         •• Less than 5% of blasts
 Part of the nervous system which       (abnormal, immature, early
 includes the brain and spinal          lymphocytes) are still present in
 cord.                                  the bone marrow

 Chemotherapy                         •• There is no leukaemia present
                                        elsewhere in the body
 Drugs that work in different ways

20    www.leukaemiacare.org.uk
Cranial Nerve Palsy                    Hypodiploidy
Weakness and impaired function         Hypodiploidy is having less
(palsy) of one or more of the          than the normal number of 46
twelve cranial nerves caused by        chromosomes.
tumours, trauma, impaired blood
flow, and infections. The condition    Lymph nodes
may also be congenital.                Components of the lymphatic
                                       system (part of the body’s
DNA (deoxyribonucleic acid)            immune system) that contain
Thread-like chain of amino acids       lymphocytes which produce
found in the nucleus of each cell      antibodies and macrophages to
in the body which carries genetic      digest dead cells. Lymph nodes
instructions used in the growth,       are swollen with cell fragments
development and functioning of         if infection or cancer occurs.
the individual.                        Lymph nodes are located mainly
                                       in the spleen, but also in the neck,
Genes                                  armpit and groin.
Genes are made up of DNA which
stores the genetic information         Minimal Residual Disease
required to make human proteins.       (MRD)
                                       Measure of the presence of
Haploidentical Stem Cell               leukaemia at a molecular level
Transplantation (HID-SCT)              rather than at a cell level. It
Type of allogeneic transplant          is measured using molecular
of stem cells where the donor          techniques such as flow
matches exactly half of the            cytometry and polymerase chain
human leukocyte antigens.              reaction analysis.

Leukaemia                              Petechiae
A group of cancers that usually        Red or purple, flat, pinhead spots
begin in the bone marrow               under the skin.
and result in high numbers of
abnormal white blood cells known       Philadelphia chromosome
as blasts.                             (BCR-ABL1)
                                       BCR-ABL1 is a cancer gene formed

                                    Helpline freephone 08088 010 444        21
Glossary (cont.)

 by the fusion of chromosomes 9            Relapse
 and 22 [t(9;22) (q34;q11)]. BCR-
                                           A relapse is when a patient
 ABL1 is found in all patients with
                                           initially responds to therapy
 chronic myeloid leukaemia and
                                           but, after six months or more,
 some patients with ALL.
                                           response stops. This is also
 Platelets                                 sometimes called a recurrence.
 Platelets are one of the types of         Thymus Gland
 blood cells which help to stop
                                           Main organ of the lymphatic
 bleeding.
                                           system, located behind the
 Precursor Cell                            sternum and between the lungs,
                                           where the T-cell lymphocytes
 Precursor cells are a type of
                                           develop and mature.
 partially differentiated stem
 cell which has the capacity to            Tyrosine Kinase Receptors
 differentiate into only one cell
                                           Receptors present in the
 type (B-cell or T-cell).
                                           membranes of all of the body’s
 Refractory (leukaemia)                    cells which contain the enzyme
                                           tyrosine kinase that carries
 Refractory leukaemia is a
                                           information to and from complex
 leukaemia that does not result
                                           cell networks. It functions as an
 in a remission or that gets
                                           ‘on’ or ‘off’ switch in many cellular
 worse within six months of the
                                           functions.
 last treatment. However, the
 leukaemia may be stable.

     Tell us what you think!
     If you would like to give us some feedback about
     this patient information booklet, please hover
     over the code to the right using your phone or
     tablet’s camera. Click the link as it appears and
     this will take you to a short web form to fill in.

     Suitable for Android, iPhone 7 and above.

22      www.leukaemiacare.org.uk
Useful contacts
and further support

There are a number of helpful          Bloodwise
sources to support you during          Bloodwise is the leading charity
your diagnosis, treatment and          into the research of blood cancers.
beyond, including:                     They offer support to patients,
•• Your haematologist and              their family and friends through
   healthcare team                     patient services.
•• Your family and friends             020 7504 2200
•• Your psychologist (ask your         www.bloodwise.org.uk
   haematologist or CNS for a
   referral)
                                       Cancer Research UK
                                       Cancer Research UK is a leading
•• Reliable online sources,            charity dedicated to cancer
   such as Leukaemia Care
                                       research.
•• Charitable organisations            0808 800 4040
There are a number of                  www.cancerresearchuk.org
organisations, including
ourselves, who provide expert          Macmillan
advice and information.                Macmillan provides free practical,
                                       medical and financial support for
Leukaemia Care
                                       people facing cancer.
We are a charity dedicated to
                                       0808 808 0000
supporting anyone affected by
                                       www.macmillan.org.uk
the diagnosis of any blood cancer.
We provide emotional support           Maggie’s Centres
through a range of support             Maggie’s offers free practical,
services including a helpline,         emotional and social support
patient and carer conferences,         to people with cancer and their
support group, informative             families and friends.
website, one-to-one buddy
service and high-quality patient       0300 123 1801
information. We also have a nurse      www.maggiescentres.org
on our help line for any medical       Citizens Advice Bureau (CAB)
queries relating to your diagnosis.
                                       Offers advice on benefits and
Helpline: 08088 010 444                financial assistance.
www.leukaemiacare.org.uk
support@leukaemiacare.org.uk           08444 111 444
                                       www.adviceguide.org.uk

                                      Helpline freephone 08088 010 444       23
Leukaemia Care is a national charity dedicated
to providing information, advice and support to
anyone affected by a blood cancer.

Around 34,000 new cases of blood cancer are
diagnosed in the UK each year. We are here to
support you, whether you’re a patient, carer or
family member.

Want to talk?
Helpline: 08088 010 444
(free from landlines and all major mobile networks)
Office Line: 01905 755977
www.leukaemiacare.org.uk
support@leukaemiacare.org.uk

Leukaemia Care,
One Birch Court,
Blackpole East,
Worcester,
WR3 8SG
Registered charity
259483 and SC039207
You can also read