Lymphoma matters - Your blood tests Insight into pathology Clinical trials update

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Lymphoma matters - Your blood tests Insight into pathology Clinical trials update
lymphoma
ISSUE 116 SPRING 2020   matters

Your blood tests
Insight into pathology
Clinical trials update
Lymphoma matters - Your blood tests Insight into pathology Clinical trials update
Owen talks
                                                                                     about his
                                                                                     experience
                                                                                     of angioimmunoblastic       Understanding
                                                                                     T-cell lymphoma             blood tests

07           Join our Bridges of
             London event                                                            12                          22

                                                              29
26         Kathleen's experience
           of Burkitt lymphoma
                                                              Clinical trials
                                                              update from
                                                              the NCRI
                                                                                                  32
                                                                                                  Join our Kenya trek

Contents                                                                                                   18
Lymphoma Action is the UK’s only                                   04 Latest
                                                                      news
                                                                                                                Medical opinion
                                                                                                                Research into
charity dedicated to lymphoma, the                                                 News and                     follicular lymphoma
fifth most common cancer in the UK,
                                                                                   developments

                                                                                                           20 Personal
and the most common among people

                                                                    08
aged 15 to 24. We’ve been providing
in-depth, expert information and                                                    Ask the                   story
wide-ranging support for over 30 years,                                             expert                      Dwayne shares his
helping thousands of people affected
by lymphoma. Our work drives                                                       Insight into                 experience of skin
improvements in the diagnosis,                                                     pathology                    lymphoma
treatment and aftercare of
lymphoma. We’re here for you.
Views expressed in this publication are those of the
contributors. Lymphoma Action does not necessarily
                                                                    16              Fundraising
                                                                                   Our calendar
                                                                                                           34 Support
                                                                                                              groups
agree with or endorse their comments.
                                                                                   of events                    Kevin explains
© Lymphoma Action 2020.
For further information about permitted use
                                                                                                                the benefits of
of our materials, please refer to our website.                                                                  attending a group
Editor: Anne Hook
Cover: Georgia, who features in our revised
Young person's guide to lymphoma (see page 6)

To make a comment, to sign up,
or to unsubscribe to the magazine,
email publications@lymphoma-                                  If you would like to make a donation
action.org.uk or telephone 01296 619400.                      towards our work please visit lymphoma-
                                                              action.org.uk/Donate or call 01296 619419.
Lymphoma Action
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Helpline (freephone) 0808 808 5555

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(SC045850). A company limited by guarantee registered in England and Wales (03518755).
Lymphoma matters - Your blood tests Insight into pathology Clinical trials update
To keep up-to-date with latest news visit lymphoma-action.org.uk/News
                                                                                             WELCOME

                                   Working in
                                   collaboration
                                   I hope you enjoy this latest edition of Lymphoma Matters.
                                   As well as our medical writers, Lymphoma Matters
                                   only comes together because of the stories and time
                                   given by our supporters, by healthcare professionals
                                   and by those willing to share their experiences
                                   (and their photos!) – thank you.
  Ropinder Gill,
                                   So much of what we do is in collaboration with others, whether
  Chief Executive
                                   it’s getting behind the One Cancer Voice manifesto with other
                                   charities, working as part of the Blood Cancer Alliance to make
  Have your say in                 the change we need for the future, or being an active member
  the Lymphoma                     of the global Lymphoma Coalition. There is real strength in
  Coalition 2020                   numbers when it comes to influencing decisions that will
  Global Patient                   impact those affected by lymphoma.
  Survey                           And being collaborative is one of our five new values. Building
  See page 5.                      on the brand refresh, we have been looking at what we do and
                                   how we work. We have developed new values and created a
                                   long-term strategy that reflects our ambitions for the future.
                                   We hope this resonates with you, and appreciate your ongoing
                                   support as we aim to reach even more people affected by
                                   lymphoma.
                                   You can read about our strategy, how our work impacts
                                   people and about those at the heart of it all online at
                                   lymphoma-action.org.uk/AboutUs

                                   Our new values
                                   Focused We are dedicated to the needs of those
  We hope you like this            affected by lymphoma.
  edition of Lymphoma Matters.
  You can sign up to regularly     Empowering We build confidence to make change happen.
  receive our magazine at
  lymphoma-action.org.uk/SignUp    Trusted We use our expertise to deliver quality services.
                                   Innovative We look to a better future for people
                                   affected by lymphoma.
                                   Collaborative We are inclusive and value
                                   our partnerships.

   LymphomaAction       LymphomaAction   www.lymphoma-action.org.uk        Lymphoma Matters Spring 2020   03
Lymphoma matters - Your blood tests Insight into pathology Clinical trials update
NEWS

     136,000 people in the UK
     are living with chronic cancer
     A recent study from             or slow its progression,                3 in 4 people with chronic
     Macmillan Cancer                relieve symptoms, and                   cancer are not getting
     Support and Public              improve quality of life.                the support they
     Health England’s National       Some types of lymphoma                  need – whether that
     Cancer Registration and         fall into this category,                is emotional, physical
     Analysis Service (NCRAS)        with treatment aiming to                or financial. Living with
     has found that there are        control the lymphoma and                chronic cancer can be
     136,000 people in the UK        send it into partial remission –        challenging, but with
     living with chronic cancer.     with several different                  the right support and
                                     treatments over the course              treatment, people with
     Chronic cancer is cancer        of living with the condition.           chronic cancer should
     that is treatable, but not                                              be able to live their lives
     curable, where treatment        Worryingly, the research                as fully as possible.
     aims to control the cancer      showed that more than

     One Cancer Voice: A manifesto                                               in cancer research
     for people living with cancer                                           •   Preventing people from
                                                                                 developing cancer.
     In November, in                 manifesto makes
     collaboration with 28           recommendations covering                With 1 in 2 people in the UK
     charities, we launched          six key areas:                          diagnosed with cancer at
                                                                             some point in their lifetime,
     a manifesto for people living
     with cancer calling on the      ••   Putting the right staff in place
                                          Diagnosing cancer earlier
                                                                             this could improve millions
                                                                             of lives and touch every
     Government to improve
     prevention, diagnosis,
     treatment and care.
                                      •   Ensuring people living with
                                          cancer have access to the
                                                                             family in the country.

                                          appropriate treatment and
     As the population living             psychological support
     with cancer grows, we
     must ensure that people
                                     •    Supporting people living
                                          with cancer beyond their
     are not just surviving               treatment
     longer, but living well
     too. The #OneCancerVoice
                                     •    Preserving the UK’s
                                          status as a world-leader

04   Lymphoma Matters Spring 2020
Lymphoma matters - Your blood tests Insight into pathology Clinical trials update
Latest news lymphoma-action.org.uk/News
                                                                                                 NEWS

                                               Best Volunteer
                                               Fundraisers of
Share your experiences
                                               the Year!
in the Lymphoma                                We are delighted for Marguerite Russell and David
Coalition 2020 Global                          Cooke on their well-deserved win at the Institute
                                               of Fundraising East Anglia Regional Awards in
Patient Survey –                               November 2019.
hurry, the survey closes
                                               Their efforts, as part of the Norfolk Lymphoma
on 11 March 2020!                              Action Fundraising Group, have raised over
Every 2 years, the Lymphoma                    £183,000 for us since the group was set up in 2003.
Coalition – a non-profit network
                                               David and Marguerite both have experiences
of patient organisations across
                                               with lymphoma that drive them to work tirelessly
the world of which we are a
                                               to help others affected by the condition. David
member – conducts a global
                                               received a diagnosis of non-Hodgkin lymphoma
survey of patients with lymphoma
                                               in 2001, and Marguerite’s sister passed away
and CLL and their family,
                                               from lymphoma in 2009.
friends and caregivers.
The 2020 survey is your                        ‘We cannot thank Marguerite, David and the rest
opportunity to share what your                 of the Norfolk Lymphoma Action Fundraising
lymphoma experience has been                   Group enough for their hard work and dedication’,
like. Whether the diagnosis was                said Carly Benton, Lymphoma Action Volunteering
recent or many years ago, we                   Development Manager. ‘We are so pleased that
want to hear from you!                         they have been given the recognition they
                                               thoroughly deserve.’
The survey data will be used
locally and globally to:                       If you'd like to learn more about volunteering with

••   improve support services
     advocate for change
                                               us, go to lymphoma-action.org.uk/Volunteering

 •   provide relevant facts and
     statistics.

Please complete the survey
online by 11 March 2020
at lymphomacoalition.org/
gps2020                                                                                Marguerite
                                                                                       with her
                                                                                       award

      LymphomaAction   LymphomaAction     www.lymphoma-action.org.uk
                                                                            Lymphoma Matters Spring 2020   05
Lymphoma matters - Your blood tests Insight into pathology Clinical trials update
NEWS

     New information
     now available
 Written by medical writers, approved by experts
 and reviewed by people affected by lymphoma,
 our health information is updated every 3 years.                      Georg
                                                                                       ia M,
                                                                                                      diagn
                                                                                                                      osed
     We have recently revised                                                                                                      at 24
     three of our books:

     ••   Hodgkin lymphoma
          Autologous stem cell
          transplant (using your      We have also revised our webpages on:
      •
          own stem cells)
          Young person’s guide to     ••    marginal zone lymphomas (MALT, nodal and splenic)
                                            common chemotherapy regimens for lymphoma
          lymphoma, which includes
          quotes from young people
          affected by lymphoma,
                                       ••   lymphoma during pregnancy
                                            what happens if lymphoma relapses.
          like Georgia who is
          featured on our                                                                               Autolo
                                                                                                       stem
                                                                                                               gous
                                                                                                            cell
                                                                                                      transpla
                                                                                                               nt

          magazine cover.
                                                                                               Autol
     Order your free copy online at                                                                         ogous
     lymphoma-action.org.uk/
                                      Did you know?                                           stem
                                                                                                          cell tr
                                                                                                                    anspla
     Shop or download from our        You can download                                       A tran
                                                                                                    splant
                                                                                                           using
                                                                                                                           nt
                                                                                                                 yo             ur ow
                                                                                                                                     n stem
     website at lymphoma-action.      PDFs of our health                                                                                      cells

                                                                 Hodgkin

     org.uk/Books                     information under          lymphoma

                                                                                        What
                                      the left-hand side                               Havin
                                                                                               is a st
                                                                                             g a stem
                                                                                                      em ce
                                                                                                             ll tran
                                                                                                        cell tr
                                                                                                                     splant
                                                                                                                            ?
                                                                                      After                     anspla
                                      menu of each page –
                                                                  Hodgkin
                                                                                            a stem                      nt
                                                                                                     cell tr
                                                                                                            anspla
                                                                                                                    nt

                                      or, if you are looking
                                      on a phone or               lymphoma
                                      tablet, at the
                                      bottom of the page.
                                                                                                    lymphoma
                                                                                 ing Hodgkin
                                                                      Understand
                                                                                     and staging
                                                                      Tests, scans
                                                                                     tment
                                                                      Having trea
                                                                                      treatment
                                                                       Coping with
                                                                                    r yoursel   f
                                                                       Looking afte

                                      You can find a list of all of our our downloadable PDFs
                                                at lymphoma-action.org.uk/Books

06    Lymphoma Matters Spring 2020
Lymphoma matters - Your blood tests Insight into pathology Clinical trials update
Book your place at lymphoma-action.org.uk/Bridges   LN                    O N              FUNDRAISING

 Join our fabulous                                                   D
  FAMILY EVENT                                        O
  Bridges of   LN O N
  London Walk – Sunday 7 June

    Suitable for all ages and abilities, our Bridges of London walk is back. This walk
  is all about you – its Your Walk, Your Way – and will take place on Sunday 7 June.

   Walking from Vauxhall Park to Tower                   Adults £10, family (2 adults + 2 children)
   Bridge by criss-crossing over 11 bridges              £25, young people aged 4 to 16 £5,
   is one of the best ways to see the                    children under 3 free.
   capital. You will have plenty of time to
   take in all the sights and you may want               All we ask is that you try to raise £100 in
   to stop and enjoy lunch by the Thames.                sponsorship and we will support you in
                                                         your fundraising. All adult walkers receive
   As this event is arranged completely                  a T-shirt and medal. Children also receive
   by us, all the money you raise goes                   a medal. Small T-shirts are available to
   towards supporting people affected by                 purchase in advance for £6.50.
   lymphoma. It will be rewarding, fun,
   absolutely achievable, and we would love              Book your place on this fun event at
   to welcome you to Team Lymphoma.                      lymphoma-action.org.uk/Bridges

   LymphomaAction     LymphomaAction    www.lymphoma-action.org.uk          Lymphoma Matters Spring 2020   07
Lymphoma matters - Your blood tests Insight into pathology Clinical trials update
PERSONAL
  ASK THE
 STORIES
  EXPERT

                                                                                ask the
                                                                            expert

                                           Insight into
                                           pathology
                                            Consultant Haematopathologist
                                            Bridget Wilkins answers your
                                            questions on pathology
     A pathologist is a
     doctor who looks at                 Chronic lymphocytic                Sometimes a lymphoma is
     laboratory samples under            leukaemia is a classic             diagnosed coincidentally
     a microscope and does               example of a lymphoma that         when surgery is being
     specialised tests on them           shows up in the blood. When        undertaken to treat
                                         the same disease stays put         another condition, such as
     to help make a diagnosis.           in lymph nodes (we don't           a suspected cancer in the
                                         yet know why it does this),        lung, breast or bowel. Those
     Does the diagnosis of               it’s called ‘small lymphocytic     patients will not usually
     lymphoma always rely on             lymphoma’ – and that would         need any additional biopsies.
     a biopsy?                           need a biopsy for diagnosis.
     It's very unusual for a patient’s   Hairy cell leukaemia and           When the diagnosis is known
     first diagnosis of lymphoma         splenic marginal zone              and disease becomes more
     not to require a biopsy, but        lymphoma are another two           extensive, or relapses after
     there are some lymphomas            examples of lymphomas that         treatment, a biopsy is often
     that ‘leak’ a lot of cells into     have a lot of cells in the blood   not needed for confirmation,
     the blood and those can be          stream and may not need a          as imaging studies (MRI, PET
     diagnosed from blood tests.         biopsy for diagnosis.              and CT scans, for example)
08    Lymphoma Matters Spring 2020
Lymphoma matters - Your blood tests Insight into pathology Clinical trials update
Find out more about tests, diagnosis and staging at lymphoma-action.org.uk/Tests                      ASK THE
                                                                                                      EXPERT

    It is very unusual for a patient's
    first diagnosis of lymphoma not
    to require a biopsy.

                                                                                            Preparing
                                                                                        tissue samples is
                                                                                       a complex process
                                                                                            that takes
can be sufficient. In the future,      quickly onto the right care                            time.
‘liquid biopsy’ techniques such        pathways.
as single cell and cell-free
tumour DNA testing may            From a pathologist’s point of    often the next quickest and
become commonplace in             view, thinking about making      easiest procedure to do. Most
these circumstances.              a diagnosis of lymphoma,         lymphomas can be diagnosed
                                  I want the patient to have       fully from these samples
How is it decided what            undergone a biopsy procedure as long as they are of good
type of biopsy is required? that’s the least invasive, but         quality.
It’s often a matter of what is    which provides plenty of
practical in a particular place   tissue for me to make a full     However, there is often no
or at a particular time. It also  diagnosis without having to      left-over tissue for research
depends to some extent            ask  for  a further sample.      from needle biopsy cores, and
on how likely a diagnosis                                          some lymphomas are very
                                  Fine-needle aspiration can       difficult to diagnose without
of lymphoma seems in any
                                  usually be done very quickly     being able to examine larger
particular patient. There
                                  and the patient doesn’t          amounts of tissue. So,
are many infectious and
                                  need a general anaesthetic.      sometimes a whole lymph
inflammatory causes of lymph
                                  Aspirates are good samples       node must be taken out;
node enlargement that initially
                                  for seeing whether there         this requires the patient to
mimic lymphoma but will
                                  is, or is not, lymphoma, but     have a general anaesthetic
resolve on their own over time.
                                  they often don’t allow us        and undergo a (usually small)
We want to sample those in
                                  to tell exactly what type of     surgical procedure.
the least invasive way possible
                                  lymphoma is present. For that,
– usually by a fine-needle
                                  a needle biopsy (to obtain a     In general, we need
aspirate, with local anaesthetic
                                  small solid core of tissue) is   more tissue to diagnose
– to obtain a relatively small
number of cells to assess, for
reassurance. This approach is
also very efficient for detecting    In general, pathologists need more tissue to
cancers other than lymphoma          diagnose lymphomas than many other types of cancer.
and getting those patients
    LymphomaAction    LymphomaAction       www.lymphoma-action.org.uk              Lymphoma Matters Spring 2020   09
Lymphoma matters - Your blood tests Insight into pathology Clinical trials update
ASK THE              Read more 'Ask the expert' questions on our news section, lymphoma-action.org.uk/News
     EXPERT

     lymphomas than many other           like Burkitt lymphoma, is            When samples are sent from a
     types of cancer because,            suspected, every effort will         smaller local hospital to one of
     in addition to looking at           be made to fast-track every          the large regional lymphoma
     ‘standard’ histological             step in the laboratory to            laboratories, results can take
     sections under a microscope,        get the result ready and             an extra 2 to 3 days while the
     we need to do additional            back to your oncologist or           material is in transit. We all
     tests such as immunostaining        haematologist within 48              work hard to keep this to a
     and molecular tests to reach        hours. Unfortunately, we can’t       minimum but it is a necessary
     a full diagnosis.                   do this for every sample.            price to pay for access to the
                                                                              more extensive resources
     Do you look at the                    The reason why things              and expertise at the regional
     sample alone or view                  normally take longer is            centres.
     scan images and                       because the tissue sample
     blood tests as well?                  first needs to ‘fix’ in its        As a pathologist, once the
     Whenever we can access                formalin preservative. It then     sections are stained and
     them, we look at all these            needs to be processed into         ready (thanks to my excellent
     different tests together,                  a wax block, then have        biomedical scientist colleagues
     to inform the                                   microscope sections      in the lab, who are the experts
     assessment we                 We   need   to       cut and stained,      at doing all of that), I then
     make of the tissue         make    sure  that       and have extra       typically need an hour or two
     sample. When               all the different         tests done such     to assess all the slides and
     we aren’t able              pieces   of  the         as immunostains     information to formulate my
                                      jigsaw             and  molecular       report. A complicated diagnosis
     to do this, we do
                                    puzzle fit.         tests. Formalin       may take half a day or even
     our best to discuss
     the results with the                            fixing takes up to 24    more. For speed, I like to write
     haematologists, radiologists               hours, depending on the       my own reports directly onto
     and other clinicians involved         size  of the tissue sample.        the hospital computer system
     in the patient’s care, to put         For tiny pieces it can be as       but, in some hospitals, reports
     the full picture together             little as 8 hours. Processing      are dictated and then typed
     while we are assessing the            into one or more wax blocks        up before being approved and
     tissue. When even that isn't          takes another 24 hours and         authorised. You can see how
     possible, we join the team of         getting the various stains         the time needed for all of
     doctors, nurses, scientists and       done typically takes another       this adds up.
     therapists who come together 24 to 48 hours. Adding
     at MDT meetings to make               molecular tests may add a          Are biopsies ever
     sure that all the different           further week because they          sent elsewhere (other
     pieces of the jigsaw puzzle fit       are not done in the same lab.      treatment centres or
     together as they should, so           They are expensive too, so         oversees, for example)?
     that the diagnosis is correct.        they're batched to keep the        Yes. In the NHS in England,
                                           costs manageable. However,         biopsy specimens known or
     Why does it take about                we rarely wait for molecular       suspected to have lymphoma
     2 weeks to get the biopsy tests before making our                        are all sent to be assessed by
     results?                              diagnosis – the results of         experts based in large regional
     You can rest assured that if          those tests refine rather than     pathology centres. Apart
     a very aggressive lymphoma,           determine our assessment.          from the specialist knowledge
10   Lymphoma Matters Spring 2020
ASK THE
                                                                                                  EXPERT

In the NHS in England, biopsy specimens                                   meeting by a member of
known or suspected to have lymphoma are                                   the pathology team. This
all sent to be assessed by experts based in                               may be the pathologist who
                                                                          has actually reported on the
large regional pathology centres.                                         sample, or a colleague with
                                                                          whom they have discussed
of the pathologists at these          happens to work. Sometimes          the findings in preparation
centres, the larger size of           there is particular expertise       for the MDT meeting. In
these laboratories means              in one country (for example,        general, for diagnosing
that they have access to a            Hodgkin lymphoma in                 lymphomas, we work in
wider range of immunostains           Germany) because there has          teams of three or more
and genetic tests than is             been a long history of clinical     pathologists, so that we
available at smaller hospitals.       trials being based there.           can report samples with a
Similar, although less formal,                                            minimum of delay, quality-
referral arrangements also            Another reason why biopsy           assure one another’s work
operate throughout the                samples are sometimes sent          and occasionally take a
NHS in Scotland, Wales and            elsewhere, including overseas,      holiday! Most pathologists
Northern Ireland.                     is for research as part of a        find the MDT meetings are
                                      clinical trial. This is something   some of the most rewarding
If a lymph node sample is             you should expect, as the           parts of their work; we love
difficult to interpret for some       patient, to be asked to give        being able to ‘see’ the patient
reason, and particularly if it        your consent for (or, if you        through the discussion
seems to show something               wish, to withhold consent)          that takes place among the
rare that the local or regional       as part of the discussions          different clinicians who are
pathologist may not have              around your consenting to           present and we value being
seen many times, it may be            take part in the trial.             part of the clinical team.
sent for assessment by an
individual with very specific         Do you discuss the                  With thanks to Bridget Wilkins,
expertise in diagnosing a             results at MDT meetings?            Consultant Haematopathologist,
                                      Yes. Every lymphoma                 St Thomas' Hospital, London
particular type of lymphoma.                                              and Royal Hampshire County
Some expertise of this sort           diagnosis is discussed at the       Hospital, Winchester for
is only available overseas,           multidisciplinary team (MDT)        answering these questions.
for example in the USA
or Hong Kong, because                  Every lymphoma diagnosis isFind
                                                                   discussed at ??????????
                                                                                the
                                                                       out more
that’s where the individual            MDT meeting by a member of the pathology team.
highly specialist pathologist
   LymphomaAction    LymphomaAction       www.lymphoma-action.org.uk            Lymphoma Matters Spring 2020   11
PERSONAL
EXPERIENCE

                          I REALLY DIDN’T
                            WANT THIS TO
                            BE LYMPHOMA
                          Owen talks about his diagnosis of angioimmunoblastic
                           T-cell lymphoma and his family history of lymphoma

     I have been married to         excluding some possible          increasingly worried, and I
     Yvonne for 27 years and        causes, the ENT consultant       found it difficult not knowing
                                    wanted to continue to            what the problem was.
     we have two sons; one
                                    monitor me, as my lymph
     is 21 and at university        nodes were still a bit           Even with all this medical
     and the other is 24 and        swollen.                         focus on my lymph nodes,
     has recently started                                            strangely, I did not think I
     working as a nurse. I am       After a couple of MRI            had lymphoma. Both my
                                    scans showed no change, a        elder brother and dad died
     an IT Project Manager.         needle biopsy was arranged.      of non-Hodgkin lymphoma;
     On the first day of a break    The needle biopsy wasn’t         my brother in 1999 and my
     with my family I developed,    conclusive, so I had two         dad in 2001. So I thought
     what felt like, a bad throat   lymph nodes removed from         I knew the symptoms
     infection. The lymph nodes     my neck under general            of lymphoma, and my
     in my neck became very         anaesthetic in early January     symptoms were different.
     enlarged, and I thought        2018. In the days after the      Having said that, I was
     I must have picked up a        lymph node removal my neck       also certain that of all
     strange infection on a         was getting bigger and bigger.   the things I did not want
     business trip. I was given     I thought I had developed an     it to be, number one
     intravenous antibiotics.       infection in the wound, but      was lymphoma.
                                    it was the remaining lymph
     Once home, I was referred      nodes in my neck continuing      After a difficult month of
     to an ENT consultant. After    to swell. I was getting          waiting and worrying, in
12   Lymphoma Matters Spring 2020
Read more about angioimmunoblastic T-cell lymphoma at lymphoma-action.org.uk/AITL               PERSONAL
                                                                                               EXPERIENCE

 February 2018 I was diagnosed with angioimmunoblastic T-cell
 lymphoma, a type of high-grade non-Hodgkin lymphoma, and the
 same lymphoma my dad had.

 More tests followed including a PET scan, bone marrow tests
 and more blood tests. I was told that I would be treated with
 six cycles of CHOP chemotherapy, and then if I was in remission,              We wanted to
 I would be given a stem cell transplant.
                                                                               be open about
 We wanted to be open about it, and wanted our sons to                         the diagnosis.
 know first. We went to see each of them in turn. They knew
 I had been unwell for a while, and had been off work, so knew
 it was something serious. But I was impressed by how caring
 and mature they were, and was reassured that they were as
 OK as they could be with the news. My mum would also have
 to go through the non-Hodgkin lymphoma experience of
 an immediate family member for a third time; maybe that’s
 unique. Yvonne, my sons and my mum were amazingly
 resilient, and this helped me.

 I now felt able to let others know, and found telling family
 and friends very helpful as everyone was very supportive.
 Small gifts and regular phone calls made me realise they                            My family were
 cared – perhaps more than I had known before. Although
                                                                                        amazingly
 I had already been off work for several weeks, I was now
 able to give them a clearer picture of what my diagnosis
                                                                                      resilient, and
 would mean work-wise.                                                                 this helped.

 I began treatment at the end of February 2018 with CHOP
 chemotherapy. At the beginning of the second cycle I lost most of
 my hair. I woke up one morning with loads of it on the pillow, and
                                                                                       Did you
 then had a shower and lost most of the rest, so decided to shave off
 what was left. It was a bit weird and I was self-conscious for a few
 days, but people were quite positive about my new look, so I began                    know?
 to feel OK about it.                                                                  Angioimmunoblastic
                                                                                       T-cell lymphoma is
 The six chemotherapy treatments were in 3-week cycles. By the                         often fast-growing.
 end of the second cycle I knew the pattern:                                           Most people are
                                                                                       diagnosed at an
                                                                                       advanced stage and
 Week 1 – low appetite and feeling sick, and sometimes being sick                      are treated with
 Week 2 – feeling better than week 1 but aching back and hips                          chemotherapy.
 Week 3 – feeling normal(ish).                                                         People who respond
                                                                                       well to chemotherapy
                                                                                       and who are fit
 By the end of the second cycle I could see a bit of improvement. My                   enough might go on
 lymph node swelling was reducing, and I was tolerating the chemo.                     to have a stem cell
                                                                                       transplant.

   LymphomaAction     LymphomaAction     www.lymphoma-action.org.uk         Lymphoma Matters
                                                                               Lymphoma      Winter
                                                                                        Matters     2018/19
                                                                                                Spring 2020   19
                                                                                                              13
PERSONAL
EXPERIENCE

     My brother and dad had lots       the chemotherapy had been         it, and knew it would be
     of trouble with infections        successful. Although I was        physically challenging. My
     during treatment, so I was        apprehensive about having         eldest son is a nurse, and
     worried about picking up          the stem cell transplant, I was   during his degree course
     infections. I was careful about   even more worried that the        he spent time in a stem
     hand hygiene and avoiding         chemotherapy hadn’t fully         cell transplant unit, so we
     anyone who was unwell.            done its job.                     had some idea of what was
                                                                         involved.
     I had another                             The days leading up
     PET scan and              I was in no       to the PET scan         I had LEAM chemotherapy,
     was told the               doubt the          were difficult. We    which is a high-dose
     chemotherapy            transplant was        decided to go         chemotherapy called
     was working.           the right course away as a family            ‘conditioning’ every day for 6
     It was positive            of action.         for a short break,    days, and then my stem cells
     news, and given                               and hoped it was      were given back to me. I felt
     my family history, I                          a chance to relax.    progressively worse as the
     felt very emotional.                          But it was            days of treatment went by. I
                                        a mistake, and all it did        developed mucositis (ulcers
     I had my last dose of                                               in my mouth, throat and
                                        was spread the anxiety
     chemotherapy the day the                                            digestive tract) which made
                                        between us.
     2018 World Cup started. I am                                        eating difficult, and I also
     a big football fan and being       I eventually had the PET scan,   had very bad diarrhoea.
     able to watch every game           and it was the best news; the    Over the next 3 weeks I
     was certainly a plus. I made       chemotherapy had worked. I       lost a stone and a half.
     the most of it and really          had my stem cells harvested
     enjoyed watching them all!         in late July 2018 in readiness   As expected, my blood counts
                                        for the stem cell transplant     dropped, and I found the
     My treatment plan had              the next month.                  days when I was neutropenic
     always been to have an                                              frightening. I was again worried
     autologous stem cell               By the time of the transplant    about picking up an infection.
     transplant using my own            I was feeling better and         I was in hospital for almost 3
     stem cells. A PET scan             stronger. I was in no doubt      weeks feeling progressively
     scheduled for about 6              that the transplant was the      worse, but suddenly my blood
     weeks after the last dose of       right course of action, but      counts began to recover, and I
     chemotherapy would tell if         I was very anxious about         began to feel a little better.
14    Lymphoma Matters Spring 2020
Find out more about working and lymphoma at lymphoma-action.org.uk/Work                                                            PERSONAL
                                                                                                                                  EXPERIENCE

Work were really helpful and we realised that the old normal
was not going to be the new normal. At least not for now.
I was allowed home fairly                                            January 2019, and initially            I’m not sure this is the forever
soon after that, even though                                         worked from home. It was               normal, it’s normal for now.

                                                                                                                                     Owen
my blood counts were still                                           good to be getting back to
low. To be honest, I didn’t                                          normal, and I was keen to do
feel ready to go home. I was                                         so as quickly as possible. I
                                                                                                            Owen’s family
still nervous about picking                                          thought it would bring closure         history of lymphoma
up infections and was still                                          to my lymphoma experience.             For most types of lymphoma,
struggling with diarrhoea. The                                       By the end of March, I was             there are no clear causes.
mucositis had all but gone,                                          back to working 5 days a               Lymphoma is not inherited – it
and I was eating again, but                                          week, commuting to London              is not passed from parent to
my sense of taste was weird. I                                       occasionally.                          child. However, your risk of
couldn’t taste anything sweet                                                                               developing lymphoma is slightly
and lots of savoury things                                           By early May I realised I was          higher if you have a close relative
tasted very different.                                               struggling. I felt very tired, still   (parent, brother or sister, or
                                                                     had some digestive problems,           child) who has had lymphoma.
My energy levels were low,                                           and also could not achieve             This increased risk is usually
but I tried to get outside and                                       the closure to my lymphoma             not linked to a particular gene.
walk a bit, even in the early                                        experience I wanted. I spoke           Research suggests the increased
days at home. I began to feel                                        to a psychological nurse who           risk may be caused by inheriting
better, but it was slow, and                                         helped me to think about my            several polymorphisms (variants
not every day was better                                             life after lymphoma. I needed          of a gene that can affect the
than the last. There were                                            to adjust my work life balance.        way the gene works) that all
times I felt like I was going                                                                               contribute a small increase in
backwards and my energy                                              Work were really helpful and I         risk. These polymorphisms
levels weren’t getting higher.                                       think between us we realised           are often in genes of the
But I was getting better and I                                       that the old normal was not            immune system.
just needed to be patient.                                           going to be the new normal.
                                                                     At least not for now. I am             Owen is currently
I began a phased return to                                           now working less, and Yvonne           participating in a genetic
work at the beginning of                                             and I are enjoying this new            project and it is hoped
                                                                     phase of life together, that           that such studies will
                                                                     at the beginning we thought            help understanding
        gous
 Autolo l
 stem
       cel
                                                                     we might not have. Whilst              in the future.
         lant
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              gous                  t
       Autolo ll transplan
           m ce
       ste               n stem
                                cells

            A trans
                   ur ow
                    plant
                            using
                                    yo
                                                        We have recently revised our book, Autologous
                                              nt?
                                                        stem cell transplant. Download or order a free
                                     transpla
                              m cell
                What
                Havin
                     is a ste
                      g a ste
                       a ste
                              m cell

                             m cell
                                      transpla

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                                                        copy at lymphoma-action.org.uk/Books
                 After

         LymphomaAction                             LymphomaAction        www.lymphoma-action.org.uk              Lymphoma Matters Spring 2020   15
Find out more at lymphoma-action.org.uk/GetInvolved
FUNDRAISING

     MARCH                                              APRIL
     Quiz month                                         Easter fun
     Switch on your                                     We are leaping
     brains because                                     with joy and
     this is quiz month!                                egg-static it’s Easter!
     Download our pack of top tips on holding a         Help get the country treasure hunting by
     quiz, including six rounds of quiz questions       holding Easter Egg Hunts. Our Egg Hunt
     from lymphoma-action.org.uk/Quiz                   pack includes pictures of eggs, which you can
                                                        cut out and hide in your garden or perhaps
     Alternatively, get your local pub
                                                        even at work around your office! Children
     involved and join the world’s biggest
                                                        will also enjoy our LEAP for lymphoma
     pub quiz across the UK from 8-12
                                                        where we are encouraging them to be
     March 2020. There is no charge to
                                                        sponsored to bunny leap for lymphoma.
     take part, but it is a great way
     to raise money for Lymphoma                        To get your Egg Hunt pack or your
     Action. PubAid will supply                         LEAP for lymphoma pack –
     you with the quizzes and                           including bunny ears! –
     promotional material.                              visit lymphoma-action.
     Go to worldsbiggestquiz.                           org.uk/Easter
     pubaid.com for more details.

     MAY                                                 JUNE
     All about                                           Bridges and teddies
     food                                                Join in with our Bridges of
                                                         London walk on Sunday 7 June –
     May is all about food. Get                          full details on page 7.
     your friends and family together
                                                         As it’s June, why not hold a teddy bears
     and hold a Lunch for lymphoma.
                                                         picnic? This is a lovely way to involve
     You can host a lunch at home and charge             children and is very easy to organise
     a small ticket price, then hold a raffle on         with your family, school
     the day. BBQs, picnics and evening dinner           or nursery. Just ask
     parties count too! Alternatively you could          children to bring
     ask a local restaurant to support you with a        their favourite
     set menu, where you can add a little extra          teddy and provide
     on the ticket price and raise some additional       some snacks and
     funds. For lots of ideas and some great             games. For your
     recipes go to our website and download              fundraising pack,
     your free Lunch for lymphoma pack:                  please visit
     lymphoma-action.org.uk/Lunch                        lymphoma-action.
                                                         org.uk/Teddies
16   Lymphoma Matters Spring 2020
Find out more about legacies at lymphoma-action.org.uk/Legacy
                                                                                                FUNDRAISING

The Lymphoma Action
Spring Prize Draw is a great
opportunity for you to
make a difference to our
frontline services!                                        Caroline received a diagnosis of stage 4
                                                           follicular lymphoma just as she turned
                  Caroline reached out                     40. She has now been in remission for 13
                   to our support services                 years, and knows from personal experience
                    after receiving her own                just how important our services are in
                     lymphoma diagnosis:                   helping people feel informed, encouraged and
                      'When I contacted                    supported during their treatment and beyond.
                       Lymphoma Action they
                        were so supportive, and            Help us to keep our front line services running
Caroline                they were the first people         by taking part in our Lymphoma Action Spring
                       that I had a conversation           Prize Draw. Every ticket bought helps us to
         with where I wasn’t completely terrified.         continue our work in making sure that no one
The Buddy that they found for me was the first             faces lymphoma alone. To find out more, call
person who gave me hope and now I want to                  the Fundraising Team on 01296 619419 or email
do the same for others in a similar position.'             fundraising@lymphoma-action.org.uk

 IT'S

Spring is the perfect time
to sow periwinkle seeds.
Ours are only £1.50 a packet
and are sure to brighten up
your garden. The Madagascar
periwinkle (Catharanthus
roseus) is used to produce
two chemotherapy drugs –
vinblastine and vincristine.
Once your seeds have grown we                 ONLY
would love to see your photos, so           £1.50
please share them on social media
at #LymphomaMatters.
Periwinkle seeds and pin badges are perfect for
wedding favours at lymphoma-action.org.uk/Shop

    LymphomaAction     LymphomaAction      www.lymphoma-action.org.uk            Lymphoma Matters Spring 2020   17
MEDICAL
               OPINION

                                                      FOLLICULAR
                                                      LYMPHOMA
Stock photo

                                                        A journey from prognostic factors
                                                            to risk-adapted therapies
                   Professor Stefano
                   Luminari, Professor
                   of Oncology at the             In this case, the subject is        is to choose your transport
                   University of Modena           risk-adapted therapy for            and plan your route.
                   and Reggio Emilia in           follicular lymphoma. The
                                                  question to ask is: is follicular   In terms of response-adapted
                   Italy, gave a fascinating      lymphoma suitable for risk-         treatment in follicular
                   talk at the 49th Annual        adapted therapy?                    lymphoma, this means
                   Trials Meeting. He                                                 deciding how to define ‘high
                                                  The results of previous trials      risk’ and how to measure
                   compared his research
                                                  suggest that it is: follicular      response to treatment.
                   into follicular lymphoma       lymphoma is a heterogeneous
                   with a holiday in his          (diverse, composed of different     Several scoring systems, such
                   home town of Modena.           parts) condition and several        as FLIPI and PRIMA-PI, use
                                                  factors have been identified        clinical features, blood tests
                   Choose your destination        that influence treatment            and bone marrow biopsy
                   When you’re going on           outcomes. There does seem to        results to classify follicular
                   holiday, you choose your       be a clear difference between       lymphoma as low or high
                   destination carefully and      people who are at high risk         risk. However, they all define
                   make sure the planning,        of relapse or progression and       high risk slightly differently. In
                   expense and time involved      those who have a longer-lasting     addition, other factors such as
                   is going to be worthwhile.     response to initial therapy.        genetic profiling, quantitative
                   Similarly, when addressing                                         measures of the amount
                   a scientific question, you     Select your means of                of lymphoma in the body,
                   need to choose your area of    transport                           and PET/CT scan results are
                   research carefully.            The next step in your journey       also important in identifying
              18   Lymphoma Matters Spring 2020
Read more about follicular lymphoma at lymphoma-action.org.uk/FL                                    MEDICAL
                                                                                                    OPINION

people with high risk                  The PETReA study is testing          results and the full results of
lymphoma. Similarly, response          whether response to initial          the study are not yet available.
to treatment can be assessed           treatment for follicular
in a variety of ways, including        lymphoma, assessed by PET/           Ask if the journey was
PET/CT scanning.                       CT scan, can be used to              worth it
                                       determine who would benefit          After any trip, you probably
The FOLL12 study selected              from maintenance therapy             reflect on whether it was
a score known as FLIPI2 to             and what maintenance                 worthwhile, if you would go
define high risk follicular            regimen to use. This study           back and what you would do
lymphoma, and PET scanning             is open to recruitment and           differently if you went again.
and ‘minimal residual                  results are not yet available.
disease’ (MRD; no evidence                                                  In research terms, FOLL12
of follicular lymphoma in              It is now time to go                 has certainly provided some
the bone marrow) to assess             on your journey!                     valuable results. Unpublished
response to initial treatment.                                              data have confirmed that
Together, these measures               The FOLL12 study opened              FLIPI2 and PET scan results
are a strong predictor                 in July 2012. Interim results        after four cycles of treatment
of outcomes in follicular              were presented at the                are independent predictors
lymphoma. The FOLL12 study             International Conference             of response to treatment in
aimed to find out if they              on Malignant Lymphoma in             follicular lymphoma. However,
can be used to determine               June 2019. Surprisingly, these       there remains a need for better
whether or not maintenance             results showed that                          ways of identifying
therapy is necessary for               outcomes in the                                  people with high risk
people who respond well to             response-adapted         We need better            disease in order
initial therapy for advanced,          arm of the study         ways to identify          to improve the
high risk follicular lymphoma.         were not as                                        effectiveness of
                                                                people with high
This approach is known as              favourable as                                      treatment.
                                       outcomes in the             risk disease.
response-adapted treatment.
                                       standard treatment                              In conclusion,
Prepare for your trip and              arm, in which                               treatment      of follicular
check the forecast                     everyone received the                lymphoma should be based
It’s always wise to research           same maintenance therapy             on the specific needs of
where you’re going so you              regardless of their response         each individual. Most people
have an idea of what you               to initial treatment. This           have low risk disease and it is
might expect when you get              suggests that a complete             important that treatments do
there. Of course, however              response to initial treatment,       not do more harm than good.
prepared you are, you might            assessed by PET and MRD,
meet unexpected surprises              is not sufficient to omit            With thanks to Professor Stefano
                                                                            Luminari, Professor of Oncology,
along the way.                         maintenance treatment.               University of Modena and
                                       However, it’s important to           Reggio Emilia, Italy for
To this end, the researchers           note that these are interim          reviewing this article.
asked: has anyone tried a
response-adapted approach                De-intensifying treatment regimens in people
to advanced follicular                   with low risk follicular lymphoma would be a
lymphoma treatment before?               valuable area for future research.

   LymphomaAction     LymphomaAction       www.lymphoma-action.org.uk             Lymphoma Matters Spring 2020   19
PERSONAL
EXPERIENCE

     MY
     CANCER
     WITH THE
     STUPID NAME
     Dwayne talks about his diagnosis
     of mycosis fungoides
                                                                         I had no idea of
 As part of the creative            want to get them checked           the impact that trip
 writing section of my              out as it could be alopecia           to the barbers
 university degree, I was           (spot baldness, often on the           would have.
                                    scalp).’ I decided to see my
 asked to write about               GP who checked me over and
 something that had                 told me it was probably just
 impacted on my life. That          an allergic reaction to a kitten
 wasn’t difficult for me…           we had recently taken on.          we went back, but I told her she
                                                                       didn’t need to come into the
 Five years ago I was 25, living    Over the next 3 or 4 weeks,        consultation with me. I wouldn’t
 a family life with a partner       the patches of hair got worse      be long and it would be nothing
 and her daughter and I             and it looked like a UFO had       to worry about. Little did I know!
 had a full-time job.               come down and made crop
                                    circles on the top of my head.     I was diagnosed with stage 1
 I desperately needed a             My doctor referred me to           mycosis fungoides or MF for
 haircut, so headed to my           a specialist at the hospital       short. It was explained to me
 barbers. At the time I had         who took a biopsy from my          that it is a type of lymphoma
 no idea of the impact of           shoulder and told me to come       that affects the skin. Because it
 something he said to me:           back in a couple of weeks'         was early stage and not affecting
 ‘You have really thin patches      time for the results. My           my health, no treatment was
 of hair, Dwayne. You might         partner came with me when          necessary at diagnosis.
20   Lymphoma Matters Spring 2020
Find out more about cutaneous (skin) lymphoma at lymphoma-action.org.uk/SkinLymphoma       PERSONAL
                                                                                          EXPERIENCE

I kept going back to the hospital for check-ups and reviews and
over time I had about seven or eight biopsies. It came to the
point when I was told that they wanted to do five sessions of
radiotherapy over 5 days. This was when it really hit me.
They said they would need to make a metal plate for the
bottom of my back. I joked: ‘Like Robocop?’ But sadly it was
far less cool than that; it was a metal plate in the shape of
the top of my bum and back.                                             They needed to make a
                                                                       metal plate to protect me
I found the five sessions of radiotherapy OK; they involved               during radiotherapy.
a fair amount of waiting around, and then me lying down while
                                                                       I pictured 'Robocop' but
a large machine zapped me through a hole in the plate that
was made for me.                                                           in reality it was far
                                                                                less cool.
The patches went down and, whether it was
coincidence or part of the treatment, my hair
grew back, which was massive for me.
Since then, I have only needed to go for regular check-ups.                       If you would
                                                                                  like to talk to
For quite a while, I was able to put it to the back of my mind,                   someone about
but over time I have realised that emotionally it has affected                    how lymphoma has
me far more than I really acknowledge. If I feel unwell at any                    affected you, why
point – and recently when I had back pain – my first thought                      not call our Helpline,

                                                Dwayne
is about my lymphoma, and I feel it will                                          available Monday to
always feel present in some way.                                                  Friday, 10am to 3pm,
                                                                                  on 0808 808 5555.

DID YOU KNOW?
Cutaneous (skin) lymphoma
Skin lymphomas start in the skin. They are
often difficult to diagnose as they can resemble
other more common skin conditions. Skin
lymphomas differ from other types of
low-grade non-Hodgkin lymphoma because
treatments are often topical (applied to the
skin) rather than systemic (affect the whole
body). There are lots of different types of
skin lymphoma. Most develop from T cells,
with the most common being mycosis
fungoides. They are typically chronic
(long-term) conditions and are not
usually life-threatening.

   LymphomaAction    LymphomaAction    www.lymphoma-action.org.uk          Lymphoma Matters Spring 2020   21
MEDICAL
 OPINION

       Understanding
       blood tests

                                           Blood tests
                                       provide important
                                    information about how
                                    your body is responding
                                     to the lymphoma and
                                         its treatment.

22   Lymphoma Matters Spring 2020
Patient.co.uk and the NHS website have more information on blood tests.                          MEDICAL
                                                                                                 OPINION

We have received a number of enquiries
asking for more information about blood
tests, why they are done and what the
results tell us. In this article, we
hope to answer some of these questions.
You are likely to have regular         responding to the lymphoma         when they look at your
blood tests as part of your            and its treatment. If you          blood test results to decide
diagnosis, throughout your             are in follow-up, you are          what the results mean for
treatment and as part of               likely to have blood tests         you. Factors they might
your follow-up.                        at your check-ups but less         consider include results from
                                       frequently than you did            other tests and knowledge
Blood tests are done to:
•   help diagnose a few types
    of lymphoma (a biopsy is
                                       before. The lymphoma and
                                       its treatment can cause
                                       frequent changes in your
                                                                          of any medical conditions
                                                                          you have. They can explain
                                                                          what your test results
    needed to diagnose most            blood results. Your blood          mean and don’t be afraid
    lymphomas)
•   find out more about
    the lymphoma before
                                       test results should be more
                                       stable when you are in
                                       follow-up, so less frequent
                                                                          to ask your medical team if
                                                                          anything about your results
                                                                          concerns you.
    treatment is planned
•   check your general health
    before or during treatment
                                       tests are needed.
                                       What do my blood test
                                                                          What is a ‘reference range’?

•   assess how your treatment
    is affecting you
                                       results mean?
                                       Your medical team should
                                                                          When blood test results
                                                                          come back from the

•   check whether you have
    recovered enough from one
                                       tell you if your blood test
                                       results are normal or if
                                                                          laboratory, they are reported
                                                                          together with a ‘reference
                                                                          range’ (or ‘normal range’).
    cycle of treatment before          there are any problems.            Most people’s results are
    starting the next one              You can ask to see your
•   monitor the lymphoma and
    your general health during
                                       results, but they can be
                                       difficult to interpret. Do
                                                                          within the reference range.
                                                                          Around 1 in 20 healthy people
                                                                          have results outside the
    follow-up after treatment          not be alarmed if your test        reference range. Many factors
    and during any periods of          results seem to be outside         can influence your blood test
    active monitoring (or              the reference range. Many          results, for example, age, sex
    'watch and wait').                 people have results outside        or ethnicity.
                                       the reference ranges that are
Blood tests are done                   not a cause for concern. Your      Lab Tests Online have
frequently as part of                  medical team consider your         information on reference
diagnosis and treatment.               individual circumstances           ranges for common blood
They are useful in giving
your medical team
                                         Don't be afraid to ask your medical team
important information
                                         if anything about your results concerns you.
about how your body is

     LymphomaAction   LymphomaAction      www.lymphoma-action.org.uk           Lymphoma Matters Spring 2020   23
MEDICAL                            Lab Tests Online have information on reference ranges at labtestsonline.org.uk
 OPINION

     Figure: The different
     blood cells that develop
     from stem cells
     New blood cells are released
     from the bone marrow into
     the bloodstream.

     tests. However, blood tests       of each type of blood cell is           in the blood. Haemoglobin
     are not done in the same          often called the ‘count’.               is a protein in red blood cells
     way in all laboratories.                                                  that carries oxygen around
                                               Blood cells are made
     Laboratories might                                                        the body. Further tests on
                                                  from blood stem
     have slightly            You can ask to                                   the blood, such as what the
                                                    cells in your bone
     different ranges,        see your blood                                   blood cells look like under
                                                     marrow (the
     use different            tests, but they                                  the microscope, can give
                                                     spongy tissue
     techniques               can be difficult                                 other useful information.
                                                    in the centre of
     or might use              to interpret.
                                                   your bones). Stem           Possible low blood counts
     different units to
                                                 cells are basic cells         include:
     report their results.
     Your medical team are
     best placed to advise about
                                             that can develop into
                                       more specialised cells. Blood           •   anaemia – a low count of
                                                                                   red blood cells or a low level
                                       stem cells can become:                      of haemoglobin in the blood
     your blood test results as
     they know your individual
     circumstances.
                                         •
                                         red blood cells, which carry          •   thrombocytopenia –
                                                                                   a low platelet count
                                                                               •
                                         oxygen around your body
     Blood tests used for                •
                                         platelets, which help your
                                         blood to clot, preventing
                                                                                   neutropenia – a low count
                                                                                   of a type of white blood
     people with lymphoma                bruising and bleeding                     cell called a neutrophil.
     There are many different
     blood tests used for people         •
                                         white blood cells, which
                                         fight infection as part of
                                                                               Other types of white blood
                                                                               cell might be low too.
     with lymphoma. The most             your immune system.
     common is the full blood                                                  You can develop low blood
     count.                            Why is the full blood                   counts for several reasons:
     The full blood count (FBC)
     is a test that measures how
                                         count done?
                                         A FBC checks for low blood
                                                                               •   lymphoma in your bone
                                                                                   marrow takes up space
     many blood cells there are          counts. It also measures how              needed for healthy blood
     in your blood. The number           much haemoglobin there is                 cells and blood stem cells
24   Lymphoma Matters Spring 2020
Find out more about blood tests at lymphoma-action.org.uk/BloodTests                                 MEDICAL
                                                                                                     OPINION

•   some treatments stop your
    bone marrow from working
                                       of treatment. If your blood
                                       counts are too low, your
                                                                                have Waldenström’s
                                                                                macroglobulinaemia
    properly as they affect both
    lymphoma cells and healthy
                                       treatment might be delayed
                                       until they recover. Your blood
                                                                            •   levels of abnormal
                                                                                proteins in your blood,
    blood stem cells                   counts usually recover on                measured by serum
•   some types of lymphoma
    cause antibodies to form
                                       their own in time but some
                                       people are given supportive
                                                                                protein electrophoresis, if
                                                                                you have Waldenström’s
    that attack your own               treatments like growth factors           macroglobulinaemia
    healthly blood cells; this
    is called ‘autoimmunity’.
                                       to help boost blood counts.          •   your blood group (if you
                                                                                need a blood transfusion)

If you have low blood counts
                                       If you are having a newer
                                       drug that you take every             •   if you have signs of an
                                                                                infection, which can be
                                       day, you have regular blood
due to the lymphoma,                                                            measured by the CRP level
                                       tests to check how you are
treatment for the lymphoma                                                      or from a blood culture
                                       responding to the treatment.
can help your blood counts                                                      (growing any bacteria in
recover. Monitoring your               What other blood tests                   your blood)
blood if you are on ‘watch
and wait’ can help your
                                       are used?
                                       Many other blood tests
                                                                            •   if you have or have had
                                                                                a viral infection that
medical team decide when               are used for people with                 could be related to
you need to start treatment.           lymphoma. For example,                   the lymphoma or that
                                       they can be done to find out:            could flare up while your
The FBC is a very important
                                       •
                                                                                immune system is low
blood test when you are                    how well your liver and              (viruses such as HIV,
on treatment as most                       kidneys are working
                                       •
                                                                                hepatitis B virus, hepatitis
treatments for lymphoma                    whether you have any                 C virus, cytomegalovirus,
can cause low blood counts.                signs of inflamation – this          or Epstein–Barr virus).
These treatments include                   is done by measuring
chemotherapy, antibody                     substances in the                Your medical team might
therapy and many targeted                  blood, such as lactate           suggest other blood tests
drugs. Radiotherapy does not               dehydrogenase (LDH) or           depending on your individual
usually cause low blood counts             C-reactive protein (CRP)         circumstances.
unless a large area of your bone           and by measuring the             Patient.co.uk and the
marrow is being treated.                   erythrocyte sedimentation        NHS website have more
                                           rate (ESR)                       information on blood tests.
If you are having
chemotherapy or antibody
therapy, your blood counts
                                       •   your plasma viscosity
                                           (PV) (the thickness of
                                                                            Lab Tests Online has an
                                                                            index with more detailed
usually begin to recover                   your blood) – this is an         information on many
a week or two after each                   important test if you            different blood tests.
treatment. Your medical
team monitor your FBC after                Acknowledgements: With thanks to Dr Bhupinder
each treatment to make                     Sharma, Radiology Consultant, The Royal Marsden
sure your blood counts are                 Hospital NHS Foundation Trust, London, for reviewing
at a safe level for you to                 this article. This is an edit of detailed information which
have your next planned dose                can be found at lymphoma-action.org.uk/BloodTests

     LymphomaAction   LymphomaAction        www.lymphoma-action.org.uk          Lymphoma Matters
                                                                                   Lymphoma      Winter
                                                                                            Matters     2018/19
                                                                                                    Spring 2020   25
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PERSONAL
EXPERIENCE

        ‘The past is a
        foreign country;
        they do things
        differently there.’
         LP HARTLEY

     I’m not the same person I
     was before my diagnosis
     of Burkitt lymphoma                                         – KATHLEEN

     I have been in remission from Burkitt         had a rare cancer that my medical team had
     lymphoma, a type of high-grade non-           not treated before. As for me, I had barely
     Hodgkin lymphoma, for over 12 years.          heard of the word ‘lymphoma’. Looking back,
                                                   I walked into hospital relatively fit but left,
     What had started as backache and a            several months later, bald, feeling lousy and
     lump in my armpit, saw me referred            incapable of walking unaided.
     to my local hospital.
                                                   I had been told my lymphoma was aggressive
     I had a series of meetings with consultants   and would be treated aggressively with full-
     and many tests later was told I had           time stays in hospital, where I would be given
     lymphoma, but that further tests were         R-CHOP chemotherapy and methotrexate.
     needed to identify the exact type.            Unfortunately I had a reaction to the latter,
     On 4 November 2006, I was diagnosed           endured C. difficile and developed sepsis,
     with Burkitt lymphoma, stage 4.               which was life-threatening and reduced
     Venturing into the unknown was                my mobility significantly.
     frightening, especially when I was told I     I had tubes, cannulas, Hickman® and PICC

26   Lymphoma Matters Spring 2020
Read more about Burkitt lymphoma at lymphoma-action.org.uk/Burkitt                             PERSONAL
                                                                                              EXPERIENCE

 lines for chemotherapy. There were tubes              The real highlight was on 23 April 2007. I
 to feed me and catheters to remove                    had braced myself for the worst, so it was
 urine. I was unable to get in or out of               actually a shock when I was told I was in
 bed. I could not clean, wash and dress                remission. I still celebrate
 myself, or feel my feet. I needed help for            this date.
 the most basic of tasks. I could no longer                                          While my
 read, concentrate or sleep. Worst of all              While my
                                                       treatment had              treatment    had
 was the inability to enjoy food and the
                                                       finished, my                finished, my
 continuous nausea.
                                                       recovery had             recovery had only
 The most overwhelming feeling                         only just begun.             just begun.
 throughout the process was fatigue.                   The question I had
 Clinical staff warned me about this, but              to face was how to
 in all honesty, I don’t think they really             move on from feeling
 understand how debilitating this can be. I            ‘institutionalised’ to returning to the ‘real
 remember my sister and her son visiting me            world’ and adapting to a ‘new normality’.
 in hospital and not having the strength to
 reach out and put on my glasses. Without              To help with this, I received support from
 being able to see them, I was unable to               specialist nurses and had regular check-ups
 communicate with them effectively, and                with my consultant over 5 years.
 that memory still haunts me.                          I became a member of a Lymphoma Action
 Despite enduring the treatment, there                 Support Group and am a Buddy. I am
 were a number of things that have                     also a member of the Reader Panel that
 stayed with me:                                       ensures the organisation’s information
                                                       is easily understood. This has kept a link
 •    the incredible support offered by my
      late husband, family and friends
                                                       which has helped me stay informed of
                                                       latest developments in treatments for
 •    the wonderful care and consideration I
      received from my medical team
                                                       lymphoma. At a local level, I have been
                                                       a cancer buddy for over a decade at the
 ••   the honesty of my consultant
      living on banana milkshakes, ice-pops
                                                       hospital that saved my life.

      and the picnics provided by my late              Cancer changed me in a variety of ways:
      husband                                          hair loss, scarring, weakened muscles and
  •   the joy of having a shower for the first
      time in many days
                                                       lack of feeling in toes and fingers. I had got
                                                       into habits that still continue, like wetting
  •   certain TV programmes that still
      remind me of my time in hospital. I
                                                       my head under the shower as I did when
                                                       I had no hair. These are minor concerns
      can’t watch ‘Strictly Come Dancing’              in comparison with the emotional and
      without thinking about chemotherapy.             mental problems I have faced. There is the
                                                       frustration of not being able to do things
                                                       I could do before. Some of this I have put
      The most overwhelming                            down to ‘chemo brain’, which causes me
                                                       problems with concentration and with
      feeling throughout the
                                                       finding the correct word. Surprisingly
      process was fatigue.
                                                       though, I have become more creative and

      LymphomaAction   LymphomaAction    www.lymphoma-action.org.uk           Lymphoma Matters Spring 2020   27
PERSONAL                     Find out more about side effects of lymphoma at lymphoma-action.org.uk/SideEffects
EXPERIENCE

     enjoy many crafts that I would not have               number of companies who would provide
     tackled in the past.                                  travel insurance, albeit after some detailed
                                                           questioning about my pre-existing medical
     Because my immune system was                          condition and at an increased price.
     compromised when I was being treated, I
     have become paranoid about infection                One important message I have is the
     control; I hesitate to shake hands                        need to care for carers. Family and
     with people and nothing is                                   friends have to master their own
     designed to infuriate me more        Cancer impacts            fears. Cancer impacts upon
     than someone sneezing close            upon whole               whole families, friends and
     by, even after all these years.                                 communities. Relationships
                                          families, friends
                                                                     can change. Those that matter
     If I have aches, pains or           and communities. continue as before; others may
     unexplained lumps, I do not                                   change beyond recognition.
     hesitate to see my doctor.
     No, I am not turning into a                             Having undergone treatment for
     hypochondriac, but I am only too well             cancer, I have changed as a person and,
     aware that cancer generally needs to be         I am told, am more sensitive to others
     identified quickly and I do not propose to      experiencing difficulties. It has also
     take any chances.                               reaffirmed my belief in the importance
                                                     of gratitude and living life
                                                                                            Kat hleen
     Travel was important to me before cancer        to the full.
     so I was delighted to discover there were a

        DID YOU KNOW?

       More about
       Burkitt lymphoma
       Burkitt lymphoma is a very fast
       growing type of high-grade
                                                           •   It develops from B lymphocytes
                                                               (white blood cells that fight infection).
       non-Hodgkin lymphoma.
       •   It is uncommon – about 250 people
                                                           •   Symptoms often develop quickly,
                                                               over just a few days or weeks.
           are diagnosed with Burkitt lymphoma
           every year in the UK.                           •   Treatment usually begins very soon
                                                               after diagnosis with a combination
       •   It is the most common type of
           non-Hodgkin lymphoma in children,
                                                               of strong chemotherapy drugs and
                                                               antibody treatment rituximab.

       •
           although it can occur at any age.
           It affects about three times more
                                                           •   Most people stay in hospital for
                                                               most or all of their treatment, which
           men than women.                                     can take several months.

28   Lymphoma Matters Spring 2020
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