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lymphoma
ISSUE 113 SPRING 20 19 matters
Volunteering
opportunities
Update on
diffuse large B-cell
lymphoma
Chemo brain
12
Mary’s
06 Diffuse large B-cell
lymphoma
experience of
chemo brain 14
What is
chemo brain?
20 26
22
Stuart’s experience
of Hodgkin What is a normal Update on
lymphoma response to cancer? clinical trials
Contents 04 Latest 30 Our
Volunteers
Lymphoma Action is the UK’s only news survey into
charity dedicated to lymphoma, the Current news and volunteering
fifth most common cancer in the UK, developments
32 Support
and the most common among people
10
aged 15-24. We’ve been providing
in-depth, expert information and Challenge groups and
wide-ranging support for over 30 years, events helpline
helping thousands of people affected Get involved How we can
by lymphoma. Our work drives
improvements in the diagnosis,
support you
18
treatment and aftercare of
Community
34 expert
Ask the
lymphoma. We’re here for you.
Views expressed in this publication are those of the
fundraising
contributors. Lymphoma Action does not necessarily Ideas and dates
agree with or endorse their comments. Questions about
for your diary
© Lymphoma Action 2019.
For further information about permitted use
clinical trials
of our materials, please refer to our website.
Editor: Anne Hook
Cover: Fundraisers who climbed Ben Nevis
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 www.lymphoma-
action.org.uk/Donate or call 01296 619419.
Lymphoma Action
3 Cromwell Court, New Street,
Aylesbury, Bucks HP20 2PB
www.lymphoma-action.org.uk
Freephone helpline 0808 808 5555
Lymphoma Action is a registered charity in England and Wales (1068395) and in Scotland
(SC045850). A company limited by guarantee registered in England and Wales (03518755).
To keep up-to-date with developments visit www.lymphoma-action.org.uk/News
WELCOME
Long-term plans
With the publication of the NHS ten-year plan, the
Government has set out a number of priorities for
the future of cancer care.
With our patient focus, we were able to represent the needs of
people affected by lymphoma during the consultation stage. Whilst
we were pleased to see the more personalised and co-ordinated
approach to cancer care in general, we want the Government to
commit to providing the resources and workforce we believe are
Ropinder Gill needed to make the long-term plans a reality for patients.
Chief Executive
Resources are a pressure for everyone. As a charity we certainly
understand this, which is why it is important to us that every
Help shape our penny you donate goes towards providing the services that
magazine by filling make a real difference to people affected by lymphoma. These
in our survey services include our award-winning Live your Life programme,
enclosed or go to which helps people live with and beyond their lymphoma, our
www.surveymonkey. care and support services and our relevant and up-to-date
co.uk/r/LM19
information, including videos and animations.
We can only continue to meet your needs if you share what
those needs are. That is why I would urge you to complete and
return the enclosed survey to help us make our magazine better
for you and others affected by lymphoma. You can also fill the
survey in online at www.surveymonkey.co.uk/r/LM19
Lastly, I would like to thank everyone who supported us through
our special Treasurers appeal and other Christmas initiatives. Your
generosity has given us the tremendous boost we needed going
We hope you like this into 2019.
edition of Lymphoma Matters.
You can sign up to regularly Please enjoy this first 2019 edition of Lymphoma
receive our magazine at
www.lymphoma-action.org.uk/
Matters magazine and I look forward to
SignUp meeting you this year at events, such as
our National Conference on Saturday 11 May
or our Bridges of London Walk on
Sunday 12 May.
Ropinder Gill
Chief Executive
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2019 03
Latest news www.lymphoma-action.org.uk/News
NEWS
genomic testing to all people
launches new
with cancer for whom it
would be of clinical benefit.
ten-year plan • Integrated Care Systems
to bring together local
organisations involved in
healthcare – GPs, hospital
The NHS launched its new ten-year plan on clinicians and charities.
7 January 2019 following consultation with the
public, staff, service users and organisations • Improved access to
clinical trials.
including Lymphoma Action.
Lymphoma Action chief
Whilst lymphoma was not effective treatment. The executive Ropinder Gill
specifically mentioned, we plan aims to extend the use commented: ‘We are very glad
are delighted that many of of molecular diagnostics in to see a more personalised and
the recommendations we adults and, over the next coordinated approach to cancer
made appear in the plan. ten years, routinely offer care in the NHS ten-year plan.’
There is a shift that suggests a
more personalised, coordinated
approach to cancer care in
New booklets Easy Re
now available
version ad
general, including:
•
After tr
for lym eatment
Faster, accurate diagnoses We have revised Clinical trials for phoma
through the roll-out of lymphoma and Tom has lymphoma,
Rapid Diagnostic Centres a storybook for children. We have
for people with symptoms also just published four Easy Read
associated with cancer. booklets:
• From 2020, most patients
to receive a definitive
• Finding out you have lymphoma
• Watch and wait for lymphoma Eas
y
vers Read
ion
• Treatment for lymphoma
1
diagnosis, ruling out cancer
within 28 days of referral. • After treatment for lymphoma Trea
lym tment
pho f
ma or
• Within the next three
years, every patient will
Clinical trials
for lymphoma
receive an individual care
Clinical trials
plan covering a needs for lymphoma
assessment and access to
information and ongoing What are clinica
l trials?
AS
What do they involv
TOM HHOMA
support.
e?
Lymphoma resear
ch
•
Taking part 1
LYMP Order or download our booklets
DNA testing for children
with cancer to understand
specific conditions better
and prescribe the most at lymphoma-action.org.uk/Shop
04 Lymphoma Matters Spring 2019
NEWS
Lymphoma Live your Life
Action programme wins award
shortlisted Our Live your Life programme has been awarded an
for Charity AbbVie Big Ideas for Better Health Award 2018.
Film Award The Awards were launched by the biopharmaceutical
company AbbVie in 2015 to recognise, celebrate and share
We’re delighted exceptional examples of healthcare improvements and
our animation innovation that demonstrate clear benefit to the lives of
explaining patients. Our Live your Life programme was recognised in
lymphoma the ‘Supporting Self-Management and Self-Care’ category
to children for addressing a real area of unmet need – post-treatment
has been support for people living with lymphoma.
shortlisted
in the Stephen Scowcroft, director of business development
Charity Film at Lymphoma Action said: ‘We are delighted to have won
Awards. this award. Our Live your Life programme has allowed
Ropinder Gill, our chief us to offer additional support and activities to help
executive, explains: ‘We’re people take control and find their ‘new normal’. 100%
often asked to help parents of attendees say they learned what they can do to live
who need to talk to children better during and after lymphoma and 97% said they
about a lymphoma diagnosis feel more confident in recognising signs and symptoms
in the family. Their feedback that should be reported to healthcare professionals.’
suggested that a simple, Find out more about Live your Life at
visual approach would www.lymphoma-action.org.uk/LYL
help to put this complicated
condition across to
children in a way that
was reassuring and
easy to understand.
Our animation, voiced Stephen Scowcroft, director
by a child, covers of business development at
what lymphoma is, Lymphoma Action (left) with
the kind of treatment MP Henry Smith, chair of the
someone might have for All-Party Parliamentary Group
lymphoma and how a on Blood Cancer, at the awards
lymphoma diagnosis ceremony at the House of
might affect day- Commons in London on
to-day life.’ Watch at 20 November 2018.
www.youtube.com/
LymphomaAction
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2019 05
PERSONAL
MEDICAL
STORIES
OPINION
Diffuse
large B-cell
lymphoma
from there to here;
from here to the future
Survival for people
with diffuse large B-cell
lymphoma (DLBCL) has Hodgkin lymphoma (NHL) Treatment: from
improved dramatically and leukaemia was not made there to here
since the 1960s, making until 1925. DLBCL, the most Early-stage (localised to one
common type of high-grade place) DLBCL was originally
management of DLBCL
non-Hodgkin lymphoma, treated with radiotherapy
one of the great success
was not firmly accepted as a (treatment with powerful
stories in lymphoma X-rays) alone, but some
specific diagnosis until 1994.
care. At the lymphoma people did not completely
clinical studies group The incidence of NHL has respond to radiotherapy.
(CSG) annual clinical been increasing since the The standard treatment
trials meeting, Professor 1970s, mostly occuring in plan was changed to include
David Linch outlined older people, with an chemotherapy (treatment
how this progress has average age at diagnosis with drugs) as well as
been achieved and where of over 65. The increasing radiotherapy, and later
research is heading. incidence of NHL may the antibody treatment
have much to do with an rituximab was added. This
The distinction between ageing population as well as combination works well
Hodgkin lymphoma, non- improvements in diagnosis. and stage 1A DLBCL can
06 Lymphoma Matters Spring 2019
Find out more about diffuse large B-cell lymphoma at www.lymphoma-action.org.uk/DLBCL MEDICAL
OPINION
Management
of DLBCL is one
of the great
be treated very effectively. since CHOP was introduced success stories in
However, it is noteworthy, due to several factors. lymphoma care.
that studies of people treated
only with radiotherapy 1. Improved supportive
showed that most people care and expertise:
whose lymphoma got worse Improvements in antibiotics 2. Addition of rituximab
had lymphoma growing to prevent infection, the to CHOP: The combination
outside of the area that was introduction of growth of rituximab with CHOP
treated with radiotherapy. It factors (G-CSF) to boost chemotherapy was first
is possible that these people blood counts, and increased approved to treat DLBCL in
were not staged correctly availability of intensive care 2006. The R-CHOP regimen
and actually had more have all helped to support has now been in widespread
widespread lymphoma people through their use for more than a decade
than was thought. lymphoma treatment. These and has significantly
improvements also allow improved outcomes for
The outlook for people with more people to have the full people with DLBCL.
more widespread lymphoma course of treatment, as doses
was much worse historically. do not have to be reduced or 3. High-dose salvage and
However, in the 1970s, delayed due to side effects. stem cell transplants:
treatment with a combination Greater medical specialisation Around half the people
of chemotherapy drugs known and multi-disciplinary teams whose lymphoma relapses
as ‘CHOP’ was introduced, and (where health professionals (comes back) go back into
long-term survival improved with different areas of remission (no evidence of
dramatically. CHOP remains expertise work together) lymphoma) when given a
the backbone of treatment for also mean that people different chemotherapy
DLBCL. Around two-thirds of affected by DLBCL are now (salvage) followed by high-
people are now successfully getting expert care. dose chemotherapy and
treated, but this varies
greatly according to factors The R-CHOP regimen has been in widespread
such as age and stage of the use for more than a decade and has significantly
lymphoma. Outcomes have improved outcomes for people with DLBCL.
improved over the decades
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2019 07
MEDICAL
OPINION
a stem cell transplant. the CHOP backbone over higher chance of relapse.
There are lots of effective the years. Adding different This knowledge could help
salvage chemotherapy drugs or using different specialists decide if people
regimens for people whose dosing schedules does need more treatment or
lymphoma is still sensitive not seem to have much monitoring.
to chemotherapy. Notably, impact. For example, there For stage 1 DLBCL,
as first-line treatment has is no difference in outcomes improvements in staging
improved, the people who when R-CHOP is given mean it may be possible
need salvage chemotherapy every 2 weeks compared to re-consider whether
tend to be those with with every 3 weeks. radiotherapy or even surgery
lymphoma that is more Dramatic improvements alone are enough to cure
difficult-to-treat. Sometimes, in chemotherapy and most people. Those who
DLBCL does not respond to supportive care are not relapse would still be able
chemotherapy and more expected. Although to have chemotherapy and
treatment options are newer antibodies that rituximab.
needed for these people. have the same target as
rituximab have been For more widespread DLBCL,
4. Improvements developed, they people who do not respond
in imaging: CT Incidence of
don’t offer much to chemotherapy have
scans were first non-Hodgkin
lymphoma has improvement the greatest need for new
introduced in the in outcomes treatments. It is likely that it
been increasing
1970s and they for people with will be targeted treatments
since the
have made it much 1970s. DLBCL. that drive forward progress
easier to diagnose for these people.
lymphoma found deep Cell-free DNA
inside the body. Previously, (sometimes called ‘liquid Targeted treatments affect
explorative surgery may biopsy’) has growing interest processes in cells. They
have been the only way to as a possible tool to help work in different ways to
diagnose a lymphoma, and predict if someone is likely stop cancer cells growing
many people would have to relapse. Cell-free DNA is or dividing, to cause cancer
been monitored for much DNA from the lymphoma cells to die or to use your
longer before diagnosis if this that can be found circulating own immune system to
was needed. PET scanning in the blood. Research help your body get rid
has also helped improve suggests that people who of cancer cells. As they
staging, which is particularly have a sharp decrease work in a different way to
important in identifying in the levels of cell-free chemotherapy, which usually
people who are stage 1 and DNA in a blood sample targets dividing cells, they
need different treatment to taken after their first two can be effective for people
those with more widespread cycles of chemotherapy who need a different type of
lymphoma. have a better outcome treatment.
than those whose cell-free
Treatment: from DNA does not decrease as Many targeted treatments
here to the future dramatically. People with already used for other
There have been many high levels of cell-free DNA types of lymphoma are
attempts to improve on after treatment have a being tested for DLBCL,
08 Lymphoma Matters Spring 2019
Read the latest in lymphoma research at www.lymphoma-action.org.uk/TrialsLink MEDICAL
OPINION
including ibrutinib, idelalisib but some new treatments treatments are beginning to
and venetoclax. However for lymphoma help your be approved for lymphoma
more research is needed as T cells to recognise the but newer versions are
it seems that only certain lymphoma so they can already in development that
groups of people with destroy it. Treatments under should last longer in the
DLBCL might benefit, or that investigation include: body, have several targets
these drugs might be best
used in combination with
other treatments such as
• Bispecific T-cell engagers
(BiTEs), which attach to a
and switches to turn them
on and off.
protein on lymphoma cells In newer classifications of
rituximab or chemotherapy. lymphoma, there is increasing
and also attach to T cells.
Antibody-toxin conjugates, Early versions of these emphasis on molecular
for example polatuzumab drugs have already shown aspects of the disease, which
vedotin, are being tested promise and the next allow DLBCL to be categorised
as possible treatments generation should improve further into groups exhibiting
for DLBCL. Polatuzumab how long they last in the particular genetic changes.
vedotin comprises an body. These differences mean
antibody together with a the lymphoma cells have
chemotherapy drug, so the
antibody can deliver the drug
• Checkpoint inhibitors, for
example nivolumab and
different ways of surviving
and multiplying. Research
directly to the lymphoma pembrolizumab, which are continues to work out the
cells. already used for Hodgkin best way to pick out key
lymphoma. differences between types
Treatments that harness of DLBCL. Unpicking these
the power of your T cells are
of great interest in treating
• CAR T cells, where your
own T cells are modified
molecular differences could
be crucial in knowing which
DLBCL. T cells are a type of so they can recognise and treatments might work best
lymphocyte in your body kill lymphoma cells. These for people with DLBCL.
that helps fight infection
and disease, including cancer. It is likely that targeted treatments will drive forward
Many cancers find ways to progress for people who do not respond to chemotherapy.
evade your immune system
Find out more ??????????
With thanks to Professor David Linch, Head of Department of Haematology, University College London
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2019 09
CHALLENGE Find out about these events at www.lymphoma-action.org.uk/fundraising-events
EVENTS
BRIDGES OF
LONDON
YOUR WALK
YOUR WAY
Sunday 12 May
Our first Bridges of London
Walk takes place the day after
our National Conference (see
page 35–36) and is the perfect
way to have a weekend
IN 2019
in London and support
Lymphoma Action.
is not timed, and it’s not a race. The atmosphere is like
Walk at your own pace across race – it’s about taking on a carnival with the streets
11 of the capital’s iconic bridges, a challenge, having fun and lined with supporters and live
finishing at Tower Bridge. raising funds for Lymphoma entertainment. Visit www.
This 9km (5.6 mile) walk is Action. lymphoma-action.org.uk/
the perfect way to see the Run
capital. You’ll be able to take The starting point is Lee
in the sites and there’s time to Valley VeloPark in the OVERSEAS CHALLENGE
stop and enjoy lunch by the Queen Elizabeth Olympic HIGH ATLAS SUMMIT
Thames. You will even receive Park, Stratford. You’ll then TREK, MOROCCO
head north-east into the
a medal for taking part!
scenic country roads of 23-28 September
This walk is suitable for Hertfordshire and Essex We’ve already recruited our
all ages, giving you an before skirting the historical community and partnership
experience to remember. It city of Cambridge. Visit manager and we’d love you to
will be rewarding, fun and www.lymphoma-action. join this rewarding challenge.
absolutely achievable. org.uk/Cycle It combines the unforgettable
Sign up at www.lymphoma scenery of the High Atlas
-action.org.uk/Bridges THE Mountains with the splendour
HACKNEY and colour of Marrakech.
PEDAL 4 CANCER HALF MARATHON The trek involves climbing
Sunday 19 May northern Africa’s tallest peak,
Sunday 8 Jebel Toubkal, standing at
September The Virgin Sport Hackney 4,167m and finishes in the
Half Marathon has marked vibrant city of Marrakech.
Get together with friends its position as one of the This is a tough challenge
and family and be part of top ten half marathons in and a good level of fitness
this special 100km (60 mile) the UK. Hackney knows is essential. Visit www.
cancer bike ride. It’s open to how to party and you too lymphoma-action.org.uk/
anyone over 14. The event can take part in this great Overseas
28
10 Lymphoma
LymphomaMatters
MattersSpring
Spring2019
2019The Hackney
Half Marathon
has a carnival
atmosphere
For further information about
any of these challenges, or to
find out about other events,
contact fundraising@lymphoma-
action.org.uk or phone Adele
on 01296 619419.
PLACES AVAILABLE NOW!
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2019 11PERSONAL
EXPERIENCE
Sausages
‘Sausage is a great
deal like life. You get out of it
what you put into it.’ Jimmy Dean
Mary explains the challenges of coping
with ‘chemo brain’ after treatment for
non-Hodgkin lymphoma good to be outdoors
without the confines of
‘Sausages’ seems an apt frightening and distressing walls, so when my husband
heading for my story as it experience. suggested walking a little
was the humble sausage that further I readily agreed. We
sparked off an incident. It all started so well. The sun walked past the old parish
was shining, I’d been out of church, over the hump-
I’d always imagined hospital for eight days since backed stone bridge and
that people with dementia my treatment and I felt along the small, overgrown
forgot huge episodes of an unexpected energy and lane that led to the museum
their life, not just simple, desire to achieve something and car park.
everyday words and from the day; ‘Let’s go for a
associations. I may of course walk’ I suggested. Reluctant to return to the
be wrong as I don’t pretend confines of my home and
to be an expert, but a recent Pleased at the thought of determined to make the
episode gave me a small some action my husband most of the day I encouraged
insight into what it must quickly agreed. We set off my husband to walk further.
be like to lose part of your towards the little village just Slowly we traversed the
memory. half a mile or so away from boundaries of the village
where we lived. It felt so and then moved
The anger and frustration
that such gaps in memory
bring was brought forcibly This is one of a series of articles written by Mary who
home to me when I recently was diagnosed with lymphoma in 2012. To read more,
experienced an extremely go to www.lymphoma-action.org.uk/Mary
12 Lymphoma Matters Spring 2019Read more personal stories at www.lymphoma-action.org.uk/Stories PERSONAL
EXPERIENCE
‘Suddenly the energy needed to carry on this
ridiculous conversation left me. I felt weak
and drained both physically and mentally.’
Luckily for me, my chemo
onwards towards the weak and drained both brain was short term,
shopping area closer to town. physically and mentally. I but I may blame it when
We were almost there when leant heavily against the I next forget my
my husband innocently nearest fence and said ‘I computer password!
asked what I wanted need to go home.’
for tea. No answer sprang
immediately to mind but Trying to make conversation,
I remembered that we’d my husband asked if I’d heard
spoken of this just a few from Linda, a friend and work
hours earlier. colleague. Once again, the
word meant nothing to me.
‘You know. I told you earlier,’ I
said. My husband tentatively ‘What’s Linda,’ I asked.
enquired, ‘Sausages?’ Feeling seriously
concerned, my husband
Nothing registered so I was gave up and talked about
A reassuring hug from
convinced that couldn’t be everyday, mundane subjects
granddaughter Poppy
correct. until we reached our house.
‘You know’ I repeated, feeling By this time, I felt
annoyed at myself for not completely exhausted. I found out the next day on
being able to remember. He lay down on the settee a visit to the Day Unit that
tried again, ‘Fishfingers?’ and slept soundly for forty this type of experience is
minutes. When I woke up I not uncommon in those
By now, unable to find any
felt really hungry. undergoing chemotherapy.
words to help him, I resorted to
In fact, there is even a name for
hand signals, sketching out two ‘Are we having sausages for it, chemo brain. This describes
parallel lines with my fingers. tea then?’ It suddenly hit a mental cloudiness (fog)
‘Stop being stupid. You know, me as I remembered those that, as in my case, can affect
those long, thin things with ridiculous conversations on memory. It can also affect
skins on.’ the way home, my frustration concentration, organisation
and anger at not being and processing speed.
Once again he tried, able to remember words
‘Sausages.’ At this point I felt or their associations. My Luckily most symptoms
really angry. I stopped walking symptoms were obviously seem to be short term. Mine
and began using my hands to only a temporary blip but how certainly was, although I may
sketch out the shape again. difficult must it be for people blame chemo brain next
who live with it every day? time I forget my computer
Suddenly the energy needed passwords or my next dental
to carry on this ridiculous In hindsight, I had probably
Mary
appointment.
conversation left me. I felt overdone things. Indeed, I
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 20 19
Lymphoma Matters Summer 2018
13
05MEDICAL
OPINION
What is...
cancer-related
cognitive impairment
or ‘chemo brain’?
Learning about
chemo brain and how
long it usually lasts may
help you cope better
with symptoms.
Picture posed by models
14 Lymphoma Matters Spring 2019Find out more about chemo brain at www.lymphoma-action.org.uk/ChemoBrain MEDICAL
OPINION
Cancer-related cognitive older people, and there are with thinking and memory
impairment is a change in natural changes in thinking before you developed cancer
thinking processes that processes throughout or started your treatment.
affects some people with your life, causing changes
cancer. The changes mainly in memory, attention and Some chemotherapy
affect memory, concentration thinking speed. While this medicines used to treat
and thinking speed. It is is a normal part of getting lymphoma could be more
also known as chemo brain older, cancer and cancer likely to cause chemo brain
or ‘chemo fog’, although treatment can make than others. These include
it doesn’t only affect this change in thinking methotrexate, carmustine,
people being treated with processes worse. It can be melphalan, fludarabine,
chemotherapy. All these hard to work out how much cytarabine and cisplatin. Most
names refer to the same thing. of the change is due to of the research is based on
getting older and how much studies in animals and it’s
Who gets chemo brain? is due to the lymphoma difficult to know whether
Chemo brain affects up to this applies to humans.
and it’s treatment
three-quarters of people
during or soon after •• you are female
you have a longer course
What causes
chemo brain?
treatment for cancer. of chemotherapy or high-
About one in five people Nobody knows exactly what
dose chemotherapy, for
with cancer might notice the causes chemo brain. It’s
example prior to a stem
effects of chemo brain before probably a combination of
cell transplant
they start any treatment
at all. The effects might be • your chemotherapy is
injected into the spinal canal
the effects of the cancer and
of the cancer treatments.
more noticeable in people These effects include
(intrathecal chemotherapy)
who also have ‘B symptoms’, inflammation and changes
or directly into an artery
ie unexplained weight loss, to the chemicals, hormones
(intra-arterial chemotherapy;
night sweats and fever. and blood flow in your brain.
this is unusual for
Some chemotherapy drugs
lymphoma)
Although it’s called chemo
brain, it can affect people
with cancer who haven’t had
• you have certain other
medical conditions, such as
can damage nerve cells
in your brain. Cancer and
chemotherapy also cause
chemotherapy, or people who anaemia, heart disease or
other issues, like anaemia
diabetes
are treated with radiotherapy.
At the moment, there is little
research on chemo brain in
• you have depression or
anxiety. Treating anxiety
or infections, that can
potentially affect thought
processes.
people treated with newer, and depression in people
targeted treatments, so we with chemo brain might Scientists think a
do not know how – or if – help reduce the effects combination of all these
of chemo brain things affect the way your
these may influence thinking.
You might be more likely to be
• you already had problems brain works when you have
affected by chemo brain if:
Scientists are studying chemo brain
• you are older – cancer
itself is more common in
to try to find out more.
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters
Lymphoma Winter
Matters 2018/19
Spring 2019 19
15MEDICAL
OPINION
cancer or cancer treatment. Complex thinking treating them may help the
They’re studying chemo processes – thought symptoms of chemo brain.
brain in more detail to try to processes you normally
find out more. find easy, such as making Information – learning
shopping lists, doing puzzles about the condition and
What are the signs of or adding up numbers in how long it usually lasts may
chemo brain and how your head, might seem help you cope better with
might it affect me? harder or slower. It can also symptoms.
Chemo brain can cause be hard to swap between Exercise – physical exercise
changes to your memory, tasks if you’re doing more is good for the brain. It doesn’t
concentration, attention than one thing at a time. have to be too energetic;
span and complex thinking It might take you longer short, gentle exercise such as
processes. than usual to take in new walking is enough to improve
information or learn the symptoms of chemo brain.
Chemo brain affects different
new things. It also helps to relieve other
people in varying ways.
The effects are usually Emotional effects conditions that make chemo
mild and generally get – you may be brain worse (for example,
better over time. The embarrassed that depression and anxiety).
symptoms can vary The effects of you can’t do things
chemo brain are Talking therapy – your
from day-to-day, at usually mild and the way you used
different times of medical team might be able
generally get better to or worry that
day and, if you’re 6-24 months to refer you for specialist
friends, family and
after finishing help, such as cognitive
on treatment, at treatment. colleagues might
different times in (talking) therapy.
notice the change
your treatment cycle. in you. Memory clinics – some
They are usually worse centres provide memory
when you’re tired or busy. How is chemo
clinics offering information,
brain treated?
Memory – You might assessment and treatment
Don’t be afraid to tell your
notice that your memory advice for people affected
doctor or nurse. They will
isn’t as good as it was. You by chemo brain.
understand how you’re
might forget people’s names, feeling and can offer advice How long does
misplace things or struggle and support. There are chemo brain last?
to find the word you want several things that can For some people, the
to use. help with the symptoms of effects of chemo brain only
chemo brain including: last a few weeks. Most
Concentration and
attention span – some people get better between
Treating underlying
people feel ‘spaced out’ and 6 months and 2 years
illness – your team will
find it hard to focus on what after finishing treatment.
check for any conditions
they’re doing. This can make However, about a third of
that might be making your
everyday things difficult, people have symptoms that
symptoms worse, such
like following a conversation last longer, sometimes for
as anaemia, infections,
or television programme or many years.
depression or anxiety. All
reading a book. these are treatable, and
16 Lymphoma Matters Spring 2019Find out more about chemo brain at www.lymphoma-action.org.uk/ChemoBrain MEDICAL
OPINION
Keep a diary
or use a calendar to
write down hospital
What can I do to cope with appointments,
birthdays, bills
the effects of ‘chemo brain’? to be paid.
• Pace yourself and try to
be organised – plan your
healthy diet and try to get
some exercise every day, affected by chemo brain
day, don’t take on too even if it’s just a short walk. are no more likely than
much, try to avoid multi-
tasking and put important
things, like your phone,
• Keep your mind active by
doing crossword puzzles,
anybody else to get
dementia in later life.
keys or glasses, in one computer games etc. Are there any
place every time when
you put them down. • Consider telling your family,
friends and work colleagues
medicines to treat
chemo brain?
• Write things down – keep
a diary or use a calendar
that your thinking processes
have been affected to help
At the moment, there
isn’t enough scientific
evidence to decide which
to write down hospital them understand how they
can support you. medicines could be
appointments, birthdays, helpful for chemo brain.
bills to be paid etc. Use Does having chemo brain However, research is going
‘to do’ lists.
mean I’ll get dementia? on all the time and we
• Reduce stress – relaxation
techniques, mindfulness,
To the best of our knowledge,
people who have been
are hoping for stronger
evidence soon.
meditation or yoga can
help. With thanks to Jane Gibson, Lymphoma Nurse
• Keep as physically healthy
as possible – try to have a
Clinician, The Christie NHS Foundation Trust, for
reviewing this article.
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters
Lymphoma Winter
Matters 2018/19
Spring 2019 19
17FUNDRAISING
MEET
Community THE
TEAM
fundraising Our Community
Fundraising team woul
be delighted to hear
d
Our Community Fundraising team are here to
help groups with their fundraising activities. from you. Contact:
Amanda in the South
As a community fundraiser sports clubs, amateur dramatic East
at a.minett@lymphom
this area of fundraising is groups, small local businesses - a-
action.org.uk
particularly exciting as we any group that comes
never know what we will be together to fundraise. Jane in the North Wes
t
supporting you with next! Whatever activity you plan, at j.pinder@lymphom
a-
We work with schools, we are here to support you! action.org.uk
Sarah, based in Aylesbu
ry,
who supports commun
Look out for free themed packs
ity
groups and businesses
across the rest of the
To help with your fundraising activities, we create themed UK
at s.thorn@lymphoma-
packs. For example, for Easter there will be a pack full of fun action.org.uk
ideas for adults and children. Look out for them at
www.lymphoma-action.org.uk/Community
Put a date in your
diary to hold a
Did you know? fundraising event
Community fundraising contributes between 15 to 20 We have lots of activitie
percent of our annual income? That’s why we need you to s
planned for 2019 and ho
join in and support us, and have fun at the same time! pe
that some of them wi
ll
inspire you to fundraise
18 Lymphoma Matters Spring 2019 for us.Read more about CLL at www.lymphoma-action.org.uk/Community
FUNDRAISING
MARCH APRIL
Quiz month Easter egg hunt
Why not hold a charity quiz night? We’d love everyone to get involved
Our free quiz pack has all you
in our Easter egg hunt.
need - six rounds of questions, Whether it’s with school, work or
venue and promotion family our easy-to-do Easter egg hunt
tips and additional will get everyone involved. Go to
fundraising ideas www.lymphoma-action.org.uk/Easter
www.lymphoma-action. to download your free pack.
org.uk/Quiz
Also look out for Lori the Lymphoma
Alternatively, get your Action lamb on social media and try to
local pub involved in guess where she’s been hiding the eggs!
the world’s biggest pub
quiz from 3–7 March
2019. Search PubAid for
quizzes and promotional
materials.
MAY JUNE
Spring into Action Lunch for lymphoma
Did you know that May is Enjoy the start of summer with a BBQ,
National Walking Month? picnic or garden party for your family
and friends.
Take the opportunity to get some fresh
air and organise your own sponsored Simply charge a small price
walk with a group, or try walking to or have a raffle and donate
work for the month. the proceeds
to Lymphoma
It’s Walk to School Week 20-24
Action. For lots
May, so no excuse for the kids – get
of ideas and great
them involved too!
recipes, go to our
website in May
and download
your free lunch
for lymphoma pack.
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters
Lymphoma Winter
Matters 2018/19
Spring 2019 19PERSONAL
EXPERIENCE
Stuart talks about
his experience of
Hodgkin lymphoma
A happy ending
The first time I thought wife called the doctor out and and leg. I went up to A&E and
something was wrong was he immediately phoned for they did a CT scan. A tumour,
just after my 27th birthday an ambulance to take me to about the size of a grape,
in August 2015, when I had hospital. was found in my brain, close
a persistent cough. I have to my skull. The doctor was
I had a bone marrow
asthma, but the inhaler baffled because it is very rare
aspiration and they biopsied
wasn’t helping. Generally for Hodgkin lymphoma to go
my neck. A couple of weeks
I am very fit and work to the brain. They also didn’t
later I was diagnosed with
out and cycle, so couldn’t expect it after I reacted so well
Hodgkin lymphoma.
understand why I was to the chemotherapy.
struggling so much. I initially had six months
of chemotherapy and it I needed surgery to remove
I went to my GP who sent looked as though I was going the tumour and after the
me for an X-ray. When the into remission from the operation they said they
results came back with lymphoma. But two weeks were confident that they
queries, further tests were later my young son was lying had removed it all, but felt I
organised. I had a CT and on me and I felt pain as if I needed radiotherapy just to
then a PET scan, followed by had a trapped nerve. The pain make sure. I needed to have a
blood tests. The results of the got worse and I started to face mask made and decided
tests indicated that I needed lose feeling in my right arm I wouldn’t let this phase me. I
to see a haematologist. The
morning of my appointment
I woke up very delirious and I struggled with peripheral neuropathy on my
didn’t know where I was. My hands and feet, but found ways to help with this.
20 Lymphoma Matters Spring 2019Find out more about Hodgkin lymphoma at www.lymphoma-action.org.uk/Hodgkin PERSONAL
EXPERIENCE
had twenty treatments over a four week period and felt I coped well.
For a second time, I was given the ‘all clear’ and went back to work
in September 2016. I was looking forward to getting back to ‘normal’
and went on a two-week holiday. But by October 2016 I was off work
again. The lymphoma had come back.
Because it had come back so quickly, my medical team explained In March 2019
that a transplant now needed to be considered. So over the I will be 2 years clear
Christmas period of 2016 I was given ICE chemotherapy as and touch wood,
conditioning treatment for an autologous stem cell transplant, using everything is good.
my own stem cells. A PET scan showed that the ICE chemotherapy
had worked and I had my stem cells harvested in March 2017.
On 24 March, my stem cells were returned to my body. I can honestly
say, that the next two weeks were the worst in my life. Despite
being in an isolation room with two doors that people needed to go
through, I picked up every infection, had diarrhoea and flu and during
the two weeks I struggled to eat or drink anything. My medical team
explained that once my white cell count came up I would feel
better, but at the time I couldn’t believe that I would ever
be better. I felt like giving up at that point.
But within three days of my white cell count lifting, I could feel a
real turn around and started to eat and drink again. Within a
week I was able to go home, but that was just the start of I feel sad that I have
my recovery and it took me nearly a year before I was missed out on so much time
able to return to work. with my five-year-old son.
Once I got out of hospital the first two months were a After my treatment we weren’t
real struggle. I didn’t have any energy or stamina and sure that we would be able
found it hard to get up the stairs to our flat, or play to have any other children.
with my son. Also my immune system was terrible so But I am delighted that on 16
I found that I picked up anything that was going. I have December 2018, Quinn, our
struggled with peripheral neuropathy (PN) on my hands beautiful baby daughter
and feet. I have found ways to help with this, like using was born through IVF.
thermal socks and using a heat pack on my hands.
I work for a supermarket and had a long phased return to work,
which has been helpful. The neuropathy has proven to be one of
the biggest challenges, especially when I have to work with chilled
food. I also find that I pick up infections such as colds much more
quickly, which isn’t great when you work with the general public. My
company has been excellent and understanding during my whole
treatment and recovery. They didn’t pressure me to come back and
let me recover at my body’s pace and were very welcoming when
I returned. In March 2019 I will be two years clear and touch wood,
S tuart
everything is good.
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2019 21MEDICAL
OPINION
Dr Anna Ridding discusses
What is a normal
response to a
cancer diagnosis?
Picture posed by model
There is no straightforward answer to Around 60% of people
experience anxiety after
‘What is a normal response to a cancer the diagnosis of a serious
diagnosis?’ It depends on so many illness. There are numerous
factors at play here including
different factors. how the diagnosis is
perceived as a threat to your
To start with, you need prognosis. Whether they
identity, personal, family
to consider personality. are due to start treatment
and professional life. Such
Whether a person is laidback straightaway, whether they
diagnoses can have an impact
know others who have had
or anxious, may determine on your ability to function,
cancer, and experiences
their response to the news. work, and thus finances,
they have heard about can
and your relationships. That
also contribute.
If a person has always been a impact may depend on
worrier, the news is likely to Being given a diagnosis of where you are in your life,
add to their anxiety. Other lymphoma is an abnormal for example whether you are
factors are also important, situation and whatever working, if you have a young
for example how the news your response is will be family or are taking care of
was communicated, what normal for you. There is elderly parents. All of these
they understand about only one way to deal with factors (and more!) will affect
their type of cancer and your lymphoma, and that is how you come to terms with
the possible outcome or your way. a lymphoma diagnosis.
22 Lymphoma Matters Spring 2019Read more about the emotional impact of lymphoma at www.lymphoma-action.org.uk/Emotional MEDICAL
OPINION
Your anxiety may have increased over the months prior to your
diagnosis. You may have suspected another illness, and your
lymphoma has been picked up by chance. You may have been ill
for some time and it has taken a while to get a diagnosis. You may
have had several tests and a biopsy, and you will have had to wait
for the results of these. In addition, many people know little
about lymphoma, so as well as coming to terms with the
disease yourself, you may have to explain what it means Identify what
to others. There is a lot to take in all at once. helps and do
Some people facing a diagnosis of lymphoma are told they will more of it!
receive no treatment initially, but are placed on active monitoring
or watch and wait for some time. This can be anxiety-provoking
and relies on an understanding of this approach. There may also
be uncertainty about the future, in particular about being able
to plan things as you do not know when treatment may start.
Dr Ridding had some tips and strategies for
coping with a diagnosis of lymphoma:
• Consider what is working and what is not working in your
life. Consider what you do that makes you more worried –
identifying that could be helpful to allow you to try to
avoid or reduce it. Don’t be afraid to change things if
they are not working for you.
• Although the current situation understandably seems
awful, consider all the aspects of your life that are good People in the UK
or ‘good enough’ – your relationships with your partner, are not very good
your family, your colleagues. at saying how they
• Think of what you have achieved so far and focus on what
strengths you have. Focus on how you have overcome and dealt
feel, but it can be
enormously
with other difficult life experiences. What do you do that helps helpful.
you get through? Identify what helps and do more of it – whether
it is seeing friends or family, relaxation and mindfulness, support
groups, going out, regular exercise – DO MORE OF IT!
• Say how you feel. People in this country are not very good at speaking
about their feelings, but it can be enormously helpful for you and
those around you. It is OK to express how you feel. With thanks
•
to Dr Anna Ridding,
We are very good at giving advice, but not so good at receiving it. Principal Clinical
Think about the advice you might give to a loved one, friend or Psychologist,
colleague if they were in your situation. Then try and take heed Lancashire
Teaching Hospitals
of this advice. NHS Foundation
Trust.
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters
Lymphoma Winter
Matters 2018/19
Spring 2019 23
19PERSONAL
EXPERIENCE
A love of Scottish Railway systems
and helping others
through lymphoma
Forbes Alexander is just one of the people His brother, Greg, says the
who has made a difference to the work of treatment was miraculous
and goes on to say: ‘Once in
Lymphoma Action through his estate. remission, Forbes returned
to work as a town planner
More of us are making a close to your heart are and continued to pursue his
difference to the charities remembered and provided unusual hobby of researching
we love by making sure for as you would have and visiting Scottish
they receive something wished. railway signalling systems,
after we have died. The a hobby that had led him
reality is that many of our We at Lymphoma Action to publishing a book on the
favourite charities couldn’t are so grateful to have subject in 1990. However, the
exist without people benefitted from Forbes lymphoma and its treatment
remembering them in Alexanders’ estate. Forbes took its toll on Forbes and he
their wills. was diagnosed with non- opted for early retirement.
Hodgkin lymphoma in the
It is important not to put mid-1990s. He was one of ‘Because of his own
off something as important the first people in Scotland experience of lymphoma he
as drafting your will as this to be offered a stem cell was passionate about raising
is the only way to ensure treatment using his own awareness of the symptoms
that the people and causes stem cells. of lymphoma, and believed
24 Lymphoma Matters Spring 2019Find out more at www.lymphoma-action.org.uk/Legacies
LEGACY
The legal bit
Did you know that there are three
Forbes was a remarkable main types of gifts you can leave to
man, he was always cheerful charity in your will?
and kept his sense of humour, Pecuniary Gift
This is a gift of a fixed sum of money
always laughing! like £500. You can ask your solicitor to
‘index link’ such gifts if you would like
to preserve their value.
Specific Gift
that access to This is a gift of an item, like jewellery,
information and a house or investment shares.
support was essential.
That’s why it was so Residuary Gift
important that after his Once everything has been distributed
death, money from his estate from your estate and all debts paid,
went to Lymphoma Action. you can leave all or a percentage of
the residue to charity.
‘Unfortunately my brother did not
manage to update his will to include a gift To leave a legacy you must have a
to Lymphoma Action. So as a family we properly written and witnessed will,
decided to honour his wish by making the usually involving a solicitor. Having
gift from his estate. I guess this is a good an up-to-date will is the only way to
reason for urging people to make or update make sure that your loved ones and any
their wills when they can. As a family we are charities or organisations you care about
extremely proud that through the work of are provided for after your death.
Lymphoma Action, Forbes is helping alleviate
Legacies don’t have to be big, whatever
stress and worry for other people with
the size of your legacy, it will make a
lymphoma.’
difference and help us to be there for
Lymphoma Action are extremely someone affected by lymphoma.
grateful to Forbes and to his family
for honouring his wish to make a
difference for others affected by
lymphoma.
Did you know?
Each year income received from There is lots of information on this for
legacies makes a real difference to the England and Wales on www.gov.uk and
services we can deliver. By leaving a legacy to find a solicitor in your area, please
to us, the love and kindness of all our visit The Law Society website at
legacy donors lives on through the work we www.lawsociety.org.uk
do, ensuring that nobody has to face their
lymphoma alone.
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2019 25CLINICAL
TRIALS
Clinical trials:
answering questions
about lymphoma
Lymphoma Action
were delighted to be
involved with the UK
lymphoma clinical studies
The UK lymphoma clinical studies group is a group meeting and gain
further insights into the
dynamic and active group of clinicians who work direction of lymphoma
together to develop and deliver a programme in the UK.
of research that helps to drive forward
improvements in lymphoma treatment and care.
The group holds an annual This report focuses on some lymphoma cells are important
meeting in November, which of the key themes from the in making them cancerous
provides a forum for these meeting. and how this information can
experts in the field to give be used to target the right
updates on current clinical High-grade non- treatment to each person’s
trials and discuss proposals Hodgkin lymphoma lymphoma.
for new trials.
Diffuse large B-cell It is increasingly clear that
Lymphoma Action were lymphoma (DLBCL) certain treatments work better
delighted to be involved with Much progress is being made for different types of DLBCL.
the UK lymphoma clinical in unpicking the biology of Recent trials testing targeted
studies group meeting and diffuse large B-cell lymphoma drugs such as bortezomib and
gain further insights into (DLBCL). Work continues to ibrutinib in combination with
the direction of lymphoma find out which mutations the standard treatment of
research in the UK. (changes in the genes) in R-CHOP chemo-immunotherapy
26 Lymphoma Matters Spring 2019Find out more about some of the new treatments mentioned at
www.lymphoma-action.org.uk/TargetedDrugs CLINICAL
TRIALS
Trials testing new treatments are a key part of has the potential to cause
research for high-grade non-Hodgkin lymphoma, but serious problems, such as
research studies can provide important insights about second cancers many years
these types of lymphoma that can help clinicians target after treatment. However,
the right treatment to each person. omitting it might risk
the lymphoma not being
(chemotherapy with polatuzumab vedotin and cleared completely.
antibody therapy) have not
shown improvements in
checkpoint inhibitors, which
work by helping the immune
system recognise and attack
• IELSG 42 was testing a new
treatment plan for people
outcomes for people with
the lymphoma. with secondary central
DLBCL overall. However,
nervous system (CNS)
people with DLBCL that has
T-cell lymphoma lymphoma – DLBCL in the
certain mutations could
T-cell lymphoma remains CNS (brain and spinal cord)
benefit from bortezomib,
challenging to treat, but as well as in other parts
and people under 65 did
trials are continuing to test of the body. Lymphoma
much better with the
new treatments, particularly in the CNS is rare and can
addition of ibrutinib than
for people with relapsed be difficult to treat, so the
people over 65. Future
or refractory lymphoma. results of this trial could be
clinical trials might explore
New treatments under very important.
these differences further.
The results of these trials are
investigation include
checkpoint inhibitors, CAR
T-cell therapy and two
• Trials adding polatuzumab
vedotin to bendamustine
also shaping ongoing clinical
newer drugs that are being and rituximab for relapsed
trials. As adding ibrutinib to
tested in combination in the and refractory DLBCL have
R-CHOP caused more side
ROMICAR trial: romidepsin shown promising results,
effects for people over 65,
and carfilzomib. and longer-term results
then another trial testing a
are awaited. Polatuzumab
similar drug (acalabrutinib)
will no longer recruit people
Watch this space vedotin comprises an
antibody together with
over 65 until we have The results of the following a chemotherapy drug,
time to understand these trials in high-grade NHL are so the antibody can take
findings better. People over expected to be practice- the drug directly to the
65 who are currently on the changing: lymphoma cells. This kills
ACCEPT trial will be given
the option to leave the
trial and receive standard
• The IELSG 37 trial is testing
whether radiotherapy
the lymphoma cells but
minimises effects on other
can safely be omitted parts of the body.
treatment or continue and
have more preventative in people with primary Observational studies
treatment against infections. mediastinal large B-cell
Acalabrutinib may have a lymphoma whose PET scan Trials testing new treatments
better side effect profile shows their lymphoma has are a key part of research for
than ibrutinib. responded well to standard high-grade (fast-growing)
chemo-immunotherapy. non-Hodgkin lymphoma
Other drugs being tested in This is an important (NHL), but research studies
DLBCL include lenalidomide, question as radiotherapy can provide important
LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2019 27CLINICAL Find out if you can get involved in an observational study at
TRIALS
insights about these types questions about includes chemotherapy
of lymphoma that can help maintenance treatment and a stem cell transplant.
clinicians target the right for follicular lymphoma. The Triangle trial will test
treatment to each It aims to find out if whether these people do as
person. people who have well without a transplant,
Several ongoing a good response potentially reducing toxicity.
Research studies clinical trials in to their initial
collect samples LGNHL are likely treatment need There are distinct types of
and information to be practice- a maintenance mantle cell lymphoma that
about each changing. antibody grow slowly (indolent type)
person’s treatment, and also or fast (aggressive type), but
lymphoma that to see if intensifying it is not currently possible to
can tell researchers more maintenance by adding predict how each person’s
about the biology of the another drug (lenalidomide) mantle cell lymphoma will
lymphoma cells, which helps can improve outcomes behave. The MCL Biobank
them work out how to get rid in those who didn’t study is collecting samples
of the lymphoma. respond well to their from people with mantle cell
initial treatment. lymphoma with the aim of
Ongoing observational identifying features that will
studies collecting samples Mantle cell lymphoma allow clinicians to determine
or data from people with Most people diagnosed with if a person’s mantle cell
mantle cell lymphoma, mantle cell lymphoma are lymphoma needs treatment
teenagers and young people over 60 and many are less straightaway or can be
with non-Hodgkin lymphoma, able to tolerate standard actively monitored for a
DLBCL and skin lymphomas treatment. Targeted drugs are time. So far, more people
have already produced lots transforming the prognosis have the indolent type than
of samples that can further for older people with mantle expected, with around 3 in
our understanding of these cell lymphoma. ENRICH is 10 people in the study not
diseases. the first trial to test a first- needing treatment for more
Low-grade non- line treatment for mantle than a year after they were
Hodgkin lymphoma cell lymphoma that does enrolled in the study.
not involve chemotherapy.
Several ongoing clinical trials The drugs being tested are Waldenström’s
for people with low-grade rituximab and ibrutinib, and macroglobulinaemia
(slow-growing) non-Hodgkin interim results of the study Targeted drugs such as
lymphoma are likely to be are expected in 2019. ibrutinib are now widely
practice-changing. used and very effective for
Standard treatment for people with Waldenström’s
Follicular lymphoma younger, fitter people with macroglobbulinaemia. Trials
PETReA is answering mantle cell lymphoma continue to explore whether
ibrutinib can be used in
Maintenance treatment, such as rituximab, aims combination with other drugs
to keep your lymphoma under control for longer and as a first-line treatment
by mopping up any lymphoma cells remaining for people with WM.
after your main treatment.
28 Lymphoma Matters Spring 2019You can also read
