Leukaemia
Matters AUTUMN EDITION 2019
Roman Reigns: WWE, CML and me The big interview Page 12
www.leukaemiacare.org.uk In This Issue
4 Spot Leukaemia 12 Roman Reigns 17 Radio 4 Appeal
18 Leah Arora 24 Chemo brain 26 Clinical trials
Hello, Welcome to the Autumn issue of our magazine! This bumper issue coincides with Blood Cancer Awareness Month and our Spot Leukaemia campaign. Throughout September, we’ll be encouraging the general public and health professionals to raise awareness of the signs and symptoms of leukaemia. On page four, you can find out more about the campaign and how you can get involved. I’m also looking forward to welcoming many of you at our Spot Leukaemia reception at the Houses of Parliament. The reception will bring together a wide range of stakeholders who are working to support patients with blood cancers, as well as patients and families who have been supporting Leukaemia Care’s campaign. Also inside this issue, you can read our exclusive interview with WWE (World Wrestling Entertainment) superstar Roman Reigns, who announced last year that he was receiving treatment for chronic myeloid leukaemia (CML). You’ll also find an article on how to spot the common symptoms of leukaemia.
See you next time!
Christopher Matthews-Maxwell Chairman
Keep up with the latest news and patient stories online. You can find us at: www.leukaemiacare.org.uk
/LeukaemiaCare /leukaemiacareuk /LeukaemiaCareUK Patient Services News Catch up on the latest news from our Patient Services team.
Buddy scheme expansion learning. Health Week. Could you be a buddy? Or are you If this sounds like you, get in Listen to them on Spotify, looking for one? touch with our Engagement iTunes, Soundcloud or Officer, Nickey Bate, at nickey. CastBox here: http://bit.ly/ Our acute leukaemia buddy [email protected], or BloodstreamPodcast, or just scheme is looking for acute call 08088 010 444. search for ‘Leukaemia Chatters’ on leukaemia patients who would your podcast provider. like to be matched with one of our Book now for our patient trained buddies. information days We also have brand new buddy Missed out on our previous schemes looking for buddies: information days? • Polycythaemia vera (PV) buddy Throughout 2019 and 2020, scheme we’ll be taking our info days to even more places across the UK, • Essential thrombocythaemia including: (ET) buddy scheme • London • Myelodysplastic syndromes (MDS) buddy scheme • Cardiff • Carer buddy scheme • Birmingham If you’re interested in becoming a • Glasgow buddy, or you’d like to be matched with one, get in touch with our Book your free place here: http:// Buddy Coordinator, Kay Drew, on bit.ly/PatientInformationDays, or [email protected] call the team on 08088 010 444. or call 08088 010 444. For more information, you can Listen up! Get stuck into our contact the team on 08088 Interested in being a patient podcasts 010 444, or email support@ speaker? Our podcasts are a great way to leukaemiacare.org.uk. You can also find all our support Would you be interested in learn more about topics affecting you, as well as hear stories from groups on our website at www. becoming a patient speaker at one leukaemiacare.org.uk. of our patient information days or others affected by blood cancer. GP conferences? We’re looking for Most recently, we’ve discussed patients who want to share their CAR-T therapy, along with men’s story as a way to support other healthcare issues as part of Men’s patients, or to help GPs with their
Leukaemia Care 2019. Reproduction in any matter, in whole or in part is strictly prohibited without express permission from Leukaemia Care. The views expressed in this publication do not necessarily represent the views of Leukaemia Care. Whilst all due care is taken regarding the accuracy of information, no responsibility can be accepted for errors. Any advice given does not constitute a legal opinion. The printing of any advertisement in Leukaemia Matters does not necessarily mean that Leukaemia Care endorses the company, product or service advertised. Registered Charity No. 259483, Scottish No. SC039207 3 SPOT LEUKAEMIA Go spotty for Spot Leukaemia September is Blood Cancer Awareness Month, and this year at Leukaemia Care the Spot Leukaemia campaign has returned to raise awareness of the symptoms of leukaemia. Find out how you can get involved.
Help to shine a ‘spot’light on out for in case you or a family Throughout September, we leukaemia member presents any of the six will be posting over 30 patient main symptoms of leukaemia. stories like Kerri’s on our website Blood Cancer Awareness Month and various social media was kicked off with a number Other free Spot Leukaemia platforms. Share them with of buildings across the UK merchandise includes friends and family to improve lighting up red for us. Over 60 pin badges, wristbands, understanding of leukaemia, different buildings or landmarks window stickers, trolley how it presents and who it will be lighting up throughout keyrings and more. To order affects. September to show their our free Spot Leukaemia support and act as a beacon to merchandise, visit http://bit.ly/ Organise a spotty fundraiser improve public understanding of SpotLeukaemiaMerch leukaemia and its symptoms. To show your support this Share our patient stories on month, why not hold a spotty If you see any of the buildings social media! fundraising event with lit up, don’t forget to post your your family, friends or work photos on social media by using In August, Kerri Hannay, who was colleagues? the hashtags #SpotLeukaemia diagnosed with acute myeloid and #Spotlight. Find out more on leukaemia (AML) in 2017, kicked From spotty cake sales to spotty page 8. off our campaign with a feature dress-up days, there are loads on the MailOnline. Kerri was Order your free Spot Leukaemia of ways you could get involved. diagnosed with AML when she magnet For more information or to order was 28 weeks pregnant but a Spot Leukaemia fundraising Our Spot Leukaemia magnets decided to delay her treatment pack, go to http://bit.ly/ are free and can be ordered until she was at least 32 weeks, SpottyFundraisingPack. online to place on your fridge, so her son, James, could be born a tiny reminder of what to look via c-section.
4 www.leukaemiacare.org.uk 50TH YEAR Leukaemia Care’s Milestones To mark Leukaemia Care’s 50th anniversary in September, Leukaemia Matters takes a look at the charity’s expansion from a small support group into a national charity. 11th September 1969 1970s – – "The Leukaemia Care Caravan Society" is registered service is as a charity to support launched. children and parents affected by leukaemia.
1980s – The charity’s scope is changed to include care for all ages. 1992 – The Care Line is introduced.
1996 – The charity 1997 – Leukaemia Care moves from is relaunched as Exeter to Worcester, Shrubbery Avenue. Leukaemia Care. 1999 – First Mascot, Windy Miller, arrives. 2005 – Leukaemia Care moves to new Worcester headquarters, opened by Gary Lineker.
2005 – First patient advocacy role. 2006 – First patient conference at Kingsway Hall Hotel, London. 2008 – First Leukaemia Care nurse is launched.
Helpline freephone 08088 010 444 5 2017 – Buddy 2016 – Launch of nurse bursary scheme. scheme is launched.
2016 – The Spot Leukaemia campaign is launched for the first time.
11th September 2019 – Leukaemia Care celebrates its 50th anniversary.
2018 – Nurse academy is launched.
2018 – Leukaemia Care hosts its first GP training event.
Celebrating 50 years of support
In 50 years, Leukaemia Care The seven families who set Leukaemia Care, as we know has transformed from a local up Leukaemia Care in Holland it today, has built on this support group for parents Park, London, during 1969 foundation over the last 50 of children with leukaemia, had two things in common – years and now offers invaluable to a national organisation children with leukaemia, and a support to anyone affected by a that reaches out to all those determination to do something blood cancer, whether they are affected by any blood cancer about the lack of information patients, families or carers. type. and support available to them.
6 www.leukaemiacare.org.uk 50TH YEAR
Because treatments for important part of the work that If you would like to fundraise blood cancer are constantly we do. We have also made great for our birthday, get in touch improving, more people than progress recently in training with our fundraising team at ever before are surviving primary healthcare providers fundraising@leukaemiacare. leukaemia, (whether they are about the signs and symptoms org.uk for some friendly advice cured or managing the disease of leukaemia and how to spot and support. as a chronic condition), and as it, meaning patients can be the rates of leukaemia increase diagnosed sooner and have a Facebook birthday fundraiser due to an aging population, better chance of survival. Facebook fundraising is the support that Leukaemia Can you support us on our another great way to support Care provides during and after Leukaemia Care. treatment has never been so birthday? important. According to official Your kind donations over 50 Ask your friends on Facebook figures, currently over 33,000 years of the charity’s history for a donation instead of new cases of blood cancer have enabled us to deliver receiving a present. Whether it’s are diagnosed on an annual these important services to a milestone birthday, like 30, basis, making it the fifth most those in need. Perhaps you are 60 or 29 (for the second time), common type of cancer in the interested in raising funds for donations in lieu of presents UK. us on our birthday, to ensure are an easy way to help support those affected by a blood We think that what makes that we can celebrate many more to come! cancer diagnosis. Donate on Leukaemia Care special is your birthday for our birthday. that, after 50 years, we have Retro fundraising strived to retain our caring Head to facebook.com/fund/ ethos and continue to develop You might fancy hosting a LeukaemiaCare/ to set up your and expand our services, vintage bake sale, buffet or Facebook birthday fundraiser ensuring that we can reach as office dress-up day to help raise today! many people affected by blood funds. To offer some inspiration, cancer as possible. In the past the Leukaemia Care office team PICTURE (BELOW): LEUKAEMIA few decades, campaigning went retro last month with a CARE STAFF GO RETRO FOR OUR on behalf of patients and decades buffet and fancy dress 50TH YEAR their carers has become an day!
Helpline freephone 08088 010 444 7 SPOT LEUKAEMIA Shining a spotlight on leukaemia
Leukaemia Care’s • Dumfries Council Building • Parkinson Building, Leeds #SpotLeukaemia campaign has University received a glowing endorsement • Folkestone Civic Centre • Penshaw Monument across the UK and now over 60 • Foryd Bridge, Rhyl buildings and iconic places are • Perth and Kinross Council set to have a red hue to raise • Fulwell Mill awareness of leukaemia. • Phoenix House, Newport • Grand Central, Birmingham Locations that have chosen to • Regent Theatre, Stoke light up in aid of Leukaemia Care • Guildhall, Portsmouth include: • Royal Spa Centre, • Hanley Town Hall Leamington • 02 centre London • High Street West, • Seaburn Lighthouse • ACC Arena Liverpool Sunderland • Sky Tower, Rhyl • Accrington Town Hall • John Lewis Car Park, Milton Keynes • Southampton Guildhall • Ada Lovelace House • Keel Square, Sunderland • Southend-on-Sea Civic • All Saints Church, Hemsley Centre • Kidderminster Town Hall • Bangor Town Hall • St. James Concert Hall • Lady Godiva Statue, Coventry • Belfast City Hall • St. Peter’s Church, • Liverpool Town Hall Portishead • Berwick Royal Border Bridge • Lytham Windmill • Steve Prescott Bridge • Blackpool Tower • M-Shed, Bristol • Grafton Centre • Blackwood Miners’ Institute • Manchester Town Hall • The Stag, Uni. of Surrey • Bridport Town Hall Clock Face • Marine Hall, Lancashire • Titan Crane, Clydebank
• Buttermarket Shopping • Market Square, Sunderland • University of Worcester Centre • McKee Clock, Bangor (NI) arena
• Civic Centre, Newcastle • Newry Town Hall • Wakefield clock tower
• Crosby Library • North Lincolnshire Council • Whiterose shopping centre
• Darlington Hippodrome • Northern Spire Bridge • Worcester Guild Hall
• Derry Council Building • Norwich City Hall •
• Douglas Town Hall • •
8 www.leukaemiacare.org.uk FIND YOUR NEAREST ‘SPOT’LIGHT LOCATION BY VISITING OUR ONLINE INTERACTIVE MAP AT WWW. SPOTLEUKAEMIA.ORG.UK
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Helpline freephone 08088 010 444 9 CAMPAIGNS CORNER Campaigns Corner
It’s Blood Cancer Awareness consultation about patient combination will be examined Month, and we’re raising involvement in their work. The for evidence has not yet been awareness of the signs and drug appraisal process can decided. Most approved uses of symptoms of leukaemia be long and technical, but we venetoclax are in patients who through our #SpotLeukaemia strongly believe that patients have relapsed after treatment campaign. You can read more should be represented at every or in those who are untreated information on the campaign stage of the process in order to but can’t have chemotherapy. on page 4; a big thank you to all make sure the best drugs for Venetoclax has been a hot topic the patients who have helped patients are available on the in the CLL world for some time, us develop this year’s campaign NHS. We also believe patients because it is a targeted, non- so far. and those that represent chemotherapeutic treatment them should be able to have and only needs to be taken for Potential changes to the drug an impact (i.e. influence the two years. appraisal process decision-making process), not simply just be invited to be Do you have experience of The National Institute for involved. We have responded to leukaemia treatments that Health and Care Excellence the survey to reflect this. you would like to share? (NICE), who are responsible for Get in touch at advocacy@ approving drugs for use on the Drug updates leukaemiacare.org.uk or call NHS, are currently reviewing 08088 010 444 to find out more several aspects of their work. In news about specific drugs, about helping the team. One thing they are considering NICE have begun an appraisal is how to use more "real world" of ropeginterferon alfa-2b, Campaigns news data, such as surveys, in their for polycythaemia vera (PV) appraisal process. The current patients without symptomatic In addition to the public process relies heavily on the splenomegaly. Interferons awareness portion of our Spot data from clinical trials, which are a type of enzyme that is Leukaemia campaign, we are don’t necessarily accurately made naturally by the immune pleased to announce that capture things that are system, released when the our GP training is back in full important to patients, such as immune system detects things swing from September. Our changes in their quality of life like virus infected cells or next in-person education event, after treatments. Leukaemia cancerous cells. The interferons covering diagnosing leukaemia Care use our annual patient then recruit immune system as well as supporting those survey, "Living with Leukaemia", cells to kill the bad cells. living with leukaemia long term, regularly in the drug appraisal Interferons have been used is being held in the North West. process to demonstrate the to treat blood cancers, and a To sign up and for more details, patient views on new treatment few other cancers and viruses, please go to leukaemiacare.org. options. Therefore, we are for many years, but this is the uk. pleased NICE are considering first one designed to treat a giving this sort of data more myeloproliferative neoplasm We are also pleased to prominence in the process, (MPN), which are a group of rare announce that new online GP and we will be giving NICE our blood cancers that includes PV. training courses about CLL and thoughts on this. CML, created by Gateway-C and NICE has also begun to appraise supported by Leukaemia Care, NICE are also conducting a venetoclax with obinutuzumab are now available online. They survey, which asks for opinions for untreated chronic are free to take, with acute about how well NICE engage lymphocytic leukaemia (CLL) leukaemia modules coming with patients and patient patients; the exact population soon. You can find these along organisations, as part of a wider of patients in whom this with our current RCGP training
10 www.leukaemiacare.org.uk modules at http://bit.ly/ the health technology appraisal held in conjunction with the TrainingForGPs. process; some included International Workshop on CLL patients themselves. (IWCLL), a scientific conference The team are out and about also being held in Edinburgh For more information about and immediately following CLL Back in June, Advocacy the scientific sessions, you Horizons. This has provided Officer, Charlotte Martin, and can read Charlotte’s blog an opportunity for a joint Patient Advocacy Director, and watch her videos on the conference session, attended Zack Pemberton-Whiteley, conference here http://bit. by both the clinicians and attended the 24th annual ly/2019EHAConference. the patient groups. The joint conference of the European session will allow discussion Haematology Association (EHA) And the team are out and of topics important to both in Amsterdam. The four days about even more in September. patients and clinicians, such were attended by 12,600 people Our Patient Advocacy and as what the optimal treatment from six continents. Healthcare Liaison Officer, plan is in 2019. Nick, is organising this year’s As well as showcasing the CLL Horizons conference Finally, our Advocacy Officer latest research in haematology, in Edinburgh at the end of Charlotte will also be attending it also included a full day of September, in his role as the the IWCLL conference to present patient advocacy talks entitled head of the international CLL some focus group research the EHA-Patient Joint Policy advocacy group CLL Advocates we have conducted, which Symposium. This included Network (CLLAN). This is a discusses patient preferences talks on areas such as ensuring conference designed for and thoughts about current patient access to affordable, international patient groups treatments available in the UK. innovative treatments and to come together to share managing the hype about CAR-T knowledge that should improve therapy. All included at least the lives of CLL patients You can contact the Patient one representative patient, as worldwide. Advocacy team at advocacy@ well as Zack who spoke about leukaemiacare.org.uk the role of patient advocates in CLL Horizons is also being
Helpline freephone 08088 010 444 11 INTERVIEW WITH ROMAN REIGNS An interview with Roman Reigns Last year, WWE (World Wrestling Entertainment) superstar Roman Reigns announced he was taking time out to receive treatment for chronic myeloid leukaemia (CML). We sat down with Roman Reigns for an exclusive interview on his diagnosis, treatment and his newfound position as an advocate for blood cancer patients.
In October 2018, global searches (CML) diagnosis. Despite the platform, that’s why I want of leukaemia spiked after one relative rarity of his leukaemia, people to know. I want people to man announced his leukaemia he is suddenly in a room full of understand that it’s not what to the world. people like him. people see in the movies. We’re in a different place now; we are WWE star Leati Joseph Anoa’i Although physically imposing, making advancements, there aka Roman Reigns sent there is no doubt that he is are things we are doing to help shockwaves through the less muscular than he once people and save lives – we just sporting community with his was. His appearance has been don’t always concentrate on announcement. At 6ft3 and scrutinised by fans and media those things." weighing over 265lb, he cut an alike – how is it possible to impressive figure in the ring return from cancer looking the In the days following his return, with the spotlight of the world way he does? In an industry a documentary was released by on him as he relinquished his that has created storylines WWE chronicling the journey of world title to face leukaemia about a number of topics, was it one of their biggest stars and it treatment. possible that this was a story for was revealed for the first time a character? that Reigns had been living On February 25th 2019, just 126 with chronic myeloid leukaemia days after this announcement, (CML), a treatable but incurable Reigns returned to the spotlight form of blood cancer, for over a and announced his remission. decade. Chasing an American For patients like It was backstage at the O2 arena Football career in his early 20s, Roman, many will a medical exam diagnosed his in London where we met Reigns take a treatment for the first time, with showtime blood cancer. just an hour away. ‘Smackdown called a tyrosine kinase inhibitor, or It’s crouched over backstage Live’ will be filmed in the UK and, equipment where Roman gave in a few short hours, beamed TKI. us insight into what it’s really to the US to millions of fans like living with CML. He’s softly awaiting the next storyline in spoken in many ways but the WWE. He’s in the middle of a He’s keen to dispel any myths passionate when discussing the feud with ‘Elias’, a charismatic around his cancer, "I think there perceptions of what a cancer 6ft, 220lb opponent with flowing is ignorance of leukaemia. The patient looks like, "In the media, locks and a tendency to attack word alone is intimidating. what we like to talk about is very an opponent using a guitar. ‘Leukaemia’ it sounds like a controversial, that’s what we In the minutes before we are cancer word. It sounds like it want to discuss. We don’t want due to speak to him, he’s being could take your life. What people to discuss the good moments or interviewed by the BBC; their haven’t realised is the different ‘the wins’. With my story and the presenter also lives with a phases. That’s the whole thing help of my medication, and the chronic myeloid leukaemia about me and this huge WWE medical breakthroughs that we
12 www.leukaemiacare.org.uk Picture: Four-time WWE world champion Roman Reigns
Helpline freephone 08088 010 444 13 PICTURE (ABOVE, L-R): LEUKAEMIA CARE TRUSTEE AND CML PATIENT KRIS GRIFFIN, ROMAN REIGNS AND DIRECTOR OF COMMUNICATIONS AND FUNDRAISING NICOLE SCULLY
PICTURE (BOTTOM RIGHT): ROMAN REIGNS MAKES HIS ENTRANCE AT WWE SMACKDOWN LIVE! MAY 2019
have, I think it’s very important as he became an icon of the young children; to be able to to understand that. We are 80s and early 1990s. Here in be so new to this world and winning some of these battles. the UK, many people have fond to be able to take on so much There are very specific reasons memories of Big Daddy on World darkness, to be able to continue why I am maintaining the look of Sport, with whole families to focus on the light when you’re and the health that I have, and cheering on their favourite stars. going through the clouds. The it’s important that people know beauty of this now and being that." Roman Reigns is now the face this kind of flagbearer for CML of the WWE (formerly known as patients is the fact it creates WWF). The brand has morphed so many opportunities to meet into something bigger than so many new people, to meet so wrestling. Their social media many people with great stories, The fact that I am presence alone has over a to shed light to their story. still able to do that, billion followers worldwide, and with this it is arguable "What I want to do is to take I think that should that Reigns is now the best this giant mountain that WWE give a lot of hope to known CML patient in the world has, and take so many of these people that they can and overnight has become a victory stories, and plant these lead a normal life and figure for other patients to look flags on top so that we can can still capture their up to. Reigns himself finds share them with the world." dreams. inspiration in other people, "I’m inspired by the children. For patients like Roman, many For me, I’m very fortunate. will take a treatment called a With the opportunities and the tyrosine kinase inhibitor, or TKI. If you’re not a fan, you may have connections we make through In the most basic of terms, this an image of what WWE wrestling the WWE, through Make a Wish, is a treatment that is targeted at is all about. Vivid memories LLS (Leukemia and Lymphoma the leukaemia cells. Whilst his of Hulk Hogan with his crop of Society, a US charity) and treatment can’t cure a patient blonde hair and red vest are different paediatric hospitals of leukaemia, it can keep cells ingrained in the minds of many that I’m able to visit. It’s these at an almost undetectable level. These treatments aren’t without
14 www.leukaemiacare.org.uk INTERVIEW WITH ROMAN REIGNS their side effects. Some sections I’m not going to belittle my arthritis but he shared a little of the media, particularly in story or be ashamed of it just more about the daily effect the wrestling media, have because I didn’t suffer as much that these tablets have on his argued about whether this as the next person. I would life, "Some days it makes me treatment can be classed as never ask that or never want a little nauseous; I do a good a chemotherapy in the more it to be. I’m very fortunate for job in trying to keep everything traditional sense. how my life has turned out, down and not going the full way and the struggles that I’ve met in terms of being sick. It can and thankfully conquered. I’m disrupt your stomach a little good where I’m at and I don’t bit. You have to change some of need anything worse to prove your eating habits. I can’t take I think there is anything to anybody else. in as much protein as I used to. ignorance of In terms of my alcohol, I’ve got leukaemia. The word "This is what I feel when people to be that guy who kind of sits see me in that ring, when alone is intimidating. on the side of the party here and they know I came through there, I’ll maybe have myself what happened to me and a glass of wine. For the most still do something like being part, it’s out completely. I can’t a performer and throwing my really go in the sun as much, I At this point, Roman is body around in front of millions have hyperpigmentation from more serious, "I take an oral of people. The fact that I am my medication. There are a few chemotherapy. I don’t have to still able to do that, I think different effects, but at the end go in for radiation. The analogy that should give a lot of hope of the day, I woke up. I’d rather I use is that I went to war, but to people that they can lead a deal with a few side effects here I didn’t shoot my gun. Now the normal life and can still capture and there and continue to wake question seems to be ‘have you their dreams." up every day." suffered enough?’ or ‘you’re not as bad as this person’. Why TKI treatments can come with When diagnosed with CML, should I be as bad as the next a series of side effects from Reigns was about to become person? Do I have to be as bad muscle cramps and pain to a Dad for the first time to his as the next person to be in a fatigue. Previously, Reigns daughter. Since diagnosis, he bad way? We’re all different and revealed to the world that his has also welcomed twin sons we all have our own journeys. treatment had caused some with his wife who he married
Helpline freephone 08088 010 444 15 in 2014. While his boys are still young, Reigns has worked hard to assure his daughter that he’s going to be ok, "I didn’t take on a huge physical transformation, so I think that helped my older daughter and stopped her becoming too worried. She’s always looked at me as a personality of strength, as someone who can go and do these crazy things and get the family where we need to be. I didn’t want to take that perspective away from her, I wanted to continue to be that real-life superhero. I think as she gets older, and as her understanding becomes greater, she will know what happened and how the life I have lived has been pretty remarkable. I just don’t want her to worry too much for me." As a newly crowned advocate for blood cancer patients, Reigns is keen to support and inspire others who are going through a similar situation. Men are notoriously poor at reaching out for support, even when they need it, "Us men, we are stubborn people. We are proud and we wear it on our sleeves. Drop your pride guys. Trust your medical staff and believe in what they are saying. We think we are macho men, and our bodies can just do it. We need the help. Our doctors and medical staff put so much time and so much effort into resources to find these different medications and cures. Do the simple thing and take your pill. Don’t be stubborn, there is nothing wrong with a little bit of help." PICTURE (ABOVE): ROMAN And with that, he’s gone. REIGNS IN THE RING AT Ushered away by his team to The team at Leukaemia Care SMACKDOWN LIVE get ready for a show where are grateful to Roman Reigns crowds will cheer for each spear and WWE for arranging this performed and Superman punch interview. To listen to the full landed. For this CML patient, it’s recording, as well as bonus all part of the day job. audio about wrestling, search for Leukaemia Chatters on your podcast provider or listen through the Leukaemia Care website.
16 www.leukaemiacare.org.uk RADIO 4 APPEAL
Radio 4 Appeal Keep your ears open for our Radio 4 appeal this September.
We’re delighted that Leukaemia Kate’s face may seem familiar, is given a three-minute slot Care have been granted a slot and you may well remember her to promote an aspect of what on the famous Radio 4 appeal from last September’s edition of they do, and the listeners to the which will air for the first time ‘Leukaemia Matters’ where she appeal can make donations on Sunday 15th September. was the cover star (alongside towards that particular cause. her two adorable dogs). Kate This is the first Radio 4 appeal worked with Leukaemia Care The Leukaemia Care Radio 4 for the charity in over 20 years last September to share her appeal will air on Sunday 15th and will go on air during our acute promyelocytic leukaemia September at 7:54am and Blood Cancer Awareness Month (APL) story with the media and 9:25pm. The appeal will air for a campaign. her story was shared worldwide third and final time on Thursday through various news outlets. 19th September at 3:27pm. While some charities choose to work with a celebrity for A year later, Kate is now a We’d love you to share the word an appeal, we thought it was trustee for Leukaemia Care about our appeal. You could vitally important to tell the and travelled to London in July let friends and family know in real story from a leukaemia to record her story. We’re very conversations. Alternatively, patient, so we’re delighted that grateful for all the time Kate you could talk about the appeal Kate Stallard agreed to share has given to the charity and her on Facebook or Twitter – use her story with the nation once willingness to share such an #BBCRadio4Appeal and we’ll again. intimate part of her life with the look out for it. world. Throughout the week of the You may never have heard appeal, we’ll be talking about it of the BBC Radio 4 appeal on our website and across our before today. The BBC Radio 4 social media channels, so make appeal has been running for sure you’re following – and a number of years and raises share the messages if you can. approximately £1 million per year for charities and good causes. Each week, a charity INSPIRATIONAL STORY Leah Arora’s Spot Leukaemia story Leah was diagnosed with acute myeloid leukaemia (AML) at the age of 22, but only after she made multiple visits to her GP, and an admittance from a haematologist that she was only given a blood test after crying during her appointment. Here, Leah recounts her experiences.
I first had the flu and an and low platelets. She said of chemotherapy was 31 days infection in my leg (cellulitis), she was referring me on the where I stayed in my room at which I went to the GP for and urgent waitlist which was only UCLH. I had four rounds in total took a course of antibiotics. for cancer patients, and she which lasted six months. I was then having extremely said, "I’m doing this because I painful stomach pain at night don’t think you’ll last that long A lot of children would look for the first week. The pain would otherwise" and laughed. at me funny and I would hear last for a few hours and keep them ask their parents why I me up at night in agony. It then Two weeks later, I saw the didn’t have any hair. I am now in progressed to instant pain in haematologist and she told remission and I continue to have the same place as soon as I me I had been referred to the bone marrow biopsies every swallowed a mouthful of food. wrong department, I should eight weeks for monitoring. This happened till the point of have been referred to the gastroenterologist and she It is vital people know the signs diagnosis. I was also fatigued because the flu-like symptoms and breathless. didn’t know what she could do for me. I began to cry and she and infections do not typically I went back to the GP after a then said she would take some lead you to think of leukaemia. week or two and she prescribed more bloods. The next day she People need to be made more me omeprazole for acid reflux. I called me to ask me to go back aware, including the healthcare said I didn’t think this was acid to the hospital the following day professionals, that leukaemia reflux but something worse, and that’s when I was diagnosed can strike anyone at any time. but she reassured me that this with acute myeloid leukaemia Early diagnosis is always best, is very common and the pain (AML). and it can mean preserving the should go away after two weeks. person’s future in terms of their The haematologist who fertility. As I was diagnosed so I continued with the medication diagnosed me said to me late, I had to begin treatment but saw no improvement, that it was really lucky I had instantly and so I did not have so I went back to the doctor cried during our consultation the option to freeze my eggs, and she referred me to have because otherwise she wouldn’t but had I needed a stem cell an ultrasound because she have requested I get bloods transplant, I would now be suspected I had gallstones. and would have referred me to infertile. That is something that Again, I told her ‘I don’t have another department. would have had such a huge a fatty diet, I am quite young, impact on my life and so the I don’t think that is the case’, I was in my final year of my Spot Leukaemia campaign can but she said it is very common Pharmacy Masters when I had to help to prevent late diagnosis in women. I went for the drop out of university and start and get people talking about ultrasound, where they also took treatment. I was seven weeks leukaemia. bloods from me. from taking my exams. I moved into hospital the same day I was Two weeks later the GP called me diagnosed, which was the most Learn more about the Spot and said she was referring me shocking time of my life; I felt Leukaemia campaign at: to the haematologist because like I had no time to adjust to spotleukaemia.org.uk I had a high inflammation rate what happened. The first round
18 www.leukaemiacare.org.uk
SPOT LEUKAEMIA Leukaemia symptoms: spot the difference
The symptoms of leukaemia can be notoriously vague, which is why we’re encouraging the public and healthcare professionals to be able to spot the signs. In this article, you can learn how to do just that.
Bruising, fatigue, swollen lymph legs, and hands. Bruises may last for longer nodes, night sweats and weight than you would expect or loss are all common symptoms • For children, bruises may might continue to grow in of leukaemia. But how do you start to appear on the face, size. tell the difference between a buttocks, ears, chest, and normal bruise and one caused head. • A normal bruise tends to by leukaemia? How do you know heal after around two to "I noticed some unexplained if a lymph node is swollen due four weeks. Therefore, if a bruises on my right hand and lower to an infection or leukaemia? bruise lasts for more than limbs." four weeks, we recommend In this article, we’ll help you to getting it checked by your 2. There are lots of them – It spot the differences for these GP. is not unusual to have a symptoms. few bruises on your body at "The bruises tended to sort of keep once, especially if you are on bleeding underneath the skin." an active person. However, multiple bruises without 5. You have been explanation is a reason for experiencing excess concern. bleeding – Since bruising is a form of bleeding (it’s "I counted 40 bruises on my body; I just underneath the skin), just thought I bruised easily." unusual bleeding from other areas of the body can also 3. You can’t explain why they be a sign of leukaemia (e.g. are there – The bruises heavy periods, frequent may appear without any Bruising and bleeding nosebleeds or bleeding clear reason. In other words, gums). Although bruises from bruising without damage leukaemia are very similar to to that part of the body. "I was almost constantly bleeding ordinary bruises, there are a few They might also develop from the mouth and the bruises things you can look out for to after very slight knocks that were all over my body." help spot the difference: wouldn’t normally cause a bruise. 1. They occur in unusual places – In cases of "I was bruising where I didn’t leukaemia, quite often remember hitting myself." bruises will appear in places that you wouldn’t normally 4. They take longer than expect, especially the back, usual to disappear –
20 www.leukaemiacare.org.uk PICTURE (ABOVE): BRUISING CAN BE A SYMPTOM OF LEUKAEMIA
untoward. I was becoming "I used to be very good at increasingly tired as well. One multitasking, and now I can’t read afternoon I fell asleep at my desk!" a book and have someone say something at the same time, it 3. Tiredness that remains even takes me a few seconds to switch after rest or sleep, it keeps between tasks." coming back, or is getting worse "I went to bed, slept normally, and woke up feeling fine... but still tired." Fatigue 4. You are continually finding Fatigue is defined as extreme yourself more tired than tiredness that results from usual or breathless during mental or physical exertion, or or after an activity illness. Everyone will experience fatigue at some point as it is "I started to feel very tired, and simply the body’s natural way although I was exercising a lot and of showing that rest is needed. running at least once a week, I felt However, exhaustion that lasts that my fitness levels were not Swollen lymph nodes for prolonged periods of time is improving; in fact, I was getting Although swollen lymph nodes not normal. Here’s how to spot worse." are nearly always caused by the difference: "I remember struggling to climb the infection or reaction to an 1. Weakness or tiredness that stairs in my house." allergy, there are a few things lasts for longer than two you can look out for to help 5. You’re spending extra time weeks spot the difference between in bed and/or sleeping for leukaemia and infection: "I noticed myself getting more and unusual amounts of time more tired, but I just put it down to 1. They last for longer than "Looking back now I had been tired getting older and working so hard." two weeks – Swollen glands for about a month but put it down caused by an infection will 2. Weakness or tiredness to my lifestyle." normally go down within two accompanied by a loss of or three weeks (i.e. until the 6. You are finding it weight infection has been naturally significantly difficult to dealt with). Make sure you concentrate and becoming "I started losing weight, but had visit your GP if your lymph confused more easily tried to lose a few kilograms, nodes don’t seem to be so didn’t relate this to anything improving within this time
Helpline freephone 08088 010 444 21 SPOT LEUKAEMIA
or aren’t getting better with to why your lymph node is they cause you and your bed antibiotics. swollen; for example, you sheets to become soaked to the might have a cold or a tooth extent that you can no longer "I noticed a swollen gland near my infection. You should make sleep on them, often when your collar bone. After a couple of weeks an appointment with your room is at a comfortably cool of it not going down, I made an GP if you have a swollen temperature. appointment to see the doctor." gland and no other signs of illness or infection. It is important to visit your GP if: 2. They are painless – Rather surprisingly, tenderness, 5. They are hard or 6. You regularly have night redness or warmth of the unmovable – Unfortunately, sweats that wake you up nodes is actually a good apart from being painless at night – You may wake up sign as it is more likely to and abnormally large, drenched in sweat, unable to indicate infection of the swollen lymph nodes in cool down even if your room node. It is important to get leukaemia or lymphoma is cool. Many describe the painless lumps checked out tend to feel quite similar feeling as if they had just by a GP to determine the to infected lymph nodes. got out of a swimming pool cause of the enlargement. However, occasionally they and laid down in bed. This being said, leukaemia can feel very hard and "There were a couple of occasions or lymphoma (another type cannot be moved when where I woke up in the middle of the of blood cancer) can cause pushed. Healthy lymph night drenched with sweat, feeling painful lymph nodes on nodes are more rubbery like I was in a sauna." occasion. This is because than the surrounding tissue they can grow big enough to but are not solid like stone. 7. You have never experienced press down on surrounding Any lumps on the neck, night sweats before – Night nerves or other organs, groin or armpits that are sweats that occur fairly causing pain. hard, very enlarged, and consistently and constantly do not move when pushed "I noticed a lump that appeared throughout the night may indicate lymphoma or on my jaw line. I didn’t think much and in small quantities another type of cancer and about it as I presumed it was just are generally harmless. should be investigated by a lump of fat that was natural with Unfamiliar night sweats your GP. age. It wasn’t painful at all, but it that happen suddenly was a bit of a nuisance." in hot flashes are more concerning. 3. They continue to grow in size – In their swollen "I had a few nights where I state during an infection, would get very bad night sweats lymph nodes can enlarge – something that has never to the size of half an inch happened to me before." in diameter. Lymph nodes 8. You are having severe night that are around 1 or 2 inches sweats but can’t work out or bigger are not normal why, i.e. you are sleeping in a and should be carefully cool environment. inspected by a GP. Because the swollen lymph nodes "My night sweats were transient, I’d Night sweats are often painless, they can end up experiencing a week of night sometimes grow in size Sweating is the body’s natural sweats, and then nothing." before a person even notices way of cooling down. It happens 9. You also have a fever, them. to everyone throughout the a cough or diarrhoea day and most people will also "I had a sort of lump on the side of – Generally, fevers and sweat to some degree during my neck. I was at work one day and chesty coughs are caused the night. The key difference the chap on the desk next to me by infections. If this is between harmful and harmless said it looked like it was getting the problem, your doctor night sweats is the quantity bigger, so I went along to my will be able to prescribe of sweat, and the temperature doctor." antibiotics. However, be at which they occur. Night sure to return if symptoms sweats caused by illness are 4. You can’t work out what persist. Leukaemia can more than just breaking a light has caused them to cause repeated infections – Normally you will sweat because you have too enlarge by weakening your immune have a fairly good idea as many layers of bedding. Instead, system.
22 www.leukaemiacare.org.uk SPOT LEUKAEMIA
"The night sweats were awful, and is still important to make an with how quickly you are I had a temperature and felt like appointment with your GP, going to lose weight. For I had the flu a few days before as they may be able to spot example, you might have diagnosis." something that you can’t. suspicions that your current level of exercise doesn’t 10. You are experiencing It is important to visit your GP if: merit such extreme levels of unexplained weight loss weight loss. alongside your night 11. You can’t link your weight sweats – Rapidly dividing loss to diet or exercise "I started losing weight too, but leukaemia cells use up – Generally, weight loss had tried to lose a few kilograms, energy that your body would without an obvious so didn’t relate this to anything otherwise use or store as change in diet or exercise untoward." fat, causing weight loss. is unhealthy and needs checking by a GP. 13. You have also noticed a decrease in appetite – • Even if you think your Leukaemia can sometimes unintentional weight loss cause you to feel full after can be explained by stress eating very little food (an or a pre-existing medical enlarged spleen can press condition, it is important to upon the stomach, giving gain a professional opinion your brain a false sensation from a GP. of "fullness"). "I lost a lot of weight. I felt fine, but "I also noticed a change in my my clothes never fitted me, they weight, and I lost my appetite. I were too big. I’m type 1 diabetic later learned that this was caused as well, so I thought it was my Unexplained weight loss by my enlarged spleen which was diabetes." pressing on my stomach." Although unhealthy, it is normal 12. You have lost a lot of to notice a temporary loss of weight very quickly – A weight after a stressful change loss of 5% of your weight Don’t forget to share this article to your life such as a change in six months to a year is with friends and family to help of job, redundancy, divorce or considered to be a concern them spot leukaemia. bereavement. Nevertheless, by medical professionals. even if you think your recent loss of weight can be attributed • Even if you have recently to stress or something other started exercising, it is than dieting or exercising, it important to be realistic
PICTURE (BELOW): FATIGUE CAN BE A SYMPTOM OF LEUKAEMIA
Helpline freephone 08088 010 444 23 CHEMO BRAIN What is Chemo Brain? In this article, our Nurse Advisor, Fiona Heath, takes an in depth look at chemo brain and how you can manage it.
Chemo brain is a common Signs and symptoms that it may be caused by a phenomenon for blood cancer combination of factors: patients. For decades, patients The symptoms of chemo brain have described experiencing are usually mild, and people are • The cancer itself. problems with memory, still able to do everyday things. But they may notice they aren’t • Cancer treatments, attention and processing including chemotherapy, information. This phenomenon able to do some things quite as well as before they had cancer. radiotherapy, surgery and is often called ‘chemo brain’ or hormonal therapy. ‘chemo fog’. It can be defined Symptoms can include: as a decrease in mental • Very intensive treatment sharpness – being unable to • Difficulty concentrating such as high dose remember certain things and (short concentration span). chemotherapy followed by a having trouble finishing tasks or bone marrow transplant. learning new skills. • Memory loss (trouble recalling names, dates and • Stress, anxiety and Although it is commonly used, sometimes other events). depression. the term ‘chemo brain’ can be misleading. Research shows • Fatigue. • Anaemia. that changes in memory and • Difficulty doing more than • Sleep problems. concentration can also happen one thing at a time (multi- in people with cancer who tasking). • Nutritional deficiencies. have never had chemotherapy. Doctors now think that these • Taking longer than usual to Coping with chemo brain problems could be due to a finish tasks (disorganised, variety of reasons, including the There are many things that you slower thinking and can do to help you sharpen your different cancer treatments and processing). the cancer itself. mental abilities. The symptoms • Trouble finding the right of chemo brain are usually Other terms for chemo brain words or being able to finish temporary and often get better include: sentences. with time, but for some people, symptoms can continue for • Mild cognitive impairment. • Difficulty in learning new years after treatment. There skills. are a number of things you can • Cognitive dysfunction. do to help yourself. Your doctor • Difficulty in focusing on a • Cancer associated cognitive or specialist nurse can also task. changes. give you more information and What causes chemo brain? support. • Cancer related cognitive impairment. The causes of chemo brain are Keeping a diary of your not clear. Research suggests symptoms can be a really
24 www.leukaemiacare.org.uk useful tool. It can help you • Get enough rest and sleep. save mental energy. to see if certain things make your symptoms worse. For • Avoid trying to do too many • Keep active - being example, you may notice that things at the same time - physically active can help your symptoms are worse at a don’t try to multi-task. you feel more mentally alert. certain time of day, or when you • It might be helpful to write • Reduce stress - stressful are tired or hungry. Using a diary yourself notes and stick situations can affect can help you to plan activities them up where you can see everyone’s memory. for when you are at your best. them. Relaxation can help to reduce stress and may help Some other tips to cope with • Try to do the most difficult chemo brain are: to improve your memory and tasks earlier in the day. concentration. • Keep a treatment diary. • Before your appointment, Chemo brain may be a less • Keep a calendar on your wall write a list of questions obvious side effect of blood or use the calendar on your and things you want to talk cancer and its treatment. phone. about. Therefore, it is important to talk to family and friends about it as • Make lists, for example, • Keep a written record of your previous hospital they will be able to support you shopping lists or ‘to-do’ lists, better when they understand so that you feel confident appointments and planned appointments. more about how you feel. It is you will not forget anything. also important to talk to your • Exercise your brain – • Try to follow a healthy diet. doctor or nurse if you think you have cognitive impairment and memory exercises may • If possible, set up and follow help to train your brain and you are finding it difficult. They regular routines – try to keep might be able to refer you to a improve your memory and the same daily schedule. concentration. You can help specialist to help you. keep your mind active by • Ask for help when you need it doing crosswords, word – friends and family can help You can speak to a nurse every games or number puzzles. with daily tasks to cut down weekday on our helpline. Just on distractions and help you call 08088 010 444
Helpline freephone 08088 010 444 25 CLINICAL TRIALS Clinical Trials: Update on Acute Myeloid Leukaemia study AML19 Our Nurse Advisor, Angela, has years of experience in clinical trials. Here, she looks at updates to the AML19 trial.
The AML19 trial is a national patients aged 16 to 60 years, will discuss the results of these study, being undertaken in and also to patients aged tests with you. The patients the UK. This study has been 61 years or over for whom will be continually monitored designed to continue to improve intensive therapy is considered during the study. Following the treatments by including a appropriate. Approximately test results, your doctors will number of new drugs which 3000 patients will be recruited. provide a specific information have shown to benefit in the The study has recently been sheet for your next treatment early stage of trials with the updated to include some new options. existing standard treatment. treatment options that are currently available. AML19 Mylotarg treatment option It is normal for clinical trials will look at several treatment within the study to be regularly updated by the questions as detailed in this In this study, the first two doctors that are conducting article. During the course courses of treatment (which is the studies. During the lifetime of this six-year trial, not all called the induction phase) will of the study, information randomisation options will be consist of a combination of two is regularly reviewed and open at all times and some drugs called DA (Daunorubicin monitored. This includes new additional options may be and Ara-C). This combination information from other clinical included by further study has been widely used before to trials that are currently in updates. progress worldwide. This new treat AML; this is our current information can also have For this study we are comparing national standard treatment an influence on our current different combinations of which is considered to be the national studies. As a result chemotherapy drugs that best treatment option. of this review, decisions will can be used in treating AML. Previous research studies have be made to either remove or Patients who are taking part shown a benefit of adding add new treatment options. in the study will be required a drug called gemtuzumab This process is what we call a to have blood samples and ozogamicin (also called trial amendment. By updating possibly bone marrow tests. Mylotarg) to the chemotherapy the study regularly, this gives This is important as it gives an which will help to reduce patients opportunities to have indication of how successful the chance of the leukaemia access to new therapies. the treatment has been coming back. following each course. The AML19 trial is open to all specialist haematology team
26 www.leukaemiacare.org.uk A recent French study has shown will be given to the patient with treatment with the following that up to three doses of Mylotarg an explanation about the next options: FLAG-Ida/CPX-351. could be safely combined with DA treatments by your specialist chemotherapy. By having these haematology team. For this part of the study there additional doses of Mylotarg, will be a comparison between this has shown a benefit for Midostaurin treatment – for FLAG-Ida and CPX-351. A written the patients who received the patients with FLT3 result information sheet will be given additional doses of the drug to you, and your doctor will give There is a gene alteration compared to the patients who did an explanation about these drug called FLT3 which is found in not. combinations. the leukaemia cell. Patients The updated AML19 trial will who have this specific gene CPX-351 is a special formulation have two treatment options alteration will be offered this of two drugs that are very available for course one. Two newly licensed drug called effective in AML called doses of Mylotarg with standard midostaurin. Research has shown daunorubicin and cytarabine. chemotherapy will be given that midostaurin has benefitted CPX-351 has been tested in two using the UK approach. This will this group of patients. For the other large trials of AML with be compared with three doses patients that have this genetic encouraging results, particularly of Mylotarg with chemotherapy change, midostaurin will need in patients who have adverse risk as used in the French study. The to be started after finishing features. new change means that some chemotherapy course one. Not all treatment options will patients will receive one extra The midostaurin will continue for be available for all patients; dose for course one. 14 days after each further course however, at each time point This study update will allow us to of treatment. It is given orally, during your treatment, you will make sure that we have the best twice a day. After each course be given information which treatment options available for and at specific time points of is specific to you. If you want patients with AML. treatment, your haematology further information or have any specialist team will discuss each questions, please contact your Following completion of course treatment option that is available trials team. one, a blood and bone marrow to you. sample will possibly be taken A summary of this clinical Treatment options for patients to check if the chemotherapy study will be available on: treatment has been successful. with a chromosome abnormality http://www.ClinicalTrials. Following the results of these Some patients may require tests, specific information sheets gov
Helpline freephone 08088 010 444 27 Christopher Matthews- Maxwell 20 years of service
We’d like to say a big thank you having held the Office of Chair to Leukaemia Care Chairman on two previous occasions Christopher Matthews-Maxwell and becoming Deputy Chair for his 20 years of service to during intervening periods. Leukaemia Care. As a Company Director and Chartered Secretary with wide Chris’ involvement with business interests in the North Leukaemia Care began as a of England, Chris has extensive direct result of the death of board, senior management a close family member from experience in private, public acute myeloid leukaemia. and charitable sectors. He has also held a number of senior Chairman Chris has been a public appointments at both Trustee of Leukaemia Care since national and regional levels in a 1999 and Chairman since 2015, variety of fields.