Lymphoma matters - Your blood tests Insight into pathology Clinical trials update
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lymphoma ISSUE 116 SPRING 2020 matters Your blood tests Insight into pathology Clinical trials update
Owen talks about his experience of angioimmunoblastic Understanding T-cell lymphoma blood tests 07 Join our Bridges of London event 12 22 29 26 Kathleen's experience of Burkitt lymphoma Clinical trials update from the NCRI 32 Join our Kenya trek Contents 18 Lymphoma Action is the UK’s only 04 Latest news Medical opinion Research into charity dedicated to lymphoma, the News and follicular lymphoma fifth most common cancer in the UK, developments 20 Personal and the most common among people 08 aged 15 to 24. We’ve been providing in-depth, expert information and Ask the story wide-ranging support for over 30 years, expert Dwayne shares his helping thousands of people affected by lymphoma. Our work drives Insight into experience of skin improvements in the diagnosis, pathology lymphoma treatment and aftercare of lymphoma. We’re here for you. Views expressed in this publication are those of the contributors. Lymphoma Action does not necessarily 16 Fundraising Our calendar 34 Support groups agree with or endorse their comments. of events Kevin explains © Lymphoma Action 2020. For further information about permitted use the benefits of of our materials, please refer to our website. attending a group Editor: Anne Hook Cover: Georgia, who features in our revised Young person's guide to lymphoma (see page 6) To make a comment, to sign up, or to unsubscribe to the magazine, email publications@lymphoma- If you would like to make a donation action.org.uk or telephone 01296 619400. towards our work please visit lymphoma- action.org.uk/Donate or call 01296 619419. Lymphoma Action 3 Cromwell Court, New Street Aylesbury, Bucks HP20 2PB www.lymphoma-action.org.uk Helpline (freephone) 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 latest news visit lymphoma-action.org.uk/News WELCOME Working in collaboration I hope you enjoy this latest edition of Lymphoma Matters. As well as our medical writers, Lymphoma Matters only comes together because of the stories and time given by our supporters, by healthcare professionals and by those willing to share their experiences (and their photos!) – thank you. Ropinder Gill, So much of what we do is in collaboration with others, whether Chief Executive it’s getting behind the One Cancer Voice manifesto with other charities, working as part of the Blood Cancer Alliance to make Have your say in the change we need for the future, or being an active member the Lymphoma of the global Lymphoma Coalition. There is real strength in Coalition 2020 numbers when it comes to influencing decisions that will Global Patient impact those affected by lymphoma. Survey And being collaborative is one of our five new values. Building See page 5. on the brand refresh, we have been looking at what we do and how we work. We have developed new values and created a long-term strategy that reflects our ambitions for the future. We hope this resonates with you, and appreciate your ongoing support as we aim to reach even more people affected by lymphoma. You can read about our strategy, how our work impacts people and about those at the heart of it all online at lymphoma-action.org.uk/AboutUs Our new values Focused We are dedicated to the needs of those We hope you like this affected by lymphoma. edition of Lymphoma Matters. You can sign up to regularly Empowering We build confidence to make change happen. receive our magazine at lymphoma-action.org.uk/SignUp Trusted We use our expertise to deliver quality services. Innovative We look to a better future for people affected by lymphoma. Collaborative We are inclusive and value our partnerships. LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2020 03
NEWS 136,000 people in the UK are living with chronic cancer A recent study from or slow its progression, 3 in 4 people with chronic Macmillan Cancer relieve symptoms, and cancer are not getting Support and Public improve quality of life. the support they Health England’s National Some types of lymphoma need – whether that Cancer Registration and fall into this category, is emotional, physical Analysis Service (NCRAS) with treatment aiming to or financial. Living with has found that there are control the lymphoma and chronic cancer can be 136,000 people in the UK send it into partial remission – challenging, but with living with chronic cancer. with several different the right support and treatments over the course treatment, people with Chronic cancer is cancer of living with the condition. chronic cancer should that is treatable, but not be able to live their lives curable, where treatment Worryingly, the research as fully as possible. aims to control the cancer showed that more than One Cancer Voice: A manifesto in cancer research for people living with cancer • Preventing people from developing cancer. In November, in manifesto makes collaboration with 28 recommendations covering With 1 in 2 people in the UK charities, we launched six key areas: diagnosed with cancer at some point in their lifetime, a manifesto for people living with cancer calling on the •• Putting the right staff in place Diagnosing cancer earlier this could improve millions of lives and touch every Government to improve prevention, diagnosis, treatment and care. • Ensuring people living with cancer have access to the family in the country. appropriate treatment and As the population living psychological support with cancer grows, we must ensure that people • Supporting people living with cancer beyond their are not just surviving treatment longer, but living well too. The #OneCancerVoice • Preserving the UK’s status as a world-leader 04 Lymphoma Matters Spring 2020
Latest news lymphoma-action.org.uk/News NEWS Best Volunteer Fundraisers of Share your experiences the Year! in the Lymphoma We are delighted for Marguerite Russell and David Coalition 2020 Global Cooke on their well-deserved win at the Institute of Fundraising East Anglia Regional Awards in Patient Survey – November 2019. hurry, the survey closes Their efforts, as part of the Norfolk Lymphoma on 11 March 2020! Action Fundraising Group, have raised over Every 2 years, the Lymphoma £183,000 for us since the group was set up in 2003. Coalition – a non-profit network David and Marguerite both have experiences of patient organisations across with lymphoma that drive them to work tirelessly the world of which we are a to help others affected by the condition. David member – conducts a global received a diagnosis of non-Hodgkin lymphoma survey of patients with lymphoma in 2001, and Marguerite’s sister passed away and CLL and their family, from lymphoma in 2009. friends and caregivers. The 2020 survey is your ‘We cannot thank Marguerite, David and the rest opportunity to share what your of the Norfolk Lymphoma Action Fundraising lymphoma experience has been Group enough for their hard work and dedication’, like. Whether the diagnosis was said Carly Benton, Lymphoma Action Volunteering recent or many years ago, we Development Manager. ‘We are so pleased that want to hear from you! they have been given the recognition they thoroughly deserve.’ The survey data will be used locally and globally to: If you'd like to learn more about volunteering with •• improve support services advocate for change us, go to lymphoma-action.org.uk/Volunteering • provide relevant facts and statistics. Please complete the survey online by 11 March 2020 at lymphomacoalition.org/ gps2020 Marguerite with her award LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2020 05
NEWS New information now available Written by medical writers, approved by experts and reviewed by people affected by lymphoma, our health information is updated every 3 years. Georg ia M, diagn osed We have recently revised at 24 three of our books: •• Hodgkin lymphoma Autologous stem cell transplant (using your We have also revised our webpages on: • own stem cells) Young person’s guide to •• marginal zone lymphomas (MALT, nodal and splenic) common chemotherapy regimens for lymphoma lymphoma, which includes quotes from young people affected by lymphoma, •• lymphoma during pregnancy what happens if lymphoma relapses. like Georgia who is featured on our Autolo stem gous cell transpla nt magazine cover. Autol Order your free copy online at ogous lymphoma-action.org.uk/ Did you know? stem cell tr anspla Shop or download from our You can download A tran splant using nt yo ur ow n stem website at lymphoma-action. PDFs of our health cells Hodgkin org.uk/Books information under lymphoma What the left-hand side Havin is a st g a stem em ce ll tran cell tr splant ? After anspla menu of each page – Hodgkin a stem nt cell tr anspla nt or, if you are looking on a phone or lymphoma tablet, at the bottom of the page. lymphoma ing Hodgkin Understand and staging Tests, scans tment Having trea treatment Coping with r yoursel f Looking afte You can find a list of all of our our downloadable PDFs at lymphoma-action.org.uk/Books 06 Lymphoma Matters Spring 2020
Book your place at lymphoma-action.org.uk/Bridges LN O N FUNDRAISING Join our fabulous D FAMILY EVENT O Bridges of LN O N London Walk – Sunday 7 June Suitable for all ages and abilities, our Bridges of London walk is back. This walk is all about you – its Your Walk, Your Way – and will take place on Sunday 7 June. Walking from Vauxhall Park to Tower Adults £10, family (2 adults + 2 children) Bridge by criss-crossing over 11 bridges £25, young people aged 4 to 16 £5, is one of the best ways to see the children under 3 free. capital. You will have plenty of time to take in all the sights and you may want All we ask is that you try to raise £100 in to stop and enjoy lunch by the Thames. sponsorship and we will support you in your fundraising. All adult walkers receive As this event is arranged completely a T-shirt and medal. Children also receive by us, all the money you raise goes a medal. Small T-shirts are available to towards supporting people affected by purchase in advance for £6.50. lymphoma. It will be rewarding, fun, absolutely achievable, and we would love Book your place on this fun event at to welcome you to Team Lymphoma. lymphoma-action.org.uk/Bridges LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2020 07
PERSONAL ASK THE STORIES EXPERT ask the expert Insight into pathology Consultant Haematopathologist Bridget Wilkins answers your questions on pathology A pathologist is a doctor who looks at Chronic lymphocytic Sometimes a lymphoma is laboratory samples under leukaemia is a classic diagnosed coincidentally a microscope and does example of a lymphoma that when surgery is being specialised tests on them shows up in the blood. When undertaken to treat the same disease stays put another condition, such as to help make a diagnosis. in lymph nodes (we don't a suspected cancer in the yet know why it does this), lung, breast or bowel. Those Does the diagnosis of it’s called ‘small lymphocytic patients will not usually lymphoma always rely on lymphoma’ – and that would need any additional biopsies. a biopsy? need a biopsy for diagnosis. It's very unusual for a patient’s Hairy cell leukaemia and When the diagnosis is known first diagnosis of lymphoma splenic marginal zone and disease becomes more not to require a biopsy, but lymphoma are another two extensive, or relapses after there are some lymphomas examples of lymphomas that treatment, a biopsy is often that ‘leak’ a lot of cells into have a lot of cells in the blood not needed for confirmation, the blood and those can be stream and may not need a as imaging studies (MRI, PET diagnosed from blood tests. biopsy for diagnosis. and CT scans, for example) 08 Lymphoma Matters Spring 2020
Find out more about tests, diagnosis and staging at lymphoma-action.org.uk/Tests ASK THE EXPERT It is very unusual for a patient's first diagnosis of lymphoma not to require a biopsy. Preparing tissue samples is a complex process that takes can be sufficient. In the future, quickly onto the right care time. ‘liquid biopsy’ techniques such pathways. as single cell and cell-free tumour DNA testing may From a pathologist’s point of often the next quickest and become commonplace in view, thinking about making easiest procedure to do. Most these circumstances. a diagnosis of lymphoma, lymphomas can be diagnosed I want the patient to have fully from these samples How is it decided what undergone a biopsy procedure as long as they are of good type of biopsy is required? that’s the least invasive, but quality. It’s often a matter of what is which provides plenty of practical in a particular place tissue for me to make a full However, there is often no or at a particular time. It also diagnosis without having to left-over tissue for research depends to some extent ask for a further sample. from needle biopsy cores, and on how likely a diagnosis some lymphomas are very Fine-needle aspiration can difficult to diagnose without of lymphoma seems in any usually be done very quickly being able to examine larger particular patient. There and the patient doesn’t amounts of tissue. So, are many infectious and need a general anaesthetic. sometimes a whole lymph inflammatory causes of lymph Aspirates are good samples node must be taken out; node enlargement that initially for seeing whether there this requires the patient to mimic lymphoma but will is, or is not, lymphoma, but have a general anaesthetic resolve on their own over time. they often don’t allow us and undergo a (usually small) We want to sample those in to tell exactly what type of surgical procedure. the least invasive way possible lymphoma is present. For that, – usually by a fine-needle a needle biopsy (to obtain a In general, we need aspirate, with local anaesthetic small solid core of tissue) is more tissue to diagnose – to obtain a relatively small number of cells to assess, for reassurance. This approach is also very efficient for detecting In general, pathologists need more tissue to cancers other than lymphoma diagnose lymphomas than many other types of cancer. and getting those patients LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2020 09
ASK THE Read more 'Ask the expert' questions on our news section, lymphoma-action.org.uk/News EXPERT lymphomas than many other like Burkitt lymphoma, is When samples are sent from a types of cancer because, suspected, every effort will smaller local hospital to one of in addition to looking at be made to fast-track every the large regional lymphoma ‘standard’ histological step in the laboratory to laboratories, results can take sections under a microscope, get the result ready and an extra 2 to 3 days while the we need to do additional back to your oncologist or material is in transit. We all tests such as immunostaining haematologist within 48 work hard to keep this to a and molecular tests to reach hours. Unfortunately, we can’t minimum but it is a necessary a full diagnosis. do this for every sample. price to pay for access to the more extensive resources Do you look at the The reason why things and expertise at the regional sample alone or view normally take longer is centres. scan images and because the tissue sample blood tests as well? first needs to ‘fix’ in its As a pathologist, once the Whenever we can access formalin preservative. It then sections are stained and them, we look at all these needs to be processed into ready (thanks to my excellent different tests together, a wax block, then have biomedical scientist colleagues to inform the microscope sections in the lab, who are the experts assessment we We need to cut and stained, at doing all of that), I then make of the tissue make sure that and have extra typically need an hour or two sample. When all the different tests done such to assess all the slides and we aren’t able pieces of the as immunostains information to formulate my jigsaw and molecular report. A complicated diagnosis to do this, we do puzzle fit. tests. Formalin may take half a day or even our best to discuss the results with the fixing takes up to 24 more. For speed, I like to write haematologists, radiologists hours, depending on the my own reports directly onto and other clinicians involved size of the tissue sample. the hospital computer system in the patient’s care, to put For tiny pieces it can be as but, in some hospitals, reports the full picture together little as 8 hours. Processing are dictated and then typed while we are assessing the into one or more wax blocks up before being approved and tissue. When even that isn't takes another 24 hours and authorised. You can see how possible, we join the team of getting the various stains the time needed for all of doctors, nurses, scientists and done typically takes another this adds up. therapists who come together 24 to 48 hours. Adding at MDT meetings to make molecular tests may add a Are biopsies ever sure that all the different further week because they sent elsewhere (other pieces of the jigsaw puzzle fit are not done in the same lab. treatment centres or together as they should, so They are expensive too, so oversees, for example)? that the diagnosis is correct. they're batched to keep the Yes. In the NHS in England, costs manageable. However, biopsy specimens known or Why does it take about we rarely wait for molecular suspected to have lymphoma 2 weeks to get the biopsy tests before making our are all sent to be assessed by results? diagnosis – the results of experts based in large regional You can rest assured that if those tests refine rather than pathology centres. Apart a very aggressive lymphoma, determine our assessment. from the specialist knowledge 10 Lymphoma Matters Spring 2020
ASK THE EXPERT In the NHS in England, biopsy specimens meeting by a member of known or suspected to have lymphoma are the pathology team. This all sent to be assessed by experts based in may be the pathologist who has actually reported on the large regional pathology centres. sample, or a colleague with whom they have discussed of the pathologists at these happens to work. Sometimes the findings in preparation centres, the larger size of there is particular expertise for the MDT meeting. In these laboratories means in one country (for example, general, for diagnosing that they have access to a Hodgkin lymphoma in lymphomas, we work in wider range of immunostains Germany) because there has teams of three or more and genetic tests than is been a long history of clinical pathologists, so that we available at smaller hospitals. trials being based there. can report samples with a Similar, although less formal, minimum of delay, quality- referral arrangements also Another reason why biopsy assure one another’s work operate throughout the samples are sometimes sent and occasionally take a NHS in Scotland, Wales and elsewhere, including overseas, holiday! Most pathologists Northern Ireland. is for research as part of a find the MDT meetings are clinical trial. This is something some of the most rewarding If a lymph node sample is you should expect, as the parts of their work; we love difficult to interpret for some patient, to be asked to give being able to ‘see’ the patient reason, and particularly if it your consent for (or, if you through the discussion seems to show something wish, to withhold consent) that takes place among the rare that the local or regional as part of the discussions different clinicians who are pathologist may not have around your consenting to present and we value being seen many times, it may be take part in the trial. part of the clinical team. sent for assessment by an individual with very specific Do you discuss the With thanks to Bridget Wilkins, expertise in diagnosing a results at MDT meetings? Consultant Haematopathologist, Yes. Every lymphoma St Thomas' Hospital, London particular type of lymphoma. and Royal Hampshire County Some expertise of this sort diagnosis is discussed at the Hospital, Winchester for is only available overseas, multidisciplinary team (MDT) answering these questions. for example in the USA or Hong Kong, because Every lymphoma diagnosis isFind discussed at ?????????? the out more that’s where the individual MDT meeting by a member of the pathology team. highly specialist pathologist LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2020 11
PERSONAL EXPERIENCE I REALLY DIDN’T WANT THIS TO BE LYMPHOMA Owen talks about his diagnosis of angioimmunoblastic T-cell lymphoma and his family history of lymphoma I have been married to excluding some possible increasingly worried, and I Yvonne for 27 years and causes, the ENT consultant found it difficult not knowing wanted to continue to what the problem was. we have two sons; one monitor me, as my lymph is 21 and at university nodes were still a bit Even with all this medical and the other is 24 and swollen. focus on my lymph nodes, has recently started strangely, I did not think I working as a nurse. I am After a couple of MRI had lymphoma. Both my scans showed no change, a elder brother and dad died an IT Project Manager. needle biopsy was arranged. of non-Hodgkin lymphoma; On the first day of a break The needle biopsy wasn’t my brother in 1999 and my with my family I developed, conclusive, so I had two dad in 2001. So I thought what felt like, a bad throat lymph nodes removed from I knew the symptoms infection. The lymph nodes my neck under general of lymphoma, and my in my neck became very anaesthetic in early January symptoms were different. enlarged, and I thought 2018. In the days after the Having said that, I was I must have picked up a lymph node removal my neck also certain that of all strange infection on a was getting bigger and bigger. the things I did not want business trip. I was given I thought I had developed an it to be, number one intravenous antibiotics. infection in the wound, but was lymphoma. it was the remaining lymph Once home, I was referred nodes in my neck continuing After a difficult month of to an ENT consultant. After to swell. I was getting waiting and worrying, in 12 Lymphoma Matters Spring 2020
Read more about angioimmunoblastic T-cell lymphoma at lymphoma-action.org.uk/AITL PERSONAL EXPERIENCE February 2018 I was diagnosed with angioimmunoblastic T-cell lymphoma, a type of high-grade non-Hodgkin lymphoma, and the same lymphoma my dad had. More tests followed including a PET scan, bone marrow tests and more blood tests. I was told that I would be treated with six cycles of CHOP chemotherapy, and then if I was in remission, We wanted to I would be given a stem cell transplant. be open about We wanted to be open about it, and wanted our sons to the diagnosis. know first. We went to see each of them in turn. They knew I had been unwell for a while, and had been off work, so knew it was something serious. But I was impressed by how caring and mature they were, and was reassured that they were as OK as they could be with the news. My mum would also have to go through the non-Hodgkin lymphoma experience of an immediate family member for a third time; maybe that’s unique. Yvonne, my sons and my mum were amazingly resilient, and this helped me. I now felt able to let others know, and found telling family and friends very helpful as everyone was very supportive. Small gifts and regular phone calls made me realise they My family were cared – perhaps more than I had known before. Although amazingly I had already been off work for several weeks, I was now able to give them a clearer picture of what my diagnosis resilient, and would mean work-wise. this helped. I began treatment at the end of February 2018 with CHOP chemotherapy. At the beginning of the second cycle I lost most of my hair. I woke up one morning with loads of it on the pillow, and Did you then had a shower and lost most of the rest, so decided to shave off what was left. It was a bit weird and I was self-conscious for a few days, but people were quite positive about my new look, so I began know? to feel OK about it. Angioimmunoblastic T-cell lymphoma is The six chemotherapy treatments were in 3-week cycles. By the often fast-growing. end of the second cycle I knew the pattern: Most people are diagnosed at an advanced stage and Week 1 – low appetite and feeling sick, and sometimes being sick are treated with Week 2 – feeling better than week 1 but aching back and hips chemotherapy. Week 3 – feeling normal(ish). People who respond well to chemotherapy and who are fit By the end of the second cycle I could see a bit of improvement. My enough might go on lymph node swelling was reducing, and I was tolerating the chemo. to have a stem cell transplant. LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Lymphoma Winter Matters 2018/19 Spring 2020 19 13
PERSONAL EXPERIENCE My brother and dad had lots the chemotherapy had been it, and knew it would be of trouble with infections successful. Although I was physically challenging. My during treatment, so I was apprehensive about having eldest son is a nurse, and worried about picking up the stem cell transplant, I was during his degree course infections. I was careful about even more worried that the he spent time in a stem hand hygiene and avoiding chemotherapy hadn’t fully cell transplant unit, so we anyone who was unwell. done its job. had some idea of what was involved. I had another The days leading up PET scan and I was in no to the PET scan I had LEAM chemotherapy, was told the doubt the were difficult. We which is a high-dose chemotherapy transplant was decided to go chemotherapy called was working. the right course away as a family ‘conditioning’ every day for 6 It was positive of action. for a short break, days, and then my stem cells news, and given and hoped it was were given back to me. I felt my family history, I a chance to relax. progressively worse as the felt very emotional. But it was days of treatment went by. I a mistake, and all it did developed mucositis (ulcers I had my last dose of in my mouth, throat and was spread the anxiety chemotherapy the day the digestive tract) which made between us. 2018 World Cup started. I am eating difficult, and I also a big football fan and being I eventually had the PET scan, had very bad diarrhoea. able to watch every game and it was the best news; the Over the next 3 weeks I was certainly a plus. I made chemotherapy had worked. I lost a stone and a half. the most of it and really had my stem cells harvested enjoyed watching them all! in late July 2018 in readiness As expected, my blood counts for the stem cell transplant dropped, and I found the My treatment plan had the next month. days when I was neutropenic always been to have an frightening. I was again worried autologous stem cell By the time of the transplant about picking up an infection. transplant using my own I was feeling better and I was in hospital for almost 3 stem cells. A PET scan stronger. I was in no doubt weeks feeling progressively scheduled for about 6 that the transplant was the worse, but suddenly my blood weeks after the last dose of right course of action, but counts began to recover, and I chemotherapy would tell if I was very anxious about began to feel a little better. 14 Lymphoma Matters Spring 2020
Find out more about working and lymphoma at lymphoma-action.org.uk/Work PERSONAL EXPERIENCE Work were really helpful and we realised that the old normal was not going to be the new normal. At least not for now. I was allowed home fairly January 2019, and initially I’m not sure this is the forever soon after that, even though worked from home. It was normal, it’s normal for now. Owen my blood counts were still good to be getting back to low. To be honest, I didn’t normal, and I was keen to do feel ready to go home. I was so as quickly as possible. I Owen’s family still nervous about picking thought it would bring closure history of lymphoma up infections and was still to my lymphoma experience. For most types of lymphoma, struggling with diarrhoea. The By the end of March, I was there are no clear causes. mucositis had all but gone, back to working 5 days a Lymphoma is not inherited – it and I was eating again, but week, commuting to London is not passed from parent to my sense of taste was weird. I occasionally. child. However, your risk of couldn’t taste anything sweet developing lymphoma is slightly and lots of savoury things By early May I realised I was higher if you have a close relative tasted very different. struggling. I felt very tired, still (parent, brother or sister, or had some digestive problems, child) who has had lymphoma. My energy levels were low, and also could not achieve This increased risk is usually but I tried to get outside and the closure to my lymphoma not linked to a particular gene. walk a bit, even in the early experience I wanted. I spoke Research suggests the increased days at home. I began to feel to a psychological nurse who risk may be caused by inheriting better, but it was slow, and helped me to think about my several polymorphisms (variants not every day was better life after lymphoma. I needed of a gene that can affect the than the last. There were to adjust my work life balance. way the gene works) that all times I felt like I was going contribute a small increase in backwards and my energy Work were really helpful and I risk. These polymorphisms levels weren’t getting higher. think between us we realised are often in genes of the But I was getting better and I that the old normal was not immune system. just needed to be patient. going to be the new normal. At least not for now. I am Owen is currently I began a phased return to now working less, and Yvonne participating in a genetic work at the beginning of and I are enjoying this new project and it is hoped phase of life together, that that such studies will at the beginning we thought help understanding gous Autolo l stem cel we might not have. Whilst in the future. lant transp gous t Autolo ll transplan m ce ste n stem cells A trans ur ow plant using yo We have recently revised our book, Autologous nt? stem cell transplant. Download or order a free transpla m cell What Havin is a ste g a ste a ste m cell m cell transpla transpla nt nt copy at lymphoma-action.org.uk/Books After LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2020 15
Find out more at lymphoma-action.org.uk/GetInvolved FUNDRAISING MARCH APRIL Quiz month Easter fun Switch on your We are leaping brains because with joy and this is quiz month! egg-static it’s Easter! Download our pack of top tips on holding a Help get the country treasure hunting by quiz, including six rounds of quiz questions holding Easter Egg Hunts. Our Egg Hunt from lymphoma-action.org.uk/Quiz pack includes pictures of eggs, which you can cut out and hide in your garden or perhaps Alternatively, get your local pub even at work around your office! Children involved and join the world’s biggest will also enjoy our LEAP for lymphoma pub quiz across the UK from 8-12 where we are encouraging them to be March 2020. There is no charge to sponsored to bunny leap for lymphoma. take part, but it is a great way to raise money for Lymphoma To get your Egg Hunt pack or your Action. PubAid will supply LEAP for lymphoma pack – you with the quizzes and including bunny ears! – promotional material. visit lymphoma-action. Go to worldsbiggestquiz. org.uk/Easter pubaid.com for more details. MAY JUNE All about Bridges and teddies food Join in with our Bridges of London walk on Sunday 7 June – May is all about food. Get full details on page 7. your friends and family together As it’s June, why not hold a teddy bears and hold a Lunch for lymphoma. picnic? This is a lovely way to involve You can host a lunch at home and charge children and is very easy to organise a small ticket price, then hold a raffle on with your family, school the day. BBQs, picnics and evening dinner or nursery. Just ask parties count too! Alternatively you could children to bring ask a local restaurant to support you with a their favourite set menu, where you can add a little extra teddy and provide on the ticket price and raise some additional some snacks and funds. For lots of ideas and some great games. For your recipes go to our website and download fundraising pack, your free Lunch for lymphoma pack: please visit lymphoma-action.org.uk/Lunch lymphoma-action. org.uk/Teddies 16 Lymphoma Matters Spring 2020
Find out more about legacies at lymphoma-action.org.uk/Legacy FUNDRAISING The Lymphoma Action Spring Prize Draw is a great opportunity for you to make a difference to our frontline services! Caroline received a diagnosis of stage 4 follicular lymphoma just as she turned Caroline reached out 40. She has now been in remission for 13 to our support services years, and knows from personal experience after receiving her own just how important our services are in lymphoma diagnosis: helping people feel informed, encouraged and 'When I contacted supported during their treatment and beyond. Lymphoma Action they were so supportive, and Help us to keep our front line services running Caroline they were the first people by taking part in our Lymphoma Action Spring that I had a conversation Prize Draw. Every ticket bought helps us to with where I wasn’t completely terrified. continue our work in making sure that no one The Buddy that they found for me was the first faces lymphoma alone. To find out more, call person who gave me hope and now I want to the Fundraising Team on 01296 619419 or email do the same for others in a similar position.' fundraising@lymphoma-action.org.uk IT'S Spring is the perfect time to sow periwinkle seeds. Ours are only £1.50 a packet and are sure to brighten up your garden. The Madagascar periwinkle (Catharanthus roseus) is used to produce two chemotherapy drugs – vinblastine and vincristine. Once your seeds have grown we ONLY would love to see your photos, so £1.50 please share them on social media at #LymphomaMatters. Periwinkle seeds and pin badges are perfect for wedding favours at lymphoma-action.org.uk/Shop LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2020 17
MEDICAL OPINION FOLLICULAR LYMPHOMA Stock photo A journey from prognostic factors to risk-adapted therapies Professor Stefano Luminari, Professor of Oncology at the In this case, the subject is is to choose your transport University of Modena risk-adapted therapy for and plan your route. and Reggio Emilia in follicular lymphoma. The question to ask is: is follicular In terms of response-adapted Italy, gave a fascinating lymphoma suitable for risk- treatment in follicular talk at the 49th Annual adapted therapy? lymphoma, this means Trials Meeting. He deciding how to define ‘high The results of previous trials risk’ and how to measure compared his research suggest that it is: follicular response to treatment. into follicular lymphoma lymphoma is a heterogeneous with a holiday in his (diverse, composed of different Several scoring systems, such home town of Modena. parts) condition and several as FLIPI and PRIMA-PI, use factors have been identified clinical features, blood tests Choose your destination that influence treatment and bone marrow biopsy When you’re going on outcomes. There does seem to results to classify follicular holiday, you choose your be a clear difference between lymphoma as low or high destination carefully and people who are at high risk risk. However, they all define make sure the planning, of relapse or progression and high risk slightly differently. In expense and time involved those who have a longer-lasting addition, other factors such as is going to be worthwhile. response to initial therapy. genetic profiling, quantitative Similarly, when addressing measures of the amount a scientific question, you Select your means of of lymphoma in the body, need to choose your area of transport and PET/CT scan results are research carefully. The next step in your journey also important in identifying 18 Lymphoma Matters Spring 2020
Read more about follicular lymphoma at lymphoma-action.org.uk/FL MEDICAL OPINION people with high risk The PETReA study is testing results and the full results of lymphoma. Similarly, response whether response to initial the study are not yet available. to treatment can be assessed treatment for follicular in a variety of ways, including lymphoma, assessed by PET/ Ask if the journey was PET/CT scanning. CT scan, can be used to worth it determine who would benefit After any trip, you probably The FOLL12 study selected from maintenance therapy reflect on whether it was a score known as FLIPI2 to and what maintenance worthwhile, if you would go define high risk follicular regimen to use. This study back and what you would do lymphoma, and PET scanning is open to recruitment and differently if you went again. and ‘minimal residual results are not yet available. disease’ (MRD; no evidence In research terms, FOLL12 of follicular lymphoma in It is now time to go has certainly provided some the bone marrow) to assess on your journey! valuable results. Unpublished response to initial treatment. data have confirmed that Together, these measures The FOLL12 study opened FLIPI2 and PET scan results are a strong predictor in July 2012. Interim results after four cycles of treatment of outcomes in follicular were presented at the are independent predictors lymphoma. The FOLL12 study International Conference of response to treatment in aimed to find out if they on Malignant Lymphoma in follicular lymphoma. However, can be used to determine June 2019. Surprisingly, these there remains a need for better whether or not maintenance results showed that ways of identifying therapy is necessary for outcomes in the people with high risk people who respond well to response-adapted We need better disease in order initial therapy for advanced, arm of the study ways to identify to improve the high risk follicular lymphoma. were not as effectiveness of people with high This approach is known as favourable as treatment. outcomes in the risk disease. response-adapted treatment. standard treatment In conclusion, Prepare for your trip and arm, in which treatment of follicular check the forecast everyone received the lymphoma should be based It’s always wise to research same maintenance therapy on the specific needs of where you’re going so you regardless of their response each individual. Most people have an idea of what you to initial treatment. This have low risk disease and it is might expect when you get suggests that a complete important that treatments do there. Of course, however response to initial treatment, not do more harm than good. prepared you are, you might assessed by PET and MRD, meet unexpected surprises is not sufficient to omit With thanks to Professor Stefano Luminari, Professor of Oncology, along the way. maintenance treatment. University of Modena and However, it’s important to Reggio Emilia, Italy for To this end, the researchers note that these are interim reviewing this article. asked: has anyone tried a response-adapted approach De-intensifying treatment regimens in people to advanced follicular with low risk follicular lymphoma would be a lymphoma treatment before? valuable area for future research. LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2020 19
PERSONAL EXPERIENCE MY CANCER WITH THE STUPID NAME Dwayne talks about his diagnosis of mycosis fungoides I had no idea of As part of the creative want to get them checked the impact that trip writing section of my out as it could be alopecia to the barbers university degree, I was (spot baldness, often on the would have. scalp).’ I decided to see my asked to write about GP who checked me over and something that had told me it was probably just impacted on my life. That an allergic reaction to a kitten wasn’t difficult for me… we had recently taken on. we went back, but I told her she didn’t need to come into the Five years ago I was 25, living Over the next 3 or 4 weeks, consultation with me. I wouldn’t a family life with a partner the patches of hair got worse be long and it would be nothing and her daughter and I and it looked like a UFO had to worry about. Little did I know! had a full-time job. come down and made crop circles on the top of my head. I was diagnosed with stage 1 I desperately needed a My doctor referred me to mycosis fungoides or MF for haircut, so headed to my a specialist at the hospital short. It was explained to me barbers. At the time I had who took a biopsy from my that it is a type of lymphoma no idea of the impact of shoulder and told me to come that affects the skin. Because it something he said to me: back in a couple of weeks' was early stage and not affecting ‘You have really thin patches time for the results. My my health, no treatment was of hair, Dwayne. You might partner came with me when necessary at diagnosis. 20 Lymphoma Matters Spring 2020
Find out more about cutaneous (skin) lymphoma at lymphoma-action.org.uk/SkinLymphoma PERSONAL EXPERIENCE I kept going back to the hospital for check-ups and reviews and over time I had about seven or eight biopsies. It came to the point when I was told that they wanted to do five sessions of radiotherapy over 5 days. This was when it really hit me. They said they would need to make a metal plate for the bottom of my back. I joked: ‘Like Robocop?’ But sadly it was far less cool than that; it was a metal plate in the shape of the top of my bum and back. They needed to make a metal plate to protect me I found the five sessions of radiotherapy OK; they involved during radiotherapy. a fair amount of waiting around, and then me lying down while I pictured 'Robocop' but a large machine zapped me through a hole in the plate that was made for me. in reality it was far less cool. The patches went down and, whether it was coincidence or part of the treatment, my hair grew back, which was massive for me. Since then, I have only needed to go for regular check-ups. If you would like to talk to For quite a while, I was able to put it to the back of my mind, someone about but over time I have realised that emotionally it has affected how lymphoma has me far more than I really acknowledge. If I feel unwell at any affected you, why point – and recently when I had back pain – my first thought not call our Helpline, Dwayne is about my lymphoma, and I feel it will available Monday to always feel present in some way. Friday, 10am to 3pm, on 0808 808 5555. DID YOU KNOW? Cutaneous (skin) lymphoma Skin lymphomas start in the skin. They are often difficult to diagnose as they can resemble other more common skin conditions. Skin lymphomas differ from other types of low-grade non-Hodgkin lymphoma because treatments are often topical (applied to the skin) rather than systemic (affect the whole body). There are lots of different types of skin lymphoma. Most develop from T cells, with the most common being mycosis fungoides. They are typically chronic (long-term) conditions and are not usually life-threatening. LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2020 21
MEDICAL OPINION Understanding blood tests Blood tests provide important information about how your body is responding to the lymphoma and its treatment. 22 Lymphoma Matters Spring 2020
Patient.co.uk and the NHS website have more information on blood tests. MEDICAL OPINION We have received a number of enquiries asking for more information about blood tests, why they are done and what the results tell us. In this article, we hope to answer some of these questions. You are likely to have regular responding to the lymphoma when they look at your blood tests as part of your and its treatment. If you blood test results to decide diagnosis, throughout your are in follow-up, you are what the results mean for treatment and as part of likely to have blood tests you. Factors they might your follow-up. at your check-ups but less consider include results from frequently than you did other tests and knowledge Blood tests are done to: • help diagnose a few types of lymphoma (a biopsy is before. The lymphoma and its treatment can cause frequent changes in your of any medical conditions you have. They can explain what your test results needed to diagnose most blood results. Your blood mean and don’t be afraid lymphomas) • find out more about the lymphoma before test results should be more stable when you are in follow-up, so less frequent to ask your medical team if anything about your results concerns you. treatment is planned • check your general health before or during treatment tests are needed. What do my blood test What is a ‘reference range’? • assess how your treatment is affecting you results mean? Your medical team should When blood test results come back from the • check whether you have recovered enough from one tell you if your blood test results are normal or if laboratory, they are reported together with a ‘reference range’ (or ‘normal range’). cycle of treatment before there are any problems. Most people’s results are starting the next one You can ask to see your • monitor the lymphoma and your general health during results, but they can be difficult to interpret. Do within the reference range. Around 1 in 20 healthy people have results outside the follow-up after treatment not be alarmed if your test reference range. Many factors and during any periods of results seem to be outside can influence your blood test active monitoring (or the reference range. Many results, for example, age, sex 'watch and wait'). people have results outside or ethnicity. the reference ranges that are Blood tests are done not a cause for concern. Your Lab Tests Online have frequently as part of medical team consider your information on reference diagnosis and treatment. individual circumstances ranges for common blood They are useful in giving your medical team Don't be afraid to ask your medical team important information if anything about your results concerns you. about how your body is LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2020 23
MEDICAL Lab Tests Online have information on reference ranges at labtestsonline.org.uk OPINION Figure: The different blood cells that develop from stem cells New blood cells are released from the bone marrow into the bloodstream. tests. However, blood tests of each type of blood cell is in the blood. Haemoglobin are not done in the same often called the ‘count’. is a protein in red blood cells way in all laboratories. that carries oxygen around Blood cells are made Laboratories might the body. Further tests on from blood stem have slightly You can ask to the blood, such as what the cells in your bone different ranges, see your blood blood cells look like under marrow (the use different tests, but they the microscope, can give spongy tissue techniques can be difficult other useful information. in the centre of or might use to interpret. your bones). Stem Possible low blood counts different units to cells are basic cells include: report their results. Your medical team are best placed to advise about that can develop into more specialised cells. Blood • anaemia – a low count of red blood cells or a low level stem cells can become: of haemoglobin in the blood your blood test results as they know your individual circumstances. • red blood cells, which carry • thrombocytopenia – a low platelet count • oxygen around your body Blood tests used for • platelets, which help your blood to clot, preventing neutropenia – a low count of a type of white blood people with lymphoma bruising and bleeding cell called a neutrophil. There are many different blood tests used for people • white blood cells, which fight infection as part of Other types of white blood cell might be low too. with lymphoma. The most your immune system. common is the full blood You can develop low blood count. Why is the full blood counts for several reasons: The full blood count (FBC) is a test that measures how count done? A FBC checks for low blood • lymphoma in your bone marrow takes up space many blood cells there are counts. It also measures how needed for healthy blood in your blood. The number much haemoglobin there is cells and blood stem cells 24 Lymphoma Matters Spring 2020
Find out more about blood tests at lymphoma-action.org.uk/BloodTests MEDICAL OPINION • some treatments stop your bone marrow from working of treatment. If your blood counts are too low, your have Waldenström’s macroglobulinaemia properly as they affect both lymphoma cells and healthy treatment might be delayed until they recover. Your blood • levels of abnormal proteins in your blood, blood stem cells counts usually recover on measured by serum • some types of lymphoma cause antibodies to form their own in time but some people are given supportive protein electrophoresis, if you have Waldenström’s that attack your own treatments like growth factors macroglobulinaemia healthly blood cells; this is called ‘autoimmunity’. to help boost blood counts. • your blood group (if you need a blood transfusion) If you have low blood counts If you are having a newer drug that you take every • if you have signs of an infection, which can be day, you have regular blood due to the lymphoma, measured by the CRP level tests to check how you are treatment for the lymphoma or from a blood culture responding to the treatment. can help your blood counts (growing any bacteria in recover. Monitoring your What other blood tests your blood) blood if you are on ‘watch and wait’ can help your are used? Many other blood tests • if you have or have had a viral infection that medical team decide when are used for people with could be related to you need to start treatment. lymphoma. For example, the lymphoma or that they can be done to find out: could flare up while your The FBC is a very important • immune system is low blood test when you are how well your liver and (viruses such as HIV, on treatment as most kidneys are working • hepatitis B virus, hepatitis treatments for lymphoma whether you have any C virus, cytomegalovirus, can cause low blood counts. signs of inflamation – this or Epstein–Barr virus). These treatments include is done by measuring chemotherapy, antibody substances in the Your medical team might therapy and many targeted blood, such as lactate suggest other blood tests drugs. Radiotherapy does not dehydrogenase (LDH) or depending on your individual usually cause low blood counts C-reactive protein (CRP) circumstances. unless a large area of your bone and by measuring the Patient.co.uk and the marrow is being treated. erythrocyte sedimentation NHS website have more rate (ESR) information on blood tests. If you are having chemotherapy or antibody therapy, your blood counts • your plasma viscosity (PV) (the thickness of Lab Tests Online has an index with more detailed usually begin to recover your blood) – this is an information on many a week or two after each important test if you different blood tests. treatment. Your medical team monitor your FBC after Acknowledgements: With thanks to Dr Bhupinder each treatment to make Sharma, Radiology Consultant, The Royal Marsden sure your blood counts are Hospital NHS Foundation Trust, London, for reviewing at a safe level for you to this article. This is an edit of detailed information which have your next planned dose can be found at lymphoma-action.org.uk/BloodTests LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Lymphoma Winter Matters 2018/19 Spring 2020 25 19
PERSONAL EXPERIENCE ‘The past is a foreign country; they do things differently there.’ LP HARTLEY I’m not the same person I was before my diagnosis of Burkitt lymphoma – KATHLEEN I have been in remission from Burkitt had a rare cancer that my medical team had lymphoma, a type of high-grade non- not treated before. As for me, I had barely Hodgkin lymphoma, for over 12 years. heard of the word ‘lymphoma’. Looking back, I walked into hospital relatively fit but left, What had started as backache and a several months later, bald, feeling lousy and lump in my armpit, saw me referred incapable of walking unaided. to my local hospital. I had been told my lymphoma was aggressive I had a series of meetings with consultants and would be treated aggressively with full- and many tests later was told I had time stays in hospital, where I would be given lymphoma, but that further tests were R-CHOP chemotherapy and methotrexate. needed to identify the exact type. Unfortunately I had a reaction to the latter, On 4 November 2006, I was diagnosed endured C. difficile and developed sepsis, with Burkitt lymphoma, stage 4. which was life-threatening and reduced Venturing into the unknown was my mobility significantly. frightening, especially when I was told I I had tubes, cannulas, Hickman® and PICC 26 Lymphoma Matters Spring 2020
Read more about Burkitt lymphoma at lymphoma-action.org.uk/Burkitt PERSONAL EXPERIENCE lines for chemotherapy. There were tubes The real highlight was on 23 April 2007. I to feed me and catheters to remove had braced myself for the worst, so it was urine. I was unable to get in or out of actually a shock when I was told I was in bed. I could not clean, wash and dress remission. I still celebrate myself, or feel my feet. I needed help for this date. the most basic of tasks. I could no longer While my read, concentrate or sleep. Worst of all While my treatment had treatment had was the inability to enjoy food and the finished, my finished, my continuous nausea. recovery had recovery had only The most overwhelming feeling only just begun. just begun. throughout the process was fatigue. The question I had Clinical staff warned me about this, but to face was how to in all honesty, I don’t think they really move on from feeling understand how debilitating this can be. I ‘institutionalised’ to returning to the ‘real remember my sister and her son visiting me world’ and adapting to a ‘new normality’. in hospital and not having the strength to reach out and put on my glasses. Without To help with this, I received support from being able to see them, I was unable to specialist nurses and had regular check-ups communicate with them effectively, and with my consultant over 5 years. that memory still haunts me. I became a member of a Lymphoma Action Despite enduring the treatment, there Support Group and am a Buddy. I am were a number of things that have also a member of the Reader Panel that stayed with me: ensures the organisation’s information is easily understood. This has kept a link • the incredible support offered by my late husband, family and friends which has helped me stay informed of latest developments in treatments for • the wonderful care and consideration I received from my medical team lymphoma. At a local level, I have been a cancer buddy for over a decade at the •• the honesty of my consultant living on banana milkshakes, ice-pops hospital that saved my life. and the picnics provided by my late Cancer changed me in a variety of ways: husband hair loss, scarring, weakened muscles and • the joy of having a shower for the first time in many days lack of feeling in toes and fingers. I had got into habits that still continue, like wetting • certain TV programmes that still remind me of my time in hospital. I my head under the shower as I did when I had no hair. These are minor concerns can’t watch ‘Strictly Come Dancing’ in comparison with the emotional and without thinking about chemotherapy. mental problems I have faced. There is the frustration of not being able to do things I could do before. Some of this I have put The most overwhelming down to ‘chemo brain’, which causes me problems with concentration and with feeling throughout the finding the correct word. Surprisingly process was fatigue. though, I have become more creative and LymphomaAction LymphomaAction www.lymphoma-action.org.uk Lymphoma Matters Spring 2020 27
PERSONAL Find out more about side effects of lymphoma at lymphoma-action.org.uk/SideEffects EXPERIENCE enjoy many crafts that I would not have number of companies who would provide tackled in the past. travel insurance, albeit after some detailed questioning about my pre-existing medical Because my immune system was condition and at an increased price. compromised when I was being treated, I have become paranoid about infection One important message I have is the control; I hesitate to shake hands need to care for carers. Family and with people and nothing is friends have to master their own designed to infuriate me more Cancer impacts fears. Cancer impacts upon than someone sneezing close upon whole whole families, friends and by, even after all these years. communities. Relationships families, friends can change. Those that matter If I have aches, pains or and communities. continue as before; others may unexplained lumps, I do not change beyond recognition. hesitate to see my doctor. No, I am not turning into a Having undergone treatment for hypochondriac, but I am only too well cancer, I have changed as a person and, aware that cancer generally needs to be I am told, am more sensitive to others identified quickly and I do not propose to experiencing difficulties. It has also take any chances. reaffirmed my belief in the importance of gratitude and living life Kat hleen Travel was important to me before cancer to the full. so I was delighted to discover there were a DID YOU KNOW? More about Burkitt lymphoma Burkitt lymphoma is a very fast growing type of high-grade • It develops from B lymphocytes (white blood cells that fight infection). non-Hodgkin lymphoma. • It is uncommon – about 250 people • Symptoms often develop quickly, over just a few days or weeks. are diagnosed with Burkitt lymphoma every year in the UK. • Treatment usually begins very soon after diagnosis with a combination • It is the most common type of non-Hodgkin lymphoma in children, of strong chemotherapy drugs and antibody treatment rituximab. • although it can occur at any age. It affects about three times more • Most people stay in hospital for most or all of their treatment, which men than women. can take several months. 28 Lymphoma Matters Spring 2020
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