Blood Cancer Awareness Month success
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Ask the CARE Line
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Roy Chinery: My big lucky break
We are people that can Read more about how Thea was diagnosed after noticing severe bruising over her body
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WINTER EDITION 2015 www.leukaemiacare.org.uk
WELCOME
Welcome! Welcome to the latest exciting edition of Journey!
What we do Our support services
Coming up, we have information on neutropenia, which you may’ve experienced following treatment for your blood cancer, and the neutropenic diet which can help to protect the body from bacteria and other harmful organisms found in some food and drink.
• 24-hour CARE Line • One-to-one buddy support • Patient and carer conferences • Informative website • Information booklets
Also in this issue, we’ve got information on acute promyelocytic leukaemia (APML), written by Dr Richard Kelly, Consultant Haematologist at Leeds Teaching Hospital and Dr Clare Kane, Haematology Registrar. Our Head of Campaigns and Advocacy, Zack PembertonWhiteley, will be sharing an update on our eLearning course for GPs and you can find out about the success of Blood Cancer Awareness Month as well as a news update about the delisting of drugs by the Cancer Drugs Fund (CDF) and what it means for patients. As usual, we’re bringing you three inspirational stories written by patients themselves.
See you next time!
Christopher Matthews-Maxwell Chairman
• Online LiveChat • Cancer campaigning and patient advocacy • Support groups
Merry Christmas from Leukaemia CARE 2015 has been another successful year for Leukaemia CARE. Thanks to the hard work and efforts of everyone involved, we continue to provide around the clock support to anyone affected by blood cancer. Whether you are surrounded by family or on your own this Christmas we are here for you 24/7, even on Christmas Day on 08088 010 444. From all of us at LC, we wish you a Merry Christmas and a Happy New Year. See you in 2016!
IN THIS ISSUE...
Page 3 – Our news Page 4 – ‘What is...?’ Page 6 – Inspirational story: Thea Wilson (APML) Page 8 – Early diagnosis saves lives Page 9 – Ask the CARE Line Page 10 – Fundraising news Page 12 – Inspirational story: Roy Chinery (AML) Page 14 – The neutropenic diet Page 16 – Inspirational story: Alannah Roberts (Hodgkin lymphoma) Page 18 – Support groups
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Ask the CARE Line
P.6 Thea Wilson (APML)
Leukaemia CARE 2015. 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 journey does not necessarily mean that Leukaemia CARE endorses the company, product or service advertised. Registered Charity No. 259483, Scottish No. SC039207
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Winter 2015 www.leukaemiacare.org.uk
NEWS
Our News Campaigns and advocacy
New patient booklet!
It is with great sadness to announce that Tony Gavin, Director of Campaigns and Advocacy and ex-Chief Executive has retired from the Leukaemia CARE team after 11 years with the charity. He will continue as a Vice President of Leukaemia CARE and be involved in specific projects in cancer campaigning, but he will truly be missed – his knowledge, passion and personality have been a huge part of the identity of the charity for many years. Zack Pemberton-Whiteley has since taken over as Head of Campaigns and Advocacy and welcomes Sophie Phillips who has joined us as our Campaigns and Advocacy Officer. Great to have you on board!
Dates for your Diary - 2016 12
MARCH
Edinburgh patient and carer conference
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JUNE
London patient and carer conference
(run jointly with the Lymphoma Association)
Date: Saturday 12th March 2016 Location: Marriott Hotel, Glasgow Road, Edinburgh Time: 10am - 4pm
Date: Saturday 11th June Location: Holiday Inn, Regent’s Park, London Time: 10am – 4am
Further information on the speakers and how to book will be released soon, so keep your eyes peeled!
Cancer Drugs Fund update
Our new booklet, step-by-step on chronic lymphocytic leukaemia (CLL), is now ready to order. If you’d like a copy, you can call the CARE Team on 08088 010 444 or download via the website www. leukaemiacare.org.uk/resources.
New faces at Board level
We would like to welcome and introduce our newest addition to our Board of Trustees. Gillian Thomas will bring a new insight to our Board with real-life experience of caring for someone with a blood cancer. When her husband, Nick, was diagnosed with myeloma, Gillian and Nick campaigned extensively with the help of charities like Leukaemia CARE for access to a myeloma drug that wasn’t previously funded in Wales. Gillian will join the rest of our Board in providing strategic direction of the charity and overseeing the governance of the organisation. Our long-serving Chairman, Albert Podesta, has also stepped down to Vice-Chairman, with our previous Vice-Chairman Christopher Matthews-Maxwell, taking up the post of chairman. We wish you all the best!
The Cancer Drugs Fund (CDF) was created to enable cancer patients in England to access innovative treatments which are not routinely available to them on the NHS. On November 4th 2015, a number of blood cancer drugs were removed from the CDF’s approved funding list and are no longer routinely available to patients. As a result, thousands of cancer patients will now miss out on life-extending cancer treatment. These changes do not affect patients who are currently receiving these treatments via the CDF - they will continue to receive it for as long as their clinician feels they will benefit from it. However, these changes do impact on the availability of these treatments for new patients. For more information visit the news section on our website. Alternatively, if you are affected by these changes and would like to speak to somebody about it, please call our CARE Line on 08088 010 444.
Celebrity Ambassador joins Leukaemia CARE We are delighted to announce that actor and television presenter, Andrew Hayden-Smith, has become a Celebrity Ambassador for Leukaemia CARE. After supporting us during Blood Cancer Awareness Month, Andrew is passionate about raising awareness of blood cancers and their symptoms after his father was diagnosed with leukaemia in July 2014. To kick things off, Andrew has chosen to run for us in the 2016 London Marathon and will be taking part in our skydive day in June 2016. He is also keen to make appearances at some of our patient and carer conferences and support groups and will be getting involved in awareness-raising work and events over the next 12 months.
CARE Line 24-hour freephone 08088 010 444.
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WHAT IS... ACUTE PROMYELOCYTIC LEUKAEMIA?
What is... Acute promyelocytic leukaemia?
Acute promyelocytic leukaemia (APML) is a rare form of leukaemia with approximately 170 people diagnosed in the UK each year. Here, Dr Richard Kelly, Consultant Haematologist at Leeds Teaching Hospital and Dr Clare Kane, Haematology Registrar tells us more about it. What is APML? Acute promyelocytic leukaemia (APML) is an aggressive type of blood cancer affecting the white blood cells, which don’t mature properly. It is a subtype of acute myeloid leukaemia (AML) but it behaves slightly differently to AML. People affected by APML undergo a genetic change where two of their genes are joined together. This involves the ‘swapping’ of chromosome 15 and 17 to form a new fusion gene called PML-RARA. This genetic change or mutation stops the early, immature white blood cells from developing into mature ones; the cells’ development is stopped at the stage where they are called ‘promyelocytes’, hence the name of the illness. It is not known what causes APML to occur. The genetic change that occurs is not inherited but instead is acquired during a person’s lifespan.
Who does it affect? APML is a rare disease, and accounts for approximately 10% of all AML diagnoses. It is thought to affect around 0.6 in every 1 million people, which is approximately 170 people a year. Men and women are affected equally with the average age at diagnosis around 40 years old.
What are the signs and symptoms? In APML, the bone marrow cannot make blood cells properly, leading to symptoms which include: •• paleness •• feeling tired and breathless •• chest pain •• frequent infection due to lack of white blood cells to fight germs properly •• higher risk of bleeding or bruising under the skin (often called petichiae) as blood clotting capability is affected •• bleeding symptoms – bleeding from the gums, any open wounds, or from the gut
How is it diagnosed? Blood tests A test called the full blood count (FBC) will be carried out where a small amount of blood will be taken from a vein in the arm. The blood is then looked at down a
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microscope, and the characteristic abnormal cells are seen. If APML is suspected, treatment is started straight away, whilst further tests are performed, due to the risk of bleeding and clotting problems.
Bone marrow biopsy A bone marrow biopsy is performed to obtain more information about the disease. This involves taking some of the liquid bone marrow and a small piece of bone from the pelvis, and is performed under local anaesthetic. The abnormal gene can therefore be looked at in more detail, as can any other problems with the cells. This will help to differentiate APML from other leukaemias, as the treatments are very different.
Treatment for APML ATRA When the diagnosis of APML is suspected, treatment with a drug called ‘all-trans retinoic acid’ or ATRA is started. ATRA is not a chemotherapy drug. It works
Winter 2015 www.leukaemiacare.org.uk
The main side effect from ATRA is called ‘differentiation syndrome’ characterised by fever, breathing problems, weight gain and hypotension. This is uncommon but can cause lung and kidney problems. If this happens, steroids are given and the ATRA may need to be stopped until symptoms improve.
Chemotherapy Once APML is confirmed, or sooner if the white cell count is very high, chemotherapy is started. This is usually given in hospital for the first cycle, although it can be given as an outpatient on the day unit after that. Normally four cycles of chemotherapy are given to ensure the disease is fully treated.
Drug treatment If the APML recurs, or if the chemotherapy is not tolerated, then an alternative treatment using an arsenic based drug called arsenic trioxide (ATO), is also a very effective second-line therapy.
WHAT IS... ACUTE PROMYELOCYTIC LEUKAEMIA?
by overcoming the block in the maturation of the leukaemia cells, allowing them to grow up, or mature into white blood cells. The cells are still cancerous, but they will die rather than cause any more problems. This helps to normalise the way the blood clots. In the early stages of the disease, patients often need blood and platelet transfusions, along with infusions of plasma, to correct the clotting problems.
Coping with a rare condition Help and support does exist for anyone who has been diagnosed or affected by APML. Seeking help can make your experience a little easier to cope with. There are a number of helpful sources including: Your haematologist and healthcare team • Family and friends • Reliable online sources such as Leukaemia CARE •
We also run a 24-hour CARE Line which you may find useful if you want to talk about your diagnosis or treatment. You can also talk to our Nurse Advisor, who is available to provide confidential advice, answer queries and give support from a clinical perspective at what can be a worrying time.
You can speak to our Nurse Advisor every Wednesday or Friday from 7:30pm-10:30pm on 08088 010 444.
Prognosis of APML APML is very sensitive to chemotherapy drugs and chances of a cure are high with more than 90% of those treated surviving five years after treatment. If the disease does relapse, then second-line treatment is also very effective. One of the main challenges in treating APML is how best to manage patients in the early stages of the disease, as people can be extremely unwell at presentation. This is due to bleeding and clotting problems and haematologists need to treat patients during this time with clotting products as a matter of urgency.
You may find it hard to ask or talk about your prognosis at first, but everyone is different. Your healthcare team are there to help you, so even if you find it difficult at first, you may find it easier to talk about it once the news has settled in. You can speak to them at any time about what information you’d like to know. If you have questions about your diagnosis, treatment or outlook, remember you can also call us at any time on 08088 010 444.
CARE Line 24-hour freephone 08088 010 444.
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INSPIRATIONAL STORY
Thea Wilson:
We are people that can Thea Wilson was diagnosed with acute promyelocytic leukaemia (APML) after noticing strange bruising that was initially thought to be a completely different condition. Here, she tells us her story. I didn’t believe that the nurse walking over in my direction was actually heading towards me. My GP had reassured me that my colourful, bruised limbs were due to idiopathic thrombocytopenic purpura (ITP), a disorder that can lead to easy or excessive bruising and bleeding, and that I’d munch my way through a large dose of steroids, develop ‘moon face’, fidget a lot and I’d be fixed. I had even searched for my symptoms on Google and diagnosed myself with this. I’d be back to normal in a couple of months. Job done. The 4th December will forever be etched in my memory. My clinical nurse specialist and soon-to-be doctor sat me in a quiet room. My mum and my very good friend were both with me as the news was delivered very pragmatically by the doctor and with a massive sprinkle of empathy and kindness from the lady in blue. Lots of things were thrown at me in a short amount of time but the sentence I clung on to was, ‘We are awaiting confirmation, but the type of leukaemia we think you have carries a high cure rate. We should know by the morning.’ I remember thinking, ‘Please, please let it be that one.’
Many thanks to Meg Hawkins Photography www.meghawkins.co.uk
With a diagnosis of APML confirmed, my new life as a cancer patient had started. PICC line in, first chemo in and I had only been there less than 24 hours. I had no idea at this point as to how sick I was, I was totally focused on the end goal, getting better.
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My room quickly became colourful and full of stuff. I had books, movies, cards to read and a huge array of wonderfully smelling hair stuff that a friend had kindly brought in. I looked at him when he gave it to me and said, ‘But it’s all going to fall out.’ His reply was, ‘Babe, if it’s coming out, it’s going to look fabulous as it departs.’ That same day I asked him to help me get rid of my ponytail, as I wanted it to be donated to the Little Princess Trust. He cried and I told him to man up. My life has always been about numbers and achieving, so after counting the days, weeks, months, cycles and doses, I had deduced I’d be done by Easter. My body just wasn’t working. Every day I wished my blood results would come back showing an increase in its counts, but no. I heard the
Winter 2015 www.leukaemiacare.org.uk www.leukaemiacare.org.uk
Finally the day came and I was discharged to the care of my mum. I was 37 years old and allowed home under the proviso I was careful, I didn’t do anything I shouldn’t do and that I took a whole heap of medications. Antivirus, antifungal, antibiotic, anticancer, antibleeding, antihormone, anti everything! Coming out of hospital was terrifying. I was scared of everything but each day was a day closer to recovery, I had to think like that.
Coming out of hospital was terrifying. I was scared of everything but each day was a day closer to recovery, I had to think like that. I mostly behaved but had a few minor mishaps; I fell over a Labrador, split my knee open, had stitches, cut myself on a piece of glass, walked, jogged, ran a few times but I was quickly reminded that I should be planning the rest of my life not my next run. Lesson learnt.
I was lucky enough to have my further treatments as an outpatient. I baked and smiled my way through the next few months; my mum’s baking cupboard had never seen so much action!
INSPIRATIONAL STORY
rumble of the trolley as it headed towards my door and was then hooked up for hours to pumps and lines, delivering life-saving blood products including platelets and plasma. I passed this time by cycling on a stationary seated bike I had acquired from the physiotherapy department, drinking tea and watching inane episodes of American soaps. My mum visited me everyday and sneaked in homemade soups and treats. On Christmas Day my sister brought in the best turkey and cranberry sandwiches and my friends filled my fridge with huge amounts of chocolate. I developed a penchant for Babybels and a dislike for anything that was presented to me on a hospital plate.
Next on the agenda was treating the PML RARAfusion gene created by the translocation of chromosome 15 and 17 (see ‘What is APML’, page 4). I wanted a negative PCR test. This finally came in February and the weeks of vile treatment was now all worthwhile. My doctor announced I was in molecular remission and I could celebrate. I rang everyone I knew and was desperate to get out of the hospital to tell the world. I had one final cycle of treatment to go and this was delivered on the 13th March. I was lucky; I’d made it, still smiling and undefeated. Life now is still turbulent. Every 12 weeks I check myself into the unit as a patient, I take a deep breath as they draw the bone marrow aspirate, I forget the pain and think of all the things I still have to do. I compartmentalise the action and the potential consequence. This 12-week cycle is my life for the next few years. Nothing has changed. I still do what I want to do. Within six weeks of completing my treatment with the help of my fantastic family and friends, I fulfilled my promise to the unit and hosted a massive party called the Wig Bash raising over £7,500 for the department. I have climbed two of the UK’s biggest mountains, I have gone back to work and am loving every minute of my job - plus I can knock out a decent 10k time. This is who I was before the cancer and I refuse to let this disease change me. We are people that can. We are human, fight or flight, and I choose fight.
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CARE Line 24-hour freephone 08088 010 444.
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GUEST ARTICLE
Early diagnosis saves lives To mark Blood Cancer Awareness Month in September, we launched our online training course to support GPs in recognising the symptoms of a blood cancer to aid early diagnosis. Here, our Head of Campaigns and Advocacy, Zack Pemberton-Whiteley, explains more. We have developed two 30-minute online learning and training modules in partnership with the Royal College of General Practitioners (RCGP), which will support GPs by helping them to diagnose blood cancers sooner.
Why are we doing this? UK survival rates (for both one-year and five-year survival) for cancer lag significantly behind the European average. One of the main reasons for this is the later stage of diagnosis in the UK. If the UK survival rates for blood cancer could catch up with the European average, an estimated 1,000 lives could be saved each year.
Why are blood cancers not being diagnosed earlier? Although blood cancers together are the nation’s fifth largest cancer threat and third biggest cancer killer, it is still relatively rare. In fact, GPs on average may only see a case of blood cancer every one or two years. Diagnosis can be also made harder due to the fact that many of the symptoms of blood cancer can be vague and non-specific, often occurring in more common and less serious illnesses, which mean GPs have an extremely difficult job to do diagnosing blood cancers in the early stages.
What are we doing to aid earlier diagnosis? Because of the crucial role GPs play in diagnosing blood cancer early, we have developed these modules to help GPs to better understand and recognise the symptoms of blood cancers and identify potential cases of blood cancer earlier. Our online resource is designed to equip GPs with the knowledge to spot blood cancer earlier and refer patients for appropriate specialist tests and treatment if a blood cancer is suspected. We have also been promoting this project to healthcare professionals and urging members of the public to tell their GPs about the training resource and encourage them to take it. Early diagnosis is a fight on two fronts. We hope that this project will both improve awareness of blood cancers and improve outcomes for patients by ensuring they are referred for tests and treatment earlier.
Our GP training course by the numbers…
1,000 lives a year could be saved by diagnosing blood cancers earlier (if UK survival rates could catch up with the European average)
155
GPs have enrolled onto our course (as of 28th October 2015)
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You can find out more about this visiting our weby www.leukaemia bsite ca org.uk/GP- re. training
Since Blood Cancer Awareness Month...
700
511
GPs viewed our training course video
flyers taken to GPs
42 million
177
pieces of media and radio coverage
people reached through media coverage
Clear improvement in GPs’ knowledge of blood cancers after taking the course shown in the pre-course and post-course assessments
Winter 2015 www.leukaemiacare.org.uk
Our CARE Line is here for you 24/7, where there is always someone to talk to about the things that matter to you.
Ask the CARE Line
Ask the CARE Line For answers, support or just a chat, call us on 08088 010 444 or email
[email protected]. With thanks to Nickey Bate and Zelma Hunt, CARE Line Advisors
Q.
My friend’s young son has just been diagnosed with a form of leukaemia and recently started a course of chemotherapy. I am trying to help her by putting together a pack of information for her to take to hospital with her while he is having his treatment. Is there anything she can look at to help support her?
A.
It will be a very emotional time for your friend as her son is young, and it is difficult for family and friends to know what to say and how to help in a time like this. It’s normal to feel a range of powerful emotions for loved ones when their lives have suddenly been turned upside down. When someone you know is diagnosed with a blood cancer, it is normal to worry about what will happen. Whilst undergoing treatment, your friend may be assigned a CLIC Sargent social worker who works alongside the medical team to help with any emotional and practical issues for the family. If there are any other children in the family, friends and other family members could help with more practical issues for the family that include helping with the other siblings. Your friend will appreciate just having someone to listen. It helps to talk and offload about what is happening in their lives, and knowing someone is there and on hand to help. There is no right or wrong way to feel and there is no right or wrong thing to say. Your friend, her family and yourself may find it helpful to read one of our patient stories on our website at www.leukaemiacare.org.uk/inspirational-stories, to read more about others in a similar situation. We also have several information booklets that we can send you about issues that your friend may be facing through her son’s cancer journey. You can request resources by calling 08088 010 444 or email
[email protected].
Q.
I was told I had Monoclonal Gammopathy of Undetermined Significance (MGUS) a few months ago and I am having regular blood tests to check my cell counts and the protein levels in my body which have remained quite constant and stable. I know this is supposed to be good news but I feel as if I am still under threat and feel as if it is lingering over me, especially as I’m not being treated. I’m also worried because I haven’t told my family about my diagnosis but feel like I will be worrying them over nothing.
A.
It is good to hear that your protein levels are constant and your blood results have remained stable. It’s normal to feel how you are feeling. Learning to readjust your life to accept that you have this diagnosis can be a difficult and emotional process, especially as you feel as if you are in a state of limbo with not having any treatment. MGUS is not known to cause any symptoms, and does not generally affect your health. Because it does not seem to do any harm or cause problems, MGUS does not need treating. There may be a risk of about 1%-2% cases of MGUS developing into myeloma, however this is why your regular blood tests are a precautionary measure to help monitor you and shouldn’t be seen as something to worry about as it may never happen. Telling your family is something that only you can decide upon. It may be that they can already sense that there is something you are not telling them. It really does help to sometimes offload and have the support of people close to you and you can reassure them that you’re doing well. Our CARE Line is here 24/7 so even when you may be feeling anxious or are worrying about anything there is always someone there to talk to. Even if you want to practise what you want to say to your family beforehand, you don’t have to feel like you are going through this alone. her son’s cancer journey. You can request resources by calling 08088 010 444 or email
[email protected].
CARE Line 24-hour freephone 08088 010 444.
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OUR INSPIRATIONAL FUNDRAISERS
Our inspirational fundraisers Our fundraisers are amazing! They do incredible things to help raise money so we can provide support to people whose lives are affected by blood cancer. Here, we share some of what they’ve been up to. Inspired? If you’d like to get involved, just contact the fundraising team by emailing
[email protected] or call 01905 755977.
Blood Cancer Awareness Month success! September was Blood Cancer Awareness Month – a whole month dedicated to raising awareness of blood cancers and their symptoms – and what a month it was! Our activity this year was centred around one key message: ‘Early diagnosis saves lives’ and we launched our early diagnosis training course for GPs as well as our handy symptoms card. As with many other cancers, the earlier blood cancer is picked up and diagnosed, the better the treatment outcomes are. Thanks to your help, 1,829 people received our symptoms cards; we reached over a million people on social media and sent out more than 700 of our Be Blood Cancer Aware ribbons. This Blood Cancer Awareness Month has been a successful one, but our work doesn’t stop at September. We’ll be continuing to help raise awareness of the symptoms of blood cancers as well as providing support for anyone affected by blood cancer each and every year.
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Winter 2015 www.leukaemiacare.org.uk
OUR INSPIRATIONAL FUNDRAISERS
Go Gold for Kids Fun Run September was also Childhood Cancer Awareness Month and Leukaemia CARE teamed up with Hattie’s Heroes to bring you the Go Gold for Kids 2k Fun Run! The event took place on Tuesday 1st September and saw 300 children take part, painting the town of Leigh-on-Sea gold, and coming to a close with medals, goody bags, face painting and picnics. The inspiration behind Hattie’s Heroes, Hattie Seymour, came along as well. We would like to say a big thank you to everyone who took part and volunteers who got involved and helped to raise awareness of childhood cancers, such as leukaemia. We look forward to next year’s event!
Free falling for blood cancer To celebrate Blood Cancer Awareness Month, we put together a team of adrenaline junkies to take to the skies to fundraise and raise awareness of blood cancer. The event took place on Sunday 20th September, at Hinton Airfield, Brackley and saw each daredevil fundraiser being flown to 13,000ft to do the tandem jump and raise money for Leukaemia CARE. In total, £4,890 was raised from the day.
CARE Line 24-hour freephone 08088 010 444.
Wigan score big
The Leukaemia CARE Fundraising Team and local volunteers joined Wigan Athletic Football Club during their Sky Bet League match against Fleetwood Town Football Club. The match was dedicated to Honduras international defender, Juan Carlos Garcia, who is continuing his treatment for leukaemia. Players of both teams warmed up in Leukaemia CARE t-shirts while bucket collections took place. Also during the day, Chairman David Sharpe announced that the club would match the money raised by the FuerzaJCGarcia group, who organised a legend charity match in July. Stars from the past took to the pitch for the game, playing against a side made up of supporters. 21-year-old Danny Taberner, a Latics fan has himself recently come through a cancer battle, which meant he missed the club’s FA Cup triumph in 2013. Fortunately, he has made a remarkable recovery and was onhand to score one of the goals for the fans’ side. A cheque was presented for £2,386.14 to Leukaemia CARE on the pitch at half-time in September.
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INSPIRATIONAL STORY
Roy Chinery:
My big lucky break Roy was diagnosed with acute myeloid leukaemia (AML) after several trips to his GP and many calls to his emergency doctor. Now, Roy is celebrating 25 years post stem cell transplant and is thankful for seeing not only his children grown up, but also the births of four grandchildren.
Many thanks to Derek Anson Photography www.derekanson.com
In December 1989, at the age of 32 life was good. I was happily married to Kim with two young children; Carla, aged seven and Alex, aged five. Suddenly I began to feel unwell with flu-like symptoms and began to deteriorate very quickly. I was badly let down by my GP, who I hadn’t visited for around two years, who insisted I had a stomach bug. After several more visits over the next two weeks, I had become extremely weak, very thin, sweating badly and incapacitated. My wife called the emergency doctor out on the Friday evening, twice on the Saturday and finally once again on the Sunday. On the Monday, Kim took letters given to us by the emergency doctors to our GP, who read them with a shocked expression and told her a doctor would be round that day. When the doctor arrived it was clear that he knew I was seriously ill and rang for an ambulance to take me to an isolation ward at Rush Green Hospital. However, at the time there was an ambulance strike and in the end Kim ended up taking me there - carrying me to the car!
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Following tests at Rush Green, the doctor transferred me to The Royal London Hospital at Whitechapel where I was diagnosed with acute myeloid leukaemia (AML). I asked the doctor to be with me while I told Kim, as I was unsure of how she would react to the news. However, unknown to me, she had guessed after speaking to the doctors the previous evening as she had a friend who had had leukaemia when she was young. She was upset but it was not a surprise to her. Whilst waiting to be transferred to the ward, two very close friends arrived to wait with us. After their initial shock of the news and a couple of blood transfusions for me, they all sat about making light of the situation, telling jokes and making me laugh. Later on that evening when I was transferred to Croft Ward where I was introduced to the night staff and several other patients and waited to meet the doctors the next day. This is the first time I met Professor Newlands and although I did not know at the time, he was my big lucky break. He ran me through all the procedures and
what to expect from the minute I met him. I knew he was a man you could trust and was happy to put my complete faith in him. I went on to meet all the rest of his team and all the other ward staff who were all fabulous and filled me with confidence. It was at the hospital where we were also given the details of Leukaemia CARE as soon as I was diagnosed. My wife got in touch with them straightaway, where we were put in touch with one of their volunteers Ann Ashley who proved to be a great help.
It was at the hospital where we were also given the details of Leukaemia CARE as soon as I was diagnosed. My wife got in touch with them straightaway, where we were put in touch with one of their volunteers Ann Ashley who proved to be a great help. Winter 2015 2015 www.leukaemiacare.org.uk Winter www.leukaemiacare.org.uk
During this period I did have several problems but did somehow manage to get over them all and began the procedure for the transplant. I was taken into an isolation unit to have the final course of chemotherapy and total body radiotherapy. At this point I was probably
CARE Line 24-hour freephone 08088 010 444.
INSPIRATIONAL STORY
When I arrived at Rush Green, my blood counts were rock bottom and I had 95% leukaemic cells, which they told me was as close as I could have got to shut down. In the days that followed I had a hoard of friends and family visiting me, keeping my spirits up and giving me encouragement. After an extensive assessment of my condition, a course of chemotherapy was administered but unfortunately this first one did not quite go to plan and I had to start my second one sooner than was expected. In the meantime, they checked my five siblings and I was lucky enough to have two which were perfect matches to enable a bone marrow transplant. Eventually my sister, Carol, was chosen. The second and third courses of chemotherapy went well but it was decided not to go ahead with the fourth one due to problems with my liver.
at my lowest that I had ever been. I managed to rally round the night before the actual transplant when I had a surprise visit from Alvin Martin, one of my favourite players of my beloved West Ham United, which gave me a massive boost that you really wouldn’t have believed. I had a final visit from my sister who had come from Portishead the previous day, before she selflessly underwent the operation - even though she had suffered bad reactions to anaesthetic during previous ops. The bone marrow was transferred into me on the night of 7th June 1990 and I then spent four weeks in isolation which went well. At the start of all this I would have been happy just to see my two children get to teenagers but I have been lucky enough to not only see them grow into fantastic adults but see them both marry and both have children of their own. We now have four beautiful granddaughters which is something I did not expect to see. This summer we celebrated my twenty-fifth anniversary of the transplant with a garden party with our closest friends and family, and we have remained good friends with Ann Ashley – who doesn’t stop giving. Going through this experience was not all bad and I got to appreciate life, family and friends, got to see every game of the Italia 90 World Cup, was invited to a game by Alvin Martin to meet all the players before and after the match - which myself and my son loved. I would say that the help and support we received was a major factor in my successful outcome. At this point I owe a great debt to a lot of people who gave and continue to give us their love and support. I would really like to thank my sister, Professor Newlands and his devoted team on Croft Ward, all my friends and family for their help and encouragement and Ann Ashley from Leukaemia CARE’s Buddy Service for her many visits which helped me understand my family’s position through all of this. Also, thanks to Leukaemia CARE themselves who provided us with invaluable information and help for which I will be eternally grateful.
Ann Ashley was one of our passionate and dedicated volunteers who worked tirelessly to support patients and carers over the years. She is now one of our respected Vice Presidents and was formerly a member of our Board of Trustees. We still run our Buddy Service which can match you with one of our trained volunteers for regular or one-off telephone or face-to-face support. Find out more by visiting our website www.leukaemiacare.org.uk/one-to-one-buddysupport.
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THE NEUTROPENIC DIET
The neutropenic diet Blood cancer patients are at greater risk of developing neutropenia and picking up infections meaning that extra precautions should be taken to avoid exposure to any harmful bacteria. Here, Hannah Cunliffe, our Nurse Advisor, tells us more about the neutropenic diet, which can help to protect patients with weakened immune systems. What is neutropenia? Neutropenia is characterised by an abnormally low number of neutrophils within the bloodstream. Neutrophils form an essential part of the immune system and the body’s defence against infection. People who have been diagnosed with cancer or conditions that affect the bone marrow and/ or are receiving anti-cancer treatment such as chemotherapy face a greater risk of developing neutropenia and potential risk of developing an infection. Chemotherapy can be very effective in destroying cancerous cells, but it can also damage healthy cells and affect the function of important organs such as the bone marrow. Following chemotherapy, neutropenia is expected to occur between seven and 14 days following the treatment and although patients may not feel any different when they are neutropenic, it is important that they are aware of the risks.
Neutrophil levels If you become neutropenic as a result of your treatment, then you have a greater chance of developing an infection and find it harder for your body to fight it off. Normal neutrophil levels found in a sample of blood for an individual without neutropenia would be 2.5-6.5 (x109 neutrophils per litre.) You are considered to be neutropenic when your neutrophil counts are between 0.5-1.5 (x109 neutrophils per litre.). If your neutrophil count is below 0.5 then you are severely neutropenic.
The neutropenic diet If you are neutropenic you may be advised to follow a neutropenic diet, which is essentially a low bacteria diet. For many people this may cause some confusion when it comes to shopping for and preparing food, but if you need any advice on specific food items you should consult your medical team who may be able to help develop a diet plan for you.
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As a part of this diet, you will no longer be able to eat certain food products that you may have previously enjoyed. However, you shouldn’t be disheartened as there are ways to substitute certain food types so you can still have the nutritional benefit in your diet. The table opposite shows elements of your diet that should be avoided and possible substitutions to try. The area highlighted in red is additional advice for patients who have been told that they are severely neutropenic. You will be able to get individual recommendations for your diet from your own hospital as they can work with you to help find a nutrition plan that works well for you. This also allows your neutropenia to be accurately monitored so your doctors can tell you when you no longer need to follow a strict neutropenic diet.
Having a balanced diet is really important during treatment. It will help with your energy levels, mood and recovery. Although the neutropenic diet can be restrictive, there are lots of healthy, nutritious alternatives to try that are safe. If you have concerns about your diet and you feel you need more support, your hospital dietician will be able to give you more information on new foods to try and how you can improve your diet so it is varied and provides you with all the nutrients you need.
Winter 2015 www.leukaemiacare.org.uk
Substitutions
Unpasteurised milk or other dairy products
Pasteurised milk, UHT milk, soya milk
Unpasteurised cheeses such as goats cheese Brie, Camembert
Processed cheeses such as Philadelphia and Dairylea Cottage cheese, halloumi and mozzarella
Blue veined cheeses such as Danish blue and stilton
Choose hard, vacuum packed cheeses such as cheddar and Edam
Soft whipped ice cream from ice cream vans
Buy frozen tubs of ice cream or individually wrapped ice creams
Probiotic/live and bio yoghurts
Buy pasteurised yoghurts and fromage frais
Soft boiled eggs or poached eggs Any products containing raw eggs such as homemade mayonnaise, ice cream, mousses and meringues
Scrambled eggs or hard boiled eggs Shop bought products instead
Raw or undercooked meat Smoked meats such as salami and Parma ham
Well cooked meat, tinned meat
Pâté Raw fish such as sushi and shellfish
Pasteurised pâté in a jar Freshly cooked fish, tinned fish, vacuum packed smoked fish
Unwashed raw fruit and vegetables
Cooked or peeled fruit and vegetables, tinned fruit, frozen or tinned vegetables
Vacuum packed cold meats
Salad items, including pre-packed salads
If neutropenia is severe it is best to avoid salad all together
Fresh fruit and vegetable juices and smoothies
Long life UHT fruit juices
Raw dried fruit and nuts and products containing such as museli
Cooked dried fruit in flapjacks and ceral bars
Uncooked herbs, spices and pepper
Add at high temperatures during cooking to kill any microrganisms
Bottled mineral water, water from fountains and coolers
Tap water, boiled water and carbonated bottled water
Shopping and storing food • When shopping for food, do not buy food with damaged packaging as it could have been contaminated • Make sure frozen foods are placed straight in the freezer as soon as possible after purchasing or use a freezer bag to unsure they do not start to thaw before you have a chance to • Avoid fresh deli counters where foods may have become contaminated by other foods • Always consume foods before best before and use by dates • Never re-freeze thawed foods as it will have been exposed to bacteria in the thawing process • Be careful not to overload the fridge or freezer as this will increase the temperature • Fridge temperature should always be between 0ºC and 5ºC, freezer should be below -18ºC • Store cooked food at the top of the fridge and raw foods at the bottom
CARE Line 24-hour freephone 08088 010 444.
THE NEUTROPENIC DIET
Foods that should be avoided
Food preparation Food preparation is very important in minimising exposure to harmful bacteria • You should always ensure you wash your hands before and after preparing food • Use only clean, disinfected work surfaces, uncontaminated by pets and different foods • You should use different chopping boards for different food preparation to minimise cross contamination • Ensure you only use clean cloths and tea towels • When cooking food ensure all food is cooked until it is piping hot all the way through – juices in meat should always run clear • Never reheat cooked food • Ensure that fresh fruit and vegetables are washed before they are cooked •
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INSPIRATIONAL STORY
Alannah Roberts:
Make every moment count
Many thanks to Rachel Lilly Photography www.rachellilly.com
Alannah Roberts was diagnosed with Hodgkin lymphoma at the age of 15, right at the time when she should have been a healthy teenager. Nearly four years on from her cancer returning for a third time, Alannah is determined to stay positive and not let the fear of relapse stop her from living her life.
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I was first diagnosed with Hodgkin lymphoma when I was just 15. I was meant to be a healthy teenager getting ready for my GCSEs but this was not the case. I can’t remember much from this point in time as I was so ill I spent most of the day and night sleeping. However, I do remember some things. I remember the gentle and kind nature of my consultant which will stay in my mind forever. He made me feel cared for and that I wasn’t ‘just a patient’. Although the news that I had cancer was difficult for me, it was also hard on my family. Because I was a child, my parents had to make the hard decisions for me and this must have been tough and difficult to cope with. It’s easy to forget that sometimes it’s not just the patient that suffers, but also the people closest to them. Thankfully, after my initial treatment, I started to get better and I was soon in remission. But just before my eighteenth birthday, I found a lump. The cancer had come back. This was hard for me to digest, especially as I had my A Levels to concentrate on and I had never thought about the chance of the cancer coming back. I knew this time that the treatment would be more intense and I was at an age where I would have to make decisions by myself, which scared me. I remember worrying about losing my hair and being bald for my eighteenth birthday. Looking back, it seems insignificant, but at the time, my hair was my identity and, without it, people would know I had cancer. On top of this worry, I was told that I would be going to a new hospital to have treatment which wasn’t available at my local hospital. I was nervous about the change. Before starting treatment, I had never even thought about the prospect of not being able to conceive. Thankfully, my sister did think about it and asked the doctors the big question: ‘Would treatment affect Alannah’s chances of conceiving?’ Because she thought of this, my eggs were saved. I didn’t know it yet, but this was crucial. Later in life I would find out that my menstrual cycle would stop and I
would become unable to conceive naturally. I had chemotherapy over a period of months and after a nice, treatment-free Christmas with my family I had my own stem cells harvested and received a stem cell transplant. I was confined to isolation for four weeks while my immune system built itself up again. The treatment was successful but little did I know, the remission would again become short lived. Four years went by and I was doing well. I had been with my boyfriend for a year, I was just about to go into my last year at university and my life was back on track. One night I felt a twinge in my neck. When I touched it I felt a lump the size of a golf ball. My boyfriend said it was probably nothing but I knew at that moment that my cancer had come back. I can’t explain the feeling of panic and devastation I felt, knowing that its return was serious. I thought I was done with treatment but the biopsy confirmed the reality that my cancer was back for a third time. This time was different. I was a grown woman of 21, soon to be 22, and I knew I was to undergo the most intensive treatment of my life. I went through a strong course of chemotherapy followed by a stem cell
Winter Winter2015 2015 www.leukaemiacare.org.uk
INSPIRATIONAL STORY
transplant (this time using someone else’s stem cells) and finished by having total body radiation. This was a big deal and much riskier than any of my previous treatment. Luckily, my brother was a match for the stem cell transplant and I was over the moon. My brother saved my life, and he does like to remind me about that from time to time! Choosing these treatment options meant I was also giving up the chance to conceive naturally. Even though my eggs were stored, I wouldn’t be able to become a mum the natural way. But after many tears and talking things through, I realised that even though I wouldn’t be able to experience pregnancy naturally, didn’t mean I couldn’t be a mum. I had faith that this treatment was the best option for me as without it I would not have the chance to live to do or be anything. The doctors, nurses, my family, my friends and partner were amazing. Without their support and love and my faith in God I would not have gotten through this relapse. I’m not going to lie. There were days when I just wanted to give up as my body was being put through such a gruelling process. But I thought about the positives and I became determined to pull through. I wanted to get married, I wanted to see more of the world, I wanted to see my nieces and nephews get married and I wanted children of my own. After a year of the toughest treatment I had ever received, I finished. I had taken on some of the most intensive treatment that they could throw at me and I came out on top. The people around me had got me through it. Nearly four years on and I am healthy and happy. I recently married the man who was there by my side every step of the way and I have seen more of our beautiful world.
Nearly four years on and I am healthy and happy. I recently married the man who was there by my side every step of the way and I have seen more of our beautiful world. My partner and I are currently making plans to start a family and I am going to continue to live my life to the fullest. I will never know for certain that I won’t get cancer again as some of the treatment I endured meant that it could come back in other areas, but I will not let that stop me living my life. If I had any advice to give anyone going through a time like this, I would say stay positive, determined and make every moment count.
CARE Line 24-hour freephone 08088 010 444.
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SUPPORT GROUPS
Supporting one another Meeting others who understand how you feel because they’ve been there or are going through a similar situation can be invaluable. We run and co-ordinate many blood cancer support groups which provide help and advice to patients, carers and their families. If you have a group near you, why not give it a go? You’ll always receive a warm welcome!
Support group news St Albans launch We’ve recently launched a new group in St Albans for patients and carers living with blood cancers. The group meets at New Greens Social Club and welcomes anyone in the Hertfordshire area who is living with or beyond blood cancer who are recently diagnosed, have recently completed treatment or are years post diagnosis. Patients, carers, family members and friends are invited to come along for support, reassurance and advice. At some of the meetings, the group will be joined by different guest speakers and meetings provide the chance to chat to others who understand what they are going through over a cup of tea. The idea to launch the group in St Albans came from Hannah Kutler whose dad, as well as a couple of close friends, have been diagnosed with a blood cancer. For more information go to www.leukaemiacare.org.uk/support-groups or call 08088 010 444.
Anyone can start a support group! You don’t have to be a nurse to facilitate a support group! If you are a patient, carer, family member or even friend of someone with blood cancer and feel your area could benefit from a support group, we can help you set the group up and help you by producing posters and invitations and even finding a venue for it to take place. If you want to find out more, you can call our CARE Team on 08088 010 444 or email
[email protected].
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Does your area need support? Would you benefit from a support group in your area? We are always looking to expand our support groups so that we can provide as much support to patients and carers as possible. If you’d like to set up a support group for local patients and carers, or want to suggest a location where you feel support is needed, get in touch by emailing
[email protected] or call 08088 010 444. Our support groups allow people to talk through their concerns, worries and troubles in a supportive and friendly setting, with people who really understand.
Winter Winter2015 2015 www.leukaemiacare.org.uk
Tear off this leaflet and take to your GP
Recognising the signs and symptoms of blood cancers within primary care can be a challenge. The symptoms of blood cancers are vague and non-specific, making them potentially difficult to diagnose.
Fatigue?
ts? Night swea Bone pain?
Our two 30-minute, free, CPD modules on blood cancers will help GPs to:
uising? r b l a u s u n U ions? t c e f in t n e Frequ mph ly d e g r la n E nodes?
Better understand and recognise the symptoms of blood cancers. Identify potential cases of blood cancer. Refer patients for further tests more quickly. Make informed decisions. These two modules have been developed in collaboration with the Royal College of General Practitioners and are designed to support primary care physicians in recognising the symptoms of blood cancers.
Access the modules at leukaemiacare.org.uk/GP-training
Early diagnosis saves lives
Find out more… About Leukaemia CARE
Around 40,000 people are diagnosed with a blood cancer each year in the UK, which can be devastating not only to the patient, but carers, family and friends too. We are dedicated to ensuring that anyone affected by blood cancer receives the right support and information to allow them to cope with their diagnosis and treatment.
Some of our support services
Website
CARE Line
Our comprehensive website has lots of information on disease types, treatment, our support services and ways to get involved with us www.leukaemiacare.org.uk
Our CARE Line is available 24/7 meaning there is somebody to listen to you whenever you need it. Just call 08088 010 444 any time. Free from landlines and major mobile networks.
Booklets We have a number of information booklets in our Step-by-Step range. Call 08088 010 444 or visit the website to find out more.
Social media
Engage with us on social media
/LeukaemiaCARE
Leukaemia CARE’s Governance President: Dr. Richard Taylor. Past Presidents: Dr. Ian Gibson, Dr. John Rees. Vice Presidents: Dr. Robert Marcus, Professor Alan Burnett, Dr. Noel Harker, Dr. Bernard McVerry, Dr. Antonio Pagliuca, Dr. Tim Littlewood, Ms. Sheila Hegarty, Mr. Jason Eliadis, Mr. Roland Maturi, Mr. Christopher Matthews-Maxwell, Mr. Peter Mondon, Mrs. Rosalind Ann Ashley, Professor Andrew Pettitt, Mr. Peter Ives, Mr. Tony Gavin. Chairman: Mr. Christopher Matthews-Maxwell.
@LeukaemiaCAREuk
/leukaemiacare
Get involved There are lots of ways to get involved and support us. Visit the website or call us on 01905 755 977 for information on how to get involved today
Vice Chairman: Mr. Albert Podesta. Trustees: Mr. Douglas Moseley, Dr. Joanne Norton, Mrs. Wendy Davies, Mrs. Gillian Thomas. Patrons: Lady Penny Mountbatten, Mr. and Mrs. Chris and Katie Seymour, Mrs. Beverley Worboys. Celebrity Ambassador: Andrew Hayden-Smith.
Leukaemia CARE
One Birch Court, Blackpole East, Blackpole Road Worcester WR3 8SG
