Blood Cancer Charity DKMS and Scottish National Blood Transfusion Service partner to bring accessibility and awareness to Scotland
DKMS, a global non-profit organisation dedicated to the fight against blood cancer and other blood disorders, has announced its partnership with the Scottish National Blood Transfusion Service (SNBTS) to open the first collection centre for unrelated blood stem cells donors in Scotland.
This landmark initiative will significantly enhance the availability and accessibility of life-saving blood stem cell transplants for patients in Scotland and beyond.
The partnership between DKMS and SNBTS marks a crucial milestone in the battle against blood cancer, ensuring that patients in Scotland have a better chance of finding a matching blood stem cell donor.
By establishing the new collection centre, DKMS and SNBTS aim to raise awareness about the importance of becoming a registered blood stem cell donor and encourage more people to join the donor registry.
Blood stem cell transplantation is a life-saving treatment for patients suffering from blood cancers and other blood disorders.
For many patients, the step of finding a matching donor can be a challenging and time-sensitive process. The collaboration between DKMS and SNBTS will help alleviate many obstacles by providing the first dedicated facility for collecting blood stem cells from unrelated donors in the country, increasing the chances of finding a suitable match for patients in need.
Helen Kelly, Head of Projects and Operations at DKMS, said: “We are delighted to be working with SNBTS. This initiative will support more donors being able to donate their stem cells in Scotland, reducing the barriers of extensive travel and time off work. This collaboration will give more people with blood cancer and blood disorders a second chance at life”.
The collection centre is staffed by trained professionals and equipped with state-of-the-art technology, ensuring a seamless and efficient process for donors.
“There is a clearly defined need for this important facility to open in Scotland. As the expert in blood, platelet, plasma and cell collection, SNBTS has transferrable expertise to support the collection of stem cells from unrelated donors,” said Dr Lynn Manson, SNBTS Clinical Lead for Therapeutic Apheresis Services at the Scottish National Blood Transfusion Service.
“An Edinburgh facility will reduce the travel time required for donors and help to ensure stem cell donations are available when needed. We are pleased to have been involved in this important project, and I’d like to thank all staff and donors involved.”
The collection centre aims to be able to support all Scottish donors, allowing around 100 donors a year to be assessed and their donations collected locally. DKMS’s goal, with the support of SNBTS, is to provide a matching donor for every patient in need of a blood stem cell transplant.
To achieve this, DKMS actively engages with the public, healthcare professionals, and community organisations to raise awareness about the importance of becoming a blood stem cell donor and encourage eligible individuals to register.
By expanding the donor pool, this initiative aims to improve the odds of finding a matching donor for every patient in Scotland and beyond.
Non-existent awareness of leukaemia symptoms “extremely worrying” – as new figures show people in Scotland don’t know bleeding, bruising, fatigue and infections are a sign of the blood cancer
Leading UK leukaemia charities launch memorable new campaign to get people “parroting on” about the symptoms for Blood Cancer Awareness Month in September
People in the Scotland are being urged to take notice of the symptoms of leukaemia, as new research published today shows that only 1% of those surveyed in the region were able to identify ALL four of most widely reported symptoms – fatigue, bruising, unusual bleeding and repeated infections.
Leukaemia is a form of blood cancer affects people of all ages and 28 people receive a leukaemia diagnosis every day in the UK – that’s over 10,000 every year. Overall survival for leukaemia stands at just over 50% – making it one of the most deadly forms of cancer.
Early diagnosis could saves lives yet the recent public survey by leukaemia charities Leukaemia UK and Leukaemia Care, found that over that nearly half (48%) of respondents from Scotland could not recognise ANY amongst the four most widely reported symptoms of the disease, which kills 5,000 people a year in the UK, and which is often diagnosed too late.
The two charities are collaborating on an important campaign, #SpotLeukaemia, to raise awareness of the symptoms ahead of Blood Cancer Awareness Month in September. Blood cancer is the fifth most common cancer and third deadliest.
In a new film released today Leukaemia Care and Leukaemia UK have called on the expertise of ‘Henry’, a talented Macaw parrot, to try to make the symptoms of leukaemia memorable.
The ad sees Henry using a range of objects to create a catchy and repetitive ‘Spot Leukaemia rap’ featuring the symptoms of leukaemia.
People who are concerned about any of these symptoms– fatigue, bruising, unusual bleeding and repeated infections – are being strongly urged by the charities to contact their GP and request a blood test. More information is available on the Spot Leukaemia website at www.spotleukaemia.org.uk.
The ad focuses on the top four symptoms. Other symptoms of leukaemia include fever or night sweats, bone or joint pain and swollen lymph nodes.
The charities are now calling on people to start “parroting on” about leukaemia and its symptoms, share the video (https://youtu.be/UMRTMKVvYhQ) with friends and family, and visit the Spot Leukaemia website for more help and advice.
Awareness of the symptoms of leukaemia is low in Scotland
Only 9% of respondents across Scotland recognised that repeated infections – one of the most common symptoms of leukaemia – are a symptom, only 31% said unusual bruising is a symptom and only 17% said unusual bleeding is a symptom. Only 39% of respondents were not able to recognise fatigue as a symptom – which is often the most likely symptom to be identified by those later diagnosed with leukaemia.
Case study:
Melissa McNaughton, 33, from Bridgeton, Glasgow, felt tired, something she attributed to working too hard. So, it came as a shock to Melissa when she was diagnosed with chronic myeloid leukaemia. Here, she talks about her diagnosis and her life since.
“I was diagnosed 12th June 2018 and I am not yet in remission. I am now on my fourth chemotherapy drug. Looking back to just before my diagnosis, I felt tired, but other than that, nothing.
“I have had quite bad health most of my adult life, so I am in and out of the doctors a few times per year. I just put the tiredness down to working too much as I run my own business.
“I popped into the doctors for my blood test (every few months) to check my iron levels. My GP told me to go to hospital the following day – I knew what hospital and what ward I was heading to. My GP is absolutely amazing and has been very supportive throughout the journey.
“So, I arrived at the hospital, headed to the second floor and walked through the doors. I was surrounded by posters that were all about cancer and effects of chemo, support groups, giving blood, wig makers, etc. I felt ill with fear, and I had no clue what I was going into.
“I sat down and one of the nurses came up to me and said, “Are you here for chemo today?” I said, “I have no idea why I’m here.” And ran away into the toilet and had a panic attack. I was meant to see a consultant first. I then went in and they said there was a 99 per cent chance I had chronic myeloid leukaemia (CML).
“Sitting in the consultant’s room with my mum, dad and husband, I was in my own little world. I heard a few words and could see the consultant’s mouth moving but nothing coming out. I just heard the words “cancer” and “leukaemia”. A million questions were going through my head: what’s going to happen to me? What will my life be like? Am I going to die? How long will I live? Can I have children?
“It’s so strange all these things go through your head that you have never thought of before. I was looking around at my mum and dad and they were asking questions; my husband was just in a daze. It wasn’t nice to see the fear in their eyes. I’m such a happy, bubbly, positive person and I snapped myself out of the daze and said, “What’s next?” completely interrupting the consultant.
“He said the next step was to do a bone marrow biopsy and he could get me in next week. I asked if I could just have it done today. I was then taken into another room and had my back injected to make it numb to do the biopsy. Then it began; it was a horrible pressure pain and I was crying.
“But the song from The Greatest Showman ‘This Is Me’ was playing in the background and I focussed on that – I feel it’s now became my theme song! I was back in the hospital on Friday. I was told the results were back and I had CML. Everything was going to change.
“Again, I tried not to let all the thoughts come into my head and I asked to start the treatment straight away; I was not waiting around. Off to the pharmacy I went and collected all my pills. I then went back to work the following week – this was not stopping me.
“The first generation of the TKIs were awful, I couldn’t get through a full day, I could only get up for about an hour or two at a time. I was sick, weak, bone pain, muscle pain. It was horrible! I’ve never cried so much. I lost so much weight, I was so weak I could hardly use a knife and fork. I tried to keep going with work, but it was all too much. I had to cut my hours right down.
“I have never felt like this in my life, it got me really down for a while. But my inner warrior was not going to let that happen for long. I tried to power through. I was then taken off these tablets and moved onto another generation. I am still on them now, but I was covered from head to toe in a rash, and my bones in my legs were so sore and weak they felt like they were going to snap.
“Fast forward to today. I have had my “cancerversary” of four years living with cancer. Every day is still a struggle and some days are worse than others. I’m getting there.
“Cancer will just have to get used to living with me because I am in no way going to let it beat me. I’m still smiling and not stopping. My blood levels are steadily going down which is great. I have not hit my target yet, but everything is moving in the right direction.
“I try to keep doing everything I would normally do weekly but just a bit slower and sometimes it’s quite difficult. I try to carry on as normal as possible, but this is my new normal! I try to pop make-up on and look a bit more like myself. I am a hair extension master and I had to close down my salon of 10 years due to the pandemic so I have started a new business from scratch, IvyHQ where I for hair extensions and I have developed my own line of hair and training.
“When I had my own salon we did a charity karaoke night to raise funds for Leukemia Care. In my spare time, myself and husband love travelling around Scotland with our new puppy, Hope.
“I have heard a few times that if you’re going to have cancer, this is the best one to have. Really? Did you actually just say that to me? Nobody will know how it feels unless they are going through it. Some other cancers you have to go through the horrible process of being injected with chemo, losing your hair and being weak, but when you come out the other side of it that can be you “fixed”. Whereas with me I will have to be on tablets for life. It’s very different.
I’ve also had, “Is that you cured now?”, because I’ve done my hair and make-up and managed to get out in high heels for an hour. Just because I look ok doesn’t mean I feel it. I try not to talk about it too much, so when someone asks me how I am I always say I’m good!
“I’m not going to go into detail with them by saying, “Oh, today’s been a bit hard, it took me two hours to get out of bed and I needed help getting out of the shower today as my legs went into a cramp.” But these are things I have daily and I just carry on with a smile on my face as I’m so lucky to be able to have this treatment.
“And hopefully, in time, these will all ease off. I have kept working as much as I can all the way through, as having my own business, if I don’t work, I don’t get paid. I have also made up my own hashtag #mycmljourneydiary online as I felt it’s good to keep a wee diary to look back on.
“Also, if someone is going through the same thing as me and if I can help in any way at all, that will make me feel good that I can help. It’s got the good, the bad and the ugly. All “keeping it real” posts. Spot Leukaemia is so important to raise awareness as I had no idea what leukaemia really was until I had it. It is so important to me as getting the word out there will hopefully make someone go along for a blood test!”
Melissa’s only symptom of leukaemia was fatigue, but there are other signs which include:
Bruising
Bone Pain
Repeated infections
Are you currently experiencing similar symptoms to Melissa? Request a blood test from your GP. For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org. Early diagnosis saves lives. #SpotLeukaemia
Nationally, those who are over 55 also underestimate their risk, thinking that leukaemia is a childhood disease. Only 11% of over 55s thought that they had the greatest risk of leukaemia, whereas in reality cases rise sharply after the age of 55 and 38% of all new cases occur in the over 75s.
Fiona Hazell, Chief Executive of Leukaemia UK said, “It’s extremely worrying that less than 1% of Brits are able to identify the most common symptoms of leukaemia, when 28 people are diagnosed each day in the UK.
“People underestimate their risk by thinking that leukaemia is a childhood disease. In reality, both incidence and mortality rates rise sharply after the age of 55. Raising awareness in this age group is critical in order to treat it early and effectively; and ultimately to improve survival rates overall.”
A lack of awareness of which age groups are most at risk from leukaemia is also concerning, with 43% of respondents thinking that leukaemia is most common in the under 24s.
Whilst it is true that leukaemia is the most common type of childhood cancer, leukaemia incidence rates rise sharply after the age of 55 and 38% of all new diagnoses occur in those over 75. The survey found that only 2% of Brits think that leukaemia is most common in those over 75. The Spot Leukaemia campaign particularly wants to increase awareness among those who are over 65, as this age group is the most likely to be diagnosed with leukaemia.
Zack Pemberton-Whiteley, Chief Executive of Leukaemia Care said, “To hear that less than 1% of the UK public are able to identify the four most common symptoms of leukaemia is extremely worrying.
“Early diagnosis of leukaemia can improve survival. With over 10,000 people being diagnosed every year with a leukaemia, this shows just how important it is to continue to raise awareness of the signs and symptoms and how much work needs to be done.
“We know that our new Spot Leukaemia video may ruffle some feathers but in order to raise awareness we needed to create something that will fly. It’s crucial that if you think you have fatigue, bruising or bleeding or repeated infections that you contact your GP and ask for a blood test. It’s as simple as that and we will continue to parrot-on about it.”
A defective gene, normally found in blood cancers, could be treated with drugs already available for cancers with similar gene defects, scientists at Queen’s University Belfast and the University of Birmingham have revealed.
The research team, funded mainly by Cancer Research UK and the Medical Research Council, found that tumours with mutations in the SF3B1 gene respond to PARP inhibitors, a type of drug used to treat cancers which have similar mutations in the BRCA1 and BRCA2 genes.
The researchers believe that PARP inhibitors could be used to treat patients with tumours carrying the defective SF3B1 gene. This mutation is most often found in blood cancers, including chronic lymphocytic leukaemia, as well as some rare cancers like uveal melanoma.
Dr Kienan Savage, lead author and Reader at the Patrick G Johnson Centre for Cancer Research at Queen’s, (above) said: “Our findings have clinical implications for the treatment of many cancers.
“We specifically focused on this genetic mutation as it is found in several difficult to treat leukaemias and other cancers, and it affects so many cancer patients. By deepening our understanding of this gene mutation, we have identified new ways of treating these cancers that could improve survival rates.”
PARP inhibitors, which include olaparib and rucaparib, are used to treat some patients with ovarian, breast, prostate and pancreatic cancers – usually patients who have inherited a faulty BRCA1 or BRCA2 gene. Around 1 in 400 people have a faulty BRCA1 or BRCA2 gene.
The research, published today in Cancer Research, a journal of the American Association for Cancer Research, found that the SF3B1 mutation produces similar effects to the faulty BRCA1 gene by damaging DNA, preventing it from being repaired properly, and stopping it from making normal copies of itself. PARP inhibitors target the cell’s DNA repair tools by locking them in place on the DNA. This stops DNA repair, causing the cancer cells to die.
The scientists found that cancer cells with the SF3B1 mutation were sensitive to olaparib, the most common PARP inhibitor, some specific chemotherapies and to radiotherapy. The scientists believe that the SF3B1 mutation disrupts the cell’s ability to make DNA repair proteins, leaving it vulnerable to drugs which target these proteins.
The SF3B1 mutation occurs in up to 30% of blood cancers called myelodysplastic syndromes, where blood cells don’t form properly. They are difficult to treat as they occur predominantly in older patients who may not be considered fit for treatment. The mutation is also common among uveal melanoma or cancers of the eye, which currently have limited treatment options.
Dr Katrina Lappin, from Queen’s and first author of the study, added: “Our research shows that cancers with these specific mutations, may be treated effectively with PARP inhibitor therapy drugs, which are less toxic, better at killing cancer cells with these mutations and can be taken at home in tablet form.This could have huge implications for improving outcomes and quality of life of people with these cancers.”
“This work will pave the way for clinical trials using PARP inhibitors for the treatment of patients with this commonly associated cancer mutation, allowing a more personalised approach to the treatment of these cancers.”
The researchers now want to test PARP inhibitors in clinical trials with patients who have the SF3B1 mutation to see if they can stop their cancer from spreading.
Co-author Professor Grant Stewart, of the University of Birmingham, said: “Our work demonstrates that a molecular understanding of how a specific gene mutation affects a cancer cell’s ability to repair damaged DNA can be exploited clinically to specifically tailor the anti-cancer therapy used to treat an individual’s tumour.
“This will increase the effectiveness of the therapy and hopefully, reduce the chances of re-occurrence.”
Michelle Mitchell, Chief Executive of Cancer Research UK, said: “Our scientists helped to discover the BRCA gene over 25 years ago and since then we’ve led the way in developing PARP inhibitors to treat cancers with BRCA gene faults.
“It’s really exciting to hear about a new mutation, which behaves like the BRCA1 mutation and could in the future be treated in the same way. With PARP inhibitors already widely available, there is huge potential to help people with some of the rarest and most difficult-to-treat cancers known to us.
“Over the past two decades, PARP inhibitors have saved thousands of lives worldwide, and it will be interesting to see if this research in the future could lead to a similar impact for people with rarer cancers.”
The research was funded by the UK Medical Research Council, Cancer Research UK, Blood Cancer UK, Leukaemia and Lymphoma NI and Great Ormond Street Hospital Children’s Charity.
