Know ALL was pleased to speak to Michael Osborn, Women's and Children's Hospital, Adelaide, AU. We asked, are there any clinical trials focusing on relapse in ALL, what is the future of CAR T-cell therapy clinical trials for ALL, are there any novel agents currently being investigated for ALL, and how can patients get involved in clinical trials? 

Osborn starts by discussing the range of clinical trials being conducted across the globe, including a study of inotuzumab ozogamicin plus chemotherapy for children with relapsed B-ALL in Europe. Then, he explains the current issues with CAR T cells, including the manufacturing time and cost, and highlights the newer CAR T cells being developed with strategies such as adding medications (e.g., venetoclax) into treatment to overcome these challenges. He also describes the novel agents being investigated at different stages for ALL, including revumenib for KMT2A-rearranged ALL. Finally, he discusses researcher's efforts to design clinical trials in collaboration with patients and how people can get involved.

Michael Osborn

Clinical trials in acute lymphoblastic leukemia

During the recent ambassador meeting,  our ambassadors discussed the challenges for caregivers supporting patients with ALL undergoing long-term treatment. 

Firstly, the role of patient organizations in supporting caregivers, the need to tailor services, and the need to bring more attention to the currently available support were discussed. Then, the ambassadors outlined the financial impact of ALL on caregivers, including future plans to support with the extra cost of time off work, traveling to appointments, and medication; the impacts on family members who are not the primary caregiver and how they can be supported was also discussed.

Know ALL Ambassador Panel

Challenges for caregivers supporting patients with ALL undergoing long-term treatment

During the recent ambassador meeting, co-chair and patient Jaymz Goodman led a discussion on the challenges faced by patients with ALL undergoing long-term treatment. 

Firstly, Goodman outlined key points, including joint issues and avascular necrosis for teenagers, as well as impacts on patient bone density. Next, challenges in treatment adherence and maintenance were discussed, including some strategies to improve adherence. Psychological and emotional challenges, such as returning to work and school after treatment, were also considered a key challenge faced by patients with ALL; the significance of ending treatment was highlighted as a critical time when support is needed to help with social and lifestyle changes.

Challenges for patients with ALL undergoing long-term treatment

During this recent interactive workshop, Know ALL co-chair Zack Pemberton-Whiteley, Chair of the Acute Leukemia Advocates Network and CEO of Leukaemia Care, delivers a presentation on health inequality and global health equity. 

Our attendees then drill down into these topics further, discussing factors that are associated with health inequality.

Zack Pemberton-Whiteley

Introduction and background to health inequality

Know ALL co-chair, Jaymz Goodman, raises awareness of World ALL Day (WAD) 2023 and shares details on how you can get involved this year with Know ALL's WAD Campaign.

Jaymz Goodman

Today is World ALL Day!

Know ALL was pleased to speak to Pete Jerrett, UK. We asked, what was your ALL subtype and what were the challenges you faced?

Jerrett discusses his diagnosis of T-cell ALL at the age of 18, a rarer and harder to treat form of ALL. He then describes some of the challenges he faced during diagnosis and treatment, including having to relocate and the mental health implications. Finally, he describes how he was able to manage these challenges.

Peter Jerrett

What was your ALL subtype and what were the challenges you faced?

Know ALL was pleased to speak to Co-Chair Jaymz Goodman, UK. We asked, what was your ALL subtype and what were the challenges you faced? 

Goodman shares his ALL subtype and provides insight into both the previous and ongoing challenges he faced during his ALL experience. He also describes how he managed these challenges and the benefits of uniting ALL patients through shared experiences.

At the 2023 Know ALL Community Meeting, Dr. Nicholas Short, MD Anderson Cancer Center, Houston, US, delivers an expert-led session on the topic of how I treat newly diagnosed ALL. 

Short begins by outlining historical outcomes and recent innovations in the treatment of adult ALL, before providing an overview of the factors that determine frontline treatment decisions. After contrasting canonical chemotherapy regimens between age groups, Short discusses hyper-CVAD and the impact of implementing inotuzumab ozogamicin and blinatumomab in frontline therapy, using real-world survival data. Finally, Short discusses first-line treatment options for Philadelphia-chromosome-positive ALL and the role of stem cell transplants in newly diagnosed ALL.

Nicholas Short

How I treat newly diagnosed ALL

At the 2023 Know ALL Community Meeting, Sophie Wheldon delivers a patient-led session on the topic of my treatment experience. 

Sophie begins her presentation by recounting her experience of first receiving her ALL diagnosis. She describes her involvement in clinical trials and the side effects of treatment, as well as her sources of support while undergoing a stem cell transplant and a later disease relapse. Finally, Sophie discusses her experiences with CAR T-cell therapy and life after remission.

Sophie Wheldon

My treatment experience

At the 2023 Know ALL Community Meeting, Dr. Nicola Gökbuget, University Hospital Frankfurt, Frankfurt, DE, delivers an expert-led session on the topic of how I treat relapsed or refractory ALL. 

Gökbuget begins by providing an overview of adult ALL, focusing on how ALL is measured and how relapsed/refractory ALL is defined. She then discusses the steps after detection of relapse and elaborates on the factors that impact treatment decisions and goals. Speaking on relapsed/refractory ALL, Gökbuget contrasts the primary therapeutic approaches between T-ALL and Philadelphia chromosome-positive/-negative B-ALL. She then outlines several specific targeted approaches using real-world data. Before closing, Gökbuget also evaluates the impact of CAR T-cell therapy in adult ALL.

Nicola Gökbuget

How I treat relapsed or refractory ALL

As part of the Know ALL spring ambassador meeting, our expert panel engaged in an informative discussion on some of the long-term treatment effects facing survivors of childhood acute lymphoblastic leukemia. The discussion was chaired by Jan Cools, with contributions from Charles Mullighan, Sharon Cohen, Peter Jerrett, and Anne-Pierre Pickaert. 

The panel referenced side effects such as fertility, cognitive changes, cardiac problems, and bone disorders. Key elements of the discussion included reducing the intensity of therapy, lack of awareness in the general community of long-term toxicities related to acute challenges, patient vigilance, and raising awareness of the key symptoms patients should look out for.

What are the long-term treatment effects in ALL?

Know ALL was pleased to speak to Sue Futeral, Baltimore, Maryland, US. We asked, How was your diagnosis and how are you coping with the challenges?

Sue begins by discussing how she was impacted by her preliminary diagnosis and journey as well as her experience getting in patient treatment at the height of the covid pandemic. She talks about the challenges of intense chemotherapy treatment and how age played a factor in her treatment regime as she was subjected to further testing to access the effectiveness of her treatment progress. She goes on to describe the process she underwent to receive a bone marrow transfusion and how this impacted her recovery.

Sue Futeral

How was your diagnosis and how are you coping with the challenges?

Know ALL was pleased to speak to Coralie Hykes, San Francisco, California, US. We asked, How was your acute lymphoblastic leukemia treatment journey, and what were the most challenging parts of it?

Hykes discusses her diagnosis and treatment regimen, as well as the lifestyle changes she experienced during her journey. She then talks about the challenges of intense chemotherapy treatment and the physical and mental difficulties she faced. She goes on to describe coping with the ups and downs of treatment, explaining how she learnt from others. Finally, she describes using a holistic approach to better manage the side effects brought on by her treatment.

Coralie Hykes

How was your ALL treatment journey, and what were the most challenging parts of it?

During the ESH 3rd How to Diagnose and Treat Acute Leukaemias, Know ALL spoke with Sebastian Giebel, Maria Sklodowska-Curie National Research Institute of Oncology, Gliwice, PL. We asked, What is measurable residual disease (MRD), and why is it important in acute lymphoblastic leukemia? 

Giebel begins by discussing detection methods, including flow cytometry or molecular techniques which are used to precisely monitor responses. He highlights the huge prognostic impact MRD can have for patients. Finally, he outlines the bispecific antibody blinatumomab, used as a therapy to eradicate MRD.

Sebastian Giebel

What is MRD, and why is it important in acute lymphoblastic leukemia?

During ESH 3rd How to Diagnose and Treat Acute Leukaemias ,Know ALL was pleased to speak with Emily Curran, University of Cincinnati, Cincinnati, US. We asked, What is Ph-like acute lymphoblastic leukemia, and how is it treated? 

Curran begins by distinguishing between Ph positive acute lymphoblastic leukemia and Ph-like acute lymphoblastic leukemia and explaining how it can often be missed at diagnosis. She discusses new approaches utilizing targeted treatments like dasatinib and imatinib to improve outcomes for this patient group. Finally she highlights that for some patients stem cell transplants can be a good treatment choice, due to the high risk of relapse.

Emily Curran

What is Ph-like acute lymphoblastic leukemia, and how is it treated?

During the 4th European CAR T-cell Meeting, Know ALL was pleased to speak with Natacha Bolaños, Lymphoma Coalition, Madrid, ES. We asked, What supportive care is needed for patients receiving CAR T-cell therapy? 

Bolaños begins by explaining the difference between palliative and supportive care, stressing that early integration of supportive care alongside active treatment should be the model of treatment. Bolaños highlights that CAR-T should be no different from other settings in its need for a patient-centric approach that takes into account patient preferences and changing needs.

Natacha Bolaños

What supportive care is needed for patients receiving CAR T-cell therapy?

Know ALL was pleased to speak to Charles Mulligan, St Jude Children's Research Hospital, Memphis, US. We asked, What do we know about acute lymphoblastic leukemia development and treatment? 

Mulligan explains what acute lymphoblastic leukemia is and how the affected cells change and lead to symptoms. He describes how treatments are administered to patients and why. Mulligan outlines groups of patients that are at risk of acute lymphoblastic leukemia development and the impact age has on this. Finally, he discusses how the treatment of ALL has changed over the years and highlights the success of chimeric antigen receptor (CAR) T-cell therapy.

Charles Mullighan

What do we know about acute lymphoblastic leukemia development and treatment?

During the European School of Haematology (ESH) 2nd Translational Research Conference: Acute Lymphoblastic Leukaemia, Know ALL spoke to Elias Jabbour, MD Anderson Cancer Center, Houston, US. 

We asked, What treatment strategies are being used in relapsed acute lymphoblastic leukemia? In this video, Jabbour explains how we have been able to increase survival and remission rates through a targeted approach, using new drugs like bispecific T-cell engagers (BiTEs) and chimeric antigen receptor (CAR) T-cells. He highlights that the outcomes of patients with relapsed acute lymphoblastic leukemia have been improving significantly and will continue to do so.

Elias Jabbour

What treatment strategies are being used in relapsed acute lymphoblastic leukemia?

Know ALL was pleased to speak to Anthony Moorman, Newcastle University, Newcastle upon Tyne, UK. We asked, Why do we have so many different types of acute lymphoblastic leukemia? 

Acute lymphoblastic leukemia is a blood cancer that typically arises in the bone marrow, causing normal cells to divide uncontrollably. In this video, Moorman explains the impact of different genetic mutations on leukemic cells and how these unique combinations result in different acute lymphoblastic leukemia subtypes. He points out that clinicians choose the best treatment options for patients according to their specific type of acute lymphoblastic leukemia.

Anthony Moorman

Why do we have so many different types of acute lymphoblastic leukemia?

Know ALL was pleased to speak to Charles Mulligan, St Jude Children's Research Hospital, Memphis, US. We asked, How do genetic changes contribute to acute lymphoblastic leukemia development? 

Mulligan summarizes how genes are involved in the development of acute lymphoblastic leukemia, highlighting genetic predispositions and increased risk in certain groups of people. He discusses the nature of some genetic changes and the environmental factors that may influence the development of acute lymphoblastic leukemia. Finally, he outlines the genetic differences in acute lymphoblastic leukemia for varying ages and how genetic understanding aids the development of more effective treatments.

How do genetic changes contribute to acute lymphoblastic leukemia development?

Videos discussing every aspect of living with acute lymphoblastic leukemia. All content and information accurate at time of recording.

Interviews

As a regular and outgoing 19-year-old, I wasn’t expecting anything drastic to overturn my life for quite some time. That was until I started becoming lethargic and developed a cough that I couldn’t seem to shift for a few weeks. They tell you to go to the doctors if you have any symptom that doesn’t go away for 3 weeks, so my parents advised me to take a trip to the local walk-in clinic just down the road.

Being in peak fitness, it was a surprise to me that I was unwell for so long. So after multiple trips to the doctors, being prescribed antiviral medication and a nebuliser to try to figure out the root cause of my cough, with nothing helping, I was sent for an X-ray of my chest.

I received a phone call asking me to return to the doctors; I took my mum with me because at this point, I had it in my head that it might be something serious and was beginning to get worried. As the clock ticking in the room became very loud, the GP told me I had a 14 cm mediastinal mass (a big thing in my chest), and that they weren’t sure what it was.

It followed that I was booked in for a CT (computed tomography) scan 2 weeks after the appointment, walking out crying and telling my mum that it would be okay, not really knowing myself how I was feeling, and went home thinking that I had an overactive thymus gland and that it would potentially require an operation to sort.

I didn’t make it 2 weeks, in fact, I made it 2 days before I wasn’t able to eat properly, and this foreign thing in my chest was causing me to be unable to breathe when I ate my breakfast. My dad put his foot down and insisted that all three of us went to A&E that morning. I had the CT scan that day and was given prednisone to calm the swelling. This helped the symptoms quite quickly, and after my first overnight stay in hospital, was sent home the next day.

A few days later, I was told to go to Stoke for a chest biopsy, and after yet another overnight stay, went home again. A few more days passed, and I received a phone call one late afternoon telling me that I had lymphoma, and I was to go to Shrewsbury Hospital as soon as I could to meet with a haematologist.

Safe to say, up until that point I had tried to remain positive, but as I was writing questions to ask the haematologist, such as ‘Am I going to die?’ and ‘What will chemotherapy be like?’, the well of positivity had all but dried up, and I started to feel fear.

I had a blood test done at Shrewsbury, and the wonderful nurses on the ward told me to go home, as the next day I was booked in for an inpatient stay on the Young Persons’ Unit cancer ward at the Queen Elizabeth Hospital Birmingham. I didn’t know it would be my last night at home for a month, and how much my life was about to turn upside down.

Upon arriving and meeting the haematologist team in Birmingham, they organised a bone marrow biopsy after detecting irregularities in my blood. Two days later, the same team returned to my room with the final verdict.

On 8th August 2015, I was diagnosed with T-cell acute lymphoblastic leukaemia with a secondary mediastinal mass.

I agreed to join the UKALL 2011 trial, and started treatment not long after. Just 3 months after finishing my A Levels, I was now undergoing what would turn out to be 3 and a half years of treatment for my acute lymphoblastic leukemia. Two drugs to keep in mind would be dexamethasone and methotrexate. These would become my nightmares, but I also had many other drugs that caused symptoms ranging from peripheral neuropathy (caused by vincristine), on-the-floor blood counts (caused by cytarabine and cyclophosphamide), and little to no immune system (caused by mercaptopurine). Oh, and also red pee (from daunorubicin).

The dexamethasone caused me to gain weight rapidly, have terrible mood swings, and eventually, when having a higher dose later down the line, caused what can only be described as the most intense pain I will ever experience in my life in the base of my spine – what at the time I believed would paralyse me from the waist down. It didn’t, and after a few days of the ‘Good Stuff’ (OxyNorm, which is the step up from morphine), the pain subsided, and life went back to normal, but I will never forget that feeling.

As part of my trial, one of the interim phases involved having either increasing dosage pulses of methotrexate, or (what I had) the highest calculated dose that the human body can handle at once.

This ruined me, both mentally and physically, and I remember turning to my parents at one point and saying that I would be okay if I died to not have to experience it anymore. This happened for the first two rounds, and then for the third and fourth round, I had aprepitant and Nozinan (a palliative care sedative), which essentially put me to sleep for the entire ordeal. Much less life-hating and much more relaxing, as relaxing as you can get with a bag full of cytotoxic drugs being pumped into you.

The dexamethasone later caused me to develop a condition called avascular necrosis, which is the death of the bone, in my hips. Two years of bone degradation then led to a total right hip replacement. I’m still waiting to see if I need the left hip replaced, but you hold onto the small saving graces like still having one reasonably functioning hip, albeit painful sometimes.

I lost a lot of my own body confidence – no hair, gaining 3 stone, a complete reset of physical fitness. All this amongst the pain, vomiting, bowel dysfunction, bleeding, exhaustion, and to top it all off, PTSD (post-traumatic stress disorder). These few years of treatment were harrowing, and undoubtedly life changing.

I’m glad to be alive and to spread the message of the difficulties I faced, and to be able to raise awareness of the ordeal that is cancer at a young age. While all of this story seems like doom and gloom, it’s just an accurate account of what happened, with a lot of the meat left out – because really it was just chemotherapy after chemotherapy, pint of blood after pint of blood, and a tremendous amount of pills.

I now work in IT, have had a lot of counselling, and am pretty content with life. I live to honour a lot of friends I made along the way who were not so lucky as I was, and to remind people that while it may seem dark in the moment, nothing lasts forever. All you’ve got to do is keep swimming.