Disclaimer: First and foremost, I must clearly state that I am not a doctor and have no medical training; this is purely a guide to the ALLTogether 1 research trial from my perspective as a parent of a child who has been part of the study. All views expressed are my own and are not a substitute for the advice given by medical professionals.
The AllTogether 1 trial is a large clinical trial designed to improve treatment for children and young adults (up to 45 years old in some regions) with newly diagnosed acute lymphoblastic leukaemia (ALL). ALL is the most common childhood cancer.
Here’s a breakdown of the key points about the trial:
- Goal: Refine treatment for ALL by finding ways to make it more effective with fewer side effects.
- Who can participate: Children and young adults with newly diagnosed ALL.
- Treatment approach: The trial compares different treatment regimens, including
- Whether to reduce the number of chemotherapy drugs used in standard treatment for certain patients.
- The addition of a drug called Inotuzumab Ozogamicin for patients with a specific ALL risk profile.
- Collaboration with CAR-T cell therapy trials for high-risk ALL.
- Randomisation: In some parts of the trial, participants are randomly assigned to different treatment groups.
- Duration: The trial is expected to run until May 2027.
- Safety: Participant safety is a top priority throughout the trial.
Here are some resources for learning more about the AllTogether 1 trial:
- Cancer Research UK: A study looking at treatment for children and young adults with newly diagnosed acute lymphoblastic leukaemia (AllTogether-1)
- Blood Cancer UK: Childhood acute lymphoblastic leukaemia (ALL) treatment
In the 50s and 60s, a diagnosis of Acute Lymphoblastic Leukaemia was a death sentence, but research has come a long way. Now, if a child receives this diagnosis, the 5-year survival rate is around 95%. That’s remarkable progress in a generation. There are hopes that the next generation will have even better outcomes. The aims of the alltogether study are to develop a new standard of care to improve the quality of survival. Historically, young people with this kind of leukaemia were over-treated with a combination of chemotherapy drugs, it was thought that as the cancer was everywhere (leukaemia is a blood cancer and as blood is all over the body, the cancer is all over the body, unlike tumours where the cancer tends to be localised in the earlier stages). This previous common treatment protocol could cause serious side effects, secondary cancer, long-term side effects and even treatment-related death.
What is Acute Lymphoblastic Leukaemia?
Acute lymphoblastic leukaemia (ALL) is a type of blood cancer. It affects the white blood cells called lymphocytes, which are normally produced in the bone marrow. Here’s a breakdown of what ALL is and how it works:
- Cancer of the blood cells: ALL starts in the bone marrow, the spongy centre of your bones where new blood cells are made. In ALL, the bone marrow starts producing abnormal lymphocytes instead of healthy ones.
- Fast-growing: The word “acute” means ALL develops quickly. These abnormal lymphocytes multiply rapidly and crowd out the production of healthy blood cells.
- Types of lymphocytes: There are two main types of lymphocytes: B cells and T cells. ALL can be classified based on which type of lymphocyte is affected.
- Childhood vs. Adult: ALL is more common in children, but adults can also get it.
Some of the main signs and symptoms of ALL are:
- Reduced infection fighting: Healthy lymphocytes are part of the immune system and help fight infections. When ALL disrupts lymphocyte production, it becomes harder for the body to fight infections.
- Other blood cell problems: As abnormal lymphocytes crowd the bone marrow, there’s less space for the production of other blood cells, like red blood cells (carry oxygen) and platelets (important for blood clotting). This can lead to anaemia (fatigue, weakness) and easy bleeding.
The symptoms that my child experienced before his diagnosis were:
- repeated infections
- high temperatures
- night sweats
- loss of appetite
- extreme fatigue
- unexplained and unusual bruising
- excruciating limb pain for no reason
- petechiae (red pinprick marks, almost like a rash)
How does the ALL Together Trial work?
The ALL Together 1 trial is open to children and young people between the ages of 1 and 29 who are newly diagnosed with Acute Lymphoblastic Leukaemia. The study is a multinational one, and there are many countries across Europe that are contributing to the study. Once children have been accepted onto the trial and the parents/guardians have signed the consent forms, the child then starts treatment. The treatment is split into several phases, and everyone starts off with the same first phase. Once they have completed this first phase, which lasts 30 days, they will have a bone marrow aspiration to see how many leukaemia cells are still present. The results of these bone marrow tests will determine which risk factor they are categorised into and what the following phases of treatment will look like. The higher the number of leukaemia cells at 30 days, the more likely they are to relapse after treatment has been completed. The higher the risk group, the more chemotherapy they will have throughout treatment. The risk factors are categorised into:
- standard risk (sometimes referred to as low risk)
- intermediate risk-low
- intermediate risk-high
- high risk
As I’ve already said, the treatment is split into different phases. These different phases will have different chemotherapies at differing amounts. The main phases of the treatment are:
- induction
- consolidation 1
- consolidation 2
- delayed intensification
- consolidation 3
- maintenance
For us, the Dinosaur was categorised as Standard Risk, which meant he had the lowest risk of relapsing; that’s not to say that he won’t, it’s just less likely for him to relapse than it would be for a child who is categorised as High Risk.
How are children diagnosed with ALL?
The first thing that will lead to a diagnosis of ALL is a blood test. A blood test will not be the only way to diagnose, but it is a good indicator. The only way to tell for certain if a child has acute lymphoblastic leukaemia and which subtype of ALL is by carrying out a bone marrow aspiration (BMA – have a look at my cancer terms glossary here). After 30 days, they will have another BMA to see how well the first stage of treatment has worked and establish which risk factor they are.
For us, the first blood test showed a number of things that pointed towards leukaemia as being the most likely cause. These were low red blood count (anaemia), low white cell count, low platelets and low neutrophils. This was enough for a paediatric consultant specialising in haematology to be called in to talk to us and tell us what would come next. He told us that he was sure that the results meant leukaemia, that he had spoken to a consultant at Bristol Royal Hospital For Children, and that we would be transferred there in a few days (he was diagnosed on a Friday night so we stayed in Gloucester for the first weekend) and that for the time being he would be given antibiotics, red blood and platelet transfusions as well as fluids to keep him comfortable and help him to start feeling a little better. The consultant also briefly talked us through the treatment plan for the first month.
The consultant explained that a bone marrow biopsy would be taken to confirm what they suspected and that treatment would start straight away. As it turned out, there were 2 BMAs taken as the first one didn’t provide enough of a sample to confirm everything they needed, but it was enough to confirm he definitely had B-cell acute lymphoblastic leukaemia. The next day, his treatment started. The Dinosaur was under a general anaesthetic for both BMAs and at the same time as the second bone marrow sample was being extracted from his hip, a lumbar puncture was performed to take a sample of spinal fluid for testing, inject chemotherapy into his spinal fluid to protect his brain and spinal cord, a central line was inserted to allow for easier access for intravenous medications, transfusions and blood samples for testing.
What happens after ALL has been confirmed?
Once the diagnosis has been confirmed, the treatment can start. Some hospitals in the UK are offering the ALLTogether 1 trial, which aims to make treatment kinder. The most significant differences between the standard treatment protocol and the clinical trial are that for boys, the length of treatment has been reduced by a year and that there are different randomisation points throughout treatment. These randomisation points mean that at different stages, the child will automatically be offered one pathway or another, and these pathways will have some chemotherapy drugs removed.
Making the decision whether or not to allow your child to take part in clinical trials is a tough one. The best advice I can give is to read all the information you are given by your main treatment centre and then go with your gut instinct.
For us, we decided to consent to take part in the trial. Our reasons for this were:
- As our child is a boy, being part of the trial would reduce the length of his treatment from 3 years down to just over 2 years
- We knew that chemotherapy would make him feel really poorly, so the possibility of having less treatment was appealing
I cannot stress this enough: I am not a medical professional. I am sharing my experiences and opinions, having recently been through this with my own child. He was part of the trial from February 2022 – March 2024.
For those who consent to take part in the trial, the first phase of treatment is the same. Everyone will go through the same induction process, which will include a range of chemotherapies and procedures, including multiple blood tests. lumbar punctures and bone marrow biopsies. After the first month, the results of the bone marrow biopsy will determine which of the study groups the child will be categorised into; for us, it was standard or low risk. This meant that after he had completed induction, he moved into consolidation 1, then went into consolidation 2, then delayed intensification without doxorubicin, and finally, he moved into long-term maintenance.
Some children will have an additional phase called consolidation 3, which comes after delayed intensification and before maintenance. This is another of the big changes in protocol with the trial. Those who have a lower risk of relapse have this entire phase of treatment removed.
Phase 1: Induction
This is the initial, most intensive phase of treatment. The goal here is to quickly kill the leukaemia cells and bring the blood counts back to normal. It’s a critical time designed to get the disease into remission. The induction phase usually lasts for about four weeks. During this time, your child will likely be in the hospital or have frequent clinic visits.
Phase 2: Consolidation
After induction, the fight isn’t over. The consolidation phases are all about wiping out any remaining leukaemia cells that might be hiding in the body. The ALLTogether-1 trial includes two main consolidation blocks.
- Consolidation 1: This phase continues the work of induction with a different combination of chemotherapy drugs. It’s a targeted effort to make sure the cancer doesn’t have a chance to come back.
- Consolidation 2: This second consolidation block uses another set of drugs. The goal is to hit the cancer from different angles, making it much harder for it to survive.
Phase 3: Delayed Intensification
This phase is like a “booster shot” for the treatment. After consolidation, there’s a short break, and then a period of more intensive therapy begins again. The aim is to deliver a powerful dose of chemotherapy to kill any lingering leukaemia cells that may have survived the earlier phases. It’s a crucial step in ensuring a long-term remission.
Phase 4: Maintenance
The final phase is the longest, lasting for a couple of years. The goal of maintenance is to prevent the cancer from coming back. This phase is much less intense than the others and can often be managed at home with oral chemotherapy. Regular check-ups are still required, but it’s a phase that allows for more normalcy in family life.
Is the ALLTogether-1 trial right for my child?
This is a question only your child’s medical team can answer, but here’s what you can expect. Your doctor will look at your child’s specific diagnosis and risk factors. Based on that information, they will determine if your child is a candidate for the trial.
It’s crucial to have an open conversation with the doctors. Don’t be afraid to ask questions! You have a right to understand everything. Here are a few questions you might want to consider:
- Why do you recommend the ALLTogether-1 trial?
- What are the potential benefits for my child?
- What are the risks and side effects of the treatments being studied?
- How does this compare to the “standard treatment” not in the trial?
- Who do I contact if I have more questions?
Real Talk: What This Means for Your Family
Okay, let’s bring this back to our everyday lives. Because at the end of the day, this isn’t just about a trial—it’s about your child, your family, and your journey.
Participating in a clinical trial can add a layer of complexity to an already overwhelming situation. There might be more appointments, more tests, or different protocols to follow. It’s a big decision, and it’s one that should be made with a lot of support and careful consideration.
On the other hand, being part of something like the ALLTogether-1 trial can also feel incredibly empowering. You are not just a passive recipient of care; you are actively contributing to a better future for your child and for all children who will face this disease in the years to come. You are a part of a global effort to make a difference.
No matter what you decide, remember this: your family’s well-being comes first. Trust your instincts, lean on your support system, and know that there is a huge community of parents and caregivers who are here for you. You are not alone.
Let’s Connect
If you’ve been on this journey, I’d love to hear your thoughts and experiences. Have you heard of the ALLTogether-1 trial? What questions do you have? Sharing our stories helps us all feel a little less alone. Leave a comment below or share this post with a friend who might need to read it.
ALLTogether, we’ve got this.
