The information I share here comes from my own experience, my medical team, and trusted medical sources. It reflects my personal journey with Early T-cell Precursor Acute Lymphoblastic Leukaemia (ETP-ALL), my specific diagnosis, treatment plan, and understanding of what’s happening in my body.
No two leukaemias are exactly the same. Each case is unique, and everyone’s path through diagnosis and treatment looks a little different.
My hope in sharing this is to shed a bit of light on what ETP-ALL can look like, to help others understand it better, and maybe to offer comfort or clarity to anyone who’s going through something similar, whether it’s your own journey or that of someone you love.
First signs
When something life-changing happens, it often starts quietly, with small signs we might easily dismiss. That’s exactly how my story began. What I first thought was simple tiredness turned out to be something far more serious, and this post marks the beginning of my journey with Early T-cell Precursor Acute Lymphoblastic Leukaemia (ETP-ALL) as a 45 years old woman.
Each year, around 790 people in the UK are diagnosed with acute lymphoblastic leukaemia (ALL), representing less than 1% of all new cancer cases. Of these, roughly 25% are the T-cell type (T-cell ALL), and around 7% are the ETP-ALL subtype, meaning that only about 13 people in the UK each year are diagnosed with this specific form.
What is ETP-ALL?
Early T-cell Precursor Acute Lymphoblastic Leukaemia (ETP-ALL) is a rare subtype of T-cell acute lymphoblastic leukaemia (T-ALL) first identified in 2009 and recognised as a distinct disease by the WHO in 2016.
Acute lymphoblastic leukaemia (ALL)
Acute lymphoblastic leukaemia (ALL) is a type of blood cancer in which the bone marrow produces too many immature white blood cells called lymphoblasts. These cells are unable to function properly and can crowd out normal blood cells, leading to an increased risk of infection, anaemia, and bleeding.
T-cell acute lymphoblastic leukaemia (T-ALL)
T-cell ALL (T-ALL) is a subtype of ALL where the immature lymphoblasts develop into T cells, which are a type of white blood cell important for the immune system.
Early T-cell Precursor Acute Lymphoblastic Leukaemia (ETP-ALL)
ETP-ALL is a very early form of T-ALL, arising from immature T-cell precursors in the bone marrow. These precursors have the potential to develop not only into T cells but also into myeloid blood cells. This makes ETP-ALL biologically distinct from other forms of T-ALL.
At the genomic level, ETP-ALL cells have specific patterns of gene mutations and molecular changes. “Genomic” refers to the complete set of genes in a cell. In ETP-ALL, these genomic changes affect the way cells grow and respond to treatment. Understanding the genomic profile helps doctors personalise treatment by identifying the best combination of chemotherapy, stem cell transplantation, and monitoring strategies for each patient.
Adapted treatment
Because of these characteristics, treatment for ETP-ALL is complex and carefully tailored. Modern protocols, such as UKALL14, adapt chemotherapy intensity, central nervous system protection, and timing of consolidation or stem cell transplantation based on the patient’s response and individual features.
The perfect candidate for the treatment
As a young, fit, and healthy patient, I am an ideal candidate for this advanced, personalised treatment approach, which offers the best chance of achieving a successful outcome.
(Source: George et al., 2024; Pui et al., 2011; Hoffman, 7th edition; GRAALL / UKALL / COG clinical trial publications)
Symptoms of Acute Lymphoblastic Leukaemia
Most symptoms of acute leukaemia are caused by leukaemia cells filling the bone marrow. There is not enough space to make the usual number of healthy blood cells your body needs. This can cause symptoms like:
- getting infections because you have too few healthy infection fighting white blood cells
- being pale and tired because you have a low number of red blood cells (anaemia)
- unusual bleeding, such as bleeding gums or nose bleeds, or bruising due to low levels of platelets, which help the blood to clot.
(source: Macmillan Cancer Support)
In my case, I was feeling more tired than usual, a bit breathless going up the stairs, my vision seemed a bit blurry, I had a ‘whooshing’ noise at times in one ear, and what caused me to call the GP was a lump under my chin and unexplained bruises.
Initial treatment protocol: UKALL14
The treatment plan we began following for my Early T-cell Precursor Acute Lymphoblastic Leukaemia (ETP-ALL) was based on the UKALL14 protocol, a finalised clinical trial designed for adults newly diagnosed with acute lymphoblastic leukaemia (ALL).
Biopsy and pre-induction phase
On the very first day of my pre-induction phase, I started steroids (Dexamethasone) and had a bone marrow biopsy. The results confirmed that I do not have the Philadelphia chromosome, which is found in about 20–30% of adults diagnosed with ALL. That was very good news.
In-patient treatment
I’m receiving all of my treatment as an in-patient, staying in my own room as I am currently neutropenic (meaning my immune system is very low). We minimise every possible risk of infection. I feel extremely lucky to have a beautiful view over open fields, wildlife, and a working farm that keeps me grounded throughout the day.
Leukaemia and neutropenia
Until a transplant becomes possible, I’ll remain at University Hospital Crosshouse – Haematology and Medical Oncology ward. Afterwards, I will be transferred to the Glasgow Transplant Unit at the Queen Elizabeth University Hospital.
Overview of the UKALL14 protocol we initially followed
Although we are no longer following this protocol (explained below), these were the phases we started under UKALL14:
- Pre-Induction Phase – 4 days
Daily Dexamethasone (steroids) to prepare the body and reduce leukaemia cells before chemotherapy.
- Phase 1 Remission Induction – 28 days (4 weeks)
Goal: Achieve remission or partial remission. Included:
- Daunorubicin (IV) & Vincristine (IV) weekly
- High-dose Dexamethasone for 4 days then lower dose for 3 days
- Asparaginase Erwinase (6 doses from week 3)
- Intrathecal Methotrexate (once day 13)
A bone marrow biopsy follows at the end of this phase to assess Minimal Residual Disease (MRD).
A change in direction: Refractory leukaemia
As we approached the end of the first cycle of induction under the UKALL14 protocol, we learned that my leukaemia was refractory, meaning it did not respond to the treatment and did not achieve remission.
Remission is achieved when:
- Blood cell counts return to normal
- Less than 5% of leukaemia cells are present in the bone marrow
- There are no leukaemia cells detectable elsewhere in the body
Because of this, we are no longer following UKALL14 and are now moving towards a bespoke treatment plan tailored specifically to my situation.
Of course, the news was disappointing, and it felt for a moment as though we were back at square one.
But there is also very real good news:
- The treatment did reduce and control my white blood cell levels.
- My body has coped incredibly well with the chemotherapy, with very few side effects.
- This strong response means I am in good condition to begin a new treatment strategy.
The new plan: a bespoke remission reinduction chemotherapy treatment
Since the initial UKALL14 protocol did not achieve the expected response and the leukemia proved to be refractory, the Multi-disciplinary Teams (MDTs) at Crosshouse University Hospital (where I have been an in-patient since my diagnosis on 3 October), along with experts at the Beatson in Glasgow, the transplant team at the Queen Elizabeth University Hospital, the apheresis team, and specialists in England, have worked together to design a new treatment protocol tailored specifically for me.
Because this new regimen combines chemotherapy drugs that are not usually used together, we first needed to obtain both funding and formal approval from the medical board.
The board met exceptionally on 19 November, and the decision was made to start treatment on 20 November.
The new treatment regimen
The treatment will consist of four chemotherapy drugs:
- Venetoclax (oral) — Days 1 to 14
The dose gradually increases:
Day 1: 100 mg
Day 2: 200 mg
Day 3: 300 mg
Day 4 onwards: 400 mg
Venetoclax is a targeted therapy known as a BCL2 inhibitor.
Some leukaemia cells produce too much of the BCL2 protein, which prevents them from dying. By blocking BCL2, Venetoclax helps destroy these leukaemia cells.
- Fludarabine (IV) — Days 2 to 6
Fludarabine is an anti-metabolite chemotherapy drug. Its mechanism of action is based on inhibiting the synthesis of DNA components, with the goal of preventing cells from carrying out DNA replication.
- Cytarabine / Ara-C (IV) — Days 2 to 6
Cytarabine is also an anti-metabolite. It works similarly to fludarabine and prevents cells from carrying out DNA replication.
- Idarubicin (IV) — Days 4 to 6
Idarubicin destroys fast-dividing cells, including cancer cells, slowing and stopping their growth.
These three IV drugs are usually part of a regimen known as FLAG-Ida, which includes a fourth component, G-CSF. I will not receive G-CSF, at least not at this stage.
The full cycle of treatment lasts 14 days.
Expected effects: blood count drop & transfusions
This treatment will intentionally cause bone marrow suppression (myelosuppression), meaning all of my blood counts will drop.
This is expected and desirable: we want my bone marrow to stop producing T-cells so the chemotherapy can work effectively against the cancer.
As a result, my immune system will be extremely vulnerable (I am already neutropenic), and I will require regular blood and platelet transfusions.
All blood transfusions must be irradiated. This means the blood is treated with radiation to prevent Transfusion-Associated Graft-versus-Host Disease (TA-GvHD) a rare but serious complication caused by donor lymphocytes. I will be carrying a card or wearing a bracelet to ensure all healthcare providers are aware of this requirement.
After the treatment
Once this 14-day chemotherapy cycle is complete, we will wait for my bone marrow to recover and begin producing new blood cells again. This can take up to 4 weeks.
When my counts is building up, I will have another bone marrow biopsy to assess how effective the treatment has been.
- If I reach complete remission, or partial remission (less than 5% leukaemia cells in the bone marrow), I will become eligible for the stem cell transplant, which remains the essential next step.
- If the treatment works but remission is not yet achieved, I will undergo a second cycle of the same regimen.
Preventative medicines
Breaking down a large number of cancer cells at once carries a risk of Tumour Lysis Syndrome (TLS).
When cancer cells die rapidly, they release substances into the bloodstream that the kidneys may struggle to clear. These imbalances can lead to kidney damage.
To prevent this, I receive rasburicase before starting chemotherapy, at least at the start of the cycle.
I also receive ondansetron as a preventative medication against nausea and vomiting before chemo treatment.
One of the side effects of the cytarabine is dry eyes, which will also be a side effect of the blood count dropping; therefore, eye drops are administered to help.
The stem cell transplant
If my body responds well to this new treatment and I reach the right level of remission, the next essential step will be a stem cell transplant. Everything we are doing now is focused on getting me to that point as safely and quickly as possible.
The final and most crucial step of my treatment journey will be an allogeneic haematopoietic stem cell transplant (Allo-HSCT), meaning I will receive healthy stem cells from a compatible donor.
This transplant aims to replace my stem cells with new, healthy cells capable of producing normal blood and immune cells. It is considered the best option for long-term remission and cure in ETP-ALL.
After the transplant, I’ll be closely monitored for several weeks to ensure that the donor cells engraft properly and that my blood and immune system starts rebuilding safely. Recovery takes time, but this is the stage that gives my treatment its greatest chance of long-term success.
The good news is that at this stage, there are already a lot of options for donors in the unrelated donor list. My sister will get tested as well.
Join the stem cell donor register
If you are healthy and eligible, please consider joining the stem cell donor register. It is one of the simplest yet most powerful ways to help save the life of someone with leukaemia, lymphoma, or another blood cancer who is waiting for a match. You can register with DKMS, who make the process straightforward and accessible.
Becoming a potential donor truly has the power to change someone’s future.
Gratitude beyond words
My gratitude for the NHS teams who care for me every day is difficult to put into words. Their skill, compassion, and unwavering dedication shape every step of this journey.
I am also deeply thankful for my family, friends, and wider community. Their constant support surrounds us like a safety net, giving strength to my family and me when we need it most.
About haematopoietic stem cell transplant (HSCT)
What is a haematopoietic stem cell transplant?
A stem cell transplant replaces the faulty bone marrow (where blood cells are made) with healthy stem cells from a donor.
These new stem cells grow and restore the body’s ability to produce normal blood cells and fight infections.
The origins of stem cell transplantation trace back to the 1940s and 1950s, when doctors observed the devastating effects of radiation exposure on bone marrow in Hiroshima and Nagasaki survivors. This led to early research exploring how bone marrow infusions could help restore blood cell production after such damage, the foundation of today’s HSCT procedures.
Before the transplant
Before the transplant, high-dose chemotherapy (and sometimes radiotherapy) is used to:
- Destroy remaining leukaemia cells
- Suppress the immune system, so the body accepts the donor cells
This process is called conditioning.
Type of transplant
- Allogeneic transplant – stem cells come from another person (a donor). This is the standard approach for T-cell ALL.
- Autologous transplant – stem cells come from the patient’s own body. This is less common in ALL, as there’s a risk of reintroducing leukaemic cells.
Finding the best donor
The goal is to find someone whose HLA (human leukocyte antigen) markers are as close as possible to the patient’s. These markers help the immune system distinguish between “self” and “foreign” cells.
Priority for matching generally goes in this order:
- Matched sibling donor, a brother or sister with the same HLA type (25–30% chance).
- Matched unrelated donor, identified through global bone marrow registries.
- Haploidentical (half-matched) family donor, often a parent or adult child. Thanks to medical advances, these transplants are now very successful, with special treatments to reduce immune complications.
- Umbilical cord blood transplant, used when no suitable donor is found.
Unrelated Donor Search
If there’s no suitable family donor, the search expands to international donor registers. These registers hold millions of volunteer donors who have had their HLA types tested. A close 10/10 match from an unrelated donor can be just as effective as a sibling match. Being on a donor register can literally give someone like me the chance of a cure. If you are eligible, please consider joining a stem cell donor list. It’s a small step for you, but it can mean the world to someone fighting leukaemia.
Life after transplant
Recovery takes time. The new immune system gradually rebuilds, and the medical team closely monitors for:
- Infections
- Graft-versus-host disease (GvHD), when donor cells attack the body
- Signs of leukaemia returning
Although HSCT is a big challenge, it offers the best chance for a cure. The doctors have told me that I’m one of the best candidates for this treatment and for a stem cell transplant, and knowing that gives me a lot of confidence in my journey ahead.
(Sources: NHS UK, Manchester Foundation Trust (HSCT Service), Cancer Research UK, Leukaemia Care, Blood Cancer UK, and Appelbaum FR et al., NEJM (2012). Information adapted for educational purposes and based on my own treatment experience.)
Minimal Residual Disease (MRD) monitoring in ALL
What is Minimal Residual Disease (MRD)?
MRD (Minimal Residual Disease) refers to the small number of leukaemia cells that can remain in the body after treatment, even when tests show remission. It is one of the most important indicators of how well treatment is working and whether there is a risk of relapse.
What is MRD telling us?
Doctors track MRD using molecular markers that are specific to each patient’s leukaemia cells.
Today, modern testing techniques such as next-generation sequencing (NGS) and digital PCR can detect even tiny traces of the disease, far beyond what a microscope can reveal. MRD is usually measured from bone marrow samples, though sometimes blood can be used, especially in T-ALL cases.
Because MRD gives doctors such a precise view of how treatment is working, it plays a key role in deciding the next steps of therapy, including whether to proceed with a stem cell transplant.
(Source: Adapted from current medical literature and research, including the UKALL14 protocol and studies from GMALL, PETHEMA, GIMEMA, and other collaborative trials on MRD monitoring in acute lymphoblastic leukaemia.)
Reiki Therapy and Cancer Care
Reiki is a complementary therapy that supports people during cancer treatment and promotes general wellbeing. It is not a cure for cancer, but it can help manage symptoms and improve quality of life.
What Is Reiki?
Reiki (pronounced ray-key) is a Japanese healing practice developed by Mikao Usui in the early 20th century. The word Reiki means “universal energy”, the life force believed to flow through all living things (Ki in Japan, Chi in China, Prana in India). Reiki is not linked to any religion or belief system.
During a session, a Reiki practitioner places their hands gently on or just above your clothed body, aiming to balance your body’s energy fields and promote relaxation.
Why people with cancer use Reiki?
Many people with cancer use Reiki alongside their medical treatment as a supportive or palliative therapy. It can:
- Help you feel deeply relaxed
- Reduce emotional stress and anxiety
- Improve general wellbeing
- Help you cope with treatment and difficult moments
Patients often report feeling calmer and more centred after Reiki, partly due to the gentle touch and focused, calm environment. It is sometimes offered in hospices and hospitals as part of holistic care.
Research and evidence
A recent study (Journal of Pain and Symptom Management, 2024) evaluated Reiki sessions for cancer patients during infusion treatments. It showed significant short-term improvements in:
- Pain
- Fatigue
- Anxiety
- Nausea
- Overall wellbeing
Patients also expressed high satisfaction, describing Reiki as soothing, grounding, and emotionally supportive during a challenging time.
Reiki, a valuable complementary therapy
Reiki can be a valuable complementary therapy for people undergoing cancer treatment, helping them relax, reduce stress, and enhance emotional well-being. While Reiki does not treat cancer itself, it may play a meaningful role in supportive care and quality of life.
My own consultant highly recommended that I continue Reiki throughout my treatment, as it helps me stay grounded, relaxed, and focused on my healing journey.
(Sources: Cancer Research UK – Reiki (Complementary and Alternative Therapies); Journal of Pain and Symptom Management, 2024 – “Evaluation of a Reiki Volunteer Program within Two Cancer Infusion Centres”, via eCancer)