Your AML Journey — A Complete Guide
This guide walks you through every step of your Acute Myeloid Leukaemia (AML) treatment — from the day you were diagnosed to the road ahead. Please read it at your own pace, as many times as you need. It is here so you do not have to remember everything we discuss.
What is AML?
Acute Myeloid Leukaemia — AML — is a cancer of the blood and bone marrow. "Acute" means it develops quickly and needs to be treated promptly. "Myeloid" tells us which type of blood cell has gone wrong. "Leukaemia" is the medical word for blood cancer.
How it starts
All blood cells are made in the bone marrow — the soft, spongy material inside your larger bones. Normally, immature cells called stem cells mature step by step into healthy blood cells. In AML, a single stem cell develops a mutation (a genetic error), and instead of maturing properly, it keeps dividing and producing large numbers of immature, non-functional cells called blasts.
These blasts build up rapidly — sometimes making up 80–90% of the bone marrow — and leave little room for normal blood cell production. This is why your blood counts dropped and why you have been feeling unwell.
In most cases there is no identifiable cause. It is not caused by lifestyle, diet, or anything you did or did not do. It is the result of random genetic errors that accumulate in a single blood cell.
Your Blood Explained
Blood is made up of three main types of cells, each with a specific and vital job. Understanding them will help you make sense of almost every symptom, test result, and conversation we have over the coming weeks.
Your blood count results — what the numbers mean
Every day (sometimes twice a day) during your admission we check your Full Blood Count (FBC). These are the numbers you will hear us talk about most:
- Haemoglobin (Hb) — the protein in red cells that carries oxygen. Normal is roughly 120–160 g/L. We usually transfuse when it drops below 70–80 g/L.
- Neutrophils (Neut) — the most important infection-fighting white cells. Normal is above 2.0 × 10⁹/L. Below 0.5 is called severe neutropenia — this is the most dangerous period.
- Platelets (Plt) — clotting cells. Normal is 150–400 × 10⁹/L. We typically transfuse when they drop below 10–20 × 10⁹/L, or higher if you are bleeding.
Why You Feel Unwell
Now that you understand the three blood cell types, your symptoms will make complete sense. The blasts crowding your bone marrow are preventing normal production of each cell type, causing three distinct problems at the same time.
Your symptoms: Tiredness, fatigue, shortness of breath, dizziness, pale skin, rapid heartbeat.
Why it happens: With fewer red cells, your blood carries less oxygen to your muscles and organs. Your heart tries to compensate by beating faster — which is why you may feel your heart pounding even at rest.
What we do: We monitor your Hb daily and give you red cell transfusions when needed. A transfusion usually takes 2–4 hours and most patients feel noticeably better within a day.
Your symptoms: Fever, chills, rigors, sweats, feeling suddenly very unwell.
Why it happens: The blast cells that fill your marrow are not functional — they cannot fight infection. Simultaneously, the normal neutrophils have been crowded out. With very few working white cells, even bacteria that normally live harmlessly on your skin or in your gut can cause a serious infection.
What we do: We start antibiotics immediately at the first sign of fever. We keep you in a protected environment, use antiseptic handwash rigorously, and often start antifungal and antiviral medicines as prevention.
Important: A temperature of 38°C or higher is a medical emergency in this context. Tell the nurse immediately — do not wait to see if it passes.
Your symptoms: Bruising easily, bleeding gums, nosebleeds, tiny red dots on the skin (petechiae), blood in urine or stool.
Why it happens: With very few platelets, the clotting process cannot start properly. Even minor bumps or cuts may bleed longer than normal.
What we do: Platelet transfusions are given when counts are critically low, or when you show signs of bleeding. We also take precautions — no IM injections, careful mouth care, soft toothbrushes.
Bone pain: Your bones are literally packed with leukaemia cells. This can cause deep aching pain, most commonly in the back, hips, and sternum.
Enlarged spleen/liver: Blast cells can accumulate in organs, causing discomfort or a feeling of fullness in the abdomen.
Gum swelling: A small number of AML subtypes (monocytic variants) cause the gums to enlarge — this will improve with treatment.
Very high white cell count (hyperleukocytosis): In rare cases, an extremely high blast count can cause symptoms in the eyes, brain, or lungs. This is a medical emergency and is treated urgently.
Prognosis — Not Staging
Unlike many solid cancers (e.g., breast or colon cancer), AML is not divided into stages 1–4. Instead, we use prognostic markers — genetic mutations and chromosome changes found in your leukaemia cells — to understand how the disease is likely to behave and which treatment approach gives you the best chance.
Genetic testing (cytogenetics, molecular studies) on your bone marrow biopsy can take 2–3 weeks to return. We will not have the full picture on Day 1 — and that is completely normal. We act decisively first and refine our plan as results arrive.
The most important markers we test for
| Marker | What it is | Risk group | Why it matters |
|---|---|---|---|
| FLT3-ITD | Mutation in the FLT3 gene — causes uncontrolled cell growth | Adverse | Increases relapse risk; targeted drugs (e.g. midostaurin) are added to treatment. Usually indicates transplant is needed. |
| NPM1 | Mutation in the NPM1 gene | Favourable (if FLT3 negative) | One of the most common AML mutations. When FLT3 is absent, it carries a good prognosis. Also used as a marker of minimal residual disease (MRD). |
| CEBPA (biallelic) | Mutation in both copies of the CEBPA gene | Favourable | Associated with good response to standard chemotherapy; transplant may not be necessary in first remission. |
| IDH1 / IDH2 | Mutations in metabolic enzymes | Intermediate | Targetable with specific oral drugs (enasidenib, ivosidenib). Increasingly important in older patients. |
| t(8;21) / RUNX1-RUNX1T1 | Chromosome translocation — piece of chr 8 swaps with chr 21 | Favourable | Core-binding factor AML. Usually responds well to high-dose cytarabine consolidation; transplant often not required in CR1. |
| inv(16) / CBFB-MYH11 | Inversion within chromosome 16 | Favourable | Also core-binding factor AML — similar good prognosis as t(8;21). |
| TP53 | Mutation in the tumour suppressor gene | Adverse | Associated with lower remission rates and higher relapse. Emerging targeted therapies being studied. |
| Complex karyotype | ≥3 chromosome abnormalities | Adverse | Harder to treat with standard chemotherapy; transplant is strongly recommended if achieved. |
| Normal karyotype | No chromosome abnormalities | Intermediate | Risk depends on accompanying molecular mutations (NPM1, FLT3, etc.). The most common result. |
Risk categories at a glance
- Favourable Responds well to chemotherapy alone in many cases. Transplant in first remission is not always needed.
- Intermediate Case-by-case decision. Other factors (age, overall health, MRD status) guide the transplant discussion.
- Adverse Higher relapse risk. Transplant in first remission is usually recommended if you are eligible and a donor is available.
After treatment, we test for MRD — tiny amounts of leukaemia that are too small to see on routine tests. A negative MRD is a very encouraging sign. We monitor this throughout your treatment to guide decisions.
Your First Few Days
Before we can start chemotherapy safely, we need to know as much as possible about your general health. Chemotherapy is powerful — we want to be sure your heart, kidneys, liver, and lungs can handle it, and we want to address any problems that could complicate treatment.
We use a scale called the ECOG Performance Status (0–4) to assess your overall fitness for intensive treatment. 0 = fully active, 1 = restricted but ambulatory, 2 = in bed <50% of day. Most patients under 65 who are otherwise well score 0–1 and are candidates for intensive induction chemotherapy.
An ultrasound of your heart to measure its pumping function (ejection fraction). Certain chemotherapy drugs — particularly anthracyclines like daunorubicin — can affect the heart. We need a baseline reading, and we will not proceed if your heart function is significantly impaired.
Comprehensive blood panel to check kidney function (creatinine, eGFR), liver function (LFTs), electrolytes, clotting profile, blood group, and infectious disease screens (HIV, hepatitis B and C). These results guide drug dosing and flag any issues to address first.
If not already done, a bone marrow biopsy (from the back of the hip bone under local anaesthetic) confirms the diagnosis, establishes the blast percentage, and provides the tissue for all the genetic testing described in Chapter 4.
We apply for medical scheme authority for your treatment at the same time as starting investigations. This process runs in parallel — it does not delay treatment. Our team and the hospital's case managers handle the paperwork. Venetoclax specifically often requires a separate authority code; we will manage this for you.
If we find an active infection, an abnormal heart finding, or severely abnormal kidney function, we will treat that first or adjust our approach. Safety is paramount — a brief delay to optimise your health before chemotherapy is often the right call.
We will arrange HLA typing (a blood test that identifies your unique tissue proteins) in the first days of admission. This is important: once chemotherapy starts, the blasts disappear from your blood and HLA typing results become difficult to interpret. Getting it done now, before treatment, means we have an accurate result ready if it is ever needed.
HLA typing does NOT mean you are going to have a transplant. It means we are prepared. Just as you pack a first-aid kit for a road trip without expecting an accident.
HLA typing must only be done when we specifically request it, using our laboratory, with the correct sample timing. Unsolicited or incorrectly timed tests are unreliable and can create confusion. If family members are told to get tested elsewhere, please check with us first.
Preparing for Chemotherapy
Chemotherapy drugs, blood products, antibiotics, and fluids cannot safely be given through a standard drip in your arm vein — the drugs are too harsh and the veins too small. You will need a central venous access device inserted before treatment starts.
PICC Line
A thin, flexible tube inserted into a vein in your upper arm and threaded to a large vein near your heart. Done at the bedside or in radiology under ultrasound guidance. Local anaesthetic is used — you will feel pressure, but not sharp pain. Takes about 30–45 minutes.
- Usually 2–3 lumens (separate channels) allowing multiple drugs simultaneously
- Stays in place for weeks to months — you can go home with it
- Keep the site clean and dry; nursing staff change the dressing regularly
CVC (Central Venous Catheter)
Inserted into the neck or below the collarbone. Used when PICC placement is not possible. Also done under local anaesthetic with ultrasound guidance.
Most patients grow to appreciate their PICC line — all blood draws, medications, and transfusions go through it. No more needles in your arm many times a day.
Induction Chemotherapy
Induction is the first course of chemotherapy. The goal is to achieve Complete Remission (CR) — reducing the blast count in your bone marrow to below 5% and restoring normal blood cell production.
AML is a rapidly dividing cancer. Waiting 2–3 weeks for all genetic results before starting treatment could allow the leukaemia to progress significantly. We choose the most appropriate induction regimen based on your age, fitness, and what is known on admission — then refine the overall plan as results arrive.
DAV Protocol
Daunorubicin + Ara-C (Cytarabine) + Venetoclax
- Preferred when medical aid approves Venetoclax
- Venetoclax is an oral BCL-2 inhibitor — triggers cell death in blast cells
- Improves remission rates over standard chemotherapy alone
- Taken as a tablet once daily during the chemotherapy phase
"3+7" Protocol
3 days Daunorubicin + 7 days Cytarabine
- The established standard of care for decades
- Used when Venetoclax is not accessible
- Remains highly effective — many patients achieve remission
- Same nursing care, monitoring, and side effects apply
Induction chemotherapy is given in hospital. You will not go home during this period. The first 7 days are the active chemotherapy phase; the remaining time is monitoring and recovery.
During the 7 Days of Chemotherapy
Mild nausea is common — we give anti-nausea medication routinely. Your urine may turn pink or orange-red for 1–2 days after the infusion. This is normal and not blood.
Generally well-tolerated. Some patients develop eye redness (cytarabine conjunctivitis) — treated with steroid eye drops. Mild nausea and fatigue are common.
Chemotherapy does its job — it also destroys remaining normal cells in your marrow. By day 5–7 your counts will drop daily. This is expected and necessary.
The mouth and gut lining are sensitive to chemotherapy. You may develop mouth sores and loose stools. Good mouth care from day 1 significantly reduces severity.
The infusions stop — but the biological effects continue for several more weeks as your marrow recovers.
The Neutropenic Phase
After chemotherapy ends, your bone marrow enters a period of near-complete silence. The leukaemia cells have been destroyed, and the new healthy cells have not yet had time to grow back. This period — called the nadir — is when your counts are at their absolute lowest and you are most vulnerable.
A temperature of ≥38.0°C during neutropenia means bacteria may have entered the bloodstream. Blood cultures are taken immediately and broad-spectrum IV antibiotics are started within 30–60 minutes.
Transfusion support
- Red cell transfusions: When Hb drops below 70–80 g/L. Each unit takes 2–4 hours. Most patients need 2–4 units per week during the nadir.
- Platelet transfusions: When platelets fall below 10–20 × 10⁹/L. Takes 30–60 minutes.
Infection prevention
All staff, visitors, and family members must sanitise hands on entering and leaving your room — every time, without exception.
Visitors with colds, sore throats, or any infection must not visit. Children under 12 should generally not visit during the nadir. No fresh flowers or live plants (fungal spores).
Antifungal (fluconazole or posaconazole), antiviral (aciclovir), and in some cases antibiotics — given to prevent infections, not because you have one.
Low-microbial diet during the nadir — no raw fish, raw or undercooked meat, unpasteurised dairy, or raw sprouts. Well-cooked food is completely fine.
Managing Side Effects
We will work very hard to relieve your symptoms. But it is important to be honest: for some side effects, we can achieve perhaps 80% relief — not 100%. Some symptoms are directly caused by the bone marrow being temporarily empty, and the only true cure for those is white cell recovery. We will always explain why, and we will never leave you without a plan.
Why it happens: The cells lining the mouth and gut divide rapidly — also making them sensitive to chemotherapy. The mucous membrane breaks down, forming painful ulcers.
When: Usually develops day 5–10. Peaks around day 10–14. Resolves as counts recover.
What we do: Regular mouthwashes, topical anaesthetic gels (lidocaine), systemic pain medication including opiates if needed. Good mouth care from Day 1 significantly reduces severity.
Why it doesn't fully go away: Until new mucosal cells regrow (which requires count recovery), complete resolution is not possible. We manage the pain and prevent secondary infection.
Why it happens: Mucositis affects the entire GI tract — not just the mouth. The gut lining becomes inflamed, absorbs less fluid, and moves contents faster than normal.
What we do: Anti-diarrhoeal medication (loperamide), IV fluids to prevent dehydration, electrolyte replacement, stool cultures to exclude infection.
Why it doesn't fully go away: Gut wall recovery depends on count recovery. Until then, diarrhoea may persist at a reduced level despite medications.
Why it happens: Chemotherapy triggers the vomiting centre in the brain and irritates the stomach lining.
What we do: Anti-nausea medication given prophylactically (ondansetron, dexamethasone, metoclopramide) before and around the clock during treatment. Modern antiemetics are excellent — tell us immediately if nausea breaks through.
Why it happens: Multiple causes — anaemia, direct toxic effects of chemotherapy, inflammation, poor nutrition, poor sleep, and emotional stress.
What we do: Transfusions for anaemia, gentle physiotherapy, nutritional support, psychological support. Short walks in the corridor when counts permit are often more effective than lying in bed.
Honest expectation: Fatigue will be significant during the nadir. Full energy recovery takes months after the admission ends.
Why it happens: With no neutrophils, bacteria from your own skin or gut can enter the bloodstream. Fungal infections are also a risk.
What we do: Blood cultures, then immediate IV broad-spectrum antibiotics. Antibiotic selection is updated when culture results return. We review the regimen daily.
Honest expectation: Some fever episodes will not have a clear identified source — "fever of unknown origin in neutropenia" is well-recognised. We treat empirically and broaden coverage if needed.
Why it happens: Hair follicle cells divide rapidly — chemotherapy damages them. Loss usually begins 2–3 weeks after first treatment.
What we do: Hair loss from AML chemotherapy is temporary. Regrowth begins within 4–8 weeks of completing treatment, full regrowth takes 3–6 months. We can refer you to support services for wigs and headwear.
Sources: Mucositis pain, bone pain during recovery (can be intense), headaches, procedural pain.
What we do: Pain ladder approach — paracetamol first, then escalating to opiates if needed. Mucositis pain may require IV morphine. Please tell us your pain score honestly — we do not leave pain untreated.
Why it happens: Nausea, mucositis, altered taste, fatigue, and the emotional weight of hospitalisation all reduce desire to eat.
What we do: Dietitian assessment, high-calorie supplements, small frequent meals. If intake is critically reduced, nasogastric tube nutrition may be considered.
Why it happens: A life-changing diagnosis and extended hospitalisation with many unknowns. Fear, grief, anxiety, and sadness are completely normal responses — not signs of weakness.
What we do: Psychological support, oncology social worker, clinical psychologist referral, spiritual care if requested, family meetings.
Please never feel you need to "be strong" for us. Honesty about how you are feeling emotionally helps us support you better.
Count Recovery
After the nadir, the bone marrow — now (hopefully) free of leukaemia — begins producing new healthy cells. This is called count recovery.
You will notice the platelet count beginning to climb. Transfusion requirements reduce.
When neutrophils are consistently above 0.5 × 10⁹/L, you are no longer neutropenic. Fever risk drops dramatically.
Mucositis heals, diarrhoea resolves, appetite returns, energy begins to improve. Most patients describe this as the turning point.
Red cell production lags behind. Occasional transfusions may still be needed even after neutrophil recovery.
Count recovery timing varies between individuals. Some patients recover by day 21; others take until day 35 or beyond. We monitor daily and share progress with you — but we will not give you a date we cannot guarantee.
Going Home Briefly
Once your counts have recovered sufficiently and you are clinically well, you may be able to go home for a short period (typically 1–2 weeks) before your restaging bone marrow biopsy. Use this time to rest, eat well, and spend time with family.
Criteria to go home
- Neutrophils consistently above 0.5–1.0 × 10⁹/L
- Platelets above 50–80 × 10⁹/L
- No active fever or ongoing infection
- Able to eat and drink adequately
If your temperature reaches 38.0°C at home, come to the emergency department immediately. Do not take paracetamol to bring it down and "see if it helps" — come straight in.
Blood counts checked 2–3 times per week as an outpatient. Transfusions can be given in the day ward if needed.
Continue good hand hygiene, avoid large crowds, avoid sick contacts, cook food thoroughly. You are not fully immunocompromised at this stage — but not at baseline either.
Restaging — What Happens Next
Approximately 28–35 days after the start of induction chemotherapy, we perform a restaging bone marrow biopsy. This tells us how the leukaemia responded.
- Complete Remission (CR): Blast count below 5%, blood counts recovering. This is the goal.
- Complete Remission with Incomplete Recovery (CRi): Blasts cleared but counts not yet fully normalised. We may repeat the marrow in 2–4 weeks.
- Partial Remission: Blasts reduced but still above 5%. Further treatment needed before consolidation.
- Refractory Disease: Inadequate response. Requires a different treatment approach (see Section 14).
The cytogenetics and molecular results from your original biopsy are now back. Your risk category is confirmed, the transplant conversation becomes concrete, and consolidation planning begins. We encourage you to bring a family member to this meeting.
Consolidation or Re-induction
If you are in Complete Remission
CR is excellent news — but not the end. Consolidation chemotherapy (typically High-Dose Cytarabine / HiDAC) is given to deepen the remission and reduce relapse risk. Each cycle involves a 3–5 day hospital admission plus recovery — generally less intense than induction.
The number of cycles depends on your risk group, MRD status, and transplant eligibility.
If you are NOT in Complete Remission
A proportion of patients do not achieve CR after first induction. This is disappointing news but it does not mean we stop. We move to a re-induction regimen designed to overcome resistance.
FLAG-Mitoxantrone (Re-induction)
- F — Fludarabine
- LA — High-dose Ara-C (Cytarabine)
- G — G-CSF (improves chemotherapy uptake into leukaemia cells)
- Mito — Mitoxantrone (anthracycline-like drug; attacks leukaemia DNA)
FLAG-Mito is an intensive re-induction regimen. The admission and recovery profile is similar to initial induction. Many patients achieve CR with this approach, after which consolidation and transplant discussions proceed as above.
The Transplant Discussion
For patients with intermediate or adverse-risk AML, an allogeneic stem cell transplant (allo-SCT) offers the best chance of long-term cure — healthy stem cells from a matched donor replace your bone marrow permanently.
Who gets offered transplant?
- Adverse-risk AML in first CR — strongly recommended
- Intermediate-risk AML in first CR — case-by-case (MRD status, fitness, donor availability)
- Favourable-risk AML — generally NOT recommended in CR1 unless relapse occurs
- Any AML in second remission (CR2) — transplant is the priority
Finding a matched donor takes time — sometimes months. By having your HLA type established before induction, the search can begin immediately if needed. No time is lost when the decision is made.
We will have a detailed, unhurried conversation about transplant once we have your full results, remission status, and a clear picture of your overall health. You will have time to ask questions and meet the transplant team.
Useful Resources
These organisations provide high-quality, patient-friendly information about AML.
Comprehensive AML patient guide
AML — what you need to know
Plain-language AML guide
Practical support and information
No question is too small. No symptom is too trivial to report. This guide is here to help you between conversations with your team — but it does not replace those conversations.
This guide has been prepared by the Haematology team at our centre specifically for our patients. Medical information is for educational purposes. Always follow the advice of your treating physician. Last reviewed 2026.