Side effects and symptoms
Trastuzumab emtansine side effects: the complete list and timeline
Many people find trastuzumab emtansine gentler than the chemotherapy they had before, but it still has side effects. Tiredness, nausea, headache, nosebleeds, low platelets and raised liver enzymes are common, and some people get nerve changes. Serious heart, lung, liver or bleeding problems are uncommon. This page lists the effects and when they tend to appear.
On this page
- What side effects does trastuzumab emtansine cause?
- How the side effects fit together
- When side effects tend to appear
- The vocabulary, in plain language
- Honest limits of any side effect list
- Why heart scans and breathing symptoms matter
- Easing the common side effects
- What people assume about T-DM1 side effects
- Common questions about trastuzumab emtansine side effects
The short answer
What side effects does trastuzumab emtansine cause?
Trastuzumab emtansine, also called T-DM1 or Kadcyla, joins a HER2 antibody to a chemotherapy medicine called DM1. Because the chemotherapy is mostly delivered to HER2-positive cancer cells, many people find it gentler than the chemotherapy they had before. It still has side effects, though, and knowing them helps you plan. The most common are tiredness, feeling sick, headache, constipation, muscle and joint aches, nosebleeds, and changes on blood tests, especially low platelets and raised liver enzymes. Some people get tingling or numbness in the hands and feet, dry mouth, mouth sores, taste changes, trouble sleeping or dry eyes. Significant hair loss is uncommon. Less common but important effects include reactions during the drip, a fall in heart pumping strength, inflammation of the lungs, serious bleeding and serious liver problems. T-DM1 can harm an unborn baby, so reliable contraception is needed during treatment and for seven months afterwards. Side effects tend to follow a pattern within each three-week cycle: tiredness and nausea in the first few days, a dip in platelets and a rise in liver tests around the first week, and recovery before the next dose. Some effects, such as nerve changes and tiredness, can build up over several cycles. Your team checks blood tests before each dose and repeats heart scans every few months, so many problems are found before you notice them.
Many find it gentler than earlier chemotherapy
Heavy hair loss and severe sickness are less common, but tiredness is frequent.
Blood tests matter
Low platelets and liver changes often cause no symptoms, so regular tests pick them up.
Some effects build over time
Nerve changes and tiredness may increase across cycles, so keep your team updated.
This page gives general information only. It is not a complete list. Report any new or worrying symptom to your treating team.Four groups
How the side effects fit together
Grouping them makes it easier to know what to expect and what to report.
Everyday effects
Tiredness, nausea, headache, constipation or loose stools, muscle and joint aches, dry mouth and trouble sleeping. Usually mild and manageable.
Blood test changes
Low platelets, raised liver enzymes and sometimes low potassium or a low red cell count. These are checked before each dose.
Easy bruising or nosebleeds may be a sign of low platelets.Nerve and eye changes
Tingling or numbness in fingers and toes, and dry, watery or blurry eyes. Nerve changes may be worse if earlier chemotherapy already affected the nerves.
Less common but serious
These are uncommon but need prompt attention if they happen.
Report urgently
- Breathlessness, new cough or ankle swelling
- Yellow skin or eyes, or dark urine
- Heavy bleeding or a sudden severe headache
The timeline
When side effects tend to appear
Words you will hear
The vocabulary, in plain language
- Infusion reaction
- A reaction during or shortly after the drip, such as chills, flushing or breathlessness.
- Platelets
- Blood cells that help clotting. T-DM1 often lowers them for a short time.
- Liver enzymes
- Blood test markers that rise when the liver is under strain.
- Ejection fraction
- A measure of how strongly the heart pumps, checked with a heart scan.
- Pneumonitis
- Inflammation of the lungs, which can cause breathlessness and a dry cough.
- Dose reduction
- Lowering the dose to make side effects easier while continuing treatment.
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Have a question about your situation?
Call the helpline or leave your details, and someone will help you arrange a consultation at the CION centre nearest you. One helpline serves every CION centre.
Being straight with you
Honest limits of any side effect list
A list tells you what has been seen across many people. It cannot tell you exactly what you will experience.
Everyone is different
Some people have very few side effects. Others find tiredness or nerve changes hard going. Earlier treatment, age and general health all play a part.
Gentler is not the same as easy
T-DM1 is often easier than earlier chemotherapy, but it is still a chemotherapy-based treatment, and it is fine to find it tiring.
Rare effects do happen
Serious liver, lung, heart or bleeding problems are uncommon, but they are the reason for regular tests and quick reporting.
What this page cannot tell you
It cannot tell you which effects you will get or how severe they will be. Your team can explain your own risks.
Heart and lungs
Why heart scans and breathing symptoms matter
HER2 treatments can weaken the heart's pumping strength in some people. With T-DM1 this is uncommon, but it is checked with a heart scan before starting and every few months during treatment.
Heart warning signs
Tell your team about breathlessness on exertion or lying flat, swelling of the ankles, a racing or irregular heartbeat, or unexplained weight gain over a few days.
Lung inflammation
Rarely, T-DM1 can inflame the lungs. A new dry cough, breathlessness or fever without an obvious infection should be reported promptly.
With radiotherapy
After surgery, radiotherapy is often given while T-DM1 continues. Your team may watch your breathing a little more closely during that time.
Day to day
Easing the common side effects
Many side effects respond well to simple steps and supportive medicines. Ask your team rather than putting up with them.
Tiredness
Short daily walks, regular sleep times and planning rest around busy days often help more than complete rest.
Nausea and constipation
Small frequent meals, plenty of fluids and fibre, and anti-sickness or bowel medicines from your team can make the first days of each cycle easier.
Mouth and eyes
Rinse your mouth often, use a soft toothbrush, and ask about lubricating eye drops if your eyes feel dry or gritty.
Commonly believed
What people assume about T-DM1 side effects
Significant hair loss is uncommon, although some people notice thinning.
Tiredness, nausea, low platelets and liver changes are common, so monitoring is still needed.
Side effects do not show whether the medicine is working against the cancer.
Early reporting usually leads to simple adjustments that help you continue safely.
Questions we are asked
Common questions about trastuzumab emtansine side effects
Will I lose my hair on T-DM1?
Most people do not have major hair loss on T-DM1. Some notice mild thinning. If your hair is regrowing after earlier chemotherapy, it usually continues to grow during T-DM1. Tell your team if you notice significant shedding, as it is not typical.
What is the most common side effect?
Tiredness is one of the most frequently reported. Nausea, headache, muscle and joint aches, constipation and nosebleeds are also common. On blood tests, low platelets and raised liver enzymes are the most common changes, and these often cause no symptoms.
What happens during the first infusion?
The first dose runs more slowly and you are watched for a while afterwards in case of a reaction such as chills, fever or breathlessness. If you manage well, later doses usually run faster with a shorter wait. Tell the nurse straight away if you feel unwell during the drip.
Does T-DM1 affect the heart?
It can reduce heart pumping strength in some people, although this is less common than with some other HER2 treatments. A heart scan is done before starting and every few months. If the pumping strength falls, your team may pause treatment and review your heart before continuing.
Can I work during treatment?
Many people continue working, sometimes with adjusted hours. Tiredness in the first days after each dose is common, so some plan lighter days then. Discuss your job with your team, especially if it involves heavy physical work or a high risk of cuts and injuries.
When should I call my team urgently?
Call urgently for fever or chills, bleeding that does not stop, black stools or vomiting blood, yellow skin or eyes, breathlessness, a new cough, chest pain, ankle swelling, or a sudden severe headache. It is always better to call early than to wait.
Will side effects get worse with each cycle?
Some, such as tiredness and nerve changes, can build up over several cycles. Others, like nausea, often become more predictable and easier to manage. Your team reviews how you are at each visit and can adjust the dose if side effects become difficult.
How long do side effects last after treatment ends?
Most ease within weeks to a few months after the last dose, as blood counts and liver tests return to normal. Nerve changes can take longer to improve, and some people have lasting numbness. Your team will continue to check on you at follow-up visits.
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Sources
- European Medicines Agency — Kadcyla: product information
- Cancer Research UK — Trastuzumab emtansine (Kadcyla)
- Macmillan Cancer Support — Trastuzumab emtansine (Kadcyla)
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.