Myelodysplastic syndromes (MDS) treatment side effects

When they first talk to you about treatment options, and at any time during your treatment, your hospital team can tell you what side effects you might get. Some side effects are more common than others, but everyone reacts differently, even if they are having the same treatment.

Speak to your hospital team about any side effects you get, as there are treatments and self-help tips that can make a big difference. Your doctor may also be able to adjust your treatment to reduce side effects.

Side effects of MDS treatments can include:

• breathlessness
• bruising and bleeding (nosebleeds or bleeding gums)
• bone or muscle pain – this can be a side effect of growth factors
• headaches
• diarrhoea or constipation
• extreme tiredness (fatigue)
• feeling sick or being sick
• hair loss (more common with intensive chemotherapy)
• increased risk of infections
• fertility problems – this can be a side effect of some chemotherapy drugs
• numbness or tingling in your fingers or toes (peripheral neuropathy)
• skin changes
• sore mouth or gut.

You’re unlikely to get all these side effects, but you might get some. You might even find you get no side effects. Everyone is different.

Ask your hospital team if you want detailed information about any of the treatments they recommend. They can tell you any side effects to look out for and what to do if you have them.

All medicines should come with a printed information leaflet that lists the possible side effects. Your doctor or nurse can give you this leaflet. You can also find these leaflets online on the EMC (Electronic Medicines Compendium) website.

It can be alarming to read a long list of side effects. But drug manufacturers have to include every side effect that’s been reported to them, and that’s why the list is so long. Some of the side effects listed will be very rare.

Talk to your hospital team or our Support Service if you are worried about side effects.

Don’t feel you have to cope with side effects alone. Tell your hospital team about any side effects you have or are worried about, as there are often medicines or treatments they can prescribe to reduce side effects.

You might also find it helpful to read our information about common side effects of blood cancer treatment. It includes tips on things that can help.

You may also want to talk to other people with blood cancer about side effects and share experiences and tips. You can do this on our online community forum.