Myelodysplastic syndromes (MDS) treatment and side effects
Myelodysplastic syndromes (MDS) non-intensive treatment
Non-intensive or low intensity treatments aim to control the MDS as much as possible, without causing too many side effects. Most of them can be taken at home or as an out-patient, so you spend less time in hospital.
Non-intensive treatments can be a better option for people whose general level of fitness would make it difficult to tolerate strong treatments like intensive chemotherapy and a stem cell transplant.
Azacitidine is a type of chemotherapy drug called a hypomethylating agent (HMA). It disrupts the growth of abnormal blood cells and kills them. It also helps the bone marrow make healthy blood cells.
Your doctor might recommend azacitidine if you have high risk MDS and cannot have – or do not want – a stem cell transplant. It’s also sometimes used before a planned stem cell transplant, to prepare the bone marrow and give the transplant the best chance of success.
Sometimes, if you respond well to azacitidine, your doctor might talk to you about having a stem cell transplant.
How you have azacitidine:
- A doctor or nurse will give you azacitidine as an injection under your skin. This can be in your upper arm, leg, bottom or tummy.
- You go into hospital as a day patient to have the injections.
- You usually have azacitidine as a course of several cycles of treatment.
- Each cycle is made up of 7 days of daily injections (usually with weekends off), followed by at least three weeks off.
- You usually have at least six cycles of treatment.
- You can keep having the treatment for as long as it works. Some people continue having azacytidine for many years.
Lenalidomide is a drug recommended for people with a specific type of MDS who have a genetic change called isolated del (5q). It works in a number of ways to supress abnormal blood cells.
Your doctor might offer you lenalidomide if you:
- have MDS associated with isolated del (5q)
- don’t have enough red blood cells (anaemia)
- need lots of blood transfusions
- have tried EPO injections but they didn’t work.
Lenalidomide comes as capsules that you swallow. You usually take them in cycles of one a day for three weeks, followed by a week off. You can keep having the treatment for as long as it works and you tolerate it. Some people take lenalidomide for many years.
In a few people with MDS, the number of the bone marrow cells is unusually low (called hypoplastic). Drugs that supress the immune system can sometimes help with this. They include anti-thymocyte globulins (ATGs) and ciclosporin.
“I used to come out of appointments and realise the doctor hadn’t answered my questions. So now I always go with a list of questions and a pen and paper to write down the answers.”
Ally, living with MDS since 2008.
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