Ask The Nurse: Mind and memory problems

This month’s blog covers some of the questions we regularly get asked about the mind and memory problems myeloma patients can experience.

Ask The Nurse // 29th March 2019

Mind and memory problems are common in myeloma and can be extremely frustrating. Our team of Myeloma Information Specialists often get calls and emails from patients who are experiencing problems such as mental fogginess and difficulty remembering words. These issues can be caused by myeloma itself, myeloma treatments or even the stress of living with myeloma. This month’s blog covers some of the questions we regularly get asked about the cognitive issues myeloma patients can experience.

I often hear people talking about ‘chemo brain’. What is it?

Myeloma and myeloma treatments can affect the brain’s ability to collect, retain and process information. ‘Chemo brain’ is a term used to describe the mind and memory issues cancer patients can experience. Your healthcare team may refer to these symptoms as cancer-related cognitive changes.

Patients often describe ‘chemo brain’ as having a foggy head, not feeling themselves, feeling low and having difficulty remembering things. The symptoms are often more noticeable in patients receiving intensive treatments such as high-dose therapy and stem cell transplantation.

Most people who experience chemo brain will find that certain tasks are harder than they used to be but can still continue with their everyday activities.

Should I tell my healthcare care team about my cognitive symptoms?

Some patients worry about telling their healthcare team about symptoms and side effects, especially when they are on treatment(s). It is important that your team are made aware of any increasing symptoms and any new symptoms you have, so that they can identify the cause and help you to manage them. Your healthcare team can look at ways to adjust your treatment to reduce your cognitive symptoms, such as reducing the dose, altering the frequency of administering your treatment or changing the time of day you take it.

Confusion could also be a sign of infection or other complications associated with myeloma so it’s vital you let your healthcare team know about any confusion you have.

Are the mind and memory problems permanent?

For most patients, mind and memory problems are short-term and usually ease once they have finished treatment. However, it can take a while before things return to normal, and in some cases it can take up to a year. This is especially true for patients receiving intensive treatment such as high-dose therapy and stem cell transplantation.

What can I do to help cope with the cognitive issues I am experiencing?

The impact of chemo brain usually depends on what and how much you are doing. Increased stress, anxiety and fatigue can make your mind and memory problems more noticeable. Therefore, cognitive issues may become more obvious as you increase your daily activities (e.g. returning to work) or if you are trying to juggle too many things at once. This can be incredibly frustrating and stressful, particularly if it is hindering your normal activities. There are lots of things you can do to reduce stress and fatigue to help ease myeloma related cognitive issues. Everyone is different though, so what works for someone may not work for you. It is therefore a good idea to try out a few different things to find out what works best for you.

Ways to minimise fatigue

  • Make sure you’re resting well
  • Try to eat a healthy and balanced diet
  • Talk to your healthcare team if you are having problems sleeping or you are experiencing severe fatigue, as it may be a consequence of having anaemia and they may be able to adjust or change your treatment and suggest ways to help
  • Regular gentle exercise can also help with fatigue

Ways to minimise stress & anxiety

  • Try not to do too many things at once
  • Writing down information can help you remember things and organise your thoughts. Patients often find writing lists or keeping track of medications and appointments in a diary or calendar, can help them cope with memory problems. You can order a free patient diary from Myeloma UK via our online order form or via the Myeloma UK Infoline on 0800 980 3332 (UK) or 1800 937 773 (Ireland)
  • Set reminders and alarms on your phone or tablet so you don’t have to keep track of everything in your head
  • Find ways to relax. Some patients find complementary therapies such as aromatherapy and massage helpful in reducing stress. Others may prefer to do puzzles and crosswords or find gentle exercise works best for them
  • Talk to your family, friends, co-workers and healthcare team so you don’t have to cope on your own

To find out more about myeloma related mind and memory problems you can watch our “Myeloma and Cognition Webinar”. You can also learn more about living well with myeloma in our “Infopack for living well with myeloma”.

Best Wishes

The Myeloma UK Information Specialist Team