This section is intended for patients prescribed Ninlaro. If you are a member of the public click here. If you are a UK healthcare professional click here.

Practical advice and support

Remembering to take your treatments

Remembering to take your treatments on the right day at the right time is important. But it can be difficult to keep track, especially if you're taking lots of different medicines.

If you're having difficulty with sticking to your treatment routine, talk to your nurse or pharmacist who will sit down with you and go over all of your different drugs, including how many capsules or tablets you're supposed to take of each, on which days and at which times

Here are some other ideas to keep you on track:

Use the treatment calendar to check what you need to take each day, and tick off what you've taken. Your nurse can personalise your treatment calendar for you. You can ask your doctor or nurse for a treatment calendar, or download it here

Build a routine and make it a habit. Try to take your medication around a certain activity that you do each day, for example, brushing your teeth, getting ready in the morning or watching television in the evening

Set alarms using a watch or smartphone

Plan ahead if you're going away. Talk to your nurse or pharmacist to work out together how you'll be able to take your medication while you're away

Getting a treatment calendar

To get a copy of the treatment calendar:

  • Ask your nurse
  • Request it from Takeda medical information by email at DSO‑UK@takeda.com or phone 01628 537 900

Download calendar

Conversations with your healthcare team

The treatment process for myeloma can be overwhelming, especially when you're starting a new treatment. Remember, you're never alone - your doctor, nurse and pharmacist are there to help you every step of the way.

The suggestions below will help you get the most from your conversations with your healthcare team:

Prepare for your visits

Write down questions as soon as you think of them. Before your visit, look back at your questions, and list the most important ones first, in case time is limited. Keep any other notes and your treatment calendar in one place, and bring them with you to any appointments

Speak up

If answers to your questions are unclear or if you still do not understand something, don't be afraid to speak up. Ask for things to be explained in a different way, for example, to see a brochure, video or even a drawing. Keeping you informed and engaged is a vital part of your healthcare team's role and they will be happy to help

Get in touch when you need to

You don't need to wait for your next scheduled appointment to talk to your healthcare team, especially if something comes up or if you notice any new or worsening symptoms or side effects. Just ask them about the best way to get in touch

Follow up

Taking an active role in your treatment helps you feel in control, so be sure to follow up on appointments, lab results, or referrals that were sent, and keep copies of results in your notes. There is no such thing as too much communication so be in regular contact with your healthcare team to help create the best partnership possible

Asking the right questions

With so many things to think about and questions to ask, it can be difficult to know where to start.

The list of questions below reflects some of the things that may be on your mind at any given point. Note the ones that are important to you right now, and ask your doctor or nurse at your next visit.

Questions about your treatment

  • What signs might show that the myeloma is responding to treatment?
  • What does it mean if I achieve remission?
  • What does relapse mean?

Questions about starting treatment

  • Will I be able to drive?
  • Will I be able to keep working?
  • What food should I avoid to help with side effects?
  • Can I drink alcohol?
  • Can I make travel plans?
  • If I respond to treatment, should I keep taking it as prescribed?

Questions about tests and monitoring

  • What are the typical tests and scans I will need and how often will I be tested?
  • What tests/results should I keep track of?
  • Can you explain the results of my blood tests?

Questions about side effects

  • What if I have side effects?
  • Should I expect any new or worsening symptoms?
  • How can I help prevent side effects from treatment?

Accepting help from friends and family

Don't be afraid to accept help from your friends and family. They are often eager to help - they just need to know what they can do.

Here are some suggestions on how you can help them help you:

Ask a friend or loved one to come to your appointments with you. They can take notes, keep you on track with any questions you may want to ask, and can talk through anything after the appointment

Talk to them about how you're feeling - it's one way that can help you cope

Create a list of specific tasks that could help you, such as housework, shopping or cooking meals

Support from someone in the same situation

Sometimes you may need to talk with others who are going through something similar to you. The charities below can direct you to online myeloma communities or local support groups for when you just need to talk to someone who understands. You can also ask your nurse about local patient support groups

Help and support from charities

Myeloma UK

www.myeloma.org.uk

0800 980 3332

Cancer Research UK

www.cruk.org

0808 800 4040

For independent cancer information, visit Cancer Research UK's website or talk to one of their nurses

Bloodwise

bloodwise.org.uk

0808 2080 888

The charities above can give you information, practical advice and support about living with myeloma:

Information about treatment

Travel advice

Confidential 'Ask a nurse' email support and telephone helplines

Financial advice

Online chat forums

Advice on looking after yourself

Emotional support

Local support networks you can join

Further reading about your treatment

Your Guide to Treatment with the NRd Regimen

Takeda Oncology has developed a practical guide for patients who have been prescribed NRd. It explains how NRd works, how to take it and possible side effects you may experience

Download guide

As well as taking Ninlaro, Revlimid and dexamethasone, you may also be taking supportive treatments. For more information on the use and effects of other treatments you're taking, read the Patient Information Leaflets that come with them. You can also find copies of the leaflets by visiting the websites below:

You can find out more about multiple myeloma by visiting the NHS Choices website.

The charities above also provide information on NRd and other treatments.

Your Guide to Treatment with the NRd Regimen

Takeda Oncology has developed a practical guide for patients who have been prescribed NRd. It explains how NRd works, how to take it and possible side effects you may experience

My Treatment Calendar

Takeda Oncology has developed a practical treatment calendar for patients who have been prescribed NRd