Ask the Nurse – Treatment practicalities and decision making

In this month’s blog, we discuss some of the ways myeloma treatments can differ and how these differences could impact your treatment decisions.

Several drugs and drug combinations are used to treat myeloma. The drugs have varying side effects, work differently and are given in different ways. This complexity can make it challenging for patients to decide which treatment option is right for them. As a result, we often get asked for more detail about the differences between treatments and for advice about the factors to consider when comparing different treatments.

This month’s blog discusses how treatments differ and how these differences could impact your treatment decisions.

Effectiveness & side effects

It can be hard to get a precise answer about which treatment option is the safest or most effective for you.

Myeloma is a complex and individual cancer, so it is difficult to predict exactly how someone will respond to treatment. Your general health and the nature of your myeloma both affect your risk of side effects and how you respond to treatment. Therefore, the best place to start when comparing the safety and effectiveness of different treatments is by talking to your haematologist or clinical nurse specialist. They will be able to tell you if there are any reasons why they might recommend one treatment option over another. For example, your haematologist might advise against a treatment that can cause peripheral neuropathy if you already have or have had peripheral neuropathy.

Unfortunately, sometimes the answer is that every treatment is a valid option because they are all effective and have a risk of side effects. When there isn’t clinical data directly comparing the treatment options and there is nothing about your individual situation that can distinguish between treatments, factors such as how and when the treatments are given may play a more important role in your decision.

How the treatment is given

Myeloma drugs are given as tablets, injections, or infusions. How a drug is given is typically determined by the nature of the drug rather than effectiveness. For example, it is often based on how well the drug dissolves or how stable it is. For a drug to be given as a tablet it needs to be soluble enough to get into the bloodstream from the stomach or intestines and stable enough to survive stomach acid. Therefore, when comparing different drugs, it is how the drug works that is more important for effectiveness than how it is given.

Nevertheless, how a drug or treatment combination is given is an important factor to consider when weighing up treatment options. This is because some can be taken or given at home whilst others can only be administered in a hospital. The dosing schedules of treatments can also vary a lot with some being given bi-weekly, weekly or even monthly.

Therefore, how a drug is given will affect the number and length of hospitals visits you have and how often you will see your healthcare team.

How long treatment is given

Another factor to consider is how long you will be on treatment. Some patients like to have time off treatment, while others feel better knowing that their myeloma is always being treated. Some drugs are given for a fixed time (e.g. 4-8 months) and others are given continuously until your myeloma starts to come back.
The length of treatment is determined by how the drugs were administered in clinical trials. This doesn’t mean that one drug is more effective than the other, just that when they were tested some treatment options gave the best remission times and life expectancy when given continuously and for others, they didn’t find any benefit to giving the treatment for longer.

It is important to note that even with continuous treatments you can have treatment breaks. Most of the time this will be due to side effects or other health issues. For example, if you develop severe neutropenia when on treatment your haematologist may decide to take you off treatment until you have recovered.
Your haematologist may consider a short treatment break or a change of schedule for personal reasons you may have, such as a holiday or special event, if you have responded well to treatment and are in remission.

There is often a time limit (e.g. a maximum of six weeks) to treatment breaks and if your break exceeds this limit you will not be able to go back on the same treatment.

You can also choose to stop treatment early if you feel that this is the right option for you.

The stage the treatment is available through the NHS

It is also important to consider when you can access treatment through the NHS. Some treatments are only available at specific times. For example, the combination of daratumumab (Darzalex®), bortezomib (Velcade®) and dexamethasone is currently only available through the NHS at first relapse (second line).
This is determined by the clinical trial data for a treatment. In most cases, the treatments are made available to the patients who will respond best to the treatment or where there is a clear benefit compared to currently available treatments.

When considering your treatment and options, it’s important you speak to your healthcare team who will be able to recommend the most suitable treatment for your individual circumstances.

You can read more about treatment choice, including how doctors decide what treatments to recommend and the role of trial data in practice, in the Autumn/Winter 2020 Myeloma Matters.

If you have any questions about treatments or treatment availability you can get in touch with us through the Infoline (0800 980 3332 (UK) or 1800 937 773 (Ireland)) or the Ask the Nurse email service.

Best Wishes
The Myeloma UK Information Specialist Team

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