When treatment comes to an end
Waldenstrom's macroglobulinaemia is a slow growing form of lymphoma and many people will live for years, if not decades with it. However, there isn’t a cure and you may come to a point where you are told there are no more treatment options available to you.
It’s normal to feel a range of different emotions when hearing this news, as well as having questions about your future.
Here we’ll discuss what you can expect when your treatment options run out.
What does it mean when I don't have any
treatment options?
If your doctor tells you that you don’t have any treatment options left, it might mean that you have had multiple treatments before, and now there aren’t any medicines or therapies left that you can have. Alternatively, your Waldenstrom's macroglobulinaemia could have stopped responding to treatment so that the available options won’t work anymore. Or it may be that you are not well enough to have any available treatment, which can be very harsh on the body.
Can I try clinical trials?
Clinical trials can seem like a hopeful alternative when you are told you don’t have any treatment options left, as they are often testing new drugs that aren’t available on the NHS.
You doctor should always look into whether you are eligible to join a clinical trial, so if this is an option you are interested in, you should talk it through with them.
However, clinical trials have strict eligibility criteria and not everyone is able to join one. Your Waldenstrom's macroglobulinaemia may have progressed too far, or any previous treatment you’ve had might mean you aren’t eligible. Unfortunately, if you aren’t eligible, there is nothing you or your doctor can do to get you into a trial.
Can I get medicine on
private medical cover?
This depends on the type of cover you have. However, it’s important to note that just because you may have heard of a particular drug, it doesn’t mean you will be able to access it privately.
If this is something you want to look into, speak to your doctor about available treatments and if they are suitable for you.
It can feel exciting to learn that there might be other medicines out there, for example ones that treat other forms of lymphoma. Bear in mind that not all of these drugs have been shown to work with Waldenstrom's macroglobulinaemia.
Likewise, many of the medicines being tested in clinical trials are not available for use outside of the trials. There are lots of reasons for this, for example there’s not enough evidence to show it works to effectively to treat WM, or researchers are looking into how it affects people with WM.
You may feel a range of emotions whilst searching for treatments, from excitement and hope, through to anger and frustration. This is very normal.
Does this mean I am going to die?
Sadly, there isn’t a cure for Waldenstrom's macroglobulinaemia and people do die from it, or from conditions or illnesses caused by it. It’s important to remember that it is also a slow-growing form of lymphoma. This means that just because you don’t have any treatment options available, you won’t necessarily die soon.
Just like many other aspects of Waldenstrom's macroglobulinaemia, it’s not possible to say how long left you have. WM behaves differently in every person and many factors (like age and fitness) play a part in how quickly it grows.
WM also causes other conditions and makes you more likely to get infections or viruses. These can get worse when your WM isn’t treated, and sometimes cause death.
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This can be really difficult to hear. Your healthcare team should be there to support you and your family, both practically and emotionally.
What other options are open to me?
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Why not start treatment straightaway?When you’re first diagnosed with WM, being told you don’t need immediate treatment may surprise, or even worry, you. You might think that it must be better to kill the cancer cells before they can increase more. However active monitoring is a safe and recommended way to care for people with slow-growing cancers like WM. There isn’t any evidence to show that being treated earlier has any benefits. Treatment itself can have some harsh side effects, which can be long lasting. By putting you on active monitoring, your doctor is saving treatment for when it can have the maximum impact. If your doctor sees signs that your WM is worsening, they will discuss treatment options with you immediately. However, many people stay on active monitoring for years, meaning they can lead full lives without the side effects of needless treatment.
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What happens on active monitoring?You’ll have regular check-ups with your healthcare team, where you’ll have blood tests and a chance to talk about how you’re feeling and any symptoms or concerns you have. Normally these are face-to-face at the hospital, but since the COVID-19 pandemic, many check-ups have moved to video call or telephone. This doesn’t affect how you are monitored, just the way you speak to your healthcare team. Your blood tests and symptoms will help your doctor understand how your WM is behaving, and whether it’s time to start treatment or not. The check-ups also mean your doctor can pick up on any other conditions, for example anaemia, and ensure you get the right treatment for this. It’s important to raise concerns or mention any symptoms, however minor, at your check-up as your healthcare team might want to investigate these further. When you’re first diagnosed, these check-ups may be more frequent – for example, every 3 months – but as time goes by and if your WM remains stable, the check-ups may become less frequent. Some people who have been on active monitoring for years might have one check-up a year.
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Is active monitoring safe?Yes. It is the recommended way to care for people with WM that isn’t growing and who either don’t have symptoms or whose symptoms are mild.