There is no cure for WM and there may come a point when you are told that your cancer is no longer responding to the treatment you are currently receiving.
There are a number of reasons why treatment may have to end. It could be 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 or that your body is not able to cope with the harsh side effects.
Your doctor should always look into whether you are eligible to join a clinical trial. However, clinical trials have strict eligibility criteria and not everyone is able to join one.
Everyone’s WM journey is different and your healthcare team are in the best place to advise you on what to do when treatment ends. Remember, it is a slow-growing form of lymphoma so even through your treatment may have stopped, it doesn’t mean you will die.
Ongoing care
It’s important to continue monitoring your health and your symptoms. WM also causes other conditions which may worsen when your WM treatment ends. You may be offered support to help relieve your symptoms. These could include things like pain relief, oxygen if you are short of breath, and blood transfusions to help with anaemia and other conditions caused by low blood counts.
Palliative care
When the time is right, you should be offered palliative support. Palliative care professionals will help to address your symptoms so you are not in pain, and can also offer emotional and practical support to your family. You’re entitled to receive good palliative care, and it’s a good idea to discuss this with your healthcare team early to ensure support begins well before the end of your life.
It can be a good idea to plan ahead, to help you and your family manage and bring you peace of mind. Your healthcare team can help.
You may like to consider:
It’s worth making sure you have a will and that it’s up to date. You may also want to have a ‘living will’, which outlines how you want to be looked after in case you become unable to communicate your preferences.
People often feel a range of emotions – like sadness, apathy, denial, grief, and anger –when they learn they have no treatment options left. There is no right or wrong way to feel. There is plenty of emotional support available for both you and your family. The resources below can offer you more information.
Here are some resources to help you and loved ones, both practically and emotionally:
WM Support Line is always available for you to speak with an expert WM expert at any stage of your diagnosis. Just email support@wmuk.org.uk or call 0300 303 5870.
Maggie’s Centres offer emotional support at every stage of cancer diagnosis, as well as providing information on their website.
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Macmillan have a range of booklets to help you at the end of life, or to plan for the end of life.
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Marie Curie offer a range of support for people at the end of life.
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