A Key Step to a Standard Care Pathway for WM
The WMUK Active Monitoring Checklist
We’re pleased to publish the WMUK Active Monitoring Checklist for use by all WMers, as part of your journey living with Waldenstrom macroglobulinemia.
Designed by patients and clinicians, the Active Monitoring checklist will help you feel confident discussing essential elements of care with your clinical teams, and represents an important step in helping to create a standard care pathway for WM!
Made in collaboration with WMers
We want your feedback
In support of the checklist we have also discussed the experience of active monitoring with fellow WMers Andrea and Tim, who kindly agreed we could share their thoughts.
We have also developed a ‘how to’ guide patient resource, that follows the journey of a WM patient, aiming to allow newly diagnosed patients to understand what to expect of their consultations, while signposting them to resources that will help them better navigate clinician conversations. This we will be able to release in the coming days too.
As you begin using the checklist, we welcome your thoughts and feedback on how it is helping you manage your WM, so do get in touch.
Active Monitoring Patient Experience
Active Monitoring Patient Experience
Active Monitoring: redefining 'watch & wait' - symposium at the British Society of Haematology
Active Monitoring - The Patient Journey
Living with Waldenstrom's macroglobulinaemia (WM) and Active Monitoring - Andrea's story
Living well with Waldenstrom's macroglobulinaemia (WM) and Active Monitoring - Tim's story
What is active monitoring and why?
Active monitoring is when your healthcare team monitor your Waldenstrom's macroglobulinaemia, rather than treating it right away. You may hear it called ‘active surveillance’ or ‘watch and wait’.
At WMUK, our patients informed us they prefer the terminology 'Active Monitoring' over 'watch and wait' as it feels more of a positive and active process rather than waiting for something negative to happen. This is why throughout our website and literature, we will always aim to use the term Active Monitoring.
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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.
Coping with anxiety
Many people on active monitoring report feeling anxious. Some people don’t like the thought of delaying treatment, whereas other are worried about the possibility of starting treatment in the future. Discover the different ways you can cope with anxiety below.
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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.
-
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.
When should I contact my healthcare team?
You don’t need to wait between appointments to speak to your healthcare professional team. If you have new symptoms or your symptoms are getting worse, don’t hesitate to contact your healthcare team. This could be a sign that your Waldenstrom's macroglobulinaemia needs treatment, and your doctor might want to see you sooner than planned.
You should have the contact details of your key worker – often your CNS – who you can email or call:
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If you have developed new symptoms, or your current symptoms have become worse
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If you have a question that you didn’t ask at your appointment
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If you have any concerns about your health at all
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If you are looking for more information about something related to your WM
