Ask the Nurse: Ambulatory transplant care and myeloma

For many people living with myeloma, hospital visits can be frequent and time consuming. However, for those undergoing high-dose therapy and stem cell transplant (HDT-SCT), there is increasing availability to receive this treatment without admission to hospital. This approach, known as ambulatory transplant care, can allow you stay more independent and spend less time in hospital.

In this month’s blog, we answer some of the questions you ask our Myeloma Infoline team about ambulatory transplant care and how it can support you in living well with myeloma.

What is ambulatory care?

Ambulatory care refers to healthcare services delivered without an overnight hospital stay – services that previously would have required inpatient admission but can now be safely managed on an outpatient basis. For people living with myeloma, this approach can sometimes be used for HDT-SCT.

If available and suitable for you, ambulatory transplant care could allow you to attend hospital for treatment, monitoring and support, before going home, or to nearby accommodation the same day.

Ambulatory care units, often based within cancer centres or haematology departments, are designed to offer a flexible, efficient alternative to inpatient stays. This can allow you to get the care you need while spending more time at home, improving the balance between treatment needs and quality of life.

If you don’t live locally, arrangements can sometimes be made for you to stay in a patient hotel, a charity-funded home-from-home or a commercial hotel. These are usually within an hour’s travel time of the ambulatory care unit.

Is ambulatory transplant care an option for me?

Ambulatory care can benefit many people living with myeloma, but it isn’t available everywhere and isn’t suitable for everyone. Your healthcare team will assess your individual needs and work with you to determine whether it is an option for you. Ambulatory care, where available, might be an option for you if:

• You are medically stable.
• You can travel safely to and from the clinic within a reasonable time – you may be asked to make sure a close friend or family member can drive you.
• You have support at home, such as a family member or friend.
• You live within a suitable distance of the hospital or they have nearby accommodation available.

There may be times when a hospital is the best place for you to receive the care you need. You may not be offered ambulatory care if it is not available near you at the right time, or if your healthcare team feel they are able to better support you through treatment in hospital.

If you are offered ambulatory care, or are already receiving your treatment this way, you can still choose to be admitted if you prefer to stay in hospital. Your healthcare team are on hand if you have any questions or concerns. If you are feeling unwell at home or have a temperature they should be contacted without delay. Depending on your symptoms, they may ask you to come in for a review and will help decide whether a hospital stay is needed for closer monitoring or for further treatment that can’t be managed in an outpatient setting.

How could I benefit from ambulatory transplant care?

Living with myeloma often means ongoing treatment and regular monitoring. While some treatments or complications may still require a hospital stay, the option to receive HDT-SCT either without admission to hospital, or with a reduced hospital stay, may be beneficial for some people.

Some of the key benefits of ambulatory care can include:

• Fewer overnight hospital stays – you might be able to receive treatment and go home the same day. Some people find it easier to get good sleep and rest, repair and recuperate well at home.
• A more comfortable environment to rest during treatments – you can spend more time with family, friends, pets and home comforts. More privacy and normality during your treatment, helping you maintain your independence and daily routine.
• You can eat your own food, how and when you want, provided you follow any specific guidance from your healthcare team. This can be especially beneficial if you are experiencing a lack of appetite, taste changes or nausea.
• You can maintain a good activity level if you feel able to. Exercise can reduce anxiety, fatigue, chances of blood clots (DVT) and help maintain or optimise muscle mass.
• Reduced risk of hospital acquired infections. Spending less time in hospital reduces exposure to potential infections.

What is involved in ambulatory transplant care?

Ambulatory transplant care can allow you to receive some or all of your HDT-SCT through daily visits to an ambulatory unit, returning home or to nearby accommodation between treatments.

This approach typically includes:

• High-dose chemotherapy: You may receive melphalan (a chemotherapy drug) one day, followed by your stem cell infusion on subsequent days. You may have rest days when you receive no treatment during this period too.
• Supportive treatments: These help to manage any side effects during and after treatment. They may include blood transfusions, pain relief, anti-sickness medication, symptom assessment and support for your psychological and emotional wellbeing.

You can read more about the procedure and recovery in our High-dose therapy and autologous stem cell transplant Infoguide.

What should I expect during an ambulatory transplant care visit?

Your healthcare team will explain how your local ambulatory service works, but typically during ambulatory transplant care, you’ll spend some days at the centre and others resting at home. Here’s what a typical day might look like:

• Arrival and check-in: You’ll be welcomed by a member of staff and shown to your treatment area. Some units may offer refreshments and quiet spaces to help make your visit more comfortable.
• Assessment: You will have an assessment and be asked about any symptoms or side effects that you may be experiencing. It is important that you to give as much detail as possible during this assessment – it will help your healthcare team to guide your treatment.
• Treatment: Depending on the assessment, you may receive relevant treatments and supportive care. It’s a good idea to bring something to help pass the time, like a book, magazine, knitting or electronic device.
• Observation: After treatment, you may be monitored for a short time to make sure you’re feeling well.
• Discharge: Before you leave, you’ll be given any necessary information, treatment to take at home, or follow-up instructions.

How can I prepare for ambulatory transplant care?

Your healthcare team will provide you with information to help you prepare for your visit – it’s important to follow any instructions carefully so you can be ready on the day. Here are a few tips to help you get the most out of your visits:

• Communicate symptoms: Let your healthcare team know about any new, persistent or worsening symptoms or side effects. Our Patient Diary may be useful for you to record this.
• Bring a list of questions: It’s easy to forget things during appointments, so make a note of anything you’d like to ask in advance.
• Dress comfortably: You may be sitting or waiting for a while, so wear loose, comfortable clothing and bring a warm layer.
• Plan your transport: If you’re feeling tired or unwell or having a treatment that prevents you from driving, consider asking a friend or family member to accompany you, or help with travel arrangements. Avoid public transport (except taxis) if possible due to the higher infection risk.
• Do take note of safety education provided: You will be provided with information about how to care for yourself during and after treatment, and any signs of complications to watch out for. A key part of ambulatory care is taking responsibility for your own health and safety. If complications arise, it is vital that you call the emergency number you’ve been given without delay – even if it’s in the middle of the night.

Ambulatory care is a key part of modern myeloma treatment. It allows you to stay more active and involved in your care, while spending more time in the comfort of your own home. By working closely with your healthcare team and making use of outpatient services, you can manage your condition more effectively and maintain a better quality of life.

If you have any further questions or need support, contact us through the Myeloma UK Infoline at 0800 980 3332 (UK) or use our Ask the Nurse email service.