Recovery following an autologous stem cell transplant

Leaving hospital may fill you with mixed emotions. You may be excited about going home after spending an extended period of time away. But you may also feel nervous about coping at home and wonder how successful the treatment has been. These feelings are all normal and your team will be there to support you if you have any problems or concerns.

When you are ready to leave hospital, your team will talk to you about going home. Your clinical nurse specialist (CNS) will spend time with you explaining your follow-up care and anything you need to watch out for when you get home.

Before you go home we will make sure that:

• Your blood counts are at a safe level (they may not be at normal pre-transplant levels yet).
• Your side effects have improved.
• You are eating and drinking.
• You are walking about by yourself.
• You are able to take your tablets and don’t need to take medicines intravenously through your lines.

You will usually have your PICC removed before leaving the hospital.

The recovery period following an autologous stem cell transplant can vary from patient to patient and can last for many months. You will have regular hospital appointments for the first few months after your transplant. Your immunity will be low during this time so it is important that any problems are picked up early.

We will ask you to have a blood test either at your local hospital or at UCLH one week after you leave hospital. This may be sooner if some of your blood counts have not normalised before you go home.

People with myeloma or lymphoma (including Waldenström’s macroglobulinaemia) will have a telephone consultation with one of the CNSs one to two weeks after leaving hospital. This will be a chance to discuss your recovery and any concerns you may have while you are recuperating at home. We will then book an appointment for you to return to the myeloma or lymphoma clinic four weeks after your discharge home.

People with POEMS will also have a telephone consultation with one of the CNSs one to two weeks after leaving hospital. We will then arrange your follow-up according to your mobility and distance from UCLH. This may include a combination of local hospital and UCLH follow-up. About six months after the transplant, you will have an appointment in the POEMS clinic.

People with AL amyloidosis will have their first follow-up appointment in the amyloid clinic one week after leaving hospital.

If you need any follow-up tests or scans, your CNS will book them for you.

If you need blood or platelets transfusions, you can usually have them in our day care department.

You are likely to be discharged with the following medicines:

• Aciclovir – you will need to take this for at least three months after your transplant to prevent certain viral infections, such as shingles.
• Anti-sickness medication – you should continue taking it until your nausea has resolved.

Some people need to continue taking lansoprazole (or a similar medicine) after discharge to help prevent stress ulcers in their stomach. Your doctor will advise you.

If you run out of any medicines you are taking before your follow-up appointment, your GP will be able to provide you with a repeat prescription.

It’s important that you always carry the telephone numbers that we gave you. If you are worried about anything, contact us on one of the numbers at any time of the day or night. We prefer you to speak to us rather than risk being unwell at home.

Contact us straight away if:

• Your temperature goes over 38°C. ​​​​Raised temperature may be a sign of infection so we will advise you to go straight to your nearest Emergency Department (A&E). If you have not been able to speak to anyone in our team, you should just head directly to your local A&E and contact us when you can.
• You suddenly feel unwell, even with a normal temperature.
• You have any signs of infection, such as feeling shivery or short of breath, having a sore throat or cough, or needing to pass urine often.
• You have been in contact with someone who has an infectious disease, for example chickenpox or measles.
• You experience nausea, vomiting or diarrhoea that you can’t control with medication.
• You are unusually short of breath either when at rest or on exertion.

If you become unwell, you may need to go back into hospital. Although this can be worrying and disappointing for you, it is quite common and is not a major setback.

If you need a blood transfusion in the first six months after your transplant, you will need ‘irradiated blood’. Irradiated blood is a special type of blood that has been treated with radiation. This is to prevent transfusion-associated graft-versus-host disease.

We will give you detailed information and answer any questions you may have about irradiated blood. We will also give you an alert card to carry with you.

It’s normal to have a very small appetite following your stem cell transplant. Nausea and other stomach problems may continue for some weeks and affect what you feel like eating. Try to remember that food is medicine too and eating and drinking is a necessary part of your recovery.

We have tried to keep any weight loss to a minimum during your hospital stay. You can expect to put any lost weight on once you get home over a period of a few months.

Your CNS can refer you to the haematology dietitian if you are worried about your diet or food intake.

You don’t need to follow a strict neutropenic diet once your blood counts have recovered. We have included some tips below to help with your recovery:

• While your immune system is getting stronger, try to eat a healthy balanced diet and avoid possible risks of infection from food.
• Eat little and often if you can’t manage big meals. Snacks are always good.
• Don’t fill up on build-ups (nutrition supplement drinks) or large drinks before a meal as you will not feel hungry.
• Always make sure you eat foods within their ‘use by’ dates and cook in clean surroundings with clean hands.
• Don’t reheat foods.
• Make sure that meat, fish, shellfish, poultry and eggs are cooked through before eating them.
• Wash salads and fruits thoroughly.
• Buy foods from reputable stores.
• If going out to eat or getting a takeaway, use places you are confident have clean practices and where the food is freshly cooked.
• Drink two to three litres of fluid per day (this may be more in summer) as this will keep your kidneys flushed out. You will know if you are not drinking enough as your urine will appear darker.

Check with your doctor before drinking alcohol. Alcohol slows down the recovery of the bone marrow and increases the risk of bleeding. It can also interact with some of the medicines you may be taking.

Fatigue is common during the recovery period and it can take many months to get your energy back. Remember that recovery is gradual so don’t expect too much of yourself.

• Listen to your body. Pacing yourself and your activities throughout the day can help to manage your fatigue.
• Plan your day ahead, aiming to save energy for things you enjoy doing the most, or things that you have to do.
• Space activities that need a lot of energy throughout the day, rather than trying to do them all in one part of the day.
• Keeping a fatigue diary can help you to see which activities make your fatigue better or worse. The diary can also be useful for planning or pacing your daily routine so you can manage your fatigue better.
• Accept offers of help from family and friends.
• If you are struggling to cope with your day-to-day activities due to your fatigue, ask to speak to an occupational therapist.

Your sleep may also be affected when you have fatigue, making it more difficult for you to cope with it. Sticking to a consistent bedtime routine can help with sleep problems:

• Aim to go to bed and get up at the same time each day.
• Avoid drinks and food with caffeine near your bed time.
• Spend time relaxing and try to avoid screen time before going to bed.

You should also limit your daytime sleeping to less than one hour and set an alarm before taking a nap. If you sleep too much during the day, this will affect your sleep at night. Having a good night sleep is more valuable for managing fatigue than napping.

One of the best ways to cope with fatigue is to build some form of light to moderate physical activity or exercise into your day. Being physically active is vital to your recovery. The research shows that it can increase your energy levels and improve your general wellbeing.

We understand that being physically active may seem impossible at first. Simply avoiding long periods of inactivity will be enough to start with. For example, avoid sitting or lying down for longer than one hour at a time during the day. And try to stand up, step on the spot or walk regularly throughout your day.

Gentle aerobic exercise, such as walking, can be a good way to start building up activity or exercise. Ask a friend or family member to join you while you build up confidence.

A pedometer or step counting app on your phone can be a good way to monitor your activity and record your progress as you move more each day. Try to make a goal to walk further or for longer each week. This can help to motivate you and encourage you to continue being active.

Muscle strengthening exercises are also important. To find out more, check out:

• ‘Exercises for myeloma patients’ from Myeloma UK.
• ‘Exercise and physical activity’ from Lymphoma Action.

If you feel you need more support to build up your activity or to return to exercise, ask to speak to a physiotherapist. They can guide and advise you on getting stronger and more active.

The physiotherapist, or your GP, can also refer you to exercise programmes in your local area suitable for people recovering from cancer. They are often called ‘Exercise on Prescription’ or ‘GP Exercise Referral’ schemes. They are helpful if you would like to increase your activity and fitness levels.

You may continue to experience pain following your transplant. For example, neuropathy (nerve pain) that you may have had following previous treatments can get worse or become reignited. Or you may have ongoing pain in your bones. Please let us know if this is a problem for you and we will make sure that you have effective pain relief to take at home.

We will continue to assess and monitor your pain during your follow-up appointments. We will also refer you to the specialist orthopaedic, symptom control or acute pain teams if needed.

It’s important to spend time with family and friends and do things that you enjoy. But for the first few months after your transplant, you should avoid:

• people with coughs and colds or other infectious diseases
• crowded places, such as public transport at busy times, shopping centres or cinemas.

We ask all patients to shield for three months following their transplant. This means you should not visit any shops, restaurants or other homes. You should also keep a two-metre distance from anyone outside of your household or support bubble.

We understand that other members of your household or support bubble may not be able to shield with you. So, we advise that they limit their contact with others where possible. This will help to minimise their risk of respiratory conditions, including Covid-19.

Your doctor will inform you of any changes to this and advise you when it is safe to stop shielding.

• Continue to have a daily bath or shower.
• Wash your hands before eating, preparing food and after going to the toilet.
• Keep your mouth clean and use any mouthwashes that have been prescribed for you. You may find that it takes a few weeks before your sense of taste returns to normal.
• Before having any dental treatment, tell your dentist that you have had a stem cell transplant so that they can look out for signs of infection.

Your hair will start to grow back a few weeks after leaving hospital. The colour and/or texture may be slightly different, and it will be ‘baby fine' in the first couple of weeks. Use gentle shampoo and massage your scalp when you bathe. This will help to stimulate your hair follicles.

Your skin may have become more sensitive or drier after your high-dose treatment. To help with this, use mild, un-perfumed body washes and moisturisers. If you develop any rashes, please contact us so that we can advise you on the best course of action.

For several months after treatment, your skin will be more sensitive to the sun than usual and your risk of sunburn will be higher. Use a sun cream with a sun protection factor (SPF) of at least 30. And cover up with clothing if you are out in hot sun for a long time.

Your treatment does not stop you from being able to have sex. You can resume your usual sexual activity when you are ready, as long as you keep good hygiene and avoid STIs (sexually transmitted infections). Check with your doctor before going home if there may be any reason why you can’t go back to your usual sex life. For example, your doctor may advise that you avoid oral, genital or anal sex when your blood counts are low.

It is normal to have a low sex drive after treatment. Changes in your body image, physical appearance and tiredness can all affect your sex life. Talk to your partner about how you feel. There are different ways of showing your love and affection for someone, even if you don’t feel like having sex.

Some of the medicines you have taken could harm a developing baby. For this reason, it’s important that you use effective contraception for the first six months to prevent pregnancy. You should use condoms, dental dams or other protective measures. This is in addition to any birth control you or your partner may be taking.

If you have any specific questions about your fertility following your transplant, please talk to your doctor.

Going back to work will depend on your recovery and the type of work that you do. As a rough guide you should be able to return to work about six months after your transplant. You may be able to go back sooner if you can work from home, have a sitting or desk job, or if you are able to start back on a part-time basis. Talk to your doctor or nurse if you have any concerns about going back to work. They can provide or help with any medical certificates you may need to cover this time off.

It’s also a good idea to talk to your employer about your return to work. Have a think if you’d like them to tell your colleagues about your treatment.

It is usually safe to start driving as soon as you feel well enough. If you’re unsure, check with your doctor or nurse and contact DVLA for advice. If you have central nervous system (CNS) lymphoma, please check with your doctor when you can drive again.

As your immune system recovers, you might start to think about going on holiday. There are no set rules about travel, but you should be cautious about travelling abroad especially in the early months of your recovery.

Talk to your doctor before booking a holiday. It may be helpful to take a letter from your doctor explaining your medical history and including important contact numbers.

Following your transplant, it is likely that you will lose your immunity to illnesses you had or were vaccinated against as a child. For this reason, you may need to have some of these vaccinations again one year after the transplant. We will give you and your GP information outlining your re-vaccination schedule. Your GP will contact you to arrange an appointment for this. If you have not heard from them, please contact them to book an appointment.

You will also need vaccinations to protect you against common infections, such as flu and Covid-19. You will have these three months after the transplant.

Please note that you will need to avoid the following live vaccines:

• Varicella (chickenpox).
• Shingles.
• BCG (tuberculosis).
• MMR (measles, mumps, rubella).
• Oral typhoid.
• Yellow fever.
• Oral polio.
• Flu vaccine given as a spray through the nose.

We recommend that your family members and those you have a regular contact with are vaccinated according to guidance. This will help to reduce your risk of getting these infections.

Haematology helpline

Tel: 020 3447 7359 (Monday to Friday, 9am to 5pm)

Out of hours (for urgent medical advice)

Tel: 07852 220 900

Myeloma/Amyloidosis PA

Tel: 020 3447 8028

Waldenström’s macroglobulinaemia/POEMS PA

Tel: 020 3447 7101

Lymphoma PA

Tel: 020 3447 9443

Myeloma UK

Tel: 0800 980 3332
Website: myeloma.org.uk

Lymphoma Action

Tel: 0808 808 5555
Website: lymphoma-action.org.uk

Macmillan Cancer Support

Tel: 0808 808 0000
Website: macmillan.org.uk

References

Myeloma UK (2019). High-dose therapy and autologous stem cell transplantation.

Macmillan. Recovering after high-dose treatment with stem cell support.