Recovery after an autologous stem cell transplant

Going home after a long hospital stay can bring mixed emotions. You may feel happy to return, but also nervous about managing on your own. This is normal, and your healthcare team will make sure you feel ready before you leave.

Before you go home, we will make sure that:

• your blood counts are at a safe level (even if not completely back to normal)
• any side effects have improved
• you are eating and drinking well
• you can take your tablets and no longer need IV (intravenous) medicines or antibiotics
• your PICC has been removed

Recovery after an autologous stem cell transplant is different for everyone. It can take several months for your immune system and energy levels to return to normal. You will have regular hospital appointments during this time so we can monitor your recovery and deal with any problems early.

About one week after leaving hospital, we will ask you to have a blood test either at your local hospital or at UCLH. If some of your blood counts are still low before you go home, we may arrange this sooner. 

Follow-up arrangements vary depending on your condition.

• People with myeloma or lymphoma (including Waldenström’s macroglobulinaemia):
  You will have a telephone consultation with a CNS one to two weeks after leaving hospital. This gives you a chance to discuss your recovery and any concerns you may have at home. We will then book an appointment for you to attend the myeloma or lymphoma clinic about four weeks after discharge.
• People with POEMS:
  You will also have a telephone consultation with a CNS one to two weeks after leaving hospital. Your follow-up will depend on your mobility and how far you live from UCLH. This may include a mix of appointments at your local hospital and at UCLH. About six months after your transplant, you will have an appointment in the POEMS clinic. 
• People with AL amyloidosis:  
  Your first follow-up appointment will be 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 these in our daycare department.

You are likely to be discharged with the following medicines:

• Aciclovir: Take this for at least three months after your transplant. It helps to prevent certain viral infections, such as shingles.
• Anti-sickness medicine: Continue taking this until your nausea has settled.

Some people may need to keep taking lansoprazole (or a similar medicine) after they go home. This helps to prevent stress ulcers in the stomach. Your doctor will tell you if you need to continue this medicine.

If you run out of any medicines before your follow-up appointment, your GP can provide a repeat prescription.

Always take your medicines exactly as prescribed. If you are unsure about what to take, or have any side effects, contact your CNS for advice.

^{Photo courtesy of Canva.com}

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

We will explain everything about irradiated blood and answer your questions. We will also give you an alert card to carry with you at all times.

Recovery after transplant can take between three and six months. It’s important that you reduce your risk of infection during this period. You will need to shield during the first three months, starting from your Day 0 (when your cells were returned). This means that you should not visit any shops, restaurants, or other homes.

After the shielding period ends, continue to take extra care and follow the advice below for the next three months:

• Avoid crowded places and large gatherings.
• Avoid contact with anyone who is unwell especially if they have a cough, cold or flu.
• Avoid gardening.
• Avoid handling cat litter.
• Wash hands often and always after touching pets.
• Shower or bathe daily.

These steps will help to protect you from infection while your immune system recovers.

Always carry with you the telephone numbers that we gave you. If you are worried about anything, call us straight away – day or night. We prefer you to speak to us than risk becoming unwell at home.

Contact us straight away if:

• your temperature is 38°C or higher

  A raised temperature can be a sign of infection. We will usually advise you to go straight to your nearest Emergency Department (A&E). If you cannot reach anyone in our team, go directly to your local A&E and contact us as soon as you can.

• you suddenly feel unwell, even if your temperature is normal
• you notice any signs of infection, such as shivering, shortness of breath, a sore throat, cough, or needing to pee more often
• you have been in contact with someone who has an infectious illness, such as chickenpox or measles
• you are feeling or being sick, or have diarrhoea
• you are unusually short of breath, either when resting or moving around

If you become unwell, you may need to come back into hospital. This can feel worrying or disappointing, but it is quite common and not a setback in your recovery.

It’s normal to have a small appetite after your stem cell transplant. You may continue to feel sick or have other stomach problems for a few weeks, which can affect what you feel like eating. Try to remember that food is medicine too, and eating and drinking will help your body to heal and recover.

While in hospital, we tried to keep your weight loss to a minimum. Once you are home, you can expect to regain any lost weight over the next few months.

If you are worried about your diet, your CNS can refer you to the haematology dietitian.

^{Photo courtesy of Canva.com}

You don’t need to follow a strict neutropenic diet once your blood counts have recovered. But while your immune system is still getting stronger, it’s important to eat safely and support your recovery.

Here are some helpful tips:

• Try to eat a healthy balanced diet and avoid foods that may increase your risk of infection.
• Eat little and often if you can’t manage big meals. Snacks are a good way to keep up your strength.
• Avoid drinking large amounts or having build-up (nutrition) drinks just before meals as they can make you feel too full to eat.
• Always eat foods within their ‘use by’ dates and cook in clean surroundings with clean hands.
• Do not reheat foods.
• Make sure that meat, fish, shellfish, poultry and eggs are cooked through.
• Wash all fruit and salad carefully before eating.
• Buy foods from reputable stores.
• If eating out or getting a takeaway, choose places you are confident are clean and serve freshly cooked food.

Try to drink two to three litres of fluid each day (this may be more in hot weather). Staying hydrated helps your kidneys flush out waste. You can tell if you are not drinking enough as your urine will appear darker.

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

Fatigue is common during recovery, and it can take several months for your energy to return. Remember that recovery takes time so be patient with yourself.

Here are some tips to manage fatigue:

• Listen to your body. Take breaks and pace your activities throughout the day.
• Plan ahead. Try to save your energy for things you enjoy or tasks that must be done.
• Spread out activities that need a lot of energy instead of doing them all at once.
• Keep a fatigue diary. This can help you to see which activities make your fatigue better or worse. It can also help you plan your day.
• Accept offers of help from family and friends.
• Ask for support. If you are struggling to cope with your daily tasks, ask to speak to an occupational therapist.

Fatigue can also affect your sleep, making it more difficult to manage. 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 close to bedtime.
• Spend time relaxing and try to avoid screens before going to bed.
• Limit naps to less than one hour and set an alarm if needed. If you sleep too much during the day, this will affect your sleep at night. Having a good night sleep is more helpful for managing fatigue than daytime naps.

Staying active is one of the best ways to manage fatigue and support your recovery. Light to moderate exercise can boost your energy and improve your overall wellbeing.

We know that being physically active may seem impossible at first. Start small and build up slowly.

• Avoid long periods of inactivity. For example, try not to sit or lie down for more than an hour at a time during the day.
• 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. Ask a friend or family member to join you while you gain confidence. You could use a pedometer or a step-counting app to track your progress. Try to walk a little further or for a bit longer each week. This can help to motivate you and encourage you to continue being active.

Strengthening your muscles is also important. You can find helpful advice and exercises from:

• Myeloma UK: Exercises for myeloma patients
• Lymphoma Action: Exercise and physical activity

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

The physiotherapist, or your GP, can also refer you to local exercise programmes designed for people recovering from cancer. They are often called ‘Exercise on Prescription’ or ‘GP Exercise Referral’ schemes. They can help you become more active and improve your fitness over time.

You may continue to have some pain after your transplant. For example, you might feel nerve pain (neuropathy) that has returned or worsened from previous treatments. You may also have ongoing pain in your bones.

Please let us know if you are in pain and we will make sure you have effective pain relief to take at home.

We will check and monitor your pain at your follow-up appointments. If needed, we can refer you to specialist teams for extra support. These may include orthopaedic team, symptom control team or acute pain team.

• Continue to shower or bathe every day.
• 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. It may take a few weeks before your sense of taste returns to normal.
• Before any dental treatment, tell your dentist that you had a stem cell transplant so they can look out for signs of infection.

• Hair growth: Your hair will start to grow back a few weeks after leaving the hospital. The colour and texture may be slightly different, and your hair will be ‘baby fine’ at first. Use a gentle shampoo and massage your scalp when washing your hair. This will help to stimulate your hair follicles.
• Skin care: Your skin may feel more sensitive or dry after treatment. To help with this, use mild, unperfumed body washes and moisturisers. If you notice a rash, contact us for advice.
• Sun protection: Your skin will be more sensitive to the sun for several months. To avoid sunburn, use sun cream with at least SPF 30. You should also cover up with clothing if you are out in the sun for long periods.

You can resume sex when you are ready, as long as you maintain good hygiene and protect against STIs (sexually transmitted infections). Your doctor may advise avoiding certain types of sexual activity (oral, genital or anal) if your blood counts are low. So, check with them before going home.

It is normal to have a low sex drive after treatment. Changes in your physical appearance and tiredness can all affect your sex life. Talk openly with your partner about how you feel and explore other ways to show affection.

Some of the medicines you have taken during treatment could harm a developing baby. To avoid pregnancy, use effective contraception for the first six months after your transplant. This includes condoms or dental dams, along with other birth control methods.

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

How soon you return to work depends on your recovery and the type of job you do. Fatigue will be a big challenge in the first three months after leaving hospital. As a rough guide, most people return to work about six months after their transplant.

• If you have a desk job or can work from home, you may be able to return sooner.
• If your job is physically demanding or exposes you to infection (for example, working in a school), you may need more time off.
• Part-time working can be helpful until you feel stronger.
• Talk to your employer about your plans. You can also decide whether you want them to tell your colleagues about your treatment.

Talk to your doctor or nurse if you have any worries about going back to work. They can give you any sick notes you need.

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.

We advise against travelling abroad for the first three to six months after your transplant. Your immune system will be weak, and it’s important to stay close to a specialist centre in case you need medical care. If you’d like to travel abroad after this time, talk to your doctor before booking your trip.

Three months after the transplant you will need the following vaccinations:

• Covid-19 (you will need to restart the whole course because you are considered to never have been vaccinated against it)
• flu

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

• chickenpox (Varicella)
• 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 220900

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

Lymphoma Action
Tel: 0808 808 5555

Macmillan Cancer Support
Tel: 0808 808 00 00

University College London Hospitals NHS Foundation Trust cannot accept responsibility for information provided by external organisations.