Going home after your Stem Cell Transplant

After the transplant, the most common serious issue is infection. Even though your body is starting to make white blood cells again, your risk of infection is still higher than normal.  

Check your temperature at least twice a day. Call us if:

• It’s over 38°C once
• Over 37.5°C twice, more than 2 hours apart
• Below 36°C

It is safe to use paracetamol, but please check your temperature before taking and avoid drugs like ibuprofen.

If you get COVID, you must be treated with anti-COVID medications, even if it’s a long time after transplant unless your care team says otherwise.

Good hand hygiene is very important. Washing your hands regularly with soap and water—or using alcohol gel—is one of the best ways to prevent infection. In addition to your normal routine, please remember to wash your hands:

• Before eating or preparing food
• Before touching your eyes, nose, or mouth
• After touching plants
• After handling pets or animals
• After visiting public places

Try to avoid the following when possible:

• Being around people who are unwell or have symptoms like fever, rash, vomiting, diarrhoea, sore throat, cough, runny nose, or red/pink eyes (conjunctivitis)
• Being around people who’ve recently been in contact with someone who is unwell
• Crowded places or public transport
• Public places during busy times
• Close contact with people who may have developed a rash or fever after receiving the MMR vaccine
• If a family member has recently had the BCG vaccine, ask them to keep the area covered until it heals.

If you must be around someone who is unwell:

Wash your hands regularly and encourage them to cover their mouth and nose when coughing or sneezing. Let your transplant team know if you’ve been in contact with anyone who has a contagious illness.

Avoid these activities if you can:

• Cleaning up animal faeces, litter trays, bird cages, or fish tanks
• Gardening or handling soil and plants directly
• Taking out or handling rubbish
• Going near building or construction sites, or dusty areas
• Changing nappies
• Swimming.

If you do need to do any of these things, wear gloves (if appropriate) and always wash your hands thoroughly afterwards.

Guide to dealing with infections on the Anthony Nolan website.

Transplant will lower your blood counts. These can include red cells, white cells, and platelets. You might need:

• Blood or platelet transfusions
• If your neutrophil count is low, we may give you injections to boost your white blood cell counts (G-CSF)

The team will monitor your blood counts to see how you are responding and will let you know the arrangements if you need any of these treatments. 

Let the team know immediately if you have:

• Abnormal bruising
• Bleeding that won’t stop

If you go home with a line:

• It will be removed as soon as possible when it’s safe to do so.  Some people may need to keep their line in longer if they require blood or platelet transfusions, or any other treatment. 
• It needs weekly care – cleaning and dressing – at The Clatterbridge Cancer Centre or your local hospital.  The team will help you make these arrangements.

Call the team if the area around the line gets red, swollen, painful, or starts leaking.

After your transplant, your skin will be much more sensitive to sunlight – even short exposure can lead to sunburn or skin damage.

• Always use factor 50 sunscreen, even if you're only going outside for a few minutes.
• Wear a hat and protective clothing and try to stay in the shade when possible.
• Remember: you can still get sun damage in winter, especially on clear, sunny days.

Your skin may also be drier and more sensitive than usual. You might find it helpful to use a gentle, moisturising soap and cream to keep your skin comfortable.

After your transplant, it’s important to keep an eye out for certain symptoms that could be signs of graft-versus-host disease (GvHD). Please contact us straight away – or call the triage line if it’s out of hours – if you notice any of the following:

• Red or itchy skin rashes anywhere on your body
• Feeling sick (nausea) or being sick (vomiting)
• Yellowing of the whites of your eyes
• New or ongoing diarrhoea, especially if it’s watery
• Stomach cramps
• A sore mouth

Don’t wait to see if things improve – get in touch with your care team so we can help you quickly.

Further information about graft-versus-host disease on the Anthony Nolan website. 

It’s common for your mouth to feel dry after treatment. To help with this, you can try:

• Synthetic saliva (available from your pharmacy)
• Boiled sweets or iced lollies
• Citrus fruits (unless you’ve been advised otherwise)

Important: If you’re taking Ciclosporine, do not eat or drink grapefruit – it can affect how the medication works.

Keep your mouth clean by following your usual mouth care routine. Let your medical or nursing team know if:

• You get mouth ulcers
• Your mouth becomes sore or painful

If you need any dental treatment, always check with the transplant team first. You may need to be referred to the Dental Hospital and have antibiotics before the procedure to help prevent infection.

It may take a few months before your appetite is back to normal. Please continue to follow the advice in the ‘Safer Eating – guidance for patients with a weakened immune system’ leaflet, as certain foods should be avoided. 

• You may still experience nausea and taste changes for a while after transplant. Take anti-sickness tablets regularly, if required.
• Try to drink plenty (2 to 3 litres of fluid a day) and avoid alcohol, initially.
• It is important to eat well to help recovery and avoid excessive weight loss. Your appetite may be smaller after treatment. It may be helpful to eat small meals and snacks, little and often, or to add extra energy and protein to your meals.
• There is more information on the Eating well and coping with side-effects page and a page for people following a vegan diet.
• If you have been prescribed supplement drinks, you may wish to continue these after discharge, whilst your appetite continues to recover. You can take some of the drinks home from hospital when you are discharged. If you need more, your GP could prescribe them, using the details on your discharge letter. Alternatively, the team on day ward or at clinic can arrange for a repeat prescription.
• If you are concerned about weight loss, or that you are not eating well, please discuss these concerns with the team on day ward, at clinic, or with your GP.

You’ll likely feel tired for months after treatment. You may need to sleep during the day, this is normal. It is also important to try and keep active to help recovery. Try and get up, shower and dress each day.

Try gentle activity each day:

• Listen to your body and rest when you need to
• Your energy levels will ‘fluctuate’ don’t do too much on ‘good days’ – pace yourself.  This may feel difficult to do but it will help to reduce your fatigue and improve your wellbeing.
• Consider breaking down daily tasks into small achievable tasks spread over the day.

If you are worried that your fatigue is not improving after several months, speak to your care team.

Read more information about fatigue from Macmillan Cancer Support or read this guide to diet and physical activity on the Anthony Nolan website.

 

It’s completely normal to have a lower interest in sex for a while after your transplant. When you're feeling ready, you can resume sex. It’s important you maintain good hygiene and don’t put yourself at risk of STIs (sexually transmitted infections).  

After your transplant:

• Your platelet count may be low, which can increase the risk of bleeding – especially during sexual activity. If your blood counts are low, you can check with your care team first.
• Condoms are recommended to help reduce the risk of infection, even with long-term partners.

Changes to how you look or feel (e.g. hair loss, skin changes, changes in weight) can affect how you feel about intimacy and sexual contact. Talk to your partner about how you feel or your care team if this is worrying you.

Some people find that their hormone levels change after transplant. If needed, your team will discuss hormone replacement therapy with you.

Most chemotherapy, including that given before transplant, can adversely affect your fertility. However, this may only be a moderate effect, if you didn’t have total body irradiation, fertility may return after treatment. So, it’s important to use contraception unless tests show it’s no longer needed. 

Talk to your care team if you need advice about contraception or if you are thinking about starting a family. They will be able to advise you about safe contraception or conception.

After your transplant, you’ll have day care (Level 5 at Clatterbridge Cancer Centre – Liverpool) and clinic appointments (Level M1) once a week for the first few months.

However, it’s common to need extra visits – up to three times a week – especially if you need blood product support like transfusions.

You may also have other appointments for tests such as:

• Lung function tests
• Bone marrow biopsies
• Scans

Your team will let you know what to expect and help plan your schedule.

It’s important that you take all medications exactly as prescribed. You’ll get a full list before leaving hospital and the ward nurse will discuss this with you – it is useful if you bring this list to all appointments.

• Keep track of when you need refills so they can be ordered in plenty of time to make sure you do not miss any doses.
• Transplant medications will be prescribed by your hospital team at your appointments
• Other medications (for other health conditions) should still come from your GP
• To help prevent chest infections, you may be given Pentamidine nebuliser treatment every two weeks in the Day Care Unit on Level 1, or you might be prescribed an alternative antibiotic, such as co-trimoxazole, depending on what’s best for you.

Free prescriptions

• You are entitled to free prescriptions.
• To get this, you’ll need to fill out an FP92A form, which you can get from the hospital, your GP, or your local pharmacy.
• The form must be signed by either your hospital doctor or GP.

Only stop medications if your healthcare team tells you to. If you run out of any medication you are taking before your follow-up appointment, contact your care team.

If you're taking Cyclosporine, Tacrolimus, or Sirolimus, please don’t take your dose on the morning of your Transplant Clinic (usually held on Tuesday mornings).

You’ll have a blood test (usually before your clinic appointment) to check the level of the medication in your system.

• Bring your medication with you and take it after your blood test.
• Avoid grapefruit and grapefruit juice while taking these medications, as they can affect how the drug works.

If your blood test shows that your medication dose needs to be adjusted, your care team will contact you to let you know what changes to make.

You’ll need to have/restart some vaccines 3 to 6 months after transplant. These include:

• A full new course of COVID-19 vaccines, as recommended by national guidance
• The annual flu vaccine when it is offered
• Vaccinations against childhood and other infections

We’ll contact you and your GP with instructions when the time is right.  

It’s important to know that vaccines may be less effective for you because transplant has affected the way your immune system works.  

Don’t have any live vaccines without talking to your team first. Family and close contacts should also stay up to date with vaccines in line with current guidance.

Most people need to take at least 6 months off work after a transplant, but the exact time will depend on the type of transplant, your recovery and the type of job you do.

If your job is physically demanding, high stress, involves contact with lots of people, or takes place in a dusty environment, you may need more time before going back.

When you do feel ready to return, try to start part-time if possible. Be open with your employer about what you need—your medical team can help support these conversations if needed.

Information about going back to work on the Anthony Nolan website.

You can start thinking about holidays once you’re feeling stronger. 

There aren’t strict rules, as it depends on how your recovery is going – especially how well your immune system is recovering.

We recommend:

• Avoid travelling abroad in the early months of your recovery
• Get good travel insurance before you go
• Always share your full medical history with the insurer to make sure your cover is valid

Speak to your care team before making any travel plans – they can help you decide what’s safe and when.

Our counsellor, Linda Boyne, is available if you’d like a referral for counselling or complementary therapies.

Telephone: 07341869875
Email: marylinda.boyne@nhs.net

Established in 2003, the group provides a welcoming space for anyone affected by blood cancer – including patients, families, and carers.

• Open to anyone in the region
• Meets monthly in Liverpool
• A supportive environment to share experiences, ask questions, and connect with others who understand

Whether you’re newly diagnosed or living with blood cancer long-term, you’re very welcome to join.

For more information please contact Linda Boyne: 

Telephone: 07341869875
Email: marylinda.boyne@nhs.net

There is more information about the Liverpool Haematology Support Group on the blood cancer webpage.
 

Established in 2016, the support group welcomes anyone affected by myeloma, including patients, carers, and family members. 

The group covers West Lancashire and Merseyside – generally the area north of Chester, south of Preston, and west of the M6 – but anyone from surrounding areas is very welcome to join.

The group meets on the first Tuesday of every month at 2pm in a relaxed and friendly setting, centred around coffee and conversation. The group:

• Shares updates on myeloma-related news and activities 
• Occasionally invites guest speakers
• Raises funds to support their work

For more information, email the group, visit the Facebook page, or the group's website.

You can also contact:

• David Simister, Support Group Leader 
• Dave Lovelady, Support Group Leader

Our Cancer Information and Support Centres offer free, confidential information and support for anyone affected by cancer – patients, families, and carers.

They can help with:

• Understanding cancer – reliable information on diagnosis, treatment, and side effects
• Emotional support – someone to talk to, or referral to counselling services
• Local support groups – connecting you with people who understand
• Practical help – advice on transport, Blue Badge applications, and wig vouchers
• Financial guidance – help with benefits, grants, and prescription charge exemptions
• Resources – booklets, leaflets, and trusted online tools tailored to your needs

No appointment is needed – just drop in, call, or ask a member of staff to refer you. They are available from 8:00am to 4:00pm (08:00-16:00), Monday to Friday.

• Visit the team in our Clatterbridge Cancer Centres (Aintree, Liverpool and Wirral)
• Call 0151 318 8805
• Text 07867 537671
• Email the team
   

It’s important to have both emotional and practical support during your journey. Learning more about your transplant and connecting with others can be really helpful for you and your family.

• The Patient Services team at Anthony Nolan can provide information, answer your questions, or simply listen if you need support.
• You can also connect with other patients and families through the Patients & Families Forum or the Patients & Families Facebook page – it’s a great way to share advice and support.

For extra help with your emotional wellbeing, their mental health booklet and website section offer valuable advice for managing your feelings before, during, and after your transplant.
 

• Saving lives through stem cells
• Essential facts for transplant patients
• Essential facts for transplant recovery
• Your mental health and stem cell transplant
• How stell cell transplant can affect your memory and concentration

• Leukaemia Care website
• Cost of Living Fund
• Leukaemia Counselling Service
• Support and information