Medicine

Patient information for Translation

Your ongoing recovery at home after your Autologous stem cell transplant

A guide for patients with myeloma and related plasma cell disorders

Myeloma Team, Department of Haemato-Oncology

Introduction

This booklet contains useful information about your ongoing recovery following your treatment with High Dose Melphalan Chemotherapy and an Autologous stem cell transplant once you have been discharged from hospital.

It is likely that you have been given a lot of information throughout your transplant process. Sometimes it is difficult to remember this or to know when and how to process all you have been told.

For some, having a stem cell transplant can lead to a lot of changes and transitions. It can affect your life in many ways in the short term.

This next step, going home, is a big step forward to recovery and one which you have most likely been looking forward to. However, we understand that it can also be quite overwhelming. It is important that you know you are not alone and that we will be monitoring your recovery closely via our Day Unit and outpatient clinics in the months to come.

We also encourage you to contact us should you have health related concerns, require any medical assistance or need support or practical advice.

Outlined here is some important information for you to be aware of which will hopefully make the transition from hospital to home as smooth as possible.

Please refer to Page 11 of this booklet for a directory of useful contacts.

Risk of infection

Even though you are well enough to go home, you are still at risk of infection. Following an autologous transplant, it usually takes up to three months for your immune system to fully recover.
 

It is not common to require re-admission into hospital for a temperature or infection following an autologous stem cell transplant but there are things you can do to reduce the risk further.

Maintaining the same precautions that were discussed with you in hospital may help minimise the risk of infection. It is important to;

• Maintain good hand washing with soap and water
• Continue strict regular mouth care
• Avoid people with colds, flu or known viral infections: e.g. children and adults with measles, shingles or chicken pox.
• Avoid heavy crowds where possible
• Minimise contact with animals. Wash your hands thoroughly after handling pets and ensure pets themselves are in good health.
• Ensure food is prepared and washed well.

We advise you check your temperature at least once a day when you are at home.

If you have a temperature above 38 ° C, you need to contact us immediately, even if you are feeling well .

You should contact us if you experience any signs and symptoms of an infection; including a cold, runny nose, cough
or feeling generally unwell.

It is important to act promptly when experiencing fever/high temperature as inhe majority of cases, a simple course of tablets at home will resolve the issue. However, left untreated, infections can require readmission and in a small number of cases, become
life-threatening.

Risk of bleeding

It is quite common to need occasional blood or platelet ‘top up’ transfusions once you have been discharged home.

Your need for transfusion support will be assessed according to the results of your blood tests when you attend the Day Unit for nurse-led follow up. Transfusions will be administered on the same day.

If you have any new bleeding, bruising or persistent nose bleeds, please contact us immediately as you may require a platelet transfusion. This is quick to organise.

If you experience palpitations, dizziness or shortness of breath, please contact us immediately as you may require a blood transfusion.

Fatigue

Even though your blood count levels are at a safe level for you to be discharged, you should remember that this is still a recovery period for your body.

Fatigue is a complex but common symptom of myeloma which affects over 70% of patients at some point. It is even more common during the initial post-transplant recovery phase.

Fatigue is characterised by extreme lethargy or exhaustion which differs from everyday tiredness. It can be overwhelming, is not a result of exertion and may not be relieved by rest or sleep.

Fatigue can affect you on all levels, including emotionally and psychologically, in addition to the physical effects described above.

Challenging fatigue is key to managing and overcoming it. Even if you feel tired it is important to keep active. Routines such as waking early to shower and dress, gentle exercise, such as taking short walks outside, and a regular bedtime will help enormously and are extremely important for your body’s recovery. Maintaining activity will enable you to gradually build up strength and recover a general sense of wellbeing.

Continuing to do the exercises recommended for you during your stay by the physiotherapists, such as making use of the stretchy latex ‘Thera-Band’, are very simple ways of combating fatigue.

In addition, we will provide you a copy of the Myeloma UK Information guide, ‘ Fatigue and Myeloma’ , in your going home pack.

Please take time to read this very informative and useful booklet which details the common symptoms of fatigue, causes, assessment and, more importantly, guidance on the treatment and management of fatigue.

Increasing your understanding of what fatigue is and how to challenge it will be of huge benefit to you and those around you.

Peripherally inserted central catheter (PICC line)

You will most likely go home with your PICC still in place as it is common at this stage to require regular blood tests and transfusions.

Whilst your PICC remains in place, it needs to be flushed, cleaned and redressed weekly on the Day Unit when you attend checkups.

Once your platelet count reaches 50, it is most likely that we will remove the PICC. This is a simple procedure which takes just a few moments on the Day Unit. There is no need for local anaesthesia as was used to insert the PICC. This is a painless procedure performed by a nurse.

At home, continue to look after your line as you did in hospital.

Cover it whilst in the shower and take care not to accidentally tug the tubing. It is best to keep it well secured and covered up at all times to minimise the risks.

You will need to monitor your PICC line daily at home. If you experience any pain, redness or ooze around the insertion site, please contact us immediately. Likewise, if you develop a persistent heavy aching sensation in the relevant arm, please contact us as these can be signs of infection or a blood clot.

If you notice any damage to the tubing, such as a split, please also let us know as this poses an infection risk.

Having a PICC line in place will not restrict you from doing most of the activities you wish to do. However, please note, it is not advisable to swim whilst you still have a PICC. Swimming is fine once the PICC is removed and the site of the PICC has healed.

Nutrition

A well balanced, healthy diet is recommended in order to maintain your immune system. Now that you are home, you may find your personal choices help boost your appetite.

You may have found it difficult to eat post-transplant. This can be due to a number of factors which have a negative impact on appetite. These include nausea and vomiting, diarrhoea, mucositis (sore mouth) and taste changes due to medication. Hopefully now, many of these issues will have significantly decreased or disappeared.

However, it is usual for there to be a transition period whilst you build up to your normal appetite and food intake. The following list on page 7 provides practical tips to help.

• Try managing small, frequent meals and nutritious snacks as opposed to large plates.
• If you have any ongoing nausea, take anti-nausea medications at least 30 minutes before a meal.
• Try to drink at least 2 to 3 litres of fluids a day. This will prevent dehydration, keep your mouth moist and minimise kidney problems which is very important in Myeloma.
• If you are struggling to drink, you can boost your fluid intake by trying jellies, ice lollies, soups and smoothies, all of which have a high fluid content whilst providing some calories also.

Following a stem cell transplant you are at greater risk of infection from bacteria or fungus in foods. This is mainly due to the reduced number of neutrophils, which are a type of white blood cell in your blood, causing the neutropenia. Under normal circumstances, neutrophils would fight an infection you may have picked up from a food source.

The main way you can reduce your risk is to observe standard food hygiene rules. Check packaging is intact and ‘use by’ dates when shopping; ensure food is stored correctly; wash your hands before preparing food; avoid cross contamination of food by changing and washing chopping boards between use for raw and cooked foodstuff; ensure clean work surfaces; cook food properly and avoid re-heating food where possible. NEVER re-heat cooked rice.

Detailed on the next page are the updated consensus recommendations on dietary advice for patients with neutropenia from the sub group of the British Dietetic Association Oncology Group (2016).

The table outlines recommendations for people with a neutrophil count below ‘2.0’. This may/may not apply to you for a few weeks. We will assess your neutrophil count at every visit.

Note: Stricter advice exists for patients with a neutrophil count below ‘0.5’. This is unlikely to apply to you so to avoid confusion, we will provide this information only if it becomes relevant.

*The live bacteria used in making yogurts are not harmful. So yogurt described as ‘live’ is safe during neutropenia. However the bacteria used in bio or probiotic foods cannot be guaranteed as safe during neutropenia.

Outpatient medication post Autologous Stem Cell Transplant

You may find you are discharged home with a lot of medications. Their use will be explained to you by the ward nurse who issues you with them. Many will be required in the very short term only e.g. G-CSF injections, anti-sickness tablets, anti-fungals.

However, the following two important medications are routinely given on a long term basis to all patients to protect against infection:

1. ACICLOVIR 400mg tablet (anti –viral)  Twice daily for 12 MONTHS starting immediately
2. CO-TRIMOXAZOLE FORTĒ 960mg tablet (anti-biotic)  Once daily on Mondays, Wednesdays and Fridays ONLY for 6 MONTHD starting once your platelet count recovers to above '50'  We will let you know when this should start.

PLEASE NOTE : It is very important that you take these two medications continuously for the length of time stated above.

You will need to let us know when you are running low in these in order that we can supply more!

To avoid waiting for prescriptions, you can request a repeat via the CNSs or 7A (South) Day Unit at least 24hrs in advance of your visit.

Alternatively, we can write to your GP and ask them to supply these medications to you on a repeat prescription. If you would like us to do this, please let the CNS know.

Additional medication

If you were previously receiving a monthly bisphosphonate infusion of Zometa or Pamidronate (or Sodium Clodronate tablets), to support bone strength, this will continue. Remember to take your oral calcium supplements alongside this.

Other medicines

Any medicines which you routinely take for other conditions will continue as provided by your GP, unless we advise otherwise.

Outpatient follow-up post Autologous Stem Cell Transplant

You will need to be reviewed at St. Bartholomew’s Hospital quite regularly after you first go home. This is an important aspect of transplant care. Your referring hospital has contracted with us to manage your care until Day 100 post-transplant as your hospital is not a transplant centre.

Nurse-led Post-Transplant Clinic

After discharge your recovery will be monitored by the Clinical Nurse Specialists. Visits take place on 7A (South) Day Unit, 7^th Floor, King George V Wing at St Bartholomew’s Hospital.

When you attend you will have a blood test from which your general recovery and health is assessed. This will also tell us if you need any blood product support, such as a platelet transfusion, or the need for a growth factor injection to boost your neutrophil count.

The CNSs will assess your overall health including your physical, emotional and psychological wellbeing, and how well you are coping with fatigue.

If there are any concerns which require medical attention, we will ask the Day Unit doctor to see you.

Sometimes you may require further tests such as x-rays, scans or additional blood tests. These are a normal part of recovery and enable us to monitor your progress and condition closely.

Similarly, if we feel you would benefit from a consultation with another health professional, e.g. a dietician or physiotherapist, we will arrange this.

The schedule and frequency of visits to the nurse-led clinic varies for each patient, according to your pattern of recovery, and is largely based on your most recent set of blood results and presenting needs. The frequency of visits will reduce with time. We will only ask you to come as often as is necessary to ensure your safe recovery.

Day 100 appointment in the Myeloma Clinic

The CNSs will book a Myeloma Clinic appointment for you where  you will be seen by the Consultant or Specialist Registrar for a clinical review.

This will occur on the first available clinic date on or after you reach 100 days post stem cell reinfusion.

At this appointment you will have blood and urine tests to
which look for abnormal myeloma proteins. Patients who were referred to St Bartholomew’s Hospital for their transplant only are then discharged back to their referring hospital and haemato-oncologist for ongoing follow up. You and your hospital will both
receive a summary letter following that appointment. In addition, you will be sent an annual transplant follow-up appointment
here at Barts.

Patients who have received all of their treatment at Barts will continue their follow-up appointments on a three-monthly
basis with Barts.

Immunisations

The stem cell transplant can result in loss of some or all of the prior immunity you had as a result of childhood vaccinations against conditions such as diphtheria, tetanus, measles, mumps, rubella, meningitis etc. Therefore it is important to repeat these.
 

Approximately three months after your stem cell transplant, we will send both you and your GP a request letter and copy of the vaccination schedule advised.

Please call your GP and book in to have these vaccinations as soon as the letter arrives. We request that your GP confirms to us when you have completed the re-vaccination schedule

If you do not receive the schedule by your Day 100 appointment, please let us know at that appointment and we will issue one
to you.

USEFUL CONTACTS

ST BARTHOLOMEWS HOSPITAL

7A (South) Day Unit

Tel: 020 3465 6780 / 6789 / 6786

Monday to Friday: 9am–8pm; Weekends: 9am–5pm

HAEMATO-ONCOLOGY EMERGENCY HOTLINE: 07909 002671

This is a mobile phone serviced by a member of the team
24 hours a day for urgent out of hours medical matters

Myeloma and Stem Cell Transplant Clinical Nurse Specialists (CNSs)

Your CNSs remain your key workers throughout your post-transplant phase. Please feel free to contact them during normal working hours Monday to Friday 9am–5pm.
Please note that they may not always be immediately free to talk, but will get back to you as soon as is possible.

Clinical Research Nurse (if applicable)

Name: _____________________________________________

Contact Number: ____________________________________

Large print and other languages

This information can be made available in alternative formats, such as easy read or large print, and may be available in alternative languages, upon request. For more information, speak to your clinical team.
 

এই তথ্যগুলো সহজে পড়া যায় অথবা বৃহৎ প্রিন্টের মত বিকল্প ফরম্যাটে পাওয়া যাবে, এবং অনুরোধে অন্য ভাষায়ও পাওয়া যেতে পারে। আরো তথ্যের জন্য আপনার ক্লিনিক্যাল টিমের সাথে কথা বলুন।

Na żądanie te informacje mogą zostać udostępnione w innych formatach, takich jak zapis większą czcionką lub łatwą do czytania, a także w innych językach. Aby uzyskać więcej informacji, porozmawiaj ze swoim zespołem specjalistów.

Macluumaadkaan waxaa loo heli karaa qaab kale, sida ugu akhrinta ugu fudud, ama far waa weyn, waxana laga yabaa in lagu heli luuqaado Kale, haddii la codsado. Wixii macluumaad dheeraad ah, kala hadal kooxda xarunta caafimaadka.

Bu bilgi, kolay okunurluk veya büyük baskılar gibi alternatif biçimlerde sunulabilir, ve talep üzerine Alternatif Dillerde sunulabilir. Daha fazla bilgi için klinik ekibinizle irtibata geçin.

یہ معلومات متبادل فارمیٹس میں دستیاب کی جا سکتی ہیں، جیسا کہ پڑھنے میں آسان یا بڑا پرنٹ  اور درخواست پر متبادل زبانوں میں بھی دستیاب ہو سکتی ہیں۔ مزید معلومات کے لیے، اپنی کلینکل ٹیم سے بات کریں'۔

Patient Advice and Liaison Service (PALS)
Please contact us if you need general information or advice about Trust services: www.bartshealth.nhs.uk/pals

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Reference: BH/PIN/1081

Publication date: May 2021

All our patient information leaflets are reviewed every three years.