After your transplant Bone Marrow Transplant Unit. Information for patients

After your transplant Bone Marrow Transplant Unit Information for patients The transplant experience can affect you physically, emotionally, mentall...
Author: Adela Willis
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After your transplant Bone Marrow Transplant Unit Information for patients

The transplant experience can affect you physically, emotionally, mentally and spiritually, with some people facing more problems than others. It can affect social relationships, the ability to work in the same profession or with the same intensity; this can have an impact on your quality of life. After the transplant - the future It is estimated than around 25% of bone marrow transplant recipients have on-going bothersome medical problems/ symptoms after transplant. Causes of late or longer term effects are: chemotherapy, radiotherapy, the effects of chronic graft versus host disease (cGvHD), the dose and duration of steroids and drugs that lower the immune system. These toxicities will vary from one person to the next. It is important to realise that not all the problems discussed in this guide will affect you. However, there are some risks to future health that may affect all transplant patients. Many of these will have been discussed with you at the transplant clinic. As the number of survivors after transplant increases we are accumulating a wealth of knowledge and experience about possible late complications. We want to hear about your experience and would also welcome any suggestions or tips that we can pass on to other transplant recipients. 2

Many patients report difficulties trying to get back to normal. They feel different or sometimes feel that they should feel different. There will be many thoughts and feelings spinning around your head. This is completely normal. Many patients report loss of memory or feel their memory is reduced after the transplant. Concentration levels can also be affected. You may also feel tired and have difficulty sleeping. This can leave you awake at night letting your brain go into overdrive. You may feel lonely maybe you have lost touch with some friends that might be intentional or not. It takes time to feel normal again because actually this is a new normal for you. For some patients it is not until years later that the feelings are expressed because its was just too difficult to talk about or they did not realise that they should talk about it There are books that can help and people who will listen. Don’t be too hard on yourself. How would you respond to someone who was feeling or saying the things you were? If you have not noticed by now the recovery period can be longer than anticipated, frustrating and unpredictable. You will get there, just in your own way and time, everyone is different. 3

The Cancer Survivors Companion, available on Amazon and all good book stores, may help to guide you on your journey and realise that you are not alone. Below is a guide to late effects of transplantation - it is not meant to be a replacement for discussion with your transplant team, but you may find it helpful in raising particular questions or problems at your clinic appointments. In addition at the back of the booklet, we have highlighted websites that offer further information. These websites have information regarding post transplant issues including patient experience/ comments.

Immune system Immune recovery will occur gradually over time, particularly during the first two years after transplant, although it may be longer for patients with cGvHD. Patients with cGvHD will continue on some of the preventative medicines used during transplantation i.e. antifungal medication. Some patients will find that the immune system will be slow to recover and may be impaired long term. Initially this means admissions to hospital and decreased resistance to common infections, however over time this will improve. Many patients notice that they are more vulnerable to infections.

•• We recommend that penicillin V (or equivalent if allergic) should be taken for life to help minimise the risk of bacterial infection due to Streptococcus Pneumoniae; this will be discussed with you at clinic.

•• We may use a blood product called immunoglobulin; this is given as an infusion through the veins and may help to boost your immune system if your own levels of immunoglobulins are low. 4

•• It is standard procedure to revaccinate all patients starting at roughly 6 months to one year after transplant. This is because the memory previously acquired from vaccinations as a child will have been reduced or wiped out. Vaccinations will be administered via your general practice nurse. There is a separate information leaflet regarding vaccinations.

Eyes Extensive chemotherapy and radiation to the head, as well as GvHD, can damage the glands that produce tears. As a result your eyes may not produce enough tears or the right mixture of oils and moisture to keep them healthy and comfortable. Many patients report problems with their eyes after a transplant. Usually patients say they are dry or gritty (sicca syndrome) from reduced tear flow. Cataracts are a common problem post transplant particularly if you have had a ‘full intensity’ transplant. The incidence for those who received full fractionated total body irradiation is 15% at 10 years; this risk will increase with age. A cataract is the clouding of the normally clear and transparent lens of the eye. Cataracts can easily be treated with surgery. It is very likely that you will be referred to the eye specialists in ophthalmology if you experience any of these problems. Below are measures that you could take to help to reduce symptoms: •• A warm compress using a hot flannel can be applied over the eyelids. This works by loosening up hardened oil that clogs the glands in the eyes.

•• Adding moisture to the environment by using a humidifier in your house or office. 5

•• Specially designed glasses can create a moisture chamber around your eyes to minimize drying.

•• Daylight may seem harsh and bright sunshine intolerable. Also the wind and smoke may be painful. Wearing sunglasses may help.

•• A high dietary intake of omega-3 fatty acids (found in fish oil and flaxseed oil) may help.

•• Other possibilities include autologous serum eye drops. •• Tear ducts can be plugged with tiny silicone plugs. This reduces how fast the tears drain and helps to conserve your natural tears and artificial drops that you have administered. The eye specialist will be able to make the best recommendations for you.

Mouth Problems are usually related to GvHD and infection. Therefore good mouth and tooth care is essential. You will be referred to the dental school at one year post transplant.

•• Use a fluoride toothpaste (most toothpastes are fluoride). •• If you have cGvHD you may find your mouth is dry. This may be a long term problem. The reduced saliva increases the risk of tooth decay; saliva is the key defence to reducing bacteria in the mouth.

•• Regular visits to the dentist are recommended, every 6 months (if cGvHD of the mouth) and yearly otherwise.

•• Note any painful areas and discuss these with your dentist and transplant consultant. 6

•• Patients with cGvHD of the mouth should perform mouth stretches at least twice a day.

•• Brush teeth after food and use saline mouthwash or water to swill away food debris.

•• Artificial saliva may help with dryness and the breakdown of food. It is important to note any of the following: restriction when opening your mouth, chapped lips (use Vaseline), ulcers, swelling of gums (cyclosporin can also cause swelling of gums), redness and pain. You may also become sensitive to spicy foods, toothpaste or fizzy drinks. All these symptoms can be discussed with the dentist and the transplant team. Please see the nutrition guideline booklet. This has tips for mouth care and gives you ideas of how to increase your calorie intake.

Skin scalp and nails Keep the skin moisturised, particularly if you have graft versus host disease, to reduce the risk of skin tears or ulcers. Use a non perfumed moisturiser such as “aqueous” or “Simple”. It is useful to test out different products as what works for you may not work for another. Products patients have suggested are Aveeno and Bio-oil. Skin affected by GvHD can become thicker, delicate and have less elasticity causing some people to have restriction in 7

movement. Stretching exercises can be very useful to improve elasticity or massage. A physiotherapy consultation may also be of benefit. When in the sun use a high protection sunscreen (at least SPF30). However, 5-10 minutes in the sun, without sun cream is unlikely to burn the skin and will allow vitamin D production. See the section on bones for more information.

•• Cover arms and legs and wear a hat if you are in direct sunlight.

•• Note any dry skin, itching, rash, sores, ulcers, swelling and changes in skin colour or texture.

•• Note any new changes with moles, for example, a change of appearance (raised or bleeding).

•• Nails can become ridged, brittle and can split. Good hand care and the use of moisturisers is recommended. A small minority of patients notice that scalp hair can be thinner. Applying too much steroid cream to skin will damage the surface and cause stretch marks. A finger tip unit (FTU) is a useful way to measure how much cream is needed for areas of the body. An FTU is a line of cream from the finger tip to the 1st crease of the finger. Area of skin

Size is roughly

FTU each dose (adults)

A hand and fingers

2 adult hands

1 FTU

Front of chest and abdomen

14 adult hands 7 FTU

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Back and buttocks Face and neck

14 adult hands 7 FTU 5 adult hands 2.5 FTU

Entire arm and hand

8 adult hands

Entire leg and foot

16 adult hands 8 FTU

4 FTU

Muscles Prednisolone belongs to a steroid group called corticosteroids known for causing weakness in the muscles. Note any muscle cramps (this could also be a sign of a low magnesium level) muscle pain, tightened muscles and tendons, weakness, joint stiffness and restricted range of movement at major joints. You may be referred to the physiotherapist for strengthening exercises. It is helpful to do exercise that involves a range of movement /motion and strengthening techniques. Regular exercise is important, particularly strengthening and muscle building. GvHD can affect your neuromuscular structures. This causes nerve pain, muscle weakness and cramping. For reasons that are not fully understood, muscle cramping can persist years after GvHD has resolved and can also occur in individuals who have never experienced GvHD. •• Tonic water, which contains quinine, can sometimes provide relief as can certain prescription drugs. If you are experiencing frequent cramps speak to your doctor to see if you are on any medications that could be exacerbating them. 9

•• Stretching exercises may help, although there is a lack of research evidence. •• At first, do stretching exercises of affected muscles for about 5 minutes, three times a day. Do the last exercise shortly before bedtime. If the cramps ease you may only need to do the exercise once or twice a day.

Bones After the transplant it is not unusual to have reduced bone density. This is affected by the dose and duration of the steroids or drugs such as Cyclosporin and Tacrolimus needed for GvHD. •• Preventative measures include regular exercise calcium and vitamin D replacement. •• Women may need to take HRT (hormone replacement therapy) but this will be discussed at clinic and you will be referred to a specialist for advice and treatment. You will have a bone scan called a DEXA scan at one year post transplant and the results and treatment if needed, discussed with you. It is likely that you have had vitamin D replacement already and this vitamin will be checked routinely at clinic visits. Most vitamin D is made in the body after sun exposure. Information leaflets are available. Avascular necrosis (AVN) is caused by loss of blood supply to the bone. It is not always clear what causes it in the general population but in the transplant setting it is usually attributed to the use of long term steroids needed to treat GvHD. Tell us if you have any pain in hips knees (particularly on weight bearing) wrists and ankles. 10

Gastrointestinal tract The gut digests and absorbs food and expels waste matter. The gut also contains many immune system cells and serves to protect the body from infection. When the cells that line the gut are damaged by GvHD they are less able to absorb nutrients and protect the body from infection. Note problems such as feeling full early, loss of weight, nausea and vomiting, abdominal pain, diarrhoea, bloating, painful/difficulty swallowing particularly dry foods/ pills and heartburn. An endoscopy may be performed to see if there is any inflammation or narrowing of the gullet (also called oesophagus). Biopsies are usually taken.

Cardiac risk factors The risk of coronary heart disease increases for people as they get older. Additional risk factors are high blood pressure, diabetes, family history of heart disease and smoking. Data from long term transplant follow up studies indicate that some patients have a four fold increased risk of heart disease. This risk can be reduced by maintaining a healthy life-style. Advice for all the population is: •• Diet should be low in fat, particularly saturated fat.

•• Reducing/treating raised cholesterol. Your blood will be tested in clinic or you will be asked to attend your GP practice. This test is best performed in the morning after you have fasted for 12 hours. 11

•• Diet should be rich in fresh fruit and vegetables. •• Check blood pressure: It is important that high blood pressure is diagnosed and treated. Your blood pressure should be checked at your clinic appointment or at your general practice by the practice nurse.

•• Diabetics automatically have a higher risk of heart disease. Maintaining a stable blood sugar is extremely important.

•• Smoking. There are many services to help support people to quit smoking. This can be accessed via your GP or local pharmacy. Your risk of smoking related heart disease will not start to reduce until some years after stopping smoking.

•• Reducing alcohol intake to less than 21 units per week for men and 14 for women. Avoid binge drinking.

•• Obesity. Try to maintain a healthy weight for your height. Fat distributed centrally (around the abdomen) is a particular risk. Central obesity is likely in men with waist circumference of 102 cm or more in Caucasians and 90cm or more in Asians. Corresponding waist values for women are 88cm and 80 cm.

•• Lack of exercise. Exercise that increases your heart rate (moderate intensity) should be done for 30 minutes every day. This can be broken up into 10 minute bursts.

•• Significant family history of premature heart disease. This is diagnosed when cardiac disease is present in men under 55 and women under 65 with one first degree relative (e.g. parent or sibling) diagnosed with heart disease. By leading a healthier life-style we can all reduce or reverse the risks of heart disease in the future.

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Risk factors can be calculated individually using a scoring tool via the internet www.patient.co.uk. This may help you to understand your own individual targets and where changes can be made.

Liver The team will assess your liver tests on a regular basis. Irregularities are usually due to GvHD, certain drugs and iron overload from previous blood transfusions. Report any changes such as jaundice, itching, malaise (feeling of general body discomfort) and fatigue. You may be more susceptible to the toxic effects of alcohol than before, meaning that any alcohol intake can directly affect your liver tests Many long term survivors will have some degree of iron overload. This may cause an elevation of the levels of a substsance called ferritin which is a normal constituent of blood. Ferritin levels are monitored closely after transplant, particularly if you are still requiring blood transfusions. Iron overload may, over several years, cause damage to organs such as the liver and heart. The treatment of iron overload is usually quite simple: It may be possible to take about a pint of blood from you each month to remove iron from the body gradually. This procedure is called a venesection. (Healthy blood donors donate blood by venesction too.) Alternatively a drug can be used called Desferral, this can be administered at home as a sub-cut infusion.

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Ferritin levels can also be raised due to infection so the diagnosis of iron overload may be unclear and, for this reason, a liver scan and/or biopsy is sometimes needed.

Respiratory The respiratory system includes the trachea and lungs. The main causes of respiratory problems after transplant are chronic graft versus host disease, infection and previous chemotherapy or radiotherapy. The lungs may become stiffer (causing restriction of breathing), less able to transport oxygen to the blood stream and be more susceptible to infection. All patients will have a pulmonary function test at one year after transplant.

•• Note signs of difficulty breathing, wheezing, and shortness of breath at rest or on exertion and a dry cough.

•• If you are a smoker try to cut down or stop all together. The NHS offers great support for this.

•• Monitoring of particular infections such as CMV (done by a blood sample) will continue.

•• Preventative antibiotics such as co-trimoxazole will be given when your immune system is low. Sputum samples may also be taken.

•• Deep breathing exercises may be of benefit. A bronchoscopy may be required to identify infections not identified by blood cultures or sputum samples. Recurrent sinus problems are common, particularly in patients with on-going immune suppression or chronic tobacco smoke exposure. Post-nasal drip can also be troublesome for a small 14

amount of patients. An ENT (Ear Nose aad Throat) referral may be necessary.

Renal The renal system includes the kidneys, ureters, bladder and urethra. Kidney function is checked via your blood or with a urine sample. This is performed routinely at clinic visits. Renal problems are related to chemotherapy, underlying disease (e.g. multiple myeloma), age and drugs damaging to the kidneys. Pre-transplant problems with renal function are also relevant. Maintaining a healthy blood pressure is important for the kidneys to stay healthy.

Hormones/sexual A transplant can affect sexuality in many ways. It can change hormonal levels and sex drive (libido).

•• Males: Damage to the small blood vessels (vasculature) caused by chemotherapy or radiation may lead to erectile dysfunction (ED). Men also report reduced sensation. Such problems are reported by up to a quarter of patients, and may sometimes be associated with changes in hormone levels. ED can also occur in times of stress - for example it may be associated with a general loss of self-confidence or generally feeling unwell. It is important to establish if ED is due to a physical or emotional problem so that the right treatment can be offered.

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•• Females: The transplant may lead to early menopause and can reduce the lubrication and elasticity of the vagina. There may be inflammation of the skin, numbness and lack of sensation. In rare cases, there is a narrowing or closing of the vaginal canal, which can make intercourse painful or impossible. Other factors, such as changes in your body image or concern about hygiene post transplant, may also affect desire and sexual activity. Even small changes in energy levels can reduce one’s libido. Women should note any tightness, dryness, itching, burning, painful intercourse, painful urination and narrowing of the vagina. Vaginal lubrication: Sylk and Replens are lubricants that patients have recommended but alternatives may work better for you. They are available in high-street chemists and on-line. KY jelly should be used just before intercourse and not as a general lubricant. A referral to an endocrinologist may be needed to discuss hormone replacement therapy (HRT). Women are likely to require HRT to help with libido, sexual function and bone density. The first step for both men and women is to mention these issues with the transplant team; we understand that this can be difficult and embarrassing. Fertility is usually reduced after a transplant, but this is another important issue to discuss with the transplant team, so that contraception is used appropriately where fertility is likely. 16

Infertility is a common and distressing complication of transplant for most patients (92% of males and 99% of females). The likelihood of infertility is dependent on your age at transplant, pretransplant therapy and the conditioning regimen used for your transplant. There are fertility services based in Leeds and you should discuss a referral with your transplant team.

Thyroid Thyroid function will be monitored long term post transplant. About 15% of patients will develop an under-active, or occasionally an over-active thyroid. This most commonly occurs at about 4 years after the transplant. Therapy is usually simple and effective.

Your quality of life Quality of life (QOL) is a complicated issue and influenced by many factors. QOL encompasses multiple dimensions of well being, physical, psychological, social and interpersonal, financial and spiritual domains. QOL will differ from person to person; however issues surrounding QOL are important to discuss. You may find it difficult to adjust to life after transplant or feel depressed even though things are generally going well. Patients report that the presence of ongoing physical symptoms greatly influences their QOL. Please tell the 17

transplant team if you are experiencing problems - it often helps to talk! Patients tell us that support from the clinical psychology service can be extremely helpful. Simply having the opportunity to vent anger or unhappiness or grief with someone other than your family or team can reduce the stress that you feel. Financial worries may cause major problems for you and your family - please ask to be referred to the social worker to obtain information about benefits or other relevant advice. The Robert Ogden Centre or the Information Lounge on Level 1 of the Bexley Wing offers a drop in service where information can be sourced (see page 22).

Secondary cancers Patients receiving an allogeneic transplant have a 2-3 fold increased risk of developing secondary cancers related to the treatment, severity of immunosuppression and GvHD; this can be a devastating prospect. Remember, however, that the general population is also at risk of cancer: •• smokers have a 26 fold increase of lung cancer.

•• obesity increases the risk of cancer. •• poor diet, smoking, and alcohol will all increase the risk of mouth cancer. Therefore, as a population we all need to be vigilant regarding cancer risks.

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What can you do to reduce your risk of getting a new cancer? •• Check breasts for lumps - particularly if you have had radiotherapy or have a family history of breast cancer. Some women may be eligible to start screening programmes earlier than the general population.

•• Check testes for lumps. •• Check the skin for moles - report these to your doctor especially if the moles are raised, changing in appearance or bleeding.

•• Check mouth for any changes – see your dentist at least once per year.

•• Note any bleeding after passing a bowel motion - this is not always due to piles! Note any change in bowel habits for example new problems with diarrhoea or constipation. There is a nationwide screening programme for bowel cancer and this is being offered to people aged 60-69 years.

•• Cervical smears. Abnormal results are common after transplant. Treatment is simple if started early - be vigilant and do have your smears.

•• Family history - be aware of any cancers that may have occurred in your family. Discuss this with your Gp or transplant team. Aim to understand the risk factors involved and any characteristic symptoms.

Annual assessments When the time is right, your transplant clinic appointments will become less frequent until eventually they are once a year. It is important that you continue to see us on an annual

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basis so that long term issues can be addressed and we can update you about new research results that may help to improve your health. We will ask you to fill out an annual health assessment form. If you would like this e-mailed to you before the clinic please contact: [email protected]. Where possible, shared care with your local hospital can be arranged, but we would still like to see you at least once a year. The transplant team have written this booklet with you in mind - we want to encourage and help you to lead a healthy, happy and productive life after your transplant. Please let us know how we can improve this booklet. The transplant team may be contacted via: Ward 89: 0113 206 9189 or by e-mailing: [email protected].

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Useful websites www.allinex.org www.menopausematters.co.uk www.nos.org.uk National Osteoporosis Society 0845 130 3077 www.ensurewith.com 0845 230 7159 www.patient.co.uk - is one of the most trusted medical resources in the UK, supplying evidence based information on a wide range of medical and health topics to patients and health professionals. www.thedryeyezone.com - a resource centre for people with severe or chronic dry eyes www.dryeyepain.com - a web site to provide information that might be useful to people with dry and painful eyes. www.bhf.org.uk – British Heart Foundation www.macmillan.co.uk - Cancer Survivorship Guide

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Leeds Cancer Support Leeds Cancer Support complements care provided by your clinical team. We offer access to information and a wide range of support, in a welcoming environment for you, your family and friends. We can be found in the information lounges in Bexley Wing and also in the purpose built Robert Ogden Macmillan Centre. Information Lounge Level 1 Open from 10am - 4pm. Tel: (0113) 206 8816 Information Lounge Level -2 Radiotherapy Department Open from 8.30am - 4.30pm Tel: (0113) 206 7603 Robert Ogden Macmillan Centre Open from 10am - 4pm. Tel: (0113 206 6498) All the above services can be emailed on: [email protected] The Robert Ogden Macmillan Centre The Centre is on the St James’s Hospital site and offers a variety of support services including counselling, support groups and complementary therapies. These therapies include Reiki, relaxation and visualisation, hand and foot massage and many others. You can just drop in for a coffee and a chat anytime. Open from 10am - 4pm Monday to Friday.

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Natural Healing and Relaxation In the Complementary Therapy Room on Level 1, Bexley Wing, patients can receive natural healing and relaxation by meditation using breathing exercises. This may help you to cope with stress and anxiety giving inner peace and strength. There is no conflict with religious beliefs. If you would like to use this service please ask a member of staff, or telephone 0113 268 5724 any morning to arrange an appointment. More details are available from the Cancer Support and Information lounges.

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© Leeds Teaching Hospitals NHS Trust 2012 • 1st edition (Ver 1) Developed by Suzanne Liebersbach, Haematology Nurse Specialist Design by Medical Illustration Services • 2011110162/JG Printed by: The LTHT Print Unit • WXXXXXX

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NSO/230 Publication date 05/2012 Review date 05/2014

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