High dose chemotherapy and haematopoietic stem cell transplant

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1 High dose chemotherapy and haematopoietic stem cell transplant Gloucestershire Haematopoietic Stem Cell Transplant Service 14 GHPI1326_07_15 Department: Haematology Review due: July BETTER FOR FOR YOU

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3 Contact information We hope that the information given in this leaflet gives you great confidence and improves your understanding of high dose chemotherapy and stem cell transplant. Please remember that if you have any problems or questions, however small, we will do our best to answer them for you. Transplant Co-ordinator Tel: Monday to Friday, 9:00am to 5:00pm For further information please contact your clinical nurse specialist. Further information This information leaflet is available in large print and on computer disk (it is also available in Braille, other languages and on audio tape on request). Please contact the Patient Advice & Liaison Service (PALS). Patient Advice & Liaison Service (PALS) Gloucestershire Royal Hospital Tel: Text: Monday to Friday, 9:00am to 5:00pm Content reviewed: July 2015 Introduction This leaflet will explain more about high dose chemotherapy and peripheral stem cell rescue (sometimes referred to as stem cell transplantation). We hope that you and your family, friends and carer (if appropriate), will find the leaflet useful and that it will help to answer any questions. Your treatment will take place in Rendcomb Side Rooms which is on the 1 st Floor of the Oncology Centre, at Cheltenham General Hospital. Your consultant and Clinical Nurse Specialist will meet you before your admission, to go through the treatment process with you and answer any questions you may have. In order to treat your disease further, we need to give you high doses of chemotherapy which will destroy your bone marrow. Your stem cells, which were collected previously in Bristol, are then given back to you to rescue your bone marrow from the effects of the chemotherapy; this is often known as stem cell transplant. There will be some investigations before your stem cell transplant, such as blood tests, heart tests and lung function tests. Your team will discuss and explain each test to you. The tests are to make sure that you are fit to have the treatment. All test results will be made available to you and the health care team involved in your transplant, before your treatment. The results will remain confidential, only you and the team involved in your transplant will see them. 13 2

4 What does high dose chemotherapy and stem cell rescue involve? There are 4 main stages: 1. The collection of stem cells (the harvest) from you. This is an outpatient procedure carried out at the Therapeutic Apheresis Unit in Bristol. The cells will be processed, frozen and stored until you are admitted for treatment. You will be given some separate information about the details of this. 2. High dose chemotherapy (sometimes called conditioning regimen). Chemotherapy is usually given over a number of days depending on which regimen you are having. It is given into your blood stream through a central line. You may already have this line from a previous treatment. Your consultant haematologist or nurse specialist will explain everything to you in detail. 3. Stem cell rescue. After you have received all your chemotherapy, you will have a rest day when you do not receive any chemotherapy. The following day, your stem cells are brought over from Bristol and are thawed in a water bath before they are put back into your blood stream via your central line. This procedure takes approximately half an hour, depending on the number of bags that are re-infused. There is a preservative called DMSO in your bags of stem cells which may make you feel sick, so you will be given an anti-sickness tablet about an hour before the cells are returned. The DMSO can also leave a smell of sweetcorn in the room, which will soon pass. 3 We often look busy, but we can always find an opportunity to talk. Our clinical nurse specialist may be able to help you with your concerns. Haematology clinical nurse specialist You and your family, friends and/or carer will meet a clinical nurse specialist before you have high dose treatment. They will give you information about the treatment and your stay in hospital and answer any questions with the doctors help, if needed. You will be seen by a nurse specialist whilst you are on the ward and when you have been discharged home. The nurses will also be available on the telephone to offer you support and advice. They can also arrange for you to meet someone who has gone through having high dose chemotherapy if you wish. The haematology nurse specialist can give you advice about money and financial issues and, if necessary, can refer you for more specialist advice. Hospital chaplain You are welcome to meet with a hospital chaplain who can support you with the spiritual and religious aspects of your life. Please let the ward nurses know if you would like to meet a chaplain or representative of any religion. 12

5 How can I prepare for high dose treatment? Smoking If you are a smoker we strongly advise you to try and give up before having treatment, particularly as smoking increases the risk of chest infections. We do realise that this can be difficult, but if you would like further advice or help please ask. Diet Try to eat a well balanced and nourishing diet. Normally, we advise people to try and maintain their present weight. Please let us know if you need further advice about diet and food. We can arrange for you to see the dietician. Dental care Visit your dentist for a check-up as soon as possible before high dose treatment, to allow for any necessary work to be carried out. It is very important that your teeth are in good condition, as the mouth can be a source of infection. If you do not have a dentist, please let your nurse specialist know. Telephoning It is best to have only 1 family member or friend telephoning the ward and feeding back information to your wider family and friends. High dose chemotherapy is a major procedure that has an impact on every aspect of your life. With it can come many different reactions and feelings, but we hope we can help, listen and be supportive Recovery period This is the time you spend in hospital waiting for the stem cells to recover and grow in your bone marrow. It is during this period that your white blood cell counts will be at their lowest, making you vulnerable to infections. How are stem cells transported from Bristol? Your stem cells come back from Bristol in a dry shipper which contains liquid nitrogen at a temperature of about centigrade. The Blood Transfusion Service will bring your cells to Cheltenham General Hospital on the day of treatment. How long will I be in hospital? The length of time spent in hospital varies greatly from person to person. As a rough guide, the length of stay is 3 to 5 weeks, depending on how long it takes for your new stem cells to work efficiently, and for you to recover from the side effects of treatment. You can expect to be off work for at least 3 months. What are the side effects of high dose treatment? Everyone having high dose chemotherapy will experience certain symptoms as a result of the conditioning treatment. These should be thought of as side effects, rather than set-backs or complications. 4

6 The side-effects may be unpleasant, but we have medication available and expertise to treat them. As everybody is different, it is difficult to predict exactly how you will feel. However, these are some side effects you are likely to experience: Nausea and vomiting This is a side effect which can be controlled. There are many anti-sickness drugs available now which are effective in most cases. Eating frequent small meals and snacks, such as a biscuit or a glass of milk, will also help. Sore mouth Chemotherapy works by attacking fast growing cells and there are plenty of these cells lining the mouth and gut. As a result, the mouth can become very sore and become ulcerated. It is not possible to prevent this from happening altogether, but you can help to reduce the problem by sucking ice pops when you are having one of your chemotherapy drugs called melphalan. Keeping your mouth and gums as clean as possible will also help. A sore mouth can make everyday tasks, such as talking, eating and drinking, very difficult and painful. We can give you strong pain relief, which is very effective for this type of pain. If your mouth does become sore, we can provide softer foods and nourishing drinks. You may also find that chemotherapy alters your sense of taste, but this will return to normal in time. Toiletries you will need a soft toothbrush, toothpaste, shampoo, liquid soap in a dispenser, body lotion, deodorant and flannels (we advise you to have a fresh one daily or we can provide disposable flannels) Wigs, hats or scarves, if you feel more comfortable with your head covered Electric razor. It is not advisable to wet shave as your platelets will be low and there is a risk of bleeding. How can I pass the time in hospital? Exercise - for most of the recovery period after high dose chemotherapy you should feel quite well and it is at this time that you can become very bored and lethargic. Gentle exercise helps to maintain the muscle tone, balance and posture that are required to perform normal activities such as getting out of bed, standing up and walking. Exercise can also help to release tension and help you to relax. Reading - bring in books that are easy to read as it can be difficult to concentrate. Hobbies - you may have a suitable hobby that is possible for you to do whilst you are in hospital. Music - CD player or an ipod for example, may be used in your room. Television- there will be a television / DVD player in your room. 5 10

7 These include cereals, milk, milk shakes, hot drinks and soups. Extra snacks such as sandwiches, cake, cheese and biscuits, yoghurts and fruit can also be obtained from the main hospital kitchen for you. You might like to bring in some of your own food and drink such as cartons or small bottles of squash, fizzy drinks, wrapped biscuits, sweets and crisps, fresh or tinned fruit. There is a fridge in each room for you to store foods that need to be kept cold. Please label food by putting the date when opened on it. What do I need to bring into hospital with me? As you will be in hospital for quite a while, you are welcome to make your room as comfortable and homely as you like. Some suggestions are: Your own pillow if you do bring this in, please bring in some spare pillow cases, but ideally not white so we know that it is yours and not the hospital s white bed linen Items such as photographs, posters, books, games, jigsaws, DVDs and silk flowers (but no fresh flowers or plants) Day clothes clothes that are comfortable and easy to wear. Track suits are ideal or you may wish to bring in night clothes that can be worn during the day Indoor shoes or slippers with a non slip sole Diarrhoea This can occur during or following your chemotherapy. It can usually be controlled with tablets. Hair loss One of the effects of the chemotherapy on your body, which can be upsetting, is that you will lose most, if not all of your body and head hair. This is temporary, and your hair should grow back within 2 to 3 months. Your new hair may be darker, thicker and curlier than before. If you would like a wig during hair loss, let us know, and we will arrange this for you. Tiredness and lethargy You may feel very tired due to the effects of chemotherapy. Also, as the bone marrow is not producing sufficient red cells, you will be anaemic and may need a blood transfusion. You may also find you will have difficulty concentrating and have a reduced memory. Nose bleeds You may have nose bleeds and notice that you bruise easily. This is because your marrow is not producing platelets which are needed to help your blood to clot. For this reason you may need platelet transfusions. Infection It is very common to develop infection in the week following high dose treatment when your resistance is low. There are however, a wide range of antibiotic drugs available which can treat the majority of infections. 9 6

8 How can the risk of infection be reduced? In the week after your chemotherapy treatment, your white cell count will start to drop. As it drops, you will have less resistance to infection. For this reason, there are certain precautions which should be taken. You will be nursed in a single room until your bone marrow produces cells in normal numbers again. You are very welcome to have visitors at any time, but ideally limit the number of visitors to 2 or 3 at any one time. Also, it is a good idea to ask your friends and relatives to telephone before they come, to see whether you feel like having visitors. Children are allowed to visit, but not if they have been in contact with a cold or infectious illness such as chicken pox. It is better to ask adults with colds not to visit. However, it is worth remembering that the majority of infections arise from the micro-organisms which normally live happily on or in your body. These can get out of control when you have reduced resistance to infection. Hand washing has been found to be the single most important protection against infection. Therefore, you will find that staff wash their hands, or use alcohol gel as they come into your room and also before they touch you. You should insist that your visitors do the same. 7 Will treatment make me infertile? Patients undergoing high dose chemotherapy have a high risk of becoming either temporarily or, more likely, permanently infertile, especially if female and near to menopausal age. For male patients, sperm banking may be possible. This should be discussed with your haematology consultant at the earliest possible time. Unfortunately it is not yet possible to store female eggs but it is hoped that in the near future this facility will become available. Sexual performance may sometimes also be affected. Women may have an early menopause but symptoms from this can be treated with hormone replacement therapy. Oestrogen creams can be supplied for vaginal dryness. Men who have any problems with sexual performance after treatment should let a doctor know so that this can be addressed. What will I be able to eat? People undergoing high dose chemotherapy need to take extra care in order to reduce the risk of infection from foods. Our dietician has information which advises on the safe storage, preparation and cooking of foods. You will be offered the chance to meet with the dietician during your hospital stay. Another information sheet that is available to you gives a list of foods which are safe to eat and those which are not. You should follow these guidelines whilst your white blood count is low. Whilst on the ward there will be suitable foods for you to choose from the menu. There are also some foods freely available on the ward. 8

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