Chemotherapy. Myeloma Infoguide Series

Transcription

1 Chemotherapy Myeloma Infoguide Series

2 Contents 2 Introduction 3 What is myeloma? 4 What is chemotherapy? 5 Decisions about chemotherapy treatment 8 How is chemotherapy used to treat myeloma? 16 Chemotherapy for myeloma patients with kidney problems 17 Before you start chemotherapy treatment 21 Side-effects of chemotherapy treatment 26 How do I know if my chemotherapy treatment is working? 27 The emotional impact of chemotherapy treatment 30 The future 31 Questions for your doctor / medical team 33 Medical terms explained 37 Further information and useful organisations 40 With Myeloma UK you can Other information available from Myeloma UK 43 We need your help Disclaimer The information in this guide is not meant to replace the advice of your medical team. They are the best people to ask if you have questions about your individual situation. Myeloma Infoline

3 Introduction This Infoguide is written for patients with myeloma, their families and friends It provides information about chemotherapy when used as a treatment for myeloma. This Infoguide reviews what chemotherapy is, how it works, when it is used in myeloma, what to expect from chemotherapy treatment and which potential sideeffects may occur. Some of the more technical or unusual words appear in bold the first time they are used and are explained in the medical terms explained section at the back of the Infoguide Aims of this Infoguide To provide you with more information about chemotherapy as a treatment for myeloma To answer some of the more common questions about chemotherapy To help you make informed decisions about the treatment options available Myeloma UK provides a range of specific Infoguides and Infosheets which cover all aspects of the treatment and management of myeloma. You will find a list of them at the back of this Infoguide. If you would like a more general overview of what myeloma is, how it is diagnosed, the most commonly used treatments and many of the things you may have to cope with in living with myeloma, please see Myeloma - Your Essential Guide and Living with Myeloma - Your Essential Guide. To order your free copies contact the Myeloma Infoline on This information is also available to download at If you would like to talk to someone about any aspect of myeloma, its treatment and management, call the Myeloma Infoline on Your call will be answered by Myeloma Information Nurse Specialists who are supported by medical advisors. The Myeloma Infoline is open Monday to Friday, 9am to 5pm, and is free to phone from anywhere in the UK. From outside the UK, call (charged at normal rate). 2

4 What is myeloma? Myeloma, also known as multiple myeloma, is a type of bone marrow cancer arising from plasma cells, which are normally found in the bone marrow. Plasma cells form part of your immune system. Normal plasma cells produce antibodies (also called immunoglobulins) to help fight infection. In myeloma, the abnormal plasma cells release only one type of antibody known as paraprotein, which has no useful function. It is often through the identification and measurement of this paraprotein that myeloma is diagnosed and monitored. Bone marrow is the 'spongy' material found in the centre of larger bones in the body. As well as being home to plasma cells, the bone marrow is the centre of blood cell production (i.e red blood cells, white blood cells and platelets). Our bodies are made up of a range of organs, tissues and fluid - all of which consist of thousands of cells. A cell is the smallest living unit in your body and contains genetic material (DNA) that is unique to you. Normally, cells throughout your body divide and multiply in an orderly and controlled manner. This process ensures that cells are continuously replaced by new ones when needed. A cancer develops when there is a disruption in the normal process of cell division, where one or more cells start to grow in an uncontrolled or abnormal way. In myeloma, the DNA of a plasma cell is damaged causing it to become cancerous (malignant). These abnormal plasma cells are known as myeloma cells and continue to grow uncontrollably unless the process is actively halted. Unlike many cancers, myeloma does not exist as a lump or tumour. Instead, the myeloma cells usually divide and expand within the bone marrow. Myeloma typically affects a number of places in the body where bone marrow is normally active in an adult, i.e. within the bones of the spine, skull, pelvis and the rib cage, as well as the areas around the shoulders and hips (hence the term multiple myeloma). Myeloma Infoline

5 What is chemotherapy? The term chemotherapy is derived from the words 'chemical' and 'therapy' and is the name used to describe a range of treatments aimed at destroying cancer cells. Chemotherapy is also referred to as being cytotoxic, which means that it is toxic or poisonous to cells. The first use of chemotherapy was in the 1940s. Since then, great advances have been made in the field of chemotherapy and other types of cancer treatment. How does chemotherapy work in myeloma? Chemotherapy treatments interfere with the way that myeloma cells multiply and divide, and, in doing so, aim to stop or slow down their growth. One of the ways that chemotherapy works is by destroying cells in the body that are in the process of rapid cell division. As myeloma cells divide more rapidly than normal cells, they are particularly sensitive to the effects of chemotherapy. There are different groups of chemotherapy treatments, grouped according to how they work. These groups include: Alkylating agents: these directly damage the DNA within the cell, preventing cells from reproducing, e.g. melphalan, cyclophosphamide Plant alkaloids: these stop the process of cell division and primarily work during the phase of the cell cycle where the cell is duplicating DNA before cell division, e.g vincristine Cytotoxic antibiotics: these interfere with specific enzymes involved in the duplication of DNA in the cell, e.g. doxorubicin Doctors often use other anti-myeloma treatments alongside chemotherapy, such as: Steroids, e.g. dexamethasone, prednisolone Immunomodulatory treatments, e.g. thalidomide, REVLIMID (lenalidomide) Proteasome inhibitor, e.g. VELCADE (bortezomib) 4

6 Decisions about chemotherapy treatment Not everyone diagnosed with myeloma will need treatment immediately. If your myeloma is not causing symptoms (asymptomatic or smouldering myeloma), the risks of having chemotherapy treatment will often outweigh the potential benefits. On the other hand, if your myeloma is causing symptoms at diagnosis, or has come back after previous treatment, then your doctor will talk to you about possible treatment options. There is an increasing range of effective treatments for myeloma. Some people prefer to take an active role in the treatment decision-making process and it is important to have the opportunity to discuss all treatment options with your doctor. In making a decision about any myeloma treatment, including chemotherapy, you and your doctor will take into account: Your overall general health and any existing medical problems Your age Any myeloma-related complications, e.g. kidney problems Your personal circumstances, lifestyle and preferences The response you have had to any previous treatment Try to gain as much information as you need to help you understand and make decisions about your treatment. Information is available from many sources, including your doctors and nurses, Myeloma UK and reputable internet sites. Talking things over with your family, friends or another myeloma patient can also help to clarify your thoughts and work out your personal priorities. The important thing is that you and your doctor decide and agree together on the treatment you will receive. Myeloma Infoline

7 Getting more than one opinion The way myeloma services are currently organised in the UK means that the hospital where you are treated should involve a range of healthcare professionals working together as a team, known as a multidisciplinary team (MDT). The MDT is likely to discuss management of your myeloma, although often only one doctor (usually the consultant haematologist) will have overall responsibility for your treatment and care. Choosing the right treatment is not always straightforward and some people may feel that they want another opinion, to be sure that the treatment plan is appropriate for them. Doctors are normally happy to arrange a consultation with another doctor, and can usually arrange this on the NHS, although some people may choose to go privately. The second doctor should ideally have your notes or case history before the consultation, so they are familiar with your situation. If you would prefer to seek a consultation with a doctor in a different part of the country you will need to check the local procedure for this. There may be other reasons for wanting to see another doctor, such as a difficulty in communicating with your doctor. In this circumstance, you might ask to see a different doctor, either in the same hospital or at a nearby hospital. What if I don t want any chemotherapy treatment at all? If you choose not to have active treatment for your myeloma, e.g. with chemotherapy, there are many supportive treatments to help alleviate some of the symptoms of your disease and thus improve your quality of life. There may also be some complementary treatments available to help control symptoms. However, it is important that you speak to your doctor about any complementary treatment you would like to take and consult a qualified complementary therapist who has experience of treating patients with myeloma. Some people may wish to delay starting their chemotherapy treatment, perhaps because of personal or family commitments. Whether this is possible or not will depend on a number of individual and myeloma-related factors, and will require an in-depth discussion with your doctor. 6

8 Very occasionally, some people choose to try alternative approaches to treat their myeloma, instead of conventional treatments. Alternative treatments are not tested with the same rigour as conventional treatments, which means there is often no, or at best very little, evidence to support their use. If you decide that an alternative approach is something you would like to try as a way of treating your myeloma, it is important to discuss this fully with your doctor as there are potential risks involved. Advantages and disadvantages of chemotherapy treatment As with any anti-cancer treatment, any benefits of chemotherapy have to be weighed up against the potential risks and side-effects. The main advantages of chemotherapy treatment include: It is a well-proven treatment approach for myeloma and is effective in killing myeloma cells. In addition, it can reduce symptoms and improve quality of life You can have most chemotherapy treatments at home or as an outpatient The main disadvantages include: Chemotherapy can cause some unpleasant and occasionally harmful side-effects, although these are almost always temporary Over time, myeloma cells can sometimes become resistant to chemotherapy. If this happens, your doctor may suggest you try a different type of chemotherapy or a different treatment altogether (e.g. thalidomide or Velcade) Myeloma Infoline

9 How is chemotherapy used to treat myeloma? Broadly speaking, chemotherapy is used to reduce or eliminate the number of detectable myeloma cells in your bone marrow, control any symptoms such as pain, and improve your quality of life. You can have chemotherapy at various stages in myeloma as outlined below: Younger and / or fitter patients will usually be considered for high-dose chemotherapy and stem cell transplant, and will therefore follow an 'intensive treatment pathway' Older and / or less fit patients will usually follow a less intensive treatment pathway, without high-dose chemotherapy and stem cell transplant Intensive treatment pathway There are many effective chemotherapy combinations available for younger and / or fitter patients as part of their initial treatment for myeloma. When a patient is going on to have high-dose chemotherapy and stem cell transplantation, the initial chemotherapy is often called induction treatment. The aim of induction chemotherapy, before high-dose chemotherapy and stem cell transplant, is to achieve a rapid reduction of your myeloma cells without damaging stem cells and the ability to later collect them. If you respond to induction chemotherapy you will go on to have your stem cells collected, followed by treatment with high-dose chemotherapy (known as conditioning). This can potentially kill more myeloma cells than is possible with standard chemotherapy doses. High-dose chemotherapy damages normal cells in the bone marrow as well as myeloma cells, and therefore a stem cell transplant is necessary so that the transplanted stem cells can begin making new blood cells. In myeloma, most stem cell transplants use the patient s own cells. This is known as an 'autologous' stem cell transplant. Occasionally, stem cells from a donor (usually a sibling) are used; this is known as an 'allogeneic' stem cell transplant. The conditioning chemotherapy used in transplantation is usually high-dose melphalan, although you might have other types of chemotherapy for an allogeneic stem cell transplant. 8

10 For more information please see the High-Dose Therapy and Stem Cell Transplantation Infoguide from Myeloma UK. To order your free copy, contact the Myeloma Infoline on Non-intensive treatment pathway As with the intensive pathway, there are many effective chemotherapy combinations available for older and / or less fit patients. Current research indicates that some of these chemotherapy combinations offer just as good a response as that seen with more intensive chemotherapy combinations for younger and / or fitter patients. When high-dose chemotherapy and stem cell transplant is not an option, the aim of chemotherapy is still to achieve a maximum reduction in the number of myeloma cells with the smaller degree of side-effects. In this setting, oral chemotherapy combinations are most commonly used. Whether you have intensive or non-intensive treatment, both individual and myelomarelated factors will determine the exact course and type of chemotherapy you receive. Quite often you will have your chemotherapy in combination with other nonchemotherapy treatments, such as thalidomide and steroids. Chemotherapy treatment for refractory myeloma If your myeloma does not respond (is refractory) to initial or induction chemotherapy, there will still be, for most patients, a number of effective treatment options available, using different types of chemotherapy in a variety of combinations. Chemotherapy treatment for relapsed myeloma Unfortunately, at some point myeloma usually returns (relapses). Though this is always disappointing, there may still be many treatment options available to you. Again, the aim of chemotherapy in this setting is to gain control of the myeloma, relieve any symptoms and to improve your quality of life. If your response to initial chemotherapy treatment was good, then repeating this may be a good option. If, however, your myeloma did not respond well your doctor may suggest using a different type, or combination, of chemotherapy. Myeloma Infoline

11 Chemotherapy treatment for symptom control In more advanced stages of myeloma doctors might prescribe chemotherapy with the main aim being to promote relief from pain or other symptoms, rather than the direct control of the myeloma itself. In this setting, the dose and intensity of the chemotherapy will be much lower, so as to minimise potential side-effects. Chemotherapy treatment as part of clinical studies You may sometimes have chemotherapy as part of a clinical study. The purpose of clinical studies is to try and find the most effective treatments for patients. In myeloma, clinical studies are particularly useful in comparing newer treatments with current standard treatments. For more information please see the Clinical Studies Infoguide from Myeloma UK. To order your free copy, contact the Myeloma Infoline on Common chemotherapy combinations used in myeloma The following tables outline some of the common and newer chemotherapy combinations used at different stages of myeloma Table1 - Table 2 - Table 3 - Table 4 - Induction chemotherapy combinations prior to high-dose chemotherapy and stem cell transplant Non-intensive initial chemotherapy Chemotherapy for refractory myeloma Chemotherapy for relapsed myeloma 10

12 Table 1 - Induction chemotherapy combinations prior to high-dose chemotherapy and stem cell transplant Treatment combination Advantages Disadvantages CTD Cyclophosphamide Thalidomide Dexamethasone Taken orally No stem cell damage Responses in 70% of patients Potential side-effects with thalidomide: thrombosis / neurological complications VAD Vincristine Doxorubicin* Dexamethasone *Doxorubicin was previously known as Adriamycin Note: This combination used to be the standard treatment but it is used less commonly now C-VAD Cyclophosphamide Vincristine Doxorubicin Dexamethasone C-VAMP Cyclophosphamide Vincristine Doxorubicin Methlyprednisolone VAMP Vincristine Doxorubicin Methlyprednisolone Z-DEX Idarubicin* Dexamethasone (* Also called Zavedos ) Responses in 70% of patients Does not damage stem cells Forms basis for stem cell transplant Symptoms of active disease may be controlled rapidly and quality of first remission may be good As above As above As above Taken orally No stem cell damage Intravenous (IV) administration requiring a semi-permanent line Vincristine can cause nerve damage As above As above As above Potential side-effects with Idarubicin: lowered blood counts Myeloma Infoline

13 Table 1 - Induction chemotherapy combinations prior to high-dose chemotherapy and stem cell transplant Treatment combination Advantages Disadvantages Newer / In clinical study T-VAD Thalidomide Vincristine Doxorubicin Dexamethasone PAD Velcade* Doxorubicin Dexamethasone (* Velcade was originally known as PS341) No stem cell damage No stem cell damage Potential side-effects with thalidomide: thrombosis / neurological complications IV administration requiring a semipermanent line Vincristine can cause nerve damage IV administration Frequent hospital visits required Potential side-effects with Velcade: neurological complications VD Velcade Doxorubicin As above As above For more information, please see the High-Dose Therapy and Stem Cell Transplantation Infoguide from Myeloma UK. To order your free copy, contact the Myeloma Infoline on

14 Table 2 - Initial non-intensive chemotherapy approaches (when high-dose therapy and stem cell transplant is not planned) Treatment approach Advantages Disadvantages MP Melphalan Prednisolone MPT Melphalan Prednisolone Thalidomide Taken orally Well tolerated Responses in 50% of patients Well established combination Oral administration Potential side-effects: stomach upsets and reduced blood counts Potential side-effects with thalidomide: thrombosis / neurological complications Melphalan Oral administration Potentially less effective than combination chemotherapy CP Cyclophosphamide Prednisolone Oral administration Potential side-effects: stomach upsets and bladder irritation Cyclophosphamide Oral administration Potentially less effective than combination chemotherapy Newer / In clinical study VMP Velcade Melphalan Prednisolone Potentially effective combination IV administration Frequent hospital visits Potential side-effects with Velcade; neurological complications Myeloma Infoline

15 Table 3 - Chemotherapy combinations for refractory myeloma Treatment combination Advantages Disadvantages ESHAP Etoposide Methylprednisolone Cytarabine Cisplatinum DCEP Dexamethasone Cyclophosphamide Etoposide Cisplatinum MPT Melphalan Prednisolone Thalidomide CTD Cyclophosphamide Thalidomide Dexamethasone Newer / In clinical study VTD Velcade Thalidomide Dexamethasone PAD Velcade Doxorubicin Dexamethasone DT PACE Dexamethasone Thalidomide Cisplatin Doxorubicin Cyclophosphamide Etoposide Can be used to mobilise stem cells Potentially effective combination Taken orally Taken orally No stem cell damage Response in 70% of patients No stem cell damage (significant if stem cell transplant is still an option) No stem cell damage (significant if stem cell transplant is still an option) Potentially effective combination IV administration usually involves a stay in hospital IV administration usually involves a stay in hospital Potential side-effects with thalidomide: thrombosis / neurological complications Potential side-effects with thalidomide: thrombosis / neurological complications IV administration Frequent hospital visits required Potential side-effects with thalidomide: thrombosis / neurological complications Potential side-effects with Velcade: neurological complications IV administration Frequent hospital visits required Potential side-effects with Velcade: neurological complications IV administration usually involves a stay in hospital Potential side-effects with thalidomide: thrombosis / neurological complications 14

16 Table 4 - Chemotherapy approaches for relapsed myeloma Treatment combination Advantages Disadvantages T Thalidomide Taken orally Potential side-effects with thalidomide: thrombosis / neurological complications MPT Melphalan Prednisolone Thalidomide CTD Cyclophosphamide Thalidomide Dexamethasone C-VAD Cyclophosphamide Vincristine Doxorubicin Dexamethasone Taken orally Taken orally Potentially effective combination Potential side-effects with thalidomide: thrombosis / neurological complications No stem cell damage Potential side-effects with thalidomide: thrombosis / neurological complications IV administration requiring a semi-permanent line Vincristine can cause nerve damage C-VAMP Cyclophosphamide Vincristine Doxorubicin Methlyprednisolone As above As above MP Melphalan Prednisolone Taken orally Well tolerated Response in 50% of patients Well established combination Potential side-effects: stomach upsets and reduced blood counts M Melphalan Taken orally Potentially less effective than combination chemotherapy C Cyclophosphamide Taken orally Potentially less effective than combination chemotherapy Myeloma Infoline

17 Chemotherapy for myeloma patients with kidney problems The abnormal 'paraprotein' produced by myeloma cells can sometimes cause kidney problems. If your kidney function is poor (due to either myeloma or any pre-existing condition), it is normally still possible to have chemotherapy. Younger and / or fitter patients with myeloma and kidney problems can also be considered candidates for high-dose chemotherapy and stem cell transplant. Table 5 - Chemotherapy approaches used with kidney problems Treatment VAD Dexamethasone Melphalan Cyclophosphamide Comments Treatment of choice in patients with kidney problems As above Dose reduction is often needed Dose reduction is often needed 16

18 Before you start chemotherapy treatment Before you start chemotherapy, you will need to have some tests and investigations. These provide a set of results to compare with future tests, allowing your doctor to check your response to chemotherapy. Tests include: Blood tests (you will normally have a blood sample taken before the start of each treatment cycle) Urine tests (to measure any paraprotein as well as to detect infection) X-rays (to monitor any bone damage) Height and weight measurement (used to calculate the dose of chemotherapy and to check for possible weight changes) Depending on the type of chemotherapy planned, you may also need your heart function checked. If this is the case, you might have an: Electrocardiogram (ECG) - an electrical tracing of your heart beat Echo cardiogram - an ultrasound of the heart After these tests are complete, your doctor, and / or nurse, will talk you through the treatment plan, detailing when, where and how you will have your chemotherapy, as well as explaining the potential side-effects. Remember that this is your chance to gain as much information as you feel you need, so make sure you ask your doctor, and / or nurse, any questions you may have. You should make sure that you have the details of whom to contact if you have questions, an unexpected side-effect or an emergency during your treatment. It may also be worth spending a bit of time, before your chemotherapy begins, to think about any practical plans you need to make. For example: How you will get to the hospital? Who, if anyone, might come to hospital with you? Are there any family or work arrangements you need to make? Myeloma Infoline

19 How chemotherapy treatment is administered Your course of treatment can vary in length depending on the type and / or combination of chemotherapy planned. Most courses last approximately 4 to 6 months. During this period, you will have a number of individual treatment cycles, each lasting approx 3 to 6 weeks. Treatment cycles vary according to the type or combination of chemotherapy. However, most have a rest period scheduled in before the next cycle begins to allow your healthy cells to recover. Some combinations involve having chemotherapy continuously for a few days whereas other combinations mean you take chemotherapy tablets on certain days over a period of a few weeks. There are different ways of receiving chemotherapy, depending on the specific chemotherapy treatment planned. Some chemotherapy is given by mouth (orally) and other types as an infusion into your vein (intravenous or 'IV' infusion). You can take oral chemotherapy at home, but you will need to have IV chemotherapy in hospital. You can receive some IV chemotherapy treatments via a thin plastic tube (known as a cannula) into a vein in the back of your hand or the inside of your elbow. The nurse will give your chemotherapy through this cannula, and remove the cannula after your treatment. For some chemotherapy treatments for myeloma you will need to have a central line (often a HICKMAN Catheter) inserted. A central line is a flexible, thin, plastic tube that goes into a central blood vessel in your chest. You receive your chemotherapy and other medications through this line, so you will not have repeated needles put into your veins. The nurses can also draw blood samples from the line. It may be particularly helpful for chemotherapy treatment that lasts for several weeks or if you have 'difficult' veins. HICKMAN Catheters are tunnelled under the skin of your chest, and go into a large vein in your neck, below your collar bone. The tip of the tube sits in the large vein just above your heart. Usually the doctor puts in the line under a local anaesthetic, but occasionally a general anaesthetic is used. You will initially have a stitch around the line to hold it in 18

20 securely. There is a small 'cuff' around the part of the line under the skin. The tissue under the skin grows around this cuff over a period of about three weeks, holding the line more securely in place. Nurses will flush the line with saline solution before you have each chemotherapy treatment to ensure that it is working normally. A diagram of a HICKMAN Catheter is shown in Figure 1. 1) Central line is inserted into a vein here 2) The line is tunnelled beneath the skin 3) The tube comes out here Figure 1 - HICKMAN Catheter To prevent the site or the line becoming infected it is important to keep it clean at all times. Your nurse will show you how to look after your line before discharge from hospital and give you contact numbers to call if you have questions. It is important that you speak to your doctor or nurse if the area around the line becomes red, swollen or begins to ooze any pus. You should also speak to them if your temperature rises or you feel unwell generally, as these may be signs of a line infection. Myeloma Infoline

21 You will normally keep the line in place until your course of chemotherapy is completed. A doctor or a specially trained nurse will then remove it. There are other types of line available e.g. PICC (Peripherally Inserted Central Catheter) lines. A PICC line goes into one of the large veins in your arm. The tube is then slid along the vein until it is carefully positioned with the tip sitting in one of the large veins just above the heart. Another way of receiving your chemotherapy is via a continuous infusion pump for a few days at a time. Usually a type of CADD (Continuous Ambulatory Drug Delivery) pump is used which allows you to remain mobile throughout the course of the infusion. Again, this type of infusion is normally given as an out-patient, although you will need to go to the hospital to have your chemotherapy attached to the line and set at the required rate. The pump is attached to your HICKMAN or PICC line by a long tube. The pump is lightweight, about the size of a small personal stereo, and is usually worn around the waist, attached to a bag or a belt. 20

22 Side-effects of chemotherapy treatment Although chemotherapy works well at killing myeloma cells in most cases, it also attacks normal cells and can therefore cause a number of potentially troublesome side-effects. Side-effects are most common in the parts of the body where, as with the bone marrow, there are rapidly dividing cells, i.e. the hair follicles, the skin and the lining of the mouth and digestive system. Each type of chemotherapy treatment does have its own side-effects and even the same type can produce different side-effects in different people. So it is difficult to predict precisely the side-effects any one person might have. It is important to remember that you are unlikely to get all the side-effects listed and that most are only temporary. Before you begin your treatment your nurse or doctor should explain the potential side-effects of chemotherapy and give you advice on reporting and managing symptoms. Sickness, vomiting and appetite loss You may have sickness (nausea) or vomiting with some chemotherapy treatments. Your doctor can prescribe anti-sickness (also called anti-emetic) treatments, which you may be advised to take regularly to prevent any sickness. If you have had nausea and / or vomiting, try not to worry that this could happen again with your next cycle of chemotherapy. If you become overly anxious that this may happen with your next treatment, you may start to associate the hospital, doctors and / or nurses with feeling or being sick. Trying to take your mind off thinking about sickness often helps and, with a little bit of practice, can be a useful strategy. Fresh air may also help to calm nausea, as can relaxation, breathing exercises and lying down and resting, perhaps with some soothing background music. You may find it useful to avoid cooking smells and to ask others to prepare meals. Eating cold food and snacks, can also help until the nausea improves. Myeloma Infoline

23 It is very important to try and keep drinking if you feel sick, to prevent dehydration. Allow your stomach to rest after vomiting, then sip cool drinks, such as still or sparkling water, or fizzy juice drinks, which will also help to freshen up your mouth. If vomiting is prolonged and you can't keep anything down, you should contact your doctor or nurse for advice. If your appetite is poor, you may find that eating small amounts regularly throughout the day helps. You may also benefit from taking nutritional supplements to ensure that you are still receiving all the essential vitamins and minerals. Ask your doctor or nurse to refer you to a dietician if you think this would help. You may also notice that you have altered sensations of taste and smells whilst on chemotherapy. Again, this should only be temporary, although you may want to eat different foods for a while. Diarrhoea and constipation Chemotherapy treatment can have a temporary effect on your bowels, causing diarrhoea or constipation. Again it is important that you inform your doctor and / or nurse if you are concerned about any symptoms. Your doctor or nurse may be able to prescribe treatments such as anti-diarrhoea medicines or laxatives to help to relieve symptoms. Whether you have diarrhoea or constipation, the best self-care tip is to keep drinking as much fluid as possible (i.e. your normal 3 litres a day). Eating foods high in fibre can help prevent constipation, and if you have diarrhoea it is best to avoid fatty and spicy foods until the diarrhoea resolves. Diarrhoea can be more severe after having high-dose chemotherapy as part of a stem cell transplant. In this situation you may need intravenous fluids via a drip. Though diarrhoea is unpleasant and can be distressing, remember that, in most instances, it will only be temporary and you should return to your normal bowel pattern once you finish your chemotherapy treatment. Sore mouth and throat Side-effects of chemotherapy that can commonly occur in your mouth include bleeding gums, mouth ulcers and mouth infections. Your mouth and throat may also 22

24 become sore (this is known as mucositis) and eating, drinking and swallowing may become difficult for a while. High-dose chemotherapy often causes mucositis, which can sometimes be quite severe. Some people find that sucking crushed ice (or an ice lolly), whilst having the chemotherapy helps to lessen this effect. If you do have mucositis then your doctor will prescribe painkillers which will help to ease any discomfort. Again, if eating and drinking are problematic, you may need IV fluids and / or nutrition until you are able to resume eating and drinking normally. Your nurse will teach you how to care for your mouth and show you how to keep it clean with mouth washes and brushes or foam sticks. It is important to recognise the signs of common infection such as oral thrush and herpes and report these to your doctor or nurse. If you have had high-dose therapy and a stem cell transplant, you will usually take medications to help prevent common fungal and viral infections in your mouth. Hair loss Your doctor and / or nurse will explain to you, before your treatment starts if your hair is likely to be affected by chemotherapy. Not all chemotherapy causes hair loss and even when it does, it doesn't always result in complete hair loss. If you do lose your hair, this will usually start to happen within a couple of weeks of starting your chemotherapy. Most likely, you will also lose other body hair including your eyebrows and pubic hair. Hair loss is nearly always only temporary and your hair should usually start to grow back a month or so after finishing treatment. You may want to have your hair cut short before starting chemotherapy as this can help you adjust to losing your hair and make it less dramatic when it does begin to come out. If you don't lose all your hair, try to avoid hair dyes and use a very mild shampoo to avoid any scalp irritation. Most doctors and nurses fully appreciate how upsetting losing your hair can be, for men as well as women. Therefore, if you choose, you will normally have the opportunity to see a wig specialist while you still have your hair. This helps the wig specialist to advise you in choosing a wig that best matches your normal hair colour and style. Myeloma Infoline

25 There are other options available if you decide you do not want to wear a wig. You may want to consider hats, scarves and turbans. Ask your nurse where you can buy them locally. Some people choose to wear a baseball-type cap, which can usually be bought from any department store / sports shop. Lowered blood counts Many chemotherapy treatments suppress the activity of the bone marrow, where most of your blood cells are made. It is therefore quite common for your blood counts (red and white blood cells and platelets) to be lower than normal during your treatment. This can lead to: Anaemia and fatigue: If your red blood count is low you are said to be anaemic and you may feel tired or fatigued, and breathless. If necessary, you may need blood transfusions or erythropoietin (EPO) injections to treat your anaemia. Increased risk of infection: If your white blood count is low (neutropenia) you are more at risk from infection. To help reduce your risk you should try to avoid crowded places and limit your contact with young children or anyone who has a cold or the flu. If you do develop signs of infection, e.g. a fever, cough or inflamed central line, you should report them to your doctor straightaway. Sometimes your doctor may prescribe antibiotics or antiviral treatment to help prevent infection occurring (prophylactic antibiotics). You may need to make some changes to your diet if your white cell count is low. Some foods carry an increased risk of infection so, in order to reduce this risk, you may need to follow a 'clean diet' until your white cell count is normal again. In general, a clean diet avoids 'high-risk' foods such as: raw or undercooked eggs; unpasteurised dairy products; live yoghurts; soft / blue cheeses; shell fish; paté; mayonnaise; meringue; takeaway foods (especially rice) or foods that have not been freshly prepared. As always, it is important to handle and store food correctly and use it by the 'best before' or 'sell by' date. 24

26 Bruising and bleeding: If your platelet count is low then you may find that you bruise and bleed (e.g. nose bleeds) more easily. It is a good idea to use a soft toothbrush whilst you are having chemotherapy to avoid any damage to the gums. Again, you should let your doctor or nurse know if you have any bleeding. Your nurse will take regular blood samples whilst you are on chemotherapy to monitor changes in your blood counts. Sometimes, if your blood counts are too low, your doctor may delay the next cycle of chemotherapy until your blood counts recover. If you are neutropenic then your doctor may prescribe a short course of Growth Colony Stimulating Factor (G-CSF) injections. G-CSF is a type of protein that your body makes which can also be made synthetically. G-CSF stimulates the bone marrow to make more white blood cells and, therefore, shortens the length of time that you are neutropenic. Effects on fertility Some, but not all, chemotherapy treatments can cause temporary or even permanent infertility. This can be quite difficult to deal with, particularly if you have been planning on having children. If this is the case, you should ask your doctor and / nurse about how your chemotherapy may affect you. For women, some chemotherapy treatments can interfere with the way the ovaries work. If you have not been through the menopause it is possible that chemotherapy may bring on an early menopause. Again, it is advisable to discuss this with your doctor and / or nurse to see if this could happen. They will be able to offer advice on how to manage the symptoms of a possible early menopause. For men, some chemotherapy treatments can affect both the number of sperm that are produced as well as their capacity to fertilise an egg. Again the type and intensity of chemotherapy will determine whether these effects will be temporary or permanent. If this is an issue for you, talk to your doctor and / or nurse before starting chemotherapy treatment. Myeloma Infoline

27 Peripheral neuropathy This term describes damage to the nerves of the peripheral nervous system. Vincristine chemotherapy can sometimes cause this. Symptoms include pain or numbness of the hands and feet, unusual sensations, or an increased sensitivity to heat or touch. It is important to let your doctor or nurse know if you get any such symptoms. For more information please see the Peripheral neuropathy Infosheet from Myeloma UK. To order your free copy, contact the Myeloma Infoline on How do I know if my chemotherapy treatment is working? In order to find out how you are responding to chemotherapy you will have regular tests carried out. These tests should include blood and urine sampling and possibly a bone marrow aspirate at the end of your course of chemotherapy. In addition, you may have X-rays and / or a CT / MRI / PET scan if your doctor feels that they would be helpful. Signs that your chemotherapy treatment is working include: A fall in the paraprotein level in your blood and / or urine Reduced bone pain Improvement in anaemia A reduction in the number of plasma cells in your bone marrow One of the best indicators of response to chemotherapy is an improvement in overall general health. See Appendix 1 for details of European Group for Blood and Marrow Transplantation (EBMT) response categories and International Myeloma Working Group (IMWG) uniform response critera

28 The emotional impact of chemotherapy treatment As well as having physical side-effects, chemotherapy can have a considerable emotional impact. Being told you need chemotherapy affects everyone differently. At first you might be overwhelmed, in shock or feel numb. It is important to understand that this is a natural reaction and part of coming to terms with your situation. It may seem, at times, that your treatment takes over your life. It is likely that you will need to alter some of your daily routines in order to adapt to your treatment and any side-effects. It should help to remember that this is temporary and to plan activities that you enjoy or are important to you on your better days between treatments. Perhaps you can plan for a trip away when your chemotherapy treatment is completed. Some people find that keeping a diary or journal can help to clarify their thoughts and feelings during this time, as well as providing a practical and useful record of their treatment. Emotional support Emotional support is important to help you cope with your chemotherapy treatment. It is very easy to feel isolated and strong emotions can often make it difficult to discuss your worries or fears. Talking to someone who understands what is happening can help to ease any feelings of isolation. Myeloma Support Groups provide an informal and comfortable atmosphere in which members can share experiences and information. Many people assume that support groups will be full of doom and gloom, but generally they are postive and full of supportive people who are facing the same issues as you. Call the Myeloma Infoline, look at our website or ask your nurse for the details of Support Groups near you. Many people find that their specialist nurse (if they have one) at the hospital or clinic is a good person to talk to. If you find your emotions difficult to cope with, you might want to ask your doctor to refer you to a counsellor or someone else who can help. You can also call one of the Myeloma Information Nurse Specialists on the Myeloma Infoline for practical advice and emotional support. Myeloma Infoline

29 Of course it may also be helpful not have to talk about your chemotherapy treatment. Many people find work or social situations where they can 'leave the disease behind' for a while help them cope. There is no real right or wrong way to cope emotionally. Taking your treatment one step at a time is probably the best general advice anyone can give. Family and friends Friends and family members can offer a huge amount of emotional and practical support during your chemotherapy treatment and recovery period. They can also help take your mind off myeloma for a while. Sometimes, friends or family might find it hard to cope with the fact that you have myeloma and are on chemotherapy. They too may be scared and unable to express their concerns properly. Some may even avoid you, which can be very painful to accept. Yet it is important to realise that this may simply be because they do not know what to say. It might help to talk to them about your treatment and how you are feeling. This may help to avoid awkwardness and perhaps open up a deeper conversation. Physical relationships It is quite common to feel a loss, or reduction, of your sex drive (libido) when you are on chemotherapy and for some months afterwards. Stress, anxiety and many of the treatments used to treat myeloma can also cause a loss of sexual desire and affect your body image. You may feel too tired or physically unable to enjoy intimacy in the same way as normal. In addition, you may feel that sex is not important when you are trying to cope with your treatment. If a physical relationship is important to you, try to talk to your partner about the way that you feel, even though you may find it difficult to start the conversation. It is easy for people to feel rejected when a physical relationship changes or ceases. Try to maintain a level of closeness, even if you do not have sex, and discuss with your partner which level of intimacy feels comfortable. In time you can gradually return to a more physical relationship. 28

30 For men, chemotherapy treatment can also sometimes interfere with the ability to have an erection, but this should be only a temporary side-effect. Treatments such as VIAGRA are not generally recommended if you have myeloma. Although chemotherapy treatments are not likely to pass into semen or vaginal fluids, most nurses recommend the use of condoms for a few days after your chemotherapy has finished. This is advised even if there is no risk of pregnancy and is intended to prevent any possible problems for your partner. Don't be too embarrassed to talk to your GP, doctor or nurse about problems with your physical relationship. They are used to this sort of discussion and may be able to provide support or prescribe a treatment that can help. Work and financial issues It is likely that you will need to take some time off work when you are on a course of chemotherapy treatment.. Whether your break from your job is temporary or not, finding yourself no longer able to work can have an effect on your self-esteem. Whilst off work you may find it hard to relate to your colleagues. Many of your colleagues will, however, want to offer help and keep in touch. This support could be very useful if you do decide that you want to go back to work. You may find yourself facing unexpected financial worries if you are not able to work the same hours as you normally do. You might be entitled to benefits, help with travelling costs to and from the hospital and reduced prescription charges. Ask your nurse for information about this or contact the Benefit Enquiry Line on Depending on your age and particular cicrumstances, you may decide that early retirement is an option for you. Myeloma Infoline

31 The future A great deal of research is taking place to find more effective and less toxic types of chemotherapy treatment and better ways of using it. It is important to understand that not everyone is suitable for every new treatment and the best and safest way to take any new chemotherapy treatment is as part of a clinical study. Clinical studies are planned investigations involving patients and are designed to test new treatments or to compare different types of current treatment. They are run according to a strict set of guidelines called a protocol and all patients involved in a clinical study are closely monitored. The results from clinical studies will help to determine which are the best treatments and so help to improve care for patients in the future. To find out more about new treatments on the horizon and about clinical studies, call Myeloma UK on

32 Questions for your doctor / medical team Some questions that you may want to ask your doctor / medical team: Why are you recommending this chemotherapy for me? What are the aims of the chemotherapy treatment? How successful has this chemotherapy been in the past? What are the alternatives to this chemotherapy? What exactly does this chemotherapy involve? How will I receive my chemotherapy? Will I need to stay in hospital? Can I keep working? How long will I be on this chemotherapy? Is this chemotherapy part of a clinical study? What about side-effects? What will they be? How long will they last? What can be done to treat side-effects? Whom do I call if I feel unwell or worried? Will this chemotherapy treatment affect my chances of having children in the future? How often will I need blood tests during my chemotherapy treatment? How will I know if the chemotherapy is working? Tips Write questions down and give a copy to your doctor at the beginning of your consultation Carry a piece of paper with you to write down questions as they occur to you Report any side-effects early to your doctor or nurse Myeloma Infoline

33 APPENDIX 1 In general terms, disease response is measured and categorised as in the tables below. It is important to note once again that the duration of response is as important as the level of response. Table 7- European Group for Blood and Marrow Transplantation (EBMT) response categories 2001 Treatment Outcome Complete remission / response (CR) Very good partial response (VGPR) Partial response (PR) Minimal response Stable disease (SD) Progressive disease Definition No detectable paraprotein in the blood and normal percentage of plasma cells in the bone marrow, or absence of myeloma cells in the bone marrow Greater than 90% decrease in paraprotein since start of treatment Greater than 50% decrease in paraprotein More than 25% but less than 50% decrease in paraprotein Less than 25% decrease in paraprotein but not increasing Greater than 25% increase in paraprotein or detection of new bone abnormalities Table 8 - International Myeloma Working Group (IMWG) uniform response criteria 2006 Treatment Outcome Stringent complete response (SCR) Complete response (CR) Very good partial response (VGPR) Partial response (PR) Stable disease (SD) Progressive disease Definition CR as defined below plus normal free light chain ratio, absence of clonal cells in bone marrow = 5% plasma cells in bone marrow, no detectable paraprotein = 90% or greater reduction in blood and urine paraprotein = 50% reduction of paraprotein in blood and 24 hr urinary paraprotein by = 90% Not meeting criteria for CR, VGPR, PR or progressive disease Greater than 25% increase in paraprotein or detection of new bone abnormalities 32