Dealing with the psycho-social aspects of the disease

Before you start treatment, it is important to ask your doctor what the treatment options are, how effective they are likely to be and what side effects you may encounter. Every patient will respond differently, so it is impossible for doctors to tell you exactly how your body will react, but it is possible to give a good general indication. They will also be able to tell you what is likely to happen if you decide not to have a particular treatment.

The treatment that your doctor recommends will depend on the results of all the tests that were carried out during and immediately after diagnosis. Understanding what is happening to you and why it is needed will help you to cope, both at the beginning and as your treatment proceeds.

Make sure you tell your doctor or nurse if you have any new symptoms, or if your existing symptoms get worse, so that your treatment can be modified or changed. Most side effects of treatment are short-lived and can be reduced with supportive treatment. It is also important to find out from your doctor about any symptoms that can be worrisome and would mean that you should call for medical help.

While your active treatment is underway, it is common to feel that what you are going through is hard for you and your family to live with. Living with myeloma is much more of a challenge than simply enduring the symptoms and side effects of treatment, since it may interfere with some of your normal activities. You may feel a sense of loss of time and freedom. At times this may make you feel depressed, angry or resentful. You may feel isolated, and that other people don’t understand what you are feeling, or are afraid to talk with you about it. All these feelings are normal. Try to do things you enjoy, but don’t feel guilty if some days are not so positive. Joining a myeloma support group or online forum can be enormously helpful in sharing advice and keeping up your morale.

Once your treatment period is over, you may feel better and able to gradually presume your normal life activities again. In some countries and in some cases, maintenance treatment, e.g., a low dose of lenalidomide or thalidomide, is given over a long period, with the aim of making the period of remission last for as long as possible. In other instances, a consolidation treatment can be given for a short time after the end of the main therapy to obtain the maximum benefit. Both options may be beneficial, but may not necessarily be available in your country nor recommended by your haematologist given your specific circumstances.

Your myeloma may become resistance to treatment, or you may not respond to treatment at all. This is known as refractory myeloma.

This can be disappointing, but it does not mean that you will not respond to a second-line course, usually of a different treatment. An indication that a treatment has not been successful is a return or increase of symptoms, including bone pain and lack of energy. The relapse will be confirmed by tests; principally a rising level of paraprotein in your blood. Continue to talk to family members, friends and healthcare professionals about how you are feeling. Stay informed about future treatments and the possible options for the future. It is OK to feel sad and upset. Tell your healthcare team who have experience supporting patients and family members in similar situations.

Preparing for medical check-ups

You will have regular check-ups from the time of your diagnosis. The frequency may vary in different countries in Europe, but they are likely to be every few weeks/months and will be set by your physician. Because myeloma is a complicated condition that brings with it many questions, it is a good idea to think carefully about any questions that you have before your check-ups.

We recommend writing down any symptoms, feelings, or treatments you may have questions about and keep a diary in the days or weeks before to ensure you cover everything. If you leave a notebook somewhere handy in your house or carry it with you, you can make a note of questions whenever they come into your mind. You can take the list with you to the doctor at your next appointment. Many people find it helpful to take their partner or friend with them; this can enable you to take in and remember the doctor’s suggestions. If he or she proposes a change in your treatment, it is perfectly acceptable to ask for a little more time to make your decision when you have been able to discuss it with your family.

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