Navigating the Rollercoaster: Tackling Side Effects on the Multiple Myeloma Journey

In the next few blogs, we will explore eight aspects of living with multiple myeloma: Symptoms and side effects, Moods and emotions, Relationships, Sex and intimacy, Fertility, Finances, Travel, and living alone.

Symptoms and side effects

Bone pain is a common issue for myeloma patients. It is caused by myeloma bone disease, where cancer cells in the bone marrow affect the surrounding bone, leading to faster breakdown than repair. This results in pain and weakened, easily fractured bones in areas like the back, hips, and rib cage. The severity of myeloma bone disease varies among patients, highlighting the importance of managing this aspect of the condition for improved quality of life.

For myeloma patients, treatment often includes bisphosphonates to prevent further bone damage and painkillers to manage discomfort. The disease may limit activities like high-impact exercise or contact sports, leading to a sense of loss for patients. However, exploring new exercises or hobbies is essential to staying active and maintaining a fulfilling lifestyle.

The pain itself can interrupt your normal activities and prevent you from feeling able to live as you normally would.

 

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Peripheral neuropathy is a common side effect of certain medications like thalidomide and bortezomib, often experienced by myeloma patients. It involves damage to the nerves controlling sensation, leading to symptoms like altered sensation, tingling, numbness, and pain in the hands and feet. Symptoms can worsen over time, so it's crucial to notify your healthcare team as soon as they appear for early diagnosis and management.

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Managing pain can be challenging, but there are several tips to help. It's important to take painkillers regularly as prescribed and before the pain becomes severe. If you're not getting relief from your pain, don't hesitate to talk to your healthcare team about fine-tuning your medication. Avoid NSAIDs like ibuprofen to protect your kidneys. Be honest with your healthcare team about your pain and describe it accurately to help find the best treatment plan. Keeping a pain diary helps manage your pain effectively. Learn relaxation, meditation, or visualization techniques. A combination of these can help relieve pain. You must incorporate these practices into your routine regularly for optimal results.

To manage pain effectively, it is recommended to regularly practice relaxation, meditation, and visualization techniques, or a combination of these, to maximize benefits. It is also essential to reduce anxiety levels, as stress can worsen pain. Seeking support through talking, counseling, or complementary therapies can be helpful. When considering massage for pain relief, choose a gentle therapist and communicate your situation to them to avoid further discomfort or harm. Overall, prioritizing relaxation and stress reduction techniques can significantly improve pain management.

 

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To distract yourself from pain, try watching TV, listening to music, or chatting with a friend. Heat and cold, like hot water bottles and ice packs, can temporarily relieve pain. Remember to wrap them in a towel before applying them to your skin. To alleviate discomfort, sit or lie in a comfortable position. Special V-shaped pillows can help when sitting in bed.

If your pain is not being controlled by your prescribed painkillers or with the addition of any of the above, ask your healthcare team for a referral to a pain specialist who will be able to adjust your painkillers for a better response.

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Fatigue is a common issue for myeloma patients, affecting over 90% of individuals. It involves extreme tiredness, weakness, and difficulty concentrating. Other symptoms include mood swings, dizziness, and changes in sleep patterns. Living with fatigue can impact the quality of life and relationships. Loss of intimacy and appetite may also occur. Patients need to seek support and strategies to manage fatigue effectively.

Fatigue in myeloma patients can be caused or worsened by various factors such as anemia, poor nutrition, pain, medications, anxiety, and depression. There is a strong connection between fatigue, chronic pain, and depression, which can impact daily life and relationships. These negative emotions can drain energy and lead to isolation and fear. During treatment, fatigue is common, and it can be most challenging to cope with after treatment ends when things are expected to return to normal. Fatigue can prevent individuals from doing activities they enjoy and cause distress, but coping strategies can help manage its effects.

It is crucial to maintain a well-balanced diet and consult a dietitian to combat fatigue, if necessary. Effectively managing pain and prioritizing sleep by following a routine can also help. Trying complementary therapies, engaging in gentle exercise daily, and keeping a diary to monitor energy levels are recommended strategies. It is important to pace oneself, take rest periods during the day, and seek guidance from a physiotherapist for suitable exercises. These tips can help myeloma patients manage their fatigue effectively.

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Gastrointestinal disturbances, such as nausea/vomiting, diarrhea, and constipation, can be common side effects of myeloma treatments and are unpleasant to deal with. If you experience these symptoms, it is essential to communicate with your healthcare team, as medications can be prescribed to alleviate them. Additionally, there are self-help tips available to help manage these gastrointestinal issues.

Nausea and vomiting can be common and upsetting symptoms for many myeloma patients, but there are ways to manage them. Anti-emetic medications can be prescribed to help prevent and control these symptoms. It is essential to take these medications regularly and not wait until you feel sick, as they may not be as effective. If your prescribed anti-emetics are not working, don't hesitate to ask your doctor for a different option. Remember to inform your doctor if you are vomiting, as it can lead to complications if left untreated. Dehydration can be a serious concern.

If you feel sick before your myeloma treatment, try taking anti-sickness medication beforehand. Strong smells, like food or hospital scents, can trigger nausea, so avoid them or use light perfume on a handkerchief. Consider using soothing aromatherapy scents like lavender to help with nausea and consult a complementary therapist for recommendations.

If you are experiencing vomiting, it is crucial to continue drinking fluids to prevent dehydration. To give your stomach time to rest after vomiting, slowly sip on still or sparkling water or fizzy drinks. In severe cases of vomiting, special fluids can be obtained from your GP or a pharmacy to replace lost fluids. Remember to stay hydrated to help your body recover from vomiting.

If you are experiencing diarrhea, staying hydrated by drinking plenty of water and clear fluids is important. Avoid caffeine and alcohol, and stick to small, light meals while avoiding fatty or spicy foods. Comfortable clothing and soft toilet paper can also help. If diarrhea persists for more than a few days, consult your healthcare team for potential treatment options. Diarrhea while on lenalidomide treatment may be due to bile acid malabsorption, which can be managed with medication prescribed by your doctor.

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Constipation means difficulty going to the bathroom, resulting in less frequent and painful bowel movements. Left untreated, it can cause issues for an extended period and even lead to runny diarrhea. To deal with constipation, drink plenty of water, increase fiber intake, avoid caffeine and alcohol, and exercise regularly. Natural remedies like flaxseed or fig syrup can also help, but consult your doctor before trying them. Only take laxatives if prescribed by your doctor. These tips can help alleviate constipation and promote regular bowel movements.

Hair loss is a common side effect of chemotherapy, but with myeloma treatments, hair thinning is more likely than complete loss. High-dose chemotherapy used in stem cell transplantation may lead to hair loss. Hair loss can be emotional and impact self-image. Talking to a nurse about feelings and management strategies is recommended.

If you lose your hair during treatment, don't worry; it will typically grow back once treatment ends. Initially, the new hair may be very fine, but you can expect a full head of hair in 3-6 months. Your new hair may be curlier, finer, or a different color. Cutting your hair short or shaving it before treatment can help you feel more in control and improve your appearance during hair loss and regrowth. Additionally, wearing hats, headscarves, or wigs can help keep you warm and comfortable during this time.

If you are undergoing treatment at a hospital and are considering getting a wig, ask your nurse about their wig-fitting service. Your hairdresser can help style your wig to your liking. Getting a wig in the hospital may be more accessible, so don't hesitate to inquire about it.

If cancer treatment causes you to lose your eyelashes and eyebrows, don't worry - you can use makeup like eyebrow pencils and eyeliner or false eyelashes to enhance your natural features. Cancer support groups may offer workshops to help you learn application techniques.

 

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Chemotherapy can cause mucositis, resulting in a sore and inflamed mouth. This can make eating difficult, but your doctor can provide treatment, such as mouthwash, to help prevent ulcers. It is important to gently clean your teeth with a soft toothbrush and try ice cubes or lollies to minimize the risk of mucositis during treatment. Tips for when you have mucositis:

• Avoid food that sticks to the roof of your mouth, such as chocolate, peanut butter, or pastry
• Avoid spicy, salty, or tangy foods
• Avoid mouthwashes that contain alcohol
• Drink cold drinks
• Moisten your food with gravy or sauces
• Allow food or drinks to cool slightly before consuming
• Drink through a straw
• Sucking ice cubes or ice lollies
• Try using boiled sweets or chewing gum to stimulate saliva production

Treatment can sometimes cause changes in your sense of taste, making foods taste overly sweet, salty, or metallic, especially after HDT-SCT. However, this should return to normal once treatment is finished. Tips for when your sense of taste changes:

• Try different drinks and foods that you might not usually like to find something that tastes good
• Try not to worry if you can't face eating three meals a day – snack throughout the day instead or eat little and often
• Season your food with spices and herbs
• Marinade food before cooking and use intensely flavored sauces
• Try using plastic cutlery if your food tastes metallic
• Try drinking sugar-free flavored drinks if water is unappealing
• Rinse your mouth before and after eating

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If you experience a loss of appetite during your myeloma treatment, remember to eat when you can and try to have small, frequent meals. Plan meals around when you typically feel most hungry. Stay hydrated, even on days when you don't feel like eating. If your appetite doesn't improve after a couple of weeks or if you lose a lot of weight, talk to your healthcare team. They can connect you with a dietician who can provide guidance on eating a balanced diet and recommend high-calorie and high-nutrient foods and drinks.

Myeloma patients are more susceptible to germs due to the low white blood cell count caused by the disease and its treatments. It is crucial for patients, especially those who have recently undergone high-dose therapy and stem cell transplants or are neutropenic, to make changes to reduce their risk of infections. Signs of infections to watch out for include raised temperature, feeling unwell, shivering, rash, cough or sore throat, diarrhea, and pain or redness around wounds or central lines. Staying vigilant and taking precautions can help prevent severe complications in myeloma patients.

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Seek medical attention promptly if you start showing signs of illness, especially if you feel unwell or are shivering. Contact your doctor or go to the hospital immediately, as early treatment is crucial. Antibiotics may be prescribed to treat the illness, but if it doesn't improve, you might need IV antibiotics in a hospital setting. It's essential to act quickly to ensure you receive the proper care and treatment for your condition. To avoid getting ill:

• Remember to keep your hands clean by washing them with warm, soapy water, especially after using the bathroom or preparing food. It's an easy way to stay healthy and prevent the spread of germs!
• Remember always to keep hand sanitizing gel handy when you're out and about and try to steer clear of crowded places to stay safe and healthy!
• If you or someone in your household feels unwell, please postpone your visit. Thank you for helping us keep everyone safe and healthy!
• Remember to check that all your food is fresh, wash your fruits well, and cook your meat thoroughly.
• Consult your healthcare team for advice on staying healthy, especially if you have a low white blood cell count.