Key factors for treatment
What you need to know about
Myeloproliferative neoplasms (MPNs) have a high symptom burden that affects functional status, emotional well-being, and quality of life for patients. Symptom control continues to be a challenging therapeutic goal despite available pharmacologic interventions.
Managing Myelofibrosis (MF)
The following key factors will help your specialist to work out your best treatment options:
- The number of abnormal red blood cells and white blood cells
- The number of blast cells in the blood (blast cells are cells which are in the early stages of development and do not yet carry out any function)
- Your age
- Certain genetic changes
- Symptoms such as fever, night sweats or weight loss
- Health complications such as spleen and liver enlargement, gastrointestinal bleeding, infections and malnutrition.
What are your options?
Watch and wait
If you have no symptoms when you are first diagnosed with MF, your specialist may suggest a “watch and wait” approach. This usually involves regular check-ups and blood counts, as well as your specialist advising you on ways to live a healthy lifestyle. If your symptoms develop or the disease progresses, you talk to your doctor about what options would be right for you.
Managing an enlarged spleen
An enlarged spleen is a common symptom of MF, often leading to pain, discomfort and a feeling of fullness or a loss of appetite. Treatment options include:
- Splenectomy (surgical removal of the spleen): This is considered if your enlarged spleen is painful and causing complications or if you have an increased need for blood transfusions. While it is generally safe, as with any surgery, splenectomy carries the potential risk of complications, including bleeding, blood clots, infection, injury to nearby organs, including the stomach, pancreas and colon.
- Radiotherapy: Radiotherapy or radiation of the spleen is an option if splenectomy is ruled out. Performed in hospital, radiotherapy helps to reduce the size of the spleen. It usually provides temporary relief that lasts for between three and six months. The way radiation is now delivered is very precise and advancements in how it is delivered have minimized side effects of the procedure. In some patients white blood cell, platelet and red blood cell counts can drop, and this is one side effect is to watch for.
- Jakavi® (ruxolitinib): is a drug option for the treatment of an enlarged spleen and/or associated symptoms in adult patients with MF. Jakavi® can cause blood-related side effects such as anemia (low levels of red blood cells), thrombocytopenia (low platelet levels in the blood) and neutropenia (low level of white blood cells). The most common other side effects in studies were bruising, dizziness, headache and fever.
Managing your anemia
Anemia is common in people with MF. Symptoms include excessive tiredness, weakness and shortness of breath. If these symptoms are causing you difficulties, your specialist may suggest a blood transfusion.
Blood transfusions are usually done in an out-patient clinic and involves the transfer of red blood cells from a compatible donor into your body. This can increase red blood cell count and quickly reduce symptoms of anemia, often within 24 hours. Blood transfusions are a relatively safe procedure and don’t usually cause serious complications, however there is an increased risk of iron overload if you receive a series of transfusions. This usually happens over a number of years, or after a total of 10-20 transfusions have been given. Feeling hot, cold, shivery or in any way unwell during or after the procedure might be a sign that you are having an adverse reaction.
Agrylin® (anagrelide) is a drug option for lowering platelet counts in people who have thrombocythemia (too many platelets in the blood). In some cases it can cause serious side effects including trouble breathing or shortness of breath, chest pain, palpitations and swelling in the feet and ankles. Most common side effects are headache, diarrhea, weakness, nausea, abdominal pain and dizziness
Bone marrow or stem cell transplant
A bone marrow or stem cell transplant offers the only curative treatment for MF. Patients are individually assessed as transplants are not commonly recommended. This is due to a high risk of life-threatening side effects, as well as a risk that the new stem cells will react against your body’s healthy tissues. Transplants are often only considered an option for fit patients with advanced disease. The first step involves very high levels of chemotherapy or radiation therapy.
The decision to begin any treatment should take place only after the risks and benefits are discussed with your treating physician.
Managing Polycythemia Vera (PV)
Management of PV is aimed at reducing the number of cells in your blood to control symptoms and reduce the risk of complications.
It is vital to monitor and control your hematocrit level as this is an important indicator of the severity of your condition. Keeping your hematocrit levels below 45% and normalizing your white blood cell and platelet counts can help to reduce the risk of major thrombosis and cardiovascular complications.
The effective management of your PV can also help alleviate some of the symptoms that these blood problems can cause. Avoiding situations that make symptoms worse can also help – for instance, hot baths can make itching worse.
Reducing the hematocrit
- Phlebotomy: If you have no symptoms when you are diagnosed but your hematocrit levels (the percentage of red blood cells in your blood) are too high, your doctor may recommend using a procedure called phlebotomy to help reduce the volume percentage of red blood cells in your blood. Phlebotomy is a simple procedure that involves the removal of some of your blood to help reduce your hematocrit level. The procedure is similar to donating blood and carries the same risks.
- Jakavi® (ruxolitinib): An option that controls the hematocrit in adult PV patients who are unable to use or do not have their hematocrit controlled with a cytoreductive agent. Jakavi® can cause blood-related side effects such as anemia (low levels of red blood cells), thrombocytopenia (low platelet levels in the blood) and neutropenia (low levels of white blood cells). The most common other side effects in studies were bruising, diarrhea, muscle spasms and dizziness.
Agrylin® (anagrelide) is a drug option for lowering platelet counts in people who have thrombocythemia (too many platelets in the blood). In some cases it can cause serious side effects including trouble breathing
or shortness of breath, chest pain, palpitations and swelling in the feet and ankles. Most common side effects are headache, diarrhea, weakness, nausea, abdominal pain and dizziness.
The decision to begin any treatment should take place only after the risks and benefits are discussed with your treating physician.
What you can expect
Your individual situation and health history, as well as the ways you respond to treatment, can all affect your prognosis. Your specialist will be able to provide you with a more accurate picture.
In general, patients with PV who do not progress to myelofibrosis (MF) or leukemia can expect to have a normal to slightly reduced life expectancy if properly monitored and treated as necessary.
In some patients the disease may remain stable or gradually progress over time. This means that you may never experience many of the symptoms and outcomes that you read about – or if you do, it may not be for many years. Many people with PV live normal lives for years without experiencing any complications.However, even if you are experiencing no symptoms, it is still important that your hematocrit level is controlled in order to reduce the risk of serious problems such as major thrombosis and cardiovascular complications.
In a minority of cases, PV can progress into myelofibrosis (MF) or acute myeloid leukemia (AML).Myelofibrosis is also an MPN and it occurs when the bone marrow is replaced by scar tissue, which affects the bone marrow’s ability to produce normal blood cells.AML is a malignant disease that develops when there are too many immature blood-forming cells in the blood and bone marrow, which in turn affects the development of your infection-fighting white blood cells.If you have any concerns, talk to your specialist.
Managing Essential Thrombocythemia (ET)
Management of ET is aimed at managing symptoms and reducing complications, to help improve quality of life.
If you have no symptoms when you are first diagnosed, a “watch and wait” approach may be recommended if your platelet counts are at an acceptable level and if you are not in any other high-risk groups for developing blood clots. Your doctor may advise you on ways to live a healthy lifestyle, including giving you help to stop smoking.
Some ET patients may require various therapies, based on the symptoms and the results of routine monitoring by a physician. Treatment choice is generally based on a variety of risk factors including age, history of thrombotic events, and drug tolerance.
Reducing the risk of blood clots
Lowering blood platelet counts in people who have thrombocythemia (too many platelets in the blood) can reduce the risk of clotting and improve symptoms, including serious complications related to blockages in blood vessels and bleeding.
Agrylin® (anagrelide) is a drug option for lowering platelet counts in people who have thrombocythemia (too many platelets in the blood). In some cases it can cause serious side effects including trouble breathing or shortness of breath, chest pain, palpitations and swelling in the feet and ankles. Most common side effects are headache, diarrhea, weakness, nausea, abdominal pain and dizziness.
Your treatment plan will depend on your own unique situation and take into account the symptoms you are experiencing as well as any lifestyle risk factors like high blood pressure and whether or not you smoke.
The decision to begin treatment should take place only after the risks and benefits are discussed with your treating physician.
What you can expect
Your individual situation and health history, as well as the ways you respond to treatment, can all affect your prognosis (the predicted outcome of the disease). Your hematologist will be able to provide you with a more accurate picture.
In general, patients with ET without severe clotting or bleeding complications have an excellent chance of living out a near-normal life span if properly monitored.
In some patients the disease may remain stable or gradually progress over time. This means that you may never experience many of the symptoms and outcomes that you read about – or if you do, it may not be for many years. Many people with ET live normal lives for years at a time without experiencing complications.
In a minority of cases, ET can progress into myelofibrosis (MF) or acute myeloid leukaemia (AML). MF is also an MPN and it occurs when the bone marrow is replaced by scar tissue, which affects the bone marrow’s ability to produce normal blood cells. AML is a malignant disease that develops when there are too many immature blood-forming cells in the blood and bone marrow, which in turn affects the development of your infection-fighting white blood cells. If you have any concerns, talk to your specialist.
Simple Lifestyle Changes
Following your doctor’s advice on how to manage your MPN, as well as adopting a healthier lifestyle can help lower your risk of complications. Here’s some advice for easy lifestyle changes that can leave you feeling better.
Your doctor will discuss ways to manage your MPN, in order for you to feel as well as you can. The best part is that you may only have to make some simple lifestyle changes to have a real impact.
Your doctor will monitor your condition but you also play a vital role – alongside your doctor – to manage your condition and your symptoms. Following your doctor’s advice on how to manage your MPN, as well as adopting a healthier lifestyle can help lower your risk of complications. The goal is to help you to cope with your symptoms and reduce their impact so you can get on with enjoying the things you want to do – whether that’s meeting up with friends, keeping up with your hobbies, going to cultural events or playing with your grandchildren.
Diet & Nutrition
A balanced diet is important for everyone, but it’s particularly crucial if you have an MPN as eating well can help lower the risk of some complications:
- You’ll cut your chances of cardiovascular disease. People with MPNs have an increased risk, but eating a healthy diet can help to reduce it.
- Too much salt is connected to high blood pressure while too much saturated fat is linked to high cholesterol, both of which can further raise your chance of having a heart attack or stroke.
- You’ll keep to a healthy weight. This is important with an MPN, as being overweight can raise your risk of having a heart attack or stroke. Conversely, some people with MPNs find it hard to eat enough due to loss of appetite and symptoms such as nausea.Eating the right way can help you maintain your weight.
SMALL CHANGES TO TRY
Sometimes, symptoms can get in the way of having a healthy diet. If you have an enlarged spleen, you may feel uncomfortably full, which can put you off eating more than a small amount, while fatigue can mean you don’t feel up to preparing nutritious food. Here are some easy ways to supercharge your diet:
- Pick heart-friendly foods. Have at least five daily servings of fruits and vegetables. Try having a fruit smoothie or glass of juice, topping your breakfast cereal with chopped apple, snacking on dried fruits, having salad with every meal, and throwing extra vegetables and beans into dishes like curries and pasta sauces.
- Go fishing. Aim to eat at least one serving of oily fish each week, such as salmon and mackerel, as these are high in omega-3 fats that have been shown to help keep your heart healthy.
- Eat regularly. You may find it easier to go for small, frequent, high-calorie meals and snacks instead of three main meals, such as yogurts, fruit smoothies and rice puddings.
- Avoid salt and fat. Try to cook meals from scratch to steer clear of the added salt found in processed foods, and flavour dishes with garlic and herbs instead. Go for low-fat versions of food, cut down on butter – instead, cook with canola or sunflower oil and dip bread into olive oil – and choose lean cuts of meat.
- Plan ahead. Getting organized can help you ensure you eat healthily even when you’re tired. Cook dishes like chicken casserole, vegetable curry or pasta sauce in bulk on days you feel well and freeze individual portions for the days you don’t. Try shopping online for foods which can be stored for a while and cooked quickly when you need them, like nutritious soups, long-life milk, fruit juice and tinned fruit, and foods which are easy to prepare, such as cereal, pasta and frozen vegetables.
- Serving size: A serving of fruit or vegetables means 80g, equivalent to four florets of broccoli, a pear, or seven or eight strawberries.
Exercise & Activity
Staying physically active is important for everyone, but exercise is particularly important for people with MPNs. Here’s why:
- It cuts your cardiovascular risk. People with MPNs are at increased risk of cardiovascular problems from clotting and staying active is a great way of boosting your heart health.
- Activity boosts your energy levels. While fatigue might mean you don’t feel much like exercising, it’s worth making an effort as getting active is one of the best ways to feel revitalized
- Staying active can help you manage stress. If you’re feeling anxious about your condition, or its effects on your family or other aspects of your life, fitting in some exercise could help you feel calmer and cope better with worry
- Exercise helps you keep to a healthy weight and cut your chances of developing a clot, as well as reducing your chances of other conditions such as diabetes and heart disease
The amount of exercise you can do depends on how your condition affects you – some people with MPNs are able to exercise as they always have done, while others can do very little. Always speak to your doctor before you start any new exercise regime, to check it’s safe, and stop if you feel dizzy or breathless, or your heart’s racing, and seek medical advice. Your doctor may be able to help you draw up an activity plan that works for you.
SOME EXERCISE TIPS
- We should all be doing 30 minutes of exercise that makes us slightly out of breath, five times a week, but that can feel a tall order if you’re tired or not feeling well. Make it easy on yourself by breaking the 30 minutes into three chunks of 10 minutes spread throughout the day. For example, start with 10 minutes of stretching, then walk in your neighbourhood and back, followed by 10 minutes of gardening or another activity later in the day.
- Getting active can be easier if you exercise with a friend – making an arrangement can motivate you to see your plan through, it can also make it more enjoyable. You can combine socializing with some activity, for example, by arranging to go for a walk in the park before heading to a café. Or you could suggest trying a new activity together, such as yoga, Zumba class, line dancing or golf – whatever appeals most to you both!
- However active you are, there are always ways to fit more activity into your day. When you have a hospital appointment, park your car at the furthest point in the car park from where you need to get to. Pick the stairs over the elevator, and when you’re waiting for a bus, walk back and forth on the sidewalk instead of just standing. It all adds up!
Sleep & Relaxation
Fatigue is one of the most disruptive symptoms of MPNs.Pacing yourself is important for getting the most from the energy you do have, as well as preventing yourself from getting more tired. Here are some tips to help you pace yourself:
- Allow lots of time to do everything. This should mean you’re less likely to try to push yourself, or need to rush. For example, if you have a hospital appointment, allow plenty of time to get there and aim to arrive much earlier than you need to. That way, you’ll avoid having to use up precious energy hurrying. If you do get there early, you can use the time to relax with a magazine.
- Say “no.” If someone suggests an activity and you’re too tired, it’s fine to explain that you’d prefer to leave it for another day. You’ll be better company when you’re rested.
- Build in breaks. Schedule breaks into everything you do, but don’t wait until you feel tired before you take one. So, if you’re doing some housework, tell yourself before you start that you’ll sit down and have a tea or coffee after 10 minutes. Breaking jobs down into small chunks with rests in between takes far less out of you.
- Rest and recuperate. Allow yourself time to lie down or nap during the day if you need to. Don’t try to keep going when you’re tired – remind yourself that you need to take extra care of yourself on bad days. For example, if you’ve spent the morning with friends or your grandchildren and feel exhausted, plan to put your feet up after lunch. Never feel guilty about doing this: remind yourself how important it is that you look after yourself.
Getting a good night’s sleep is especially vital to help you best manage fatigue and exhaustion. Sleeping well will help you cope better with fatigue when it happens and will likely also make you feel more calm.
Here are some tips for getting a good night’s sleep:
- Go to bed and get up at the same times each day so your body gets into a routine.
- Make sure your sleeping environment is comfortable: your room should be tidy, soothing, dark and quiet – not too hot or cold.
- Take time to relax before bed – try a warm bath, read or listen to the radio, and avoid caffeine, nicotine and alcohol within six hours of going to bed.
- Deal with worries by addressing your concerns as best you can during the day, such as by speaking to your doctor about medical concerns or with trusted friends for other matters.
- Manage sleep disruptors. If night sweats are disturbing your sleep, make sure you use cotton clothing and bedding, rather than synthetic fibres, which can worsen sweating. You could also try keeping the window open. Or if itchy skin is keeping you awake, try using soothing emollient creams to help. If these symptoms continue to disrupt your sleep, your doctor may be able to offer suggestions to help manage them.
For everyone, smoking further raises the risk of heart disease and strokes, as well as being linked with a range of other serious issues such as lung cancer. So, if you smoke, quitting is one of the very best things you can do for your health.
Some tips for quitting:
- Speak to your doctor, who can offer support such as nicotine replacement therapy or put you in touch with local stop-smoking groups.
- Let friends and family know you are planning to quit, and explain how important it is for your health.
- Avoid things or habits that remind you of smoking, including removing lighters and ashtrays from your home.
- As much as possible, avoid other people when they smoke.
Travel & Vacations
For most people, having an MPN doesn’t have to mean no more holidays. Whether you’re planning a weekend away or an exotic trip, follow these tips to get organized:
- Check with your doctor
Before you finalize plans, ask your doctor if it’s safe for you to go away and to your planned destination.
- Plan your trip
Once you’ve got the go-ahead from your doctor, it’s time for the fun part: planning your trip. Enjoy the distraction from your health concerns.
- Get prepared
Make sure you get travel insurance that covers you for any claims related to your MPN. Before you go, write down a number for your doctor or nurse so you can take this with you and contact them in an emergency. It’s also a good idea to pinpoint local hospitals and health centres at your destination.
- Stay safe on your journey
MPNs mean you have an increased risk of deep vein thrombosis (DVT), a potentially very serious type of blood clot that is associated with long-haul flights or any long journey where you’re sitting in one
place for long periods of time. Your doctor will tell you whether it’s safe for you to travel. If it is, you can further help to reduce the risk by:
- Wearing loose clothing and considering compression stockings
- Keeping the room under the seat in front of you free so you can stretch your legs
- Bending and stretching your legs, feet and toes while seated, every 30 minutes
- Taking occasional short walks around the cabin if you’re flying, or stopping to stretch your legs if you’re in a car; walking up and down the aisle if travelling by train
- Drinking plenty of water, particularly while flying
- Avoiding alcohol, which as well as contributing to dehydration can make you feel drowsy and less likely to move around.
- Keep it healthy
Everyone needs to be aware of potential problems when away from home, such as the dangers of food poisoning in a different country and sunburn in warmer climates. As you may become tired easily due to your MPN, pace yourself. Do a few things and enjoy them rather packing in too much. Build in relaxation time.
- Enjoy yourself!
Your doctor isn’t the only one who can help you cope with your MPN – seeking support from other people in your life can make things that much easier.
Family and friends
Whether you’re struggling with fatigue, pain or discomfort; worrying about the future, or have concerns about how your MPN is being managed, sharing your feelings and asking for support can help, making you feel less isolated. While it’s not always easy to ask someone for help, it is important, and good friends and family members will likely be pleased to help you out. Be as open as possible with them about what you are thinking and experiencing. People often are uncomfortable when they know someone has a serious illness, so take the lead to tell them how you are feeling and how they could help you.
Chatting to other people who are going through similar experiences can be invaluable, particularly if you find it hard to talk to loved ones. That’s where support groups come in. And these can play a particularly important role when you have a rare condition like an MPN, as other people with these conditions can be a great source of information about everything from what to expect from treatment to coping emotionally. See the list of Canadian support groups here.
If you’ve been struggling with low mood or anxiety for more than a few weeks, and it’s affecting your sleep and interfering with your ability to do the things you want to, it may be time to talk to a professional. It can be easier to talk to a therapist, who isn’t involved in your life, as you may feel more able to speak freely about what’s concerning you, without having to worry about the effects on them as you might with loved ones. Speak to your doctor about being referred to a counsellor or psychologist. If you’re reluctant to do so, remember that while lots of people find it difficult to talk to a doctor about their emotional health, your doctor will be used to dealing with these sorts of issues.
Talk to your children
Choosing whether or not to tell your children about your condition can be a big decision and will depend partly on their age. But bear in mind that even young children pick up on things and are very aware of problems, so it can be better to explain. Avoid saying anything too complicated to young children. Instead, try to tell them very simply that you have something wrong with your blood, so sometimes you feel tired and uncomfortable and aren’t able to play as usual. But reassure them by saying your doctors are looking after you well and you’re having treatments that help you.
Managing Your Worries
It’s natural to feel anxious about certain aspects of your life when you have a long-term condition. Here are some troubleshooting tips to tackle some possible concerns.
I feel scared about having a disease I’ve never heard of
This is a very natural reaction to a condition like an MPN. Share your concerns with others who have MPNs through online or in-person support groups. Listening to what others have to say can help you feel a lot less isolated and hearing how they’ve dealt with their worries may ease some of your concerns.
I hate to think of being a burden
A lot of people with chronic illnesses get anxious about the thought of becoming a burden to loved ones. If you feel concerned you may be putting too much strain on your friends and family, you may try to struggle on by yourself, which could affect the way you feel, so it’s important to tackle this worry. We all have different times in life where we can give help to others and need help from others. Ask for help, but also tell others you don’t want to be a burden so they are free to say no; they will likely reassure you.
I’ll be treated differently at work if people know I’m ill
It’s best to be honest with your HR department and employer about your condition, so they have the full picture and understand why you might need time off. Lots of people have different health issues and it’s likely you’re not the only one in your work place. When you talk to your manager, keep it simple: tell them about the condition you have and explain it’s being managed. You may even be able to come to a flexible arrangement, such as working from home some of the week to save your energy rather than having to do a tiring commute. You might also want to tell some of your colleagues about your situation, so everyone understands – they may be able to help take on some of your work on days you don’t feel well. However, this depends on the relationship you have with people you work with, and you don’t need to tell colleagues if you don’t feel comfortable doing so.
I’m concerned about what will happen to my finances if I can’t work in future
This is a common worry for people with chronic illnesses. There are lots of “What if…” situations in life and this is one of them for many reasons. If it bothers you, talk to a financial advisor and make a plan. Share your concerns with trusted family and friends who may also have positive ideas to help.
My relationship with my partner will change because of my condition
It’s true that having a long-term condition like an MPN can have an impact on your intimate relationship. At first, you may both be focused on coming to terms with the diagnosis, and symptoms such as discomfort and fatigue can affect your sex life and the amount of time you spend doing pleasurable things, such as going out for meals or seeing friends. It’s important for both of you to be honest about this impact and your concerns to work out solutions.
Relax with mindfulness meditation
Research has found a type of meditation called mindfulness meditation can be very effective in reducing anxiety.[ Kabat-Zinn J, Effectiveness of a meditation-based stress reduction program in the treatment of anxiety disorders, Am J Psychiatry 1992;149:936-943.] So try this mini-meditation whenever you need to unwind:
- Lie down in a comfortable position, or sit in a chair, if you prefer.
- Close your eyes and focus on your feet and toes, becoming aware of any sensations such as tightness or discomfort, and breathing slowly.
- Repeat this, moving up through each area of your body, including your pelvis, abdomen, chest, arms and face
- Then open your eyes and bring your attention back into the room. Doing this ‘body scan’ regularly should help you feel more relaxed, but if you find it difficult, you could download a guided meditation from the internet or get hold of a meditation CD.
You and Your Doctor
If you or someone you care about has an MPN, you may be dealing with it for a long time. One of your vital partners in this journey is your doctor, the MPN specialist who will follow your progress and who will be responsible for your treatment. It’s important that you have a good and open relationship with your doctor and that you do everything you can to plan for your appointments. Below you will find information to help guide that process.
Interacting with Your Doctor
When you have an illness like an MPN, that is rare and that you will have the rest of your life, a good relationship with your doctor is particularly vital.
Some tips for productive appointments
Here are some tips for having constructive interactions with your doctors.
- Track your symptoms
As your symptoms might change and develop over time, it’s a good idea to monitor them and report anything you notice to your doctor. This gives your healthcare team the best chance of making sure you have the right management plan, as and when you need it.
Not sure whether something’s a symptom or not? Write it down and let your doctor know anyway. They will be pleased you are proactive and vigilant, as it helps them do their job well.
It’s also important to track symptoms that don’t bother you, or that you’ve grown used to. Even if you can put up with them, they may still give your doctor important clues about your health.
- Stay calm
A doctor’s consulting room can be intimidating, especially if you’re already worried about your health. You may feel more confident if you take a trusted friend or family member with you. And calm yourself in the waiting room by taking slow, deep breaths, so you don’t feel nervous when you go in.
- Be prepared
Ever had an experience where you’ve had loads you wanted to ask your doctor, only to find your mind has gone blank in the appointment? Get around this by making a list of all the things you want to ask in advance. Keep a notebook to write down things when you think of them or keep notes on your mobile phone.
Before an appointment, review your notes and prioritize your comments or questions. When you get to your appointment, say you have a few questions and don’t be shy about using your notes. If you have a lot, you might not get through them all, so prioritize your questions.
- Do your research
Some people like to arm themselves with information so they have a good understanding of their condition and potential management options. If you’d like to, you could research your MPN online. This may also help you think of issues to bring up in your next appointment. Ask your doctor to recommend some good websites or give you leaflets you can browse.
While the internet can be a valuable source of facts, there’s a lot of incorrect information out there and you may read some things that are just people’s opinions, and not necessarily accurate. So stick to reputable websites – for example, those run by reputable hospitals, recognized charities or government bodies – and if you do come across anything that makes you feel concerned, discuss it with your doctor.
- Get clarity
MPNs are complex conditions and doctors sometimes use scientific words that may be complicated to understand. Don’t be shy about asking for an explanation if you don’t understand a term or what your doctor said or meant. Your doctor won’t want you to go away feeling confused or worried, so it’s always better to ask for clarification.
- Be honest
If you’re feeling low, it’s important you say so to your doctor. You might be reluctant to admit it, but it’s the only way the doctor can help you, and you will likely feel better by discussing it.
Be honest if you haven’t been following their treatment or management advice; that will help them understand why your symptoms haven’t improved.
If you are having emotional problems, your doctor may have dealt with these issues many times before. Your mood can impact how you feel and how you manage your condition, so open up to your doctor.
Concerns about your treatment plan
If you have any doubts about your diagnosis or how your doctor has suggested managing your condition, you need to discuss this with them.
For example, perhaps your doctor has suggested a “watch and wait” approach for now, and you feel worried about this method. It’s important to let your doctor know how you feel. The chances are your doctor will welcome the opportunity to explain their decision, and will be able to reassure you.
- “I’ve been thinking about the approach we discussed and I feel a bit worried. Would you be able to explain it more to me?”
- “I understand your reasons for saying this, but I need some reassurance this is the right way to go. Can we talk it over?”
Getting a second opinion
If you feel concerned about your doctor’s approach to your MPN, you could ask for a second opinion. While this can feel awkward, it’s common for people with rare conditions like yours to ask for second opinions.
When doctors may not have seen the condition many times, seeking the input of another can mean you end up with a pool of knowledge, which can reassure you you’re getting the best advice and care. You might end up seeing a doctor who has more experience with MPNs and knows more about recent developments than your first doctor. On the down side, you may end up having further tests and you may be given different suggestions and even a different diagnosis, which could be confusing.
If you do decide to seek a second opinion, let your doctor know so both doctors have a full picture of your case.
- “As my condition is so rare, I’d like to ask another doctor for their opinion as well. Is there someone you’d recommend?”
- “I’d like to see what another doctor says about my condition, just to cover all my bases. Would you be able to help me find someone?”