Beginning or changing treatment can be an emotional experience. These tips can help you when you are talking with your haematologist and their team about starting a medication or changing your treatment plan.

Consider your concerns

If you are just starting treatment for the first time, you may feel concerns about:

• What is happening to your body
• Why you need treatment now
• What the potential side effects may be
• What the long-term risks of drug therapy may be
• Are there other options

These are all valid and reasonable concerns.

Understand your emotions

You may feel frustrated or even angry if your medical care team does not seem to listen to your concerns or have adequate ways to address them. You may wonder about treatment costs and benefits of treatment options or you may ask yourself if treatment is going to make you feel worse than the illness itself, and if so, is it worth taking the medication?

Consider barriers and challenges

If the medication has to be administered via injection, you may find needles difficult to cope with.  This creates extra challenges as you work to find an effective treatment.

Do your homework

Learn as much as you can about your particular MPN.  Read about the treatments that your haematologist has recommended. This will help you to learn about the pros and cons of drugs, possible alternatives, and ways to mitigate any side effects you might experience. You may need to become the expert patient and bring information to your haematologist or medical team. You will be better prepared to discuss your options with your haematologist if you approach your decision having done your research. Make notes and print out research papers for your discussion.

Understand your risks

Be aware of any risks you are potentially undertaking, and consider this when making your decision. Do consider that there are risks associated with not taking medications, just as there are risks associated with taking medications. Your haematologist will work with you to balance these risks when considering treatment options. If you have suffered serious complications associated with MPNs, such as a pulmonary embolism, a stroke, heart attack or clots or haemorrhage elsewhere in the body, taking medication is usually imperative to reduce the chance of your suffering further and possibly life-threatening clots. Please note, usually you will need to take medication to control your MPN as well as an anticoagulant or antiplatelet agent. It’s also essential to understand your overall health as well. If you have diabetes, a heart condition, are overweight or suffer from high cholesterol, you may face increased risks from your MPN.  Most of all it’s important to be informed when making decisions together with your care team.

Take care of your overall health

Whichever treatment your haematologist recommends, it is important to take excellent care of yourself. Eat a healthy and highly nutritious diet. Maintain a healthy weight and be sure to exercise gently and regularly. Avoid alcohol and smoking. Drink plenty of water to stay hydrated.

Consider your personal situation

Some people who have a low risk MPN and are generally healthy have the option to take aspirin therapy, in some cases together with phlebotomy, rather than taking cytoreductive drugs such as hydroxycarbamide, interfeon or anagrelide. This path can be appropriate for certain people with MPNs but do check with your haematologist for advice specific to your situation. Haematologists can differ as to when they recommend cytoreductive therapy.  Some haematologists believe that on balance it is safer for people in good health with low risk MPNs to decide against cytoreductive therapy in order to avoid the long-term risks posed by these drugs.

Get a second opinion

It can sometimes be very helpful to get a second opinion about your treatment, especially if you are frustrated with treatment options, side effects, fatigue and other problems that can be difficult to resolve.  You may benefit by talking with a haematologist who has an expertise in MPN care and is open to hearing your perspective or even just see a different person in your local team.

Inform your haematologist and care team

If you decide to stop taking MPN medication for any reason, be sure your haematologist knows about your decision, even if he or she does not agree with your choice.  We recommend that whatever decision you make, that you inform your doctor and care team before you stop taking medication.

Please note that nothing contained in this website is intended to constitute professional advice for medical diagnosis or treatment. You should always seek the advice of your physician or other qualified health provider prior to starting any new treatment or consult them on any questions you may have regarding a medical condition.