Beginning or changing treatment can be an emotional experience.
These tips can help you when you are talking with your haematologist about starting a medication or changing your treatment plan.
If you are just starting treatment for the first time, you may feel concerns about:
These are all valid and reasonable concerns.
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 – 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?
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.
Learn as much as you can about your particular MPD. Read about the treatments that your haematologist has recommended. You can 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 and bring information to your haematologist. 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.
Be aware of any risks you are assuming and consider this when making your decision. 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 MPDs such as a pulmonary embolism, a stroke, heart attack or clots or hemorrhages elsewhere in the body, taking medication is usually imperative to reduce the chance of your suffering further and possibly life-threatening clots. 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 MPDs. Most of all it’s important to be informed when making decisions together with your care team.
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.
Some people who have a mild MPD 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 and anagrelide. This path can be appropriate for certain people with MPDs – 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 mild MPDs to decide against cytoreductive therapy in order to avoid the long-term risks posed by these drugs.
It can often 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 MPD care and is open to hearing your perspective.
If you decide to stop taking medication for any other reason, be sure to inform your haematologist know 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.