Discussing Your Treatment Plan

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Hi. I'm Ron. I'm a polycythemia patient. I was diagnosed at the age of 38 and have been living with the disease for over 25 years. As you go along with your treatment as a polycythemia patient, you may have some questions regarding your treatment or questions about new treatments that are coming on the market to help manage your disease. I'm here to give you some tips on how to speak to your doctor regarding that. [MUSIC PLAYING]

As you go with your doctor to talk about your treatment plan, again, bring with you your history of your disease, the treatment plans you've been on, the positive and negative things of those particular treatments that you have, and if you have new information that you want to speak with your doctor about to bring that with you as well to this appointment. It's always good to bring with you a caregiver or somebody that knows your symptoms and has seen you over a period of time to give another point of view to your doctor so he has or she has the complete picture.

When you're speaking with your hematologist and oncologist regarding your polycythemia, it's always good to give the full spectrum of things that you're experiencing, the symptoms that you have, the impacts on your lifestyle that you have to see if it's appropriate to change treatments at this particular time. They also may be related to side effects of the current treatment you're on and if they become life impacting, it's time to have that discussion on maybe trying something.

As you establish a relationship with your health-care provider, share with them your personal things and things that you like to do everything and discuss with them if this treatment option is going to impact that or not so that you can be prepared to make any changes or positive changes with those treatment options.

As a polycythemia patient, you are in the rare disease category. And it's best for you to try to be as educated as you possibly can on your disease and the available treatment options. There are some very exciting news out there, with a lot of new things that are coming on the market that may be available to you if your current treatment options are not controlling your disease well.

As a polycythemia patient, you are probably one of the most important part of the health-care team to get you better. You know yourself. You know your body you know your symptoms as well. So be confident in that as you speak to your health-care provider on what's happening with you. As a polycythemia patient-- and you may live with this disease for a number of years because it is a chronic disease to that-- you will notice maybe some changes over time. As you sit back and reflect on those changes, those are the things that you should bring to your doctor's attention. So if there's any changes in your treatment that need to be made at this particular point in your course of treatment, that's why you bring it up.

During your appointment with your hematologist and there is some information that your doctor is relaying to you that you may have a disagreement with, have a frank and candid conversation of what is the goal of the recommendation that he or she is making to you so that you have an understanding. And if you disagree with that, be sure to share that with the doctor so that they can take that into consideration as well.

It is critical that you create a health-care team around you with your hematologist, oncologist being the primary member that you will work with. But there's supplemental peoples around, but you are working together to have the best outcome for you. In speaking with your hematologist, again, if you come across terms or ideas or treatment options that you don't understand, please ask the questions to the doctor to explain further.

As a patient, again, it can be very overwhelming with the treatment options, the lifestyle impacts that you have. And it can take a toll on your self, your mental state, and your family and caregivers next to you. Make sure that you speak with your doctor regarding that information as well. Do not ignore that.

During your visit with your doctor, again, I highly recommend that you write down the information, that you do get a postvisit summary with everything that is discussed with you, and also, if you have a caretaker with you, for them to ask any questions as well.

At the end of your visit, make sure that you understand everything that was discussed and what the future is going to look like, whether it's immediate or long-term, so that you have and are armed with all that information going forward. Don't be surprised during the course of your treatment as a polycythemia patient that your treatment options will change and may need to be modified. That's all part of the process.