Balancing myeloproliferative neoplasm (MPN) treatment adherence along with symptoms can sometimes be a challenge. Watch was myelofibrosis patient Julia Olff explains how symptoms and executive functioning can impact continuation of MPN treatment routines.
I think doctors and nurses underestimate how well patients can adhere to treatment and how that relates to one’s mental health. There are times where I have not felt as well and had a kind of foggy brain and had episodes of forgetting to take my twice-a-day treatment, so that’s sort of one type of treatment adherence that I think is just affected by your overall mental well-being, and then there’s the bigger part of it that is about seeing the full picture and all of the things that you have to do to continue with treatment so if it’s pills, for example, here, there’s a lot that one needs to do that I think we take for granted or assume everyone can do that, from remembering to refill your medications to going to actually physically go get them if you have to do that. Some are mail order, in the case of myelofibrosis. Knowing when to take them, figuring out when it may be better based on when they’re prescribed to take…when it may be better for you like with food. I know when I was taking ruxolitinib (Jakafi) that I would take it just as I was going to bed, but I would feel unwell for a while I was laying in bed, and I think it relates to your mental well-being because, over time, treatment also can affect…
Treatment has side…can have side effects, and those side effects can also influence how you’re feeling emotionally, how good you’re feeling as a person, they can affect your energy levels, so the illness can affect…fatigue is one of the number one when problems that people with myelofibrosis face, and then you add treatment to it, and there’s an impact on how well you feel overall, so I think treatment adherence is very much tied to your mental well-being, your outlook, and your ability also to…it’s called executive functioning, how well you can kind of organize your day and your life and they’re all intertwined, I believe.