Hi, everyone. I (23M) was recently diagnosed with CML last week. I went to the hospital for papilledema (swelling in the optic nerves) and was given my diagnosis last Friday. For the most part, I’ve been ok. What I’m recovering from right now is the spinal tap they did to address the papilledema a few days ago. In addition to that I’ve had follow ups, phone calls, numerous labs, and a multitude of other things happen to me in this past week. It’s crazy to me to think that this time last week I was in a classroom teaching and my life would drastically change overnight.
Mentally and emotionally I’ve been ok. It helped that my oncologist told me I wouldn’t have to make drastic lifestyle changes or have any aggressive or invasive treatments. What nobody prepared me for is the constant poking a prodding. Not just talking about labs, but the barrages of checks ins from friends and family. Not that I’m not grateful for them. Every time I find myself getting upset, I chide myself and remind myself how blessed I am to have the support system I have. But sometimes it gets overwhelming if I’m being honest. I guess I foolishly expected life to not change as much but how could it not when I received a diagnosis like this? Also, part of me feels if I didn’t have the spinal tap, I’d feel a lot better. I know it was necessary, but recovery has been the worst. All I’ve wanted to do these last few days is sleep and be left alone.
Anyways, I have to start desatinib soon and wanted to know what life on that medication would look like. Like, what are some side effects you all have experienced and what did your mental and emotional states look like while batting CML? What are some things I should keep in mind? Anything helps!
TL;DR: I (23M) was recently diagnosed. What are some things I should be aware of or keep in mind as I start this journey of battling CML?