How is it that 12 years ago can feel like just yesterday. Although this is quite the milestone to celebrate, it hasn’t been without its challenges. As I mentioned in my last post, I was taken off Jakavi for my cGVHD. I’ve since started back on Jakavi while continuing to take Rezurock and can’t forget my favourite, prednisone. I was reluctant to start prednisone again but the flare was so bad I had no other choice. Thankfully my doctor prescribed me a much lower dose than I was expecting at just 25mg/day. This dose still comes with side effects and the dreaded tapering process.
Despite taking 3 medications to control my cGVHD, it continues to worsen. Just when I think it can’t get any worse, it does. So here I am, starting another trial medication. Axatilimab is an infusion I’ve been receiving every 2 weeks. The infusion itself takes about 45 minutes, but it never seems to be that quick. The Axatilimab infusion comes with its own side effects such as fatigue and tiredness. My hemoglobin and neutrophil count have decreased. I have to receive the infusion at my transplant hospital which is 40 minutes from where I live. In order to take the least amount of time off work I’m scheduled every other Sunday. At this point it’s a little too early to tell if the infusions are helping. My hematologist wants to see me in person at least once a month, so as you can imagine, I’m growing quite tired of this schedule.
The past year has had it’s positive moments as well. My boyfriend of 3 years and I got engaged in June. We have picked our venue and plan to tie the knot next fall 2027. Both of us are not keen on being the center of attention so we’ve decided to keep it small with just 56 of our closest friends and family. As excited as I am, I’m not necessarily looking forward to finding a dress. I’m so self conscious of my skin. I just hope I can find something that makes me feel comfortable. I’m hoping the biweekly infusions keep my GVHD at bay until then so I won’t have to take a high dose of prednisone.
