The journey continues....learning to navigate chronic graft vs. host disease. Basically my donor cells are doing their job a little too well and fighting everything in sight. It’s good for cancer cells that might pop up but not so great for vital organs. I’ve been on a high dose steroid for the past 2 months which gave me some relief but it’s not a long term plan if GVHD decides to continue its chronic path.
My eyes and mouth seem to be most bothersome for me right now. I had my ophthalmology appointment today where they noticed a significant change in the GVHD worsening. We are adding Lotemax eye drops along with the Restasis drops I’ve been using for the last 8 weeks. The concern is potential glaucoma, cataracts, and loosing the ability to close my eye lids. Discouraging but we are hopeful the steroid drops will help clear things up. I’ll also need to continue on high dose Prednisone. I was hoping to be done with Prednisone but no such luck.
I met with my BMT doctor who agreed with the ophthalmologist and concern for my eyes. She wants me to eventually taper off the prednisone as well but to do so we need to get control on the GVHD before it’s too late. I’ll continue my Tacrolimus and adding Jakafi which is a chemotherapy to the mix. I’ll likely stay on the Jakafi long term if it’s tolerable and taper off the prednisone once my eyes improve. The hope is to get the GVHD under control and then I can start removing some meds from my list. I’m ready for that!
Thankfully I’ve been able to gain some weight. I’m up to 98lbs. Almost triple digits baby! Which is great compared to 8 weeks ago when I was 87lbs. That was concerning! I’ve regained my strength by walking 3-5 miles everyday and I’ve been talking daily online Barre and Yoga classes. My mind and body have never felt better.
We will be back to Stanford in 2 weeks for Ophthalmology, Gynecology, BMT, and Oncology. I’m beyond thankful for the amazing team of doctors on my side. I was telling Tad how focused we were on getting to transplant and the silver lining of my MS going away that GVHD was never anything that really concerned us. It’s a whole new world of health setbacks we are learning about.
Despite the issues I’m dealing with I can’t help but feel gratitude. I’m alive and cancer free! Anything that comes my way I’ll tackle that too. I’m talking to you GVHD!
May you all remain healthy and safe during these uncharted times.
Much love,
Steph
