Day +550 post transplant

Today we're celebrating 550 days since transplant! Here's an update about how my mom's been doing over the past year.

My parents were lucky enough to enjoy a calm summer and fall at home mid 2023. My mom was thrilled to spend time in her garden and soaked up every second outside! Her hair grew back and she loves keeping it in a short pixie cut. She also took on planning a house maintenance project and going through basement clutter. Her most recent PET scan 10 days ago (18 mo post transplant)  showed no evidence of disease, meaning she's currently cancer free! We're happy to say that my mom's sister's cells are still keeping the lymphoma at bay!

Although the transplant has gone surprisingly well, we found out that my mom has new symptoms are due to graft vs. host disease (GVHD). This means the new immune system is so strong that on top of keeping her cancer away, it's accidentally attacking her healthy tissue too. During this past Thanksgiving, she broke out in hives that we were hoping was a temporary allergic reaction to a treatment change but seemed to start an immune flair up around Christmas. The result was a trip to the ER after her face and lips suddenly started to swell and we wanted to rule out a full anaphylactic emergency. Luckily, the swelling resolved on its own after a few hours but the anxiety during that time was sky high. 

Ever since Thanksgiving, she's had new sores, itching, and sensitivities all over her body especially feet, hands, and throat. It was to the point that my mom was on high doses of every over the counter allergy medication and taking oatmeal baths twice a day to decrease itching. The doctors at Mayo weren't quite sure what to make of it at first but after two months of trial and error they finally put her on a longer regimen of high dose steroids to help her recover.

We're grateful that it seems like the steroids are giving her relief from the chronic GVHD. Unfortunately, the combo of steroids and GVHD has been brutal for my mom. This has resulted in many of the symptoms she first experienced after transplant returning. Some daily concerns are extreme fatigue, muscle weakness, dry throat and skin, taste changes, mood swings, and brain fog. As she has shared, since the medications are strong, it feels like she's taking medications to counter the effects of other medications. My mom's never had issues swallowing pills before but with her dry throat it can take her over two hours to get down 20 pills three times a day. Not her favorite. 

We're all hoping that with time, the GVHD will continue to resolve and the steroid dosage will decrease. The providers at Mayo haven't given us an exact timeline as GVHD seems to vary between patients but we're all hoping my mom won't have to be on steroids much longer. Until then, my parents will likely continue going to Mayo every week/every other week for follow-ups and labs. We're all looking forward to spring and the end of GVHD so my mom can go outside and garden! 

Thank you for keeping us in your thoughts and wishing you and your loved ones a happy, healthy Easter!

Take care, big hugs!

-Michelle