Has anyone undergone ECP treatment with Uvadex for CTCL? Share your experience!
I've recently been diagnosed with Cutaneous T-cell Lymphoma (CTCL) and my dermatologist has recommended ECP (Extracorporeal Photopheresis) treatment using Uvadex. I was hoping to hear from some people who have undergone this treatment to share your experiences. I'm curious how bad the side effects are and how effective the treatment has been. The doctor mentioned some serious side effects: sunburn, changes in skin moles, depression, new skin growths, severe dizziness, swelling, and vision changes. All of this is quite scary! I'm also wondering about the other potential side effects. Have any of you experienced skin irritation, itching, redness, upset stomach, feeling jittery, or trouble sleeping? I'd love to hear any tips or advice for managing these potential side effects. I'm trying to prepare as best as I can for this new journey!
I had ECP with Uvadex for GvHD after a bone marrow transplant. The procedure itself is intense, but the side effects were manageable. I had some itching and redness, but my doctors monitored me closely. It's a tough road, but if it helps, it's worth it.
I had a pretty mild experience with Uvadex. A few hives, but nothing too bad. It was a bit unsettling, but I didn't have the more serious side effects like changes in moles or severe dizziness. Fingers crossed for you!
Just a heads up, some of the side effects can be managed with lifestyle changes, so talk to your doctor about diet and exercise routines. It might make a big difference.
Just wanted to chime in and say that if you are experiencing any sudden vision changes. Seek medical help immediately. It can be scary, but it's best to be safe.