Anyone else diagnosed with ALCL ALK negative? Starting at Mayo Clinic

Connecting with others who share the same diagnosis can provide valuable support and insights during this journey. Mayo Clinic Jacksonville has an excellent reputation for treating T-cell lymphomas, and many community members have found comfort in sharing their experiences with similar diagnoses. Hopefully other members with ALCL ALK negative will see your post and connect with you to share their experiences and offer encouragement.

Hi Michael. Im so very sorry to hear of your recent diagnosis. Mayo Clinic is excellent. My name is Peggy and I’m currently in remission from ALCL, though mine is ALK positive. I was diagnosed at age 65 with stage 4 in late summer of 2023. I go to the University of Chicago. Treatment started with radiation to address a cluster of lymph nodes in my lower back that had grown so large, they were causing compression fractures of my vertebrae. I had eight sessions (every weekday over two weeks). It helped immensely with the pain. Then I started chemo. My sessions were every 21 days and I had six sessions. I had BV-CHP. Although there were many bumps along the road (opportunistic infections, blood clot), the treatment was a success and worked exactly as intended. It wasn’t easy but you take it one day at a time or one hour at a time, if need be. Hopefully, you have help and support. Reach out and let friends, family and neighbors know if you need help. People are amazing and very happy to help in any way. The medical professionals are awesome too. Ill try to send more later but please know you are in my thoughts and prayers.