Hi @ingridcork11 -

I am so sorry to hear of your CNS Lymphoma diagnosis after your treatment for Mantle Cell Lymphoma treatment and remission. I can understand your overwhelm and fear with this new diagnosis, for you and your children. My heart goes out to you - I understand too well how frightening it can be to have uncontrolled neurological symptoms and then the diagnosis of brain tumors.

I am sharing my experience with CNS Lymphoma below to hopefully give you some hope that a good outcome is possible.

My Story:
I collapsed at home on Thanksgiving Day 2023 unable to lift my head off of the floor. I was taken by ambulance to the hospital and diagnosed with Diffuse Large B-cell Lymphoma (DLBCL) after many tests. By the time of diagnosis, I had multiple tumors in my body (stomach, lungs, brain). Because of the multiple brain tumors, mine was also classified as CNS lymphoma.

My Treatment:
I received 4 rounds of R-Chop therapy and 4 Matrix treatments at Mayo Clinic to target the multiple tumors. The final phase of my treatment was to include an autologous bone marrow transplant but I was unable to complete the transplant after chemotherapy due to insufficient stem cells.

My Current Remission:
I had good results with the treatments and am now in month 16 of post treatment remission. I get scans and labs every 3 months to confirm continued remission.

Try to take good care of yourself and allow yourself some peace if possible during this time. Please reach out if you need more information or support as you proceed with your treatment. There are a great group of mentors and members here that can help you get thru this.

Wishing you all the best with your treatments. We are here supporting you.