Hi Lori @loribmt and Kat @katgob -

Just wanted to give you an update on my treatment plan after the appointment with my hematologist on Friday. I am posting in the BMT group because this might be helpful to other lymphoma patients being evaluated for BMT. I have learned that unlike leukemia, the BMT is not a certainty with lymphoma.

My doctor is now advising no further treatment at this time so I will not be pursuing a transplant or any other consolidation treatment for now. He feels that my remission is now far enough along and doesn’t want to further affect my bone marrow recovery with additional treatment. I am in month 7 of post-treatment remission with total remission time at 10 months from the mid-treatment scans. It is hard to believe that much time has passed….

So the delays in the BMT treatment and the extended remission time have now changed the needed treatment. I feel very thankful that this was the outcome with the delays and that the delay did not result in a relapse to date. He did review future treatment options if there is a relapse - treatment would be based on where the relapse occurs (CNS or other areas or both since I had systemic involvement, not just CNS).

I have also corresponded with @mepowers who received her diagnosis of Large B Cell CNS lymphoma and treatment plan from Mayo in 2016. After chemotherapy, she was evaluated by Mayo for stem cell transplant but not given this treatment either (she thinks due to poor kidney recovery). She hit her 5 year remission milestone in 2021 and is still in remission today with no further treatment.
Her recovery experience gives me hope that I may also maintain a lasting remission without the stem cell transplant. She is a very kind and caring person and a great resource for anyone facing CNS lymphoma. She has previously shared her experiences and support in MCC with others facing CNS lymphoma and is why I reached out to her. So glad that I did!

I may need other treatment in the future if my bone marrow doesn’t continue to improve so not sure if BMT is still lurking in the future. WBC is very low but hemoglobin and platelets have returned to just within the normal range so good news there. Hopefully my WBC will slowly improve.

So while I won’t be receiving a BMT at this time, I will continue to follow this group and send good wishes and hugs to all who are receiving this incredible treatment. You are all amazing warriors!

Wishing everyone a good Thanksgiving in whatever way you can celebrate. My husband and I will most definitely have an extra special day this year given what we were doing last Thanksgiving day 😊.
Best wishes to everyone for good healing and health. 🙏