Thank you Lori for reading my story and for your encouraging response - so appreciated! I will say again what a great job you do in your communication with everyone going thru the BMT process and other challenges.

We had a good meeting with the doctor but unfortunately the opinion is my bone marrow will not support an autologous transplant. It has been 4 months since I completed chemotherapy and it has recovered somewhat, but it is not enough for a successful stem cell collection. The hemoglobin numbers and platelets are in the low end of normal range (improved) but white counts are still very low and haven’t improved.

Apparently the bone marrow suppression can happen after the intensive chemotherapy treatments for the CNS lymphoma. I had multiple platelet transfusions after each chemo round as well as a few blood transfusions. The opinion is that my bone marrow will continue to improve but it may take much longer (a year was mentioned). The concern is that there is a high risk (50%) that the CNS lymphoma could recur before I could be ready for an autologous transplant. Doctors have also stated that it would be much harder to treat the recurrence of the CNS lymphoma.

As a result of all of this, they have started the process for a donor search for the transplant as one option. However, the doctor is suggesting that given the uncertainty around the donor transplant timeline and concerns for disease relapse, and GVHD risks that I consider CAR-T therapy. We also asked about cord blood transplant since the timeline and donor scheduling uncertainty is not a factor. He does not feel cord blood is a good option due slow uncertain engraftment and potential long term immunity issues that can occur. Disappointing to hear this but we trust his expertise on this. At this point, he is much more in favor of CAR-T therapy as a solution.

If the donor transplant is a real option with a successful match and commitment for collection, the nurse reviewing the donor transplant process mentioned the possibility of maintenance chemotherapy during this wait time. She is following up with the doctor since he did not discuss this. I would be open to this since I am 4 months out from my last RCHOP chemotherapy and 6 months out from the last Matrix chemotherapy. However, last PET and brain MRI 1 month ago were clear so this may be why maintenance chemotherapy has not been suggested at this point.

With the CAR-T option, this therapy is usually only given for disease relapse after completion of chemotherapy and BMT so insurance may not allow this. If insurance will cover CAR-T therapy without active disease and no BMT, this is what the doctor prefers as best treatment. At this point, we have a lot to consider and more questions about the CAR-T if that is approved by insurance since yesterday was the first time this option was presented.

My concerns are that CAR-T is so new and there is a lot of information and studies of neurological impacts and effectiveness in treating CNS lymphoma. I am not qualified to interpret all of the information out there, but it’s enough to give pause. However if you read about the Matrix and RCHOP chemotherapy treatments and potential side effects and toxicities, there would be unsettling information as well. I was too sick at diagnosis to do that research. And I deliberately did not read any of this later during treatment because this would not help me heal, only add unnecessary stress. Since I had multiple lesions in my brain and other body areas and would not have survived, it was not a hard decision to take the chemotherapy treatments and accept the potential risks. Since I am in remission and feeling good, it is not as easy to commit.

I realize that all of the next options facing me are difficult.
1 - Do nothing since I am in remission and risk a recurrence of the CNS lymphoma and the unknown impacts to my CNS and quality of life.
2 - Wait and hope for a 10 out of 10 donor match and move forward with a donor BMT and all of the challenges that come with this approach. Possibly receiving maintenance chemotherapy during this wait time if the doctors think my bone marrow can support this treatment.
3 - Move forward with the CAR-T therapy if insurance approves and risk the potential neurotoxicity issues and associated treatments. This is where we need more details of risks/treatments to determine quality of life issues. Lots of questions on how these cells work, lifespan of these cells (potential for additional CAR-T treatment), symptoms if lymphoma recurs and these cells are working to kill the cancer cells, and whatever else I can think of if this becomes a valid option. I have not read much at this point so some of my questions may be answered by more research.

I do want to have the best chance of long term remission and a good quality of life with good mental cognition. So I want to understand as much as is possible how my quality of life will be affected with each choice. So a lot to consider and was definitely overwhelmed after yesterday with the reality of what is here. But I am so very thankful that I am in remission at this time, feeling good, and able to process all of this. Appreciating each good day.

Thank you again for allowing me to share my ongoing journey and for all of the support (spoken and unspoken). I know as I read daily posts on Connect that I send unspoken thoughts/prayers and best wishes to so many who are experiencing these challenges. Lori, many thanks again for reaching out. I will continue to share my journey as it continues and hopefully post some more good progress.