I was recently diagnosed with CNS DLBCL and am currently being treated at Mayo for this.

It is so encouraging to read about other’s CNS remission after completing treatment. Lori I also very much appreciated reading your BMT story and your encouraging comments in the site for so many people going thru the transplant process as this is part of my prescribed treatment. I am 62 and in good health so your story gives me hope for a successful transplant.

After reading the recent posts about CNS lymphoma, I decided to share my story since CNS lymphoma is not a common diagnosis. Apologies for the length of this but I wanted to include as much detail in case it helps someone else in some way.

I also want to send my best wishes to others dealing with CNS lymphoma and thank those who have shared their story In this site. Sometimes even reading a small part of someone else’s journey can be so encouraging to so many.

My Illness/Symptoms:
I became sick in April 2023 with uncontrollable coughing, daily fevers, night sweats, severe chills, extreme fatigue, slight dizziness, and nausea/loss of appetite. I was tested by my PCP for Covid and many other respiratory illnesses as well as other infections with no diagnosis found.

This illness continued into June and I was concerned that with the daily fevers I would start experiencing cluster headaches which for me can be triggered by fever. My PCP (a doctor I like and respect) let me start 10mg of prednisone daily which is what I use for cluster headache cycles. I noticed within a week that all of the symptoms had resolved and I was able to start working and doing other activities again .

However in early July, I woke up with a sore spot on my scalp and my hair began falling out by the handful. My PCP thought it might be related to the daily prednisone and had already been encouraging me to taper off since this is not a good medicine to be on long term if it is not needed (PCP was not sure that the prednisone was the cause for my improvement since no diagnosis).

I started very slowly tapering off the prednisone over the next months but saw no improvement in the hair loss or sore spot on my scalp. I had a couple of times where I increased the dosage again to alleviate headaches but I eventually finished the prednisone taper in mid October.

Without the daily prednisone, I started noticing increased nausea, fatigue, and some mild dizziness thru October/November but not as severe or disabling as in May/June. I reached out to my PCP the week before Thanksgiving as the symptoms started increasing in intensity. My regular PCP was on holiday so another PCP diagnosed me with an ear infection and prescribed medications for dizziness and the ear infection.

I collapsed the next week on Thanksgiving Day with severe dizziness, nausea and vomiting unable to lift my head off of the ground. My husband called 911 and I was taken to the Mayo emergency department. A CT scan revealed multiple lesions in my brain and I was admitted to Mayo hospital.

Hospitalization after Emergency Care, Diagnosis and Treatment:
After many tests (most of this time I don’t remember), I was diagnosed with DLBCL lymphoma with CNS involvement as I had cancerous lesions in my brain and elsewhere in my body. I received a week of chemotherapy in the hospital with multiple cancer medications (Matrix treatment) and was released 15 days after admission. I went home using a walker because the brain lesions affected my equilibrium and I was prone to occasional loss of balance and falling.

I have since completed 8 rounds of chemotherapy, 4 in hospital Matrix treatments alternated with 4 outpatient RCHOP treatments. All of the lesions in my brain and other areas of my body showed complete resolution on the mid treatment and post chemotherapy brain MRI and PET scans so a great result.

My current status of waiting for a BMT:
I am in a holding pattern waiting for my bone marrow to hopefully recover enough for the autologous stem cell transplant. Both my hematology oncologist and the BMT doctor indicated the high rate of recurrence with the CNS lymphoma and how important the transplant is to complete recovery. They did a great job in explaining this to me and my husband who were initially reluctant to proceed with this very intensive process. So appreciative of my treatment by the great medical teams at Mayo.

My first stem cell collection attempt in June failed as there were not enough stem cells for collection. The BMT doctor had indicated this was a possibility due to low blood counts but wanted to try. It was agreed this was not unexpected with the intensive chemotherapy I had received. I have been given more time to allow continued bone marrow recovery in hopes for a successful stem cell collection.

I will find out later this week if my counts have improved enough to try for collection again so I can hopefully proceed with autologous transplant. I have not had labs since mid August and these did show some improvement so I am hopeful for this week’s counts. If my bone marrow suppression has not improved, we will discuss the possibility of moving forward with the donor transplant process. I know that as intimidating and risky as the donor transplant process would be, it would be far worse if the CNS lymphoma recurred and caused more severe impairment to my quality of life. But still not an easy choice to make.

Many thanks for letting me share my journey so far. Hopefully I will be able to post a happy ending to this story in the future. So much gratitude to the amazing Mayo doctors and their teams for their compassionate care during this challenging time.