Anyone diagnosed with Primary Central Nervous System (CNS) Lymphoma?

Yes. He no longer is seeing his oncologist.

Right. And because there was nothing remarkable (that's a good thing), you didn't have to have an appointment with the oncologist. Did I get that right?

How is your husband doing now?

His last scheduled MRI was January of this year.

CarrieAnne, welcome. Allow me to introduce you to @mepowers who has been in remission since 2016 and others in this forum central nervous system lymphoma.

CarrieAnne, does your husband normally return for a yearly follow-up but didn't this year?

My husband was diagnosed in 2014, at the age of 60, following symptoms which included excessive tiredness, memory lapses and unsteadiness. His treatment began in January with in hospital chemo that lasted 4 months followed by a Phase II chemo regiment. He was releases the end of May and returned the following January with a severe infection from an infection in his port that radiated down into his right shoulder and arm. Following that, he received multiple transfusions and follow up MRI's for the next five years. We have not been back to his onocologist since early 2020. I don't believes we have ever heard the words cured, although my husband feels he is. Would be interested to hear from anyone that has been diagnosed 5+ years. He will be 68 in December.

Ann, I sent you a PM with my contact info. Marci

Hi @mepowers and @ann73. It is more than ok to private message each other in order to exchange information. We just ask that you don't post it publicly for your own safety and privacy.

Thank you for your reply. Yes, I would like to have your contact info.

Ann, I don’t know if it’s appropriate to hand out your number to someone on this forum or not. This was my exact diagnosis with added I formation...Large B cell CNS Lymphoma, I lost motor skills and cognitive skills. Immediately after my brain biopsy, I couldn’t even hold a sandwich or use utensils. I would love to hear your story and share mine. I will tell you that mine has a happy ending. Two more clean MRIs, and I’ll be considered cured. If his treatment is the same as mine, he’s got a tough year ahead of him. If you would like to talk,I’m very open to it. Let me know, and I can give you my contact information. It’s really an overwhelming time.

Hello @ann73 and welcome to Mayo Clinic Connect. I am so sorry to hear of your husband's diagnosis and so glad you found this community of incredible members to help provide support during this time.

I thought it might be helpful for me to share another group you might helpful as a caregiver and to help provide you support as well: https://connect.mayoclinic.org/group/caregivers/

As a caregiver, how are you holding up? How can other members best support you and your husband?