@noelnemeth I have PCNSL diagnosed in April 2015 and now its May 2026. No stem cell therapy or surgery or whole brain radiation for me only massive doses of methotrexate plus other drugs done at the Cleveland Clinic. I am now 69 years old and live independently. I largely live a normal life and I retired at the end of 2020. I have my good days and bad days and I also use medical marijuana as needed. That is probably a bad habit and not helping things but when you're confronted with this disease you figure live life while you can. I get an annual MRI and have one scheduled in August 2026. I suspect I got the lymphoma from taking immunosuppressants treating my Crohn's disease leading to a permanent illostomy in 2007. I still have bouts of confusion and they are getting worse and the Marijuana doesn't help either. Slowing down in many ways and I don't know how much longer I have but I have been fortunate to get these 11 years so far. I can only say the worst and scariest feeling in the world is being aware your mind is going and you're helpless. Also, I had personal problems in 2015 and I lost the one person who was willing to take care and help me. I can only say I hope those of you out there who find this will have similar or better success with this disease. I was on the fence with whole brain radiation and said I'd do it but the doctor said my decision was too late and I was only allowed the chemo. Best fortunate outcome for me as whole brain radiation will cause long term damage. I decided I'd rather have the shorter live with quality of life than longer life with the additional cognitive impairment from radiation which I was told can be quite debilitating. Everyone's story with this disease is different and I hope anyone out there will have great success but regardless enjoy every additional day you have as a gift and this disease gives you an appreciation for each day...and if you can enjoy life and help others as you can as that is one of the purposes of life too....to help others.

let me also add that in 2015 as I was having vision problems in my right eye I kept seeing eye doctors until I was sent to an eye doctor at Cole eye institute at Cleveland Clinic. Eventually that eye doctor ordered an MRI for me to eliminate unusual possibilities (he said don't worry about it it's unlikely). Well, unfortunately (or fortunately) they found a large tumor on my brain stem basically inoperable. It took them a while to determine what kind of cancer I had. I had a spinal tap but those results didn't reveal anything. They were talking about doing a brain bioposy (which is risky) but my eye doctor talked the other doctors in doing a vitrectomy (removing the fluid in my right eye). That was done (who likes having someone doing a procedure with a needle on your eye while awake (in twilight sedation). The fluid had the lymphoma cancer cells in it and that was how they identified it. I am very grateful for my eye doctor and the excellent call he made. I think the other doctors there respect this eye doctor which was an impression I got. So I'm just adding this to say it's a process to figure out what's wrong with you and then determining a best path forward.

And to add another piece of information on my specific circumstances, I have a family history of autoimmune diseases. My only sibling (brother) died in 2004 at age 52 from complications from Type 1 diabetes he got when he was 5 years old. My father died from complications from having severe Rheumatoid Arthritis to the point he was completely bed bound towards the end. And then I got Crohn's disease as previously mentioned around the year 2000. So just to add a little history here.

Another thing as I recall I was having cloudy vision problems in my right eye and when I closed my eyes I saw an odd pattern like tendrils going to a center point. It was odd. I had this vision situation for I think like 2 years prior to my diagnosis and I felt increasing drawn and listened to the Christian radio network called "family radio". I liked listening to the stories although I'm not particularly religious it still gave me comfort. Maybe my body was telling me something or maybe something else I can't explain was calling me. They say there are no atheists in a fox hole. I have to agree with that and I can hope everyone has a strong social support network. But in the end it's just you and your maker. I have not felt this "closeness" for the last few years and it kind of feels a little like a "loss" but occasionally I remember and tune in the radio/internet in those times to get that comfort.