Primary central nervous system lymphoma

My husband has just finished treatment for PCNSL and is now in remission. Physically he is doing well, mentally its a different story.

He is much more forgetful, has much less focus, can't concentrate or make decisions anymore. Has anyone on this forum experienced similar changes and did the changes get better as time went on? As he is currently he can't return to work. 

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  • Hi, I’m Matiamou.  I was finally diagnosed last October with Primary CNS Intra Ocular B Cell Lymphoma.  I had four cycles of Matrix chemo which sadly didn’t work.  I did have my stem cells harvested successfully but I failed my lung function and kidney function tests after the chemo so they didn’t carry out the transplant.

    I have now just finished 15 sessions of radiotherapy to my eyes. Both treatments were difficult in their own way and the radiotherapy has left me with red ‘panda’ eyes, conjunctivitis and watery eyes as well as cataracts which various treatments before and after cancer treatments have left me with. I have a phone appointment with the oncologist who arranged the radiotherapy next week and an appointment with the opthamologist the week after who will at some point redo the biopsies to ascertain if the radiotherapy has put me into remission. 
    I too am sometimes forgetful of names of people and things but that could just be an age thing!  It’s easy to let yourself descend into the pit of gloom but just getting on with life and always having a project to keep your mind occupied helps a lot even if it’s just clearing out the junk drawer, that can jog memory too. The occasional treat helps too.  I’m lucky that I have a wonderful family and fantastic friends who keep encouraging me so I just focus on the positives of today rather than dreading what might come next.

    Wishing you all the very best to D1967 and Leothion 

  • Hi

    it’s nice to hear someone in the same boat as me 

    I’m back tomorrow to check bloods. Hopefully white cells have improved

    good luck all

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