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Primary central nervous system lymphoma

Leothion
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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 Leothion and a warm welcome to our forum, 

    It's great that your husband has finished treatment for this rare type of lymphoma, Primary Central Nervous System Lymphoma and I am glad that he is now in remission and that he is going well physically but it's sad that he isn't so well mentally and has become more forgetful and less able to concentrate or make decisions. It might be worth getting in touch with his medical team just to ask whether these changes were to be expected as a result of treatment and if they will get better over time. It sounds like it isn't a good time yet for your husband to return to work while he is experiencing these issues and I hope that things will improve for him very soon. 

    I've had a little look on the forum for other members who may have had this rare type of lymphoma before and I have not come across many I must say but I have found this post by  who was diagnosed with primary intraocular lymphoma which is a subset of PCNSL so it might be good for you two to connect and share experiences. 

    I hope that you will hear from others here who have had a similar type of diagnosis and who experienced similar mental changes. 

    If you wanted to talk things through with one of our cancer nurses, there is a free helpline you can call on 0808 800 4040 - it is open Monday to Friday from 9am to 5pm (except Bank holiday Monday). 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Offline in reply to Moderator Lucie

    Hi

    i I have had the same diagnosis.  Just had stem cell transplant. My memory is ok. Just sometimes forget names. 

    I am anxious with the outcome 

  • Offline in reply to D1967

    Really good to hear your memory is ok, my husband had his stem cell transplant 6 weeks ago and has been home for three weeks. It's really early days in what has been very intensive treatment so I am hoping the cognitive decline is normal and will get better as time goes on.

    I hope your blood counts continue to increase and if you are not already home I hope you get there soon. 

  • Offline

    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 

  • Offline in reply to Matiamou

    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

  • Offline in reply to Leothion

    Thank you 

    I hope all goes well with your husband too x

  • Offline in reply to Matiamou

    My husband had 4 rounds of Matrix too, his PCNSL was brain only, Matrix itself is such a brutal treatment and I'm sorry to hear that it didn't work for you. I hope both your oncologist and ophthalmologist give you positive news when you next see or hear from them. 

    We are still navigating life at home with blood tests and monthly Oncology appointments. Memory and  Cognitive thinking is still very much different to pre Cancer times together with exteme tiredness but in the grand scheme of things it is still very early days and we have a lot to be grateful for. 

    keep taking good care of yourself and thank you for posting. 

  • Offline in reply to D1967

    Hope your white count continues to increase and that you are feeling fairly good in yourself. 
    keep taking good care of yourself too. 

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