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. 

  • 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