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, 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

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.