Primary Brain lymphoma

Hi all

Im looking for others to share their experience of a Primary brain Lymphoma.

My mother was diagnosed in April this year with PCNSL and was given a poor prognosis. She was given steroids (16mg per day) which were then tapered off to 0mg. After a few couple of weeks her original symptoms started to return so she has been back on the steroids since July- She is currently on 2mg every other day which seem to be maintaining a relatively symptom free existence alrhough she is generally weaker,more confused and totally reliant on her carers/family to keep her fed and watered.

Mum is 88 years old but was extremely independent and in general good health until March this year . She has never returned to that level again. 

Mum had another brain scan at the start of October but we haven't heard anything yet. 

We will be interested to hear from people who have experience of the same type of tumour in themselves or an elderly relative . For example - how long were they on the steroids for? Was the dosage increased and decreased? In fact any information would be helpful.

Mum has outlived the prognosis now and so we feel we are living with a ticking time bomb !

Any comments will be gratefully received.

many thanks 


  • Hi  and welcome to the Online Community but sorry to see you finding us. I am also so sorry to hear about the issues your mum is having and lets look for you to connect with folks who are on the same journey as your mum.

    I don't normal post on this forum but I am dropping in past from our Non Hodgkin's Lymphoma Forum as we have in the past had folks post on this forum who have PCNSL as this can often happen as part of a Lymphoma diagnosis and spread to the brain. I did a search using the search tool at the top and came up with these hits so have a look through them.

    Blood cancer can develop anywhere in the body and on the whole can only be treated using targeted chemotherapy and at times Radiotherapy. These tumours are not solid tumours but a build up of cancer cells in the blood and the treatments are used to melt away the cancer cells but this treatment can at times be very hard work and can take its toll on the patient.

    I hope that you can connect with someone on this journey.

    Highlander ((hugs))