The Multi-disciplinary team at the Walsgrave finally decided that I had a Primary CNS Lymphoma and that the first line treatment would be Chemotherapy. The Haematologist there had already explained the neurotoxicity of radiotherapy for this condition. The final scan they carried out just before I was discharged was an MRS - that is a Magnetic Resonance Spectroscopy. These are used to characterise the metabolic signature of brain tumours. In effect, these provide a non-invasive analysis of the biochemistry of the tumour in an attempt to determine its makeup. Unfortunately (or fortunately!) because the steroid had reduced the tumour so much, the MRS turned out to be inconclusive.
There appears to be only one chemotherapy regimen used for PCNS-Lymphoma and this is well documented in the guidance paper produced by the British Committee for Standards in Haematology "Guidelines on the diagnosis and management of adult patients with primary CNS lymphoma (PCNSL) and primary intra-ocular lymohoma (PIOL)". This can be carried out at Worcester Royal Hospital (WRH) and so the Walsgrave discharged me to the care of a Consultant Haematologist there.
When I met with the WRH consultant's registrar to discuss treatment, the regimen of High Dose Methotrexate (HD-MTX) in combination with Cytarabine was confirmed. I was to be given 3 - 4 cycles of this and was told that this would give me a 90+% chance of remission with a 50% chance of a relapse after 3 to 5 years. These, of course, are just statistics based on the usual asymmetric Gaussian distribution curve. Where I am under that curve is important - especially so as I only received one cycle of the planned chemotherapy. It is also worthy to note that there have been few, if any, trials on a suitable sample of patients to provide meaningful statistics - the condition is so rare that trials are difficult to manage.
So, I underwent 1 out of 3 to 4 chemo cycles because it affected me so badly. I suffered acute kidney failure, liver dysfunction, pericarditis, loss of balance and coordination, double vision, speech problems, swollen body and rash, as well as the usual infections and need for blood and platelet transfusions. As one of our doctor friends said, if my kidneys and liver had not recovered then neither would I have recovered!! You can read the blow by blow daily account on the blogs from 26th March to the 17th April, if you haven't already and want to.
Since then no one has given me a prognosis, other than the consultant Haematologist at WRH saying "the future looks fairly bleak" - but this has not been quantified! The only other treatment left, which is mentioned in the guidelines is whole brain radiotherapy, which has high chance of long-lasting neurotoxicity for the older patient (60 years and over) - progressive dementia, ataxia and urinary incontinence, for example, affecting up to 90% patients in this age group. Fortunately my Oncologist at Cheltenham is cautious about such treatment and has put the case for periodic monitoring (scans, ophthalmic examinations, alertness for odd symptoms) where a more focussed radiation field can be considered if a mass lesion or active disease reappears.
I have had no clinical treatment since 1st April. My current symptoms include:
Varying degrees of memory problems.
Difficulty processing lots of information at once, which often leads to confusion and frustration at the same time.
Difficulty in determining a route from A to B, even though I might have been familiar with both A, B and the routes between them in the past. (My sense of direction and route finding used to be quite good, and have had a life of walking and cycling using maps, etc).
My balance is still not right - I have to remember not to turn around quickly when something catches my eye.
Determining the source of noises can be difficult which leads to momentary confusion.
The next MRI scan is due sometime in August before I see the Oncologist at the end of that month.