So, you will have read the blog of the 2nd July followed by the blog of 22nd July, which covered the initial diagnosis and the continued diagnosis and initial treatment.
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.

Colin.

Before reading this, please read the previous blog about the initial diagnosis (2nd July) - it's important!
Just to recap, within a couple of days of me collapsing in February, Worc Royal had carried out a CT scan of my brain. This showed what they thought was an aggressive brain tumour. This was followed by an MRI scan the day after and because Worcestershire has no brain tumour experts, this and the CT scan were sent to the Walsgrave Hospital in Coventry for analysis and subsequent diagnosis.
I waited nearly 2 weeks for a bed at the Walsgrave but within hours of arriving they carried out more scans, of both types and I was placed in the care of a Neurosurgeon - an internationally renowned one at that. This was not so that surgery could be done to remove the tumour but so that a biopsy could be performed - it had already been established that this tumour was inoperable as it was in the very centre of my brain. The biopsy was to confirm the presence of a tumour and to determine precisely the type of tumour cells present so that the appropriate treatment could be provided.
As soon as the results of the first CT scan were known, Worc Royal had started me on a high dose steroid (Dexamethasone) and an anti-convulsant (Phenytoin). This was to prove a double-edged sword but no doubt saved my life. The scans taken at the Walsgrave showed that the mass lesion had reduced dramatically. We saw both sets of scans the night before my biopsy (29th Feb) when the Neurosurgeon explained that this often occurs when Dexamethasone is administered. What was shocking was the Worc Royal scans showed a huge volume of my brain taken over by a mass lesion - I was sort of grateful that it had diminished so much!
That same evening (about 8pm actually) my Neurosurgeon explained the biopsy procedure again to both of us (his registrar had already delivered the details earlier to both of us - via phone to Jane). It was to be done using image guided neuronavigation with the surgeon using markers (fiducials) on my head and the scan images to help guide the biopsy needle to the right area within the brain. Jane kept telling me I should be grateful to the physicists (but then she would!) and I maintained it was the engineers who turned the theory into the practicalities!
The biopsy on Feb 29th returned 4 good samples but later these were to prove to 'just be' samples containing only normal brain cells - no tumour cells. The surgeon checked again that the biopsy was taken in the correct area of the brain - and it was. The Dexamethasone had reduced the tumour so much that tumour cells were difficult to obtain.
Diagnosis could only be made based on radiology alone. The lesion was surmised to be a Lymphoma due to its behavioural response to the Dexamethasone. However the Haematologist was not convinced - apparently other brain degenerative diseases can behave in the same way in response to steroids. He wanted histology to confirm exactly what he was dealing with before he would consider next steps for treatment.
There are serious risks associated with a brain biopsy (infection, bleeding, stroke, fits and death) and roughly 1 in 100 patients have complications and probably due to these my Neurosurgeon was unwilling to perform the biopsy more than once even though he was being 'coerced' by the Haematologist! In the end my Neurosurgeon 'won'. As he put it, if he did the same again it was very likely it would result in the same outcome. If he went in deeper there was a higher risk of hitting the brain stem, and that would be 'curtains'!
I understood that term!!

....to be continued.

Colin

.....that's there's nothing untoward to be seen at the moment." This was the outcome of my Ophthalmic examination at Worcester Royal today....and yes, Jane and I are also pleased! This was a very thorough examination again with the aid of two lots of eye drops. Just the ticket on a sunny day.....I'm told the pupils will be dilated for several hours, so I'll probably be going to bed in sunglasses! (The last sunny day I remember well was the last time I had this examination done!).

We now await confirmation of an appointment for the next MRI scan at Cheltenham, which has to be before the end of August as that's when I have the next appointment with the Oncologist there.

Colin.

Last Monday (9th) I returned, albeit briefly, to one of my volunteering slots in Malvern. This was helping out in the office of the Lyttelton Well updating spreadsheets for the Charity management team. This proved more difficult than I thought it might be, after such a long time away from it and also not being able to concentrate quite so easily. I had another go yesterday, and this went much better.
The Tuesday (10th) we finally had a visit from the 'Macmillan' nurse (altho' she is not Macmillan but St. Richard's!). This was basically another assessment of needs and she will refer to St. Richard's for some of their facilities/resources. In the afternoon. we attended the Glos Hammer Out support group meeting in Cheltenham. This was yet another useful session. In particular it was really interesting to hear from the others there who have or have had brain tumours and how they had all been affected by stress/anxiety/depression prior to their diagnoses, and which we had already concluded may have played a major part in my contributory factors which led to my tumour. It was also interesting to hear about how they were all coping with their poor memory as a result of the tumours - this seems to be the most difficult concept to get across to people. I often get the "well that happens to me" comment and I feel like saying "no it doesn't, 'cos it's different!"
On Saturday we visited Joy & Phil's lovely garden, which they had opened in aid of Powick Church. It was a lovely afternoon with tea and CAKE, and the opportunity to catch up with some of the Powick Ramblers, and was only spoiled when the rain came (again!).
Sunday we took advantage of the good weather and visited WWT Slimbridge where we are life fellows. They have carried out some considerable work to the landscape since we last visited and it's much improved. We saw several Eurasian Cranes which have made a home there.
Yesterday evening a friend accompanied me to the Theatre to see "Too Hot to Handel". This was a very enjoyable evening - a modern opera (in English, thank goodness!) written around Handel's music. The highlight was the realistic looking stuffed dog...and oh yes, see the Hills Singers (including hers truly) taking part and taking the stage at the end!

Tomorrow.....sees (no pun intended) an important appointment at Worcester Royal for an Ophthalmic examination. This has been requested by my Oncologist at Cheltenham as, if this Lymphoma returns, there is a high probability it will do so in the ocular area. Will update here with any results when they are known.

Colin

Another enjoyable week in spite of the weather!     Starting today and working back through the week....
Funny old things birthdays - there you are trying not to count them when you get as old as me, until the time when you think you'll never see another one! So today is truly another milestone - and I made it! And it has been rather a nice day - even the weather was kind for most of it. It started with our usual visit for the 10:30 @Great Malvern Priory where we heard some thought provoking words amongst which were 'stand up and be counted' - which I fully intend to do! Then it was off to the Kettle Sings (on the west side of the hills) for a good Sunday lunch. And indeed, it was good - highly recommended to those of you who have yet to try lunch there.
Yesterday it was the usual shopping morning when we saw any number of friends and acquaintances with which we passed several minutes in conversation and a cup of coffee reading Nature and The New Scientist at the library. In the afternoon I enjoyed a cream tea at one of the neighbours in convivial company watching Wimbledon!
Although Friday was extremely wet, we ventured to St Richard's on the outskirts of Worcester for this month's Hammer Out Brain Tumour Support group meeting. This was very good as usual and we learnt a lot - from the Macmillan financial rep, and also from other group members. How useful it is always to hear of others' experiences - it helps to put it all into perspective.
Thursday was good weather - remember it? It was dentist time for Jane in the morning (ouch!) but after lunch we went for a walk up to the top of Worcestershire Beacon and there was a fantastic view from up there - so glad we went. We finished off the day by taking tea and cake at the Kettle Sings (see above)!

I have shown this blog to the Hammer Out support group who were interested as it provides information about the whole condition which may be useful to others - it makes it doubly worth doing.

Also more important information to follow on from the last one is coming soon.
Colin.

A Primary Central Nervous System (CNS) Lymphoma is a nasty beast! Then I guess most brain tumours are in their own ways. We discovered from carrying out some research that Primary CNS Lymphomas (PCNSL) develop within 3 to 4 weeks and within 6 weeks are fatal without intervention - that is without diagnosis and treatment. On those that have died without treatment, autopsies have found lymphoma cells spread across the brain but not visible on MRI scans - it appears only mass lesions are visible on MRI!
PCNSL is an aggressive form of non-Hodgkin's lymphoma arising in and confined to the brain, spinal cord, leptomeninges, retina, vitreous humour and occasionally optic nerve. Although rare - the incidence of PCNSL in developed countries is 5 per 1 million person-years - incidence has trebled over the last 30 years and there is a slight male preponderance with most patients aged 60 years or more. PCNSL accounts for 3-5% of primary brain tumours.
Patients with PCNSL usually present with neurocognitive symptoms (due to deep location of the tumour) over a few weeks - 70% focal neurological defects, 33% raised intracranial pressure, 14% seizures and 4% ocular symptoms. Headache is a RARE complaint, whereas behavioural changes are COMMON.
So...as you can see....time is of the essence if this condition is to be diagnosed and treated/managed.

For me my symptoms developed over 2 to 3 weeks, they included short-term memory loss and confusion, reading the wrong words in passages of text, getting lost twice when driving home from Malvern. I had a headache on the day I collapsed but not a typical brain tumour headache (I had had some over the previous days but they went away each time) and this might have led my GP to tell me, confidently, the day before that my condition didn't sound like a brain tumour! He arranged blood tests for later in the week and I was to see him within the next week or so (which probably would have been too late!).

However, as subsequent hospital tests would show, there was nothing relating to the PCNSL showing in my blood, or cerebrospinal fluid or bone marrow, and no tumours anywhere else in my body.
The Paramedic which attended to me after my collapse carried out the usual checks and found nothing abnormal except for a slightly raised blood sugar level. I'm fortunate in that she insisted on taking me into A&E to be examined by a doctor. If she had not, the outcome could have been very different! And so I'm very grateful.
I'm also very grateful to the two A&E doctors who attended to me that evening. Jane has told me endless times how impressed she was with their diagnostics - and that's praise indeed! They were 'on the case' straight away as if they had an inkling of what was wrong. It was they who carried out the blood tests, chest X-Ray, and arranged for me to stay in overnight for scans. Had they not done so again, the outcome could have been very different.

And so, all in all, I'm very pleased that I collapsed that Tuesday evening in February. If I had been taken down the GP route it is likely that I wouldn't have survived long enough to hear the results of 'normal' blood tests or any other tests the GP may have thought of. And it is very likely that even if he had suggested a scan, I would have been on a waiting list longer than the time which I had left on this planet!

Colin.