09th Oct2011

Astrocytoma: 6 years in 8 MRI scans

by Dutchcloggie

So here they are: Jane’s MRI scans that show how this all went down. They can no longer find the scans they did first, in 2005 so the first view of the tumour is from 2006, a year after surgery. It is difficult to compare scans exactly as they have been taken by different machines, at different times and with different contrast substances. So when something lights up really bright in the picture, that does not always mean the tumour got a lot worse.

January 2006
Diffuse Astrocytoma MRI January 2006

There is a clear grey area on the left of the front (the MRI is mirrored so the left of the picture is the right of the brain). It is clearly visible that the tumour is diffuse. There are no clearly defined edges. It is not crossing the midline of the brain.

January 2007
Diffuse Astrocytoma MRI January 2007

Although some areas light up more, it is clear the shape & size of the tumour has not changed much since the last scan. Indeed, Jane is still happily living a normal life, forgetting about the tumour, free from any symptoms.  The difference in contrast can sometimes be as simple as it being a different machine (or me not using the exact same slide).

January 2008
Diffuse Astrocytoma MRI January 2008
A year later and the tumour is still roughly the same size. At this point. the doctors were discussing a possible tiny tiny change. However, the change was so small that some said there was no change at all. It is difficult to judge from the scan how big the actual tumour is and what is swollen healthy brain tissue.
October 2008
Diffuse Astrocytoma MRI October 2008

Now things have changed. Jane had been complaining of headaches and double vision. The tumour is clearly larger than previously. It is also obvious there is a lot more swelling and the tumour is pushing against the midline, bending it out of shape. This is called mass-effect. The tumour has invaded the Corpus Callosum and this means it is now inoperable. The swelling of healthy tissue is once again difficult to separate from tumour tissue. Based on this scan, Jane has radiotherapy.

July 2009
Anaplastic Astrocytoma MRI July 2009

After the radiotherapy, the tumour has shrunk a little in size. Unfortunately, as is very clear from the 3 bright spots, the radiotherapy has caused extensive brain necrosis (death of healthy brain tissue) and the bright spots are cysts filled with fluid, where brain used to be. Further more, the centre of the image shows the tumour has crossed the midline and has taken on the appearance of a much more aggressive tumour. It is now no longer a benign tumour but an Anaplastic Astrocytoma Grade III. In short: radiotherapy has not worked and caused brain damage. No cure is possible after this. Chemotherapy is started.

January 2010
Anaplastic Astrocytoma MRI January 2010

After 6 months of chemotherapy, the tumour has shrunk somewhat. It no longer presses on the midline of the brain. There is considerably less mass-effect. The grey area is smaller, although the cysts remain. They will not go away. This is a positive result compared to the previous scan and there is hope that the chemotherapy will continue to contain the tumour.

June 2010
Anaplastic Astrocytoma MRI June 2010

Very little change in the scan. Some slight change in the grey area but I can not tell if this is just because it is a different scan or if this means something. Although Jane’s symptoms are getting worse, the scan offers no proof of further progression. Just like there can be a tumour with no symptoms for a long time, it is possible to have symptoms longs before the scan shows any change.

September 2010
Anaplastic Astrocytoma September 2010

2 months later, the story is completely different. The chemotherapy is no longer working. The scan is not as clear as the previous ones but it is obvious that the tumour now stretches much further in to the brain. It has now reached the brain stem and affects both sides of the brain. There is no sure fire way to distinguish between diffuse tumour tissue and brain swelling but it is clear a larger area of the brain is now affected. Jane is admitted to the hospice and large doses of steroids help reduce the swelling. Symptoms improve for a few months.

A final scan is done in January 2011. I don’t have that scan (yet) but that scan shows more necrosis and new tumours in different parts of the brain.

So that is what it looks like. A relentless march towards death. It never really got much better, no matter what we tried. Looking at these scans makes me angry, it makes me sad. But it also gives me a strange sense of acceptance. It shows in very clear images that nobody could have done anything.

03rd Jan2010

2009: an overview

by Dutchcloggie

As it is a new year, I thought it would be a good idea to look back at 2009 in a really quick summary. So what has happened this year (and, more importantly, who cares about this kind of self-indulgent navel-gazing??)

January – June
JD had to have radiotherapy on her braintumour. Every day for 6 weeks we got in the car for an hour to have 10 minutes of treatment. We had been warned about possible side effects but let me tell you: radiotherapy to the head is fucking devastating. Only in September did JD start to recover from the damage. No concentration (and I mean: not even for 2 minutes!), extreme lethargy, forgetfulness to the point of forgetting to eat and forgetting what day it was, non-stop eating, depression, lack of initiative, self-centeredness, inability to understand emotions, both her own and other people’s, unable to plan more than 5 minutes ahead, not able to have a phone conversation with the radio on, the list goes on. We were not properly warned and for the first time since she was diagnosed back in 2005, I really felt like screaming, hopelessly desperate and unable to see a light at the end of the tunnel. I just could not see how JD would ever get better again. And I am not talking better from the tumour but just recovering from the damage of the radiotherapy.

Life just stopped being anything like it was before and I had a tough time living my own life as well as living JD’s life for her more or less. I don’t care if people think I am being selfish for saying it was difficult for me (after all, JD is the one with the nasty tumour) but it was. So there.

June – December
Life has a funny way of throwing things at you. In June I read something in a local rag about Spratton Folk Festival. It said all-female group Invocal would provide the local flavour to the festival. So I checked them out. Found they were looking for a singer. Agonised about it for days (am I good enough, I’m shit, really), got in touch, did not get the job but ended up as their ‘manager’ in the end.
No idea what a manager does so I just jumped in, started about 50 things at the same time, then drowned in ther amount of work I started and did not finish (ADHD much?) but managed to do some good stuff in between. (video, brochures, PR, general organising, whatever). The only thing I have not managed to do is book any gigs. Bit of a bummer really… keep working on it. (see how I managed to avoid saying I am talking about Invocal here!)

Anyway, it is absolutely lovely to be doing something in music again, even if it is not performing and playing. Sometimes I feel like a groupie and a fraud. But I just love being around music and people who make music. It just feels like a lovely warm blanket. The unexpected side effect is that I have also made some new friends and I have actually seen more pubs since June than my entire life before then. Yes, I have a social life. Well, I had one before but not in Northampton. Never got round to building a new one after moving here.

JD recovered well from the radiotherapy but has lasting trouble with her concentration and some remaining lethargy that may not go away. Unfortunately the RT did not help & the tumour actually changed in to a Grade 3 Astrocytoma in certain places which means it went from wholly benign to partly malignant. Bummer.
So she started chemotherapy in August. 5 days of Temozolomide per month. For 6 months initially. She will be on that for as long as it stops the tumour from growing. Which may be for the rest of her life. IF it stops it from growing. We’ll know after the first post-chemo scan in February 2010.

My sister gave birth to her second daughter, a tiny little puppet called Alessia. Hurrah. Now my folks are proper grand parents I am I am officially off the hook for providing the offspring. Phew!

That’s about it really. Other than a lovely holiday in France and erhm….lots of other stuff I have forgotten about for the moment.

Resolutions for 2010:
– Book more gigs
– Be more organised
– Go out more
– Make money & get paid
– Find a cure for AIDS & brain tumours

05th Aug2009

Temozolomide

by Dutchcloggie

JD went to the Oncologist this morning to discuss the results of her first MRI since the radiotherapy. We were very hopeful because she has had no problems with the tumour at all, even though she has finished with the steroids. We thought: That means the thing has shrunk and that is surely good.

So to say we were gobsmacked when we were told the MRI showed signs of a change in tumour type is an understatement. He said there are indications that the tumour is progressing to a Grade III in certain parts. Next week, they will do a PET scan to see if this is indeed the case but either way, he wants to start Jane on a course or Temozolomide. Chemotherapy.

Hmmm….not what we were hoping for. The thing has changed from large Grade II to small Grade III, hence JD had no headaches etc.

They way he talked about it sounded all a bit casual. As if it really was only a tiny set back and that the chemo would possibly cure what the radiotherapy was not able to do.

I am very confused about this. In the past 4 years, since discovery and initial surgery, the attitude of all doctors has been: not to worry, we just want to treat it to be sure it won’t get worse. And yet, the result of each treatment has been a, small, step in the wrong direction.

Surgery: they said it was a small tumour and that they might as well take it out whilst they were there for the biopsy. They also said it might come back or it might never come back. RESULT: They were unable to remove it all, it came back and they were never able to take a proper biopsy.

Radiotherapy: they said it was nothing serious as yet but just to be safe, let’s do a course of RT. In a high dose and the aim is to cure. A small risk of changing grade. RESULT: It didn’t kill it and it looks like it changed grade but it might not have but either way she’ll get chemo, just to be sure. Oh, and he said: well, it IS a rather large tumour….something else we were never told before.

Chemotherapy: he said he has many patients who have been on many cycles of this drugs and are doing fine. The aim is to cure so that it might never come back. RESULT: ?

My point is, how are we supposed to judge how serious this is getting when the doctors keep giving us the impression there really isn’t anything to worry about yet and that they are just giving JD the treatments almost as a kind of precaution.

They are all tiny steps in the wrong direction and it makes it really hard for us to feel upset or scared or deal with the emotions because every time, we are given the impression things are really not bad yet. And so we are in some kind of emotional limbo. Almost like the progression of the tumour keeps creeping up on us. A bit like when people gain weight: it happens slowly over time and goes almost unnoticed, until it is too late and suddenly people realise they are fat. It feels like that: small things are added all the time to this story and yet, we don’t really respond to it emotionally because it is such a tiny bit of news. So I am waiting for the moment where the doctor will say: well, we have tried all we can but it is now ‘officially’ incurable. I am afraid that when that happens, we will be shocked because we did not realise that is how bad it was…

Does that make sense?

I know doctors are trying to protect you from thinking the world is going to end right away but this half-baked attitude is so confusing: if it really wasn’t such a problem, you would not give radiotherapy and chemo therapy! Just be straight with us! Over the past few months we have found out, via casual bits of info just dropped into the conversation by the Oncologist, that the tumour is actually quite large, is inoperable, has invaded the corpus callosum and thalamus. These sound like pretty serious bits of information that we were never actually told properly. And now there are signs it is changing to Grade III in parts. How the hell do we know how worried to be?

There. Rant over.

Feeling better now. Now where is that bottle of Scotch I bought.

On the practical side: it probably means our holiday to France is off in 2 weeks. Nobody will give JD travel insurance with a brain tumour and chemo therapy…:-( I am SO upset about that, you won’t believe it.