I enjoy a wee flutter from time to time, but I’m certainly not the world’s most successful gambler.
But in truth, who is? You don’t see many poor bookmakers, do you?
It’s the Cheltenham Festival next week. A good friend and regular attender at the Gold Cup-headlined event was trying to get me to join him this year, but unfortunately the Festival clashes with my 6th and final round of ‘normal’ chemo which starts on Monday.
I did, however, go out for a quiet drink with him last night to watch the football.
It was a good opportunity to get a gambler’s viewpoint on the odds I’d been presented with by my haematology consultant earlier in the day.
Louise and I finally sat down with Dr Scott to drill into the detail of my treatment plan options now that ‘phase 1’ – the 6 rounds of chemo – was coming to an end.
It has always been planned – and assumed – that I’d move seamlessly into ‘phase 2’, an *Autologous Stem Cell Transplant (* i.e. using my own stem cells rather than those from a donor).
But digging around recent research from trusted sources showed there was an emerging school of thought that was suggesting Stem Cell transplantation – and its inherent risks – may not be necessary when measured against more conventional and emerging medical interventions.
The ‘positives’ around Stem Cell are that it is tried and tested, so the experts have a good idea of the advantages and disadvantages of such a procedure. The alternative methods to not doing or delaying transplantation have less of an evidence base behind them – not surprising given the fact that Mantle Cell Lymphoma only emerged in the 1980s and the biology – and therefore new treatments – has really only taken off in the last 5-10 years (and continues to develop at a great pace).
Whilst I still very much favoured the Stem Cell route, I wanted to use yesterday’s meeting to ask lots of questions about current prognosis; progress in treatment so far; risks of doing Stem Cell versus known benefits; and risks of not doing Stem Cell versus known downsides.
The discussion was incredibly helpful, and at times very frank. But probably not surprisingly, there were lots of ifs, buts and maybes – especially given the continuing research and treatment development, but also the continuing uncertainty over exactly how each individual might respond to their treatment plan.
And there were lots of numbers, percentages and statistics. Most were actually reassuring, but some were just a wee bit scary. But hey, this is cancer, it can’t all be sweetness and light!
So, some of the ‘highlights’…
So far, I’ve responded very well to the chemotherapy treatment, which is aimed at bringing the cancer under control and reducing its presence in the body. Age and fitness are real positives.
The ‘aggressiveness’ of the cancer – measured by something called the Ki-67 index – is 20%, which is relatively low (they want to see it below 30%).
The amount of cancer in my bowel area – which is where it was detected – was 25% when first measured, again fairly low down the scale of what it could have been.
The bone marrow ‘drill’ test I got during first chemo showed 20% involvement of the cancer – again well within what would be expected and meaning I don’t need to have my bone drilled again – phew!
All the various stats get brought together to give each patient a ‘risk’ rating, known as MIPI. There are four levels on the scale and mine’s is second from bottom, the Low/Intermediate rating.
It meant that I could proceed without the Stem Cell transplant, but the medical advice – based on verified research to date – is that the Mantle Cell would have a greater chance of re-emerging at an earlier stage if I just relied on chemo and medicines from now on. Not definite, but probable.
A Stem Cell transplant would increase the chances of the cancer not re-appearing until a later date. I’d like to write “or re-appear at all” but although some patients have gone well beyond 10 years without any signs of a return, they still won’t talk in terms of a ‘cure’ because nothing tried and tested has given them enough data to suggest this is the case.
Parts of the Stem Cell transplantation process sound, quite frankly, brutal. This is where the numbers – the bookie’s odds if you like – come into play.
Issues like quality of life; increased life expectancy; possibilities of secondary cancers; and, of course, risk of death.
Dr Scott went through all of these issues with us patiently, and was very clear that ultimately it’s about me and my decision how to proceed.
Let’s get the scary statistic out of the way first. Because Stem Cell transplantation is complex and basically takes the human body as close to death as is generally safe to do so without killing you, it’s clearly not without its risks!
They kill off your immune system, and destroy your bone barrow (which is the ‘factory’ for making new blood).
You are susceptible to all sorts of infections – many of them life-threatening when your immune system is kaput. There’s also no absolute guarantee that your body will accept your stem cells when returned.
So – bluntly – there’s a 2% chance of patients not surviving the Stem Cell transplantation process. Or in bookie’s talk, you’re a 50/1 outsider in the Grim Reaper Stakes.
However, after this, things do get a lot more positive.
Assuming you can do the Stem Cell transplant (80% success rate in collecting the required Stem Cells), and you come out the other end fit and well, around 60% of patients have no problems after five years, and many continue to have no problems after 10 years.
Even if the Mantle Cell does reappear after two years, there are further treatments (mainly trial drugs) they can try – or even consider a donor Stem Cell transplant (a bit more risky though).
A return within two years, though, is not good news. However it’s almost always patients with a more aggressive type of Mantle Cell who suffer a <2 years re-emergence, so fingers crossed.
In summary, then.
Stem Cell transplantation can be brutal for a period – described as having the worst flu you could imagine, with added diarrhoea and severe mouth sores for potentially a week or two – and there’s a small risk it could kill you. However once you come through the other side, the longer term prognosis is better than not doing it.
My gambler’s head says go for it. And it’s a bet I’m determined to win.