The phoney war

It was good news again at last week’s hospital appointment in the haematology clinic. There’s no significant difference in my blood tests from two months ago and the consultant wasn’t able to find any noticeable change in the size or the extent of my enlarged lymph nodes.

In simple terms, that means I have at least another couple of months on watch and wait – excellent news. However, I’m all too well aware that this seemingly indolent phase won’t last forever. But the positive-thinking part of me particularly likes the idea that it could be years, rather than months, before anything other than watch and wait is needed.

The type of treatment for younger, fit patients like me hasn’t changed since I was first diagnosed last summer, although there does seem to be lots of new research being published all of the time, as well as excitement around the potential impact of new (but very costly) drugs like Ibrutinib. This is currently being used when chemotherapy fails or when the disease relapses, but there’s some interesting speculation that this type of drug could eventually prove to be the best treatment option. That promise is some way off being realised, so at the moment I’m still expecting to undergo the Nordic MCL2 regime – eventually.

This involves six doses of chemotherapy followed by a stem cell transplant. How can I put this? I’m not looking forward to it. If my lymphoma beast is listening, I’m in no hurry to start the treatment that will send you into oblivion. If you’d like to stay as quiet and unobtrusive as you are at the moment for – let’s say – the next 50 or so years, I’d be happy to share my body with you. But I know that you’re not going to accept that offer – in much the same way that I don’t expect Labour and the Conservatives to be snuggling up in some kind of grand coalition after May 7th. I’m under no illusions that me and the lymphoma beast are simply skirmishing at the moment, sizing each other up, before the real hostilities start.

A Spitfire over Duxford, April 2015
Beating the enemy – a Spitfire flies past the Imperial War Museum, Duxford, April 2015.

At least the tone of the medical literature published in the last year or so seems much more encouraging than papers from as little as 5-10 years ago. While the literature still points out that treatment is difficult and suffers from a “lack of standardisation” (which I translate as “more research is needed”), overall survival time is undoubtedly improving.

The most interesting paper on MCL that I’ve read recently is this one: “Real world data on primary treatment for mantle cell lymphoma: a Nordic Lymphoma Group observational study“, published last year. Rather than being a clinical trial, it examines data from all of the patients in Sweden and Denmark diagnosed with MCL in the first decade or so of the current century – just under 1,400 people in total. Without wanting to cherry-pick too much, the most encouraging paragraph was:


Treatment options of MCL have undergone a dramatic development during the last 2 decades. High-dose chemotherapy with autologous stem cell support, high-dose cytarabine, and the introduction of rituximab are important contributors to improved clinical outcome in MCL evolving it into a potentially curable disease, at least for the younger subset of patients.


Encouraging for me, as the ‘younger’ subset of patients in the context of MCL are those under 65-70!

So for the time being, the “phoney war” goes on. And when the real fighting starts, it looks as if the ammunition will be rather more effective than it used to be even in the very recent past.

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Reader Comments

  1. Teresa

    I’m In the same boat on the stormy sea of indolent MCL , it’s like you are reading my mind! I’m even more rare… a female and in my 40s! Keep up the good work and here’s to a long watch and wait for us both.

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