The Background

In April 2005 I was diagnosed with Chronic Lymphocytic Leukaemia (CLL).
It was two days before my 49th birthday.



This is me

 I had had pneumonia that March for no very good reason and it had taken two courses of antibiotics to get rid of it, so my GP sent me for a blood test.  The test revealed that I had a high lymphocyte count, a classic symptom of CLL, and further tests at the hospital revealed that it was indeed CLL.

Lymphocytes are a type of white blood cell and defend us against infection, principally viruses.  Like all cells, they live for an appointed time and then die.  New ones to replace those that die naturally are continually being made in our bone marrow.  However, when you have CLL, the little blighters refuse to die.  Not only that, but they also refuse to do their job.  So gradually your bloodstream fills up with useless (to you) lymphocytes, presumably just chillin' and partying instead of killing infections.  Eventually your bloodstream and bone marrow are so full of carousing lymphocytes that there's no room for anything else and all the other useful components of your immune system are crowded out and unable to defend you against the bacteria and viruses that regularly invade and inhabit our bodies.  So you die of something silly like a sore throat.


This is a lymphocyte

CLL can be controlled by the use of drugs (chemotherapy), but not cured by them.  So the normal method of treatment is to wait until the patient feels unwell and/or the lymphocyte count is uncomfortably high, and then to administer a course of chemotherapy to kill the dysfunctional lymphocytes.  Unfortunately of course it also kills the healthy ones (isn't there always collateral damage?), but that's OK because new ones are made in the bone marrow and gradually the population recovers.  Sadly though, because the drugs don't cure the CLL, the cycle repeats itself: some of the lymphocytes again refuse to die and so the system slowly fills up with useless ones once more.  Cue another round of chemotherapy.  The only problem being that often the drugs become less effective with each cycle.  Hence the disease is fatal in the end.  But then so is life...

Having said that, CLL is generally a fairly indolent disease, often appearing late in life and progressing slowly.  In many cases it needs no treatment at all and has no ill effect on the host, the only outward sign of its presence being a slightly higher than normal lymphocyte count revealed in blood tests.  Many people with CLL never feel unwell from it and die of natural causes before the recalcitrant lymphocytes ever cause them a problem.

However, in my case the lymphocyte count was already very high on diagnosis (110 against a normal upper limit of 3.5), so I was treated swiftly with a six-month course of chemotherapy from May to November 2005.

Since then I have had more chemotherapy with different drugs in 2007 and 2008.  All my treatments have been successful and allowed me to carry on as I would without CLL in between courses of chemo.

Then in August 2010 the CLL changed its line of attack.
My lymph nodes swelled up.  Lumps where I shouldn't have lumps.
Tests revealed the disease had changed its genetic profile and become more aggressive.
Henceforth we know that it will only be responsive to one particular drug regime and that it will become less and less responsive to successive treatments, eventually leaving me defenceless against infection, probably within a couple of years.
So my consultant recommended me for a Bone Marrow Transplant.

A Bone Marrow Transplant is the only treatment that can cure CLL completely.
So why not have one as soon as CLL is diagnosed?
Because it's risky.
It can also kill you.
20% die within a year of the transplant.
A further 30% die within two years, generally from a recurrence of the CLL.
And the other 50% survive both the transplant and the disease, and show no symptoms of CLL two years after the transplant.  That passes for a cure, although CLL may still recur after that.
So it's an exciting gamble, but since the alternative is less than two more years, it wasn't really a difficult decision to do it.

And that's where I find myself today.
I'm booked in for admission to the Royal Marsden Hospital in Sutton on Saturday 12th February and the transplant will take place on Wednesday 16th February: my immune system's new birthday.

More on the transplant procedure and the reasons for the blog in future posts.
Not to mention those Spoons in the title.