The last time I wrote something on here, I mentioned that I’d had a diagnosis of lymphoma. Since then, I’ve had a more specific diagnosis given to me and a course of treatment outlined. The hospital wants to run a few more tests this week before I start out on treatment in earnest, but all being well, sometime towards the end of this month it really will be the end of the beginning.
For anyone that hasn’t thought too much about lymphoma, (and I was certainly in that category until a few weeks ago), it’s probably worthwhile me summarising what I’ve been told.
Lymphomas are cancers that attack the lymphatic system – the network of vessels and nodes that the body uses to clear away waste and infections from the body’s tissues. They’re categorised into two main types – Hodgkin and non-Hodgkin lymphomas, which seems about as sensible as dividing up the animal kingdom into elephants and non-elephants. Mine is a non-Hodgkin lymphoma (nHL).
Within the nHL category, there are low-grade and high-grade lymphomas. Low-grade variants develop slowly, whereas high-grade variants develop rapidly – you often hear the term aggressive used – but interestingly enough these tend to be easier to treat than the low-grade varieties. Lymphomas can also develop in either B cells or T cells – B cells are in the bone marrow, T cells are in the thymus.
The specific type of nHL I’ve been diagnosed with is mantle cell lymphoma (MCL). It’s relatively rare (it accounts for around 5% of all nHLs) and usually occurs in people 15-20 years older than I am. It affects the B cells and is (according to my consultant) ‘on the boundary’ between low and high-grade lymphomas, although the Lymphoma Association classify it as high-grade in their booklet.
This is where it all gets a little scary. The first thing it says about the treatment for MCL is:
MCL is difficult to treat successfully. It is not considered curable.
… which came as quite a shock, to say the least.
However, the treatment regime I’ve been given – the “Nordic Protocol” – appears to have excellent results, as long-term remission is definitely possible and apparently probable. The research I’ve read so far suggests that something like a 97% response rate to treatment is achieved, with mean survival times being boosted from the 3-5 years that used to be associated with this condition a decade or so ago to something like 7-10 years – and counting. Because the treatment protocol is relatively new, the researchers don’t believe that they’ve found the survival plateau yet – so although it isn’t curable in the strictest sense of the word, I’m very hopeful that something else will get me in 20 to 30 years time, long before MCL manages to!
I never thought I’d become a health blogger. However, I’ve decided that to keep myself sane (or as sane as I ever was), it will be therapeutic (and who knows, maybe of use to others) to document my progress here. As I said to my University of Leicester blog readers, this is not goodbye.