Testing, testing …

Before I can start my chemotherapy treatment, I’ve been booked in for a number of other tests. As well as a battery of blood tests that I was given last week, I’ve had a bone marrow biopsy today to see if the cancer has spread there and tomorrow I’ll be undergoing a PET scan in Nottingham so that the extent of the lymphoma can be understood and staged. Stage I is the earliest, with stage IV being the most advanced. Due to the way that mantle cell lymphoma hides itself from the body’s immune system, I’ve been told to expect that I’m likely to have progressed to stage III or IV. Not good, but of itself it won’t affect the treatment regime I’ve been put onto.

I also have to go back to Derby for a MUGA scan on Friday – this will help in understanding whether my heart is likely to be up to the job of withstanding the treatment. I’m not expecting any nasty surprises, but then again, I wasn’t expecting a lymphoma diagnosis when I first went to my GP with the lump on the side of my neck in July.

The PET and MUGA scans both require a radioactive compound to be injected into me, so I expect that I might have a green glow around me by the weekend – just like the children on the old “Ready Brek” advertisement used to have.

The bone marrow biopsy certainly lived up to its billing of “uncomfortable”, and I may have let one or two naughty words slip out while it was being performed, for which I apologise to the nurse and doctor who looked after me. I’ll try not to be such a wimp next time around, but I know I make a rotten patient. Still, at least I’ll get a lot of practice over the next few weeks!

 

Hello to the end of the beginning

Lymphoma association booklet - High-grade non-Hodgkin lymphomaThe 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. 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.

So, hello.

 

It’s lymphoma

I got the results of my excision biopsy yesterday morning. I’ve been told that I have a non-Hodgkin lymphoma, but that the prognosis is good with treatment – probably chemotherapy, radiotherapy or a combination of both.

I’m back at work today, feeling rather tired and distracted, but at least my neck is more comfortable now that the stitches have been removed.

Thank you to everyone who has left messages of support in the comments of my last post, on twitter, through facebook, on the ‘phone, by email – and some were delivered in person too! They were all greatly appreciated.

I’m determined to stay positive throughout this experience, so please remind me of that if I ever start to sound too sorry for myself on here or elsewhere.

Time for me to get back to work!