Watch and wait explained

Some of my friends and colleagues are finding the course of “non-treatment” that I’m currently on for mantle cell lymphoma a little disturbing. I admit that I did too at first, so their reaction is entirely understandable. My natural inclination is to want to get on with things but in the case of MCL, particularly the indolent version that I seem to have, immediate treatment is not always the best course of action.

This lunchtime I’ve read the information published by the Lymphoma Association about watch and wait. It’s reassuring and it contains a paragraph that sums up perfectly my attitude to being on this regime at the moment.

 

People who have been on watch and wait say that the best thing to do is to try and make the most of each day. Live well while you feel well. See the people you want to see or do the things that are important to you. Think of watch and wait as a chance to maximise your quality of life – to actively take good care of yourself rather than passively waiting for treatment to begin.

 

And of course it’s great advice anyway, even if you don’t have lymphoma!

 

I was diagnosed with mantle cell lymphoma in the summer of 2014. If you’d like to make a donation to the work of the Lymphoma Association, this explains the many different ways that you can do so.

 

December

The good news from the hospital this week is that I still don’t need to start chemotherapy and that I won’t have to go back for more blood tests and general proddings until December. Hurrah!

The only slight concern has been with my ALT blood tests that are reading slightly over normal. As a result, I’m now using the Drinkaware app to help me keep a closer watch on what I’m drinking. I’m not a heavy drinker, but I probably have been enjoying a glass or two of wine rather more frequently than I should have been doing. I’m pleased to report that signing up to the app has helped me to achieve three ‘no alcohol’ days so far this week and that I’ve consumed a miserly 1.6 units since Monday.

 

Watch and wait

Some good news!

While I’ve been told that I will definitely need chemotherapy and a stem cell transplant to treat my lymphoma, for the time being the plan is to “watch and wait”. At the moment, only a small number of lymph nodes are affected and there’s no trace of the disease in my bone marrow. The hospital will keep seeing me every few weeks so that any change in status can be picked up and acted on quickly. This means that I will get treatment at the optimal time for prolonging any remission.

This grace period might only be for a few weeks, but it could last months or even for a few years. There’s no way of predicting the time that remains before treatment will need to start, but the further away that is the better I think.

 

 

Uncomfortable

Having spent rather more time that I’ve wanted to with the medical profession over the last couple of months, I’ve noticed the way that they use language is sometimes just a little different to the way the rest of us do.

Take the word ‘uncomfortable’. Recently we’ve replaced our mattress because, as it was several years old, it had become somewhat uncomfortable to sleep on. It wasn’t painful to sleep on the mattress, but it certainly wasn’t as cosy as it used to be. So I thought I had a pretty good handle on what ‘uncomfortable’ meant. For example, this looks pretty uncomfortable to me:

 

However, having recently undergone a bone marrow biopsy, I now realise that the medical profession use the word ‘uncomfortable’ in an entirely different way to, well, everyone else I’ve ever met. Whenever I’ve been told that something will be uncomfortable, what they’ve actually meant is that it will really sting while we’re doing it, and will probably remain sore for several days afterwards. I really never, ever, want to hear that something they’re about to do to me is going to hurt – even a little!

The second word I’ve been thinking about is ‘carer’. While booking a flu jab for us a couple of days ago, the surgery asked my wife if she was my carer.

Its use threw both of us off balance temporarily. While I understand why that word was used, it somehow doesn’t seem appropriate in my current condition. When I get really poorly from the chemotherapy, then yes, I may need a carer.

But at the moment, while I’m still relatively well, hearing that word used feels – how should I put this? – just a little bit uncomfortable.

 

A change of speed?

I went back to hospital yesterday for the results of my PET/CT scan, bone marrow biopsy and MUGA scan, expecting them to be a simple ‘box ticking’ exercise to enable me to start chemotherapy this week. Well, that’s what I’d been told to expect. I’d cleared my desk at work and handed over everything that I was working on to colleagues, had received confirmation of the postponement of my MSc for a year and talked to the family about what the next few months were likely to bring. Everything in my life was as neat and tidy as it ever gets!

However, the results of my tests seem to have created some questions about how best to proceed. Part of the bone marrow biopsy wasn’t back, but the part that was suggests that my bone marrow is clear. The PET/CT scan shows tumours in and around my neck and shoulders, as well as in the groin, but no sign of anything in the upper or lower chest. My MUGA scan (heart function) and bloods are normal. I’m also not displaying any of the ‘B’ symptoms, apart from a little fatigue at times. But as I’ve also had my mother’s funeral to cope with in the last few days I suppose some tiredness ought to be expected.

So my treatment plan is now being reviewed and I have to go back next week for more discussions. It seems that waiting until the MCL develops further before being put through chemotherapy is an option, as the evidence seems to show that there is little difference in outcome regardless of the stage the lymphoma is at. This is very different to other cancers of course – where early detection and treatment is vital.

The chemotherapy regime for MCL looks brutal to my untrained eyes. The hospital believes that as I’m fit and (relatively) young, the Nordic Protocol, followed by a stem cell transplant will give me the best chance of long-term remission. The follow-up evidence from the clinical trial in Scandinavia pioneering this treatment, published in 2012, seems encouraging.

A change of speed, a pause, could be worth taking. Because of the toxicity of the treatment, the potential side effects and the length of time it takes, I can only have the treatment once and it is impossible to back out of once started.

I’d mentally prepared myself to starting chemotherapy sooner rather than later and felt pretty confused while all of this was being explained to me yesterday. However, on reflection, if I can grab a few more weeks or months of feeling well before starting out on this path, then it seems obvious that I should take it. But, of course, it may all change again next week once the hospital have had a chance to discuss my case again in the light of the missing part of the bone marrow test result.

 

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!