15 January 2013 – The Future (Cancer and Me 21)
The bit that’s been difficult getting used to is having a type of cancer that the doctors admit is practically incurable. Obviously being told that treatment was only going to be 6 lots of mild chemo, rather than 4 rounds of strong chemo plus a stem cell transplant involving 2 weeks in isolation, was somewhat good news. However, we never really knew whether to take it as good news, because the sting in the tail was always that I will have to be treated for this on and off for the rest of my life.
The fact is that Diffuse Large B Cell Non-Hodgkin’s Lymphoma is curable. Follicular Non-Hodgkin’s Lymphoma is not. But on the other hand if you don’t treat the former you’d be dead in weeks, whereas Follicular Lymphoma can be left sometimes for years without being treated. So with the former they always go all out for the cure. With the latter they have to balance the positive and negative effects of the treatment, so that your life can be prolonged whilst maintaining a desirable quality of life. It’s no good, so they say, giving you intensive treatment, knocking you out, if you are just going to relapse and need more horrible treatment in 5 years time. Better to give you milder treatment that doesn’t adversely affect you too much, even if you relapse only 3-4 years later.
The other thing about Follicular Lymphoma is that it can transform into a high-grade lymphoma. There seems to be about 20% chance of that happening, as far as I can tell. And obviously it’s already happened to me. And there is no reason why it shouldn’t happen again.
So there are two further things in the pipeline for me so far, now that chemotherapy has come to an end.
First, I am being referred to Southampton hospital for them to possibly harvest my stem cells. The idea is that, whilst they don’t want to necessarily do the autograft now, they might as well harvest my stem cells while my stem cells are healthy (having been cleansed by the chemo). It’s called a ‘rainy day harvest’, because they would keep the stem cells on ice ready for a ‘rainy day’. So in the future if they ever decided to actually do the stem cell autograft they could go straight for BEAM and then inject my healthy stem cells. It would speed up the process, and mean that I wouldn’t need so much chemotherapy in future.
However, they may not do that, because they’ve apparently been reviewing how many times they have actually used the stem cells taken in a ‘rainy day harvest’, and that is apparently close to never! We shall see!
Second, I am definitely going to have, God willing, Rituximab maintenance treatment. That means I have to go into hospital for a couple of hours every two months for two years to be given Rituximab only. It hardly has any side effects on its own, so it’s a fairly good treatment.
Apparently Rituximab maintenance gives an extended period of remission. I guess the reason for that is that I was told that follicular lymphoma lies dormant for a while, so it can hide without any visible effects. So, given over two years, Rituximab can hunt down the abnormal cells when they have just become active and shut them down quickly.
There are other treatments being developed, so I’ve read on various websites. So who knows which of these I might end up having in the future! And maybe the chances of a cure may increase.
I’m always tempted to say that one day this lymphoma will definitely catch up with me at some stage in the future. Since it is not curable, there is bound to come a time when the treatment is no longer effective and it gets me. Reading the statistics I could be 60-65 by then. But even that doesn’t seem very long. What would be the point in saving for a pension!? But on the other hand, so many advances in treatment are being made that within the next 20 years we will probably have much more effective drug treatments, and perhaps some that might stave it off until I am much older.
But even if I convince myself that 20 years is a long time, and that new treatments may come available that will make a cure a realistic possibility, I still have to get used to the long shadow that this disease will necessarily cast on my life. If the last bout affected our mind-set in a lasting way, this will do so even more.
But, hey, I don’t want to finish on a low note. I am sure that whatever God has in store for me will be for my good, and I shall take one step at a time with His help. As John Piper said: “‘His mercies … are new every morning’ (Lamentations 3:22–23). Why are they new every morning? Why does God do it that way? It’s not because yesterday’s mercies were bad or weak. It’s because they were yesterday’s. Yesterday’s mercies were for yesterday’s burdens. Today’s mercies are for today’s burdens. They are new every morning. They are like the manna in the wilderness: you can’t keep it overnight. Enough comes for each day. You live on God day by day, or you don’t live on God.” (Sermon, 13 March 1994)
So this brings me right up to the present day. I have the consultation about the stem cell harvest next Monday (21 Jan 2013), my bone marrow biopsy the Monday after that, a CT scan the week after that (6 Feb) and then a catch up with the Basingstoke haematology consultant the week after that (13 Feb). I even have an endoscopy to go in for on 11th Feb. After all that, maybe mid-March, I will have the first of my maintenance Rituximab treatments. I’m costing the NHS, and therefore all you UK taxpayers, a lot of money. And I am very grateful that we have a National Health Service! I’m very grateful that people decide to be doctors, that cancer research is progressing so well, that I have such caring and loving friends and family, and that I am currently healthy and feeling generally well.