Negative and Positive thoughts after the Lymphoma Association AGM

I had the pleasure of attending the Lymphoma Association AGM and Conference in Guildford a couple of weeks ago. This was my fourth conference and this one was the best yet.

One of the speakers did a presentation on “Watch and Wait”, a subject too close to my heart, suggesting that the longer that one is on this particular regime (i.e. do nothing but attend regular clinics and wait until symptoms appear) the easier it gets. Well, I have to tell them that they are wrong. It doesn’t. As time progresses, the waiting becomes more onerous. Someone else at the conference described it as “Watch and Worry” and, while I don’t necessarily worry about it, I am somewhere between a worrier and a waiter.

I am finding that, knowing the typical progression of the disease (as I described last time), it becomes increasingly obvious that the months are going by at a rate of knots. It seems like only a week since my last blog entry, but at the risk of repeating myself, it’s actually a month away now. So, contrary to the advice of the speaker – who was not a sufferer themselves – this particular patient is not finding it easier over time. Yes, I know that there are some people who have been on “Watch and Wait” for over 20 years – poor sods – and I know that I am young and relatively fit so some of the stats might not necessarily apply to me, but that doesn’t make it any easier. However, it is important to think positive and remain optimistic. The conference was very good at providing good cause to be so.

It was very well attended this year – over 200 people in the audience. As I have found in the past, the most interesting and relevant presentations are those which give a brief insight into upcoming treatments for lymphomas. I would hazard a guess that for the vast majority of attendees, be they sufferers or loved ones / friends, the most important aspect of the event is to know that there are some very clever people around doing extraordinary work, to make our lives better for longer.

One particularly interesting development, to go along with the established treatments and those that are coming through already (such as the Zevalin I have written about before) was that of the use of genetically modified T-Cells. T-Cells are part of the immune system, with one type of T-Cell being especially good at killing rogue cells. The use of other people’s T-Cells can be very effective at killing your own lymphoma cells. But… the problem is that they kill other cells too, including those in the liver, skin, gut and elsewhere. This is not so good.

However, by genetically modifying the patient’s own T-Cells, which would normally not attack other host cells, this problem can be overcome.  The technique was described as a bit like the addition of the Rituximab marker to the patient’s T-Cells, so that these cells would only latch onto the diseased lymph cells, and no others. This all seems very exciting, and having been used for other kinds of cancers, trials for lymphoma treatment start in 2014. This is extremely expensive medicine and would only be used as a treatment of last resort in the medium term, but it does sound very exciting.

I do think that genetic medicine really is going to be a massive contributor to the wellbeing of the population during this century. Now that the cost of doing a full genetic map of an individual has come down in cost so dramatically (they are talking about getting down to £100 per individual soon), treatments specifically tailored to an individual on a genetic level will soon become a reality for normal people. Whilst it is already possible to work out the genetic composition of an individual’s lymphoma, and put together a specific treatment regime for that, the costs are prohibitive. Maybe, this is all about to change.

I hope so. And if that’s not positive news worth thinking about, I don’t know what is.