Category Archives: Zevalin

Maurice Saatchi, cancer and innovation

As someone who might not even be here if it weren’t for people prepared to take risks, innovate, test, retest, lose battles, win battles and all the other cliché-ridden phrases used in the “fight” against cancer, I read with some dismay this piece in the Telegraph by Maurice Saatchi.

Without innovation we will never cure cancer

He is absolutely right. Innovation and free thought, unconstrained by the threat of litigation if something goes wrong, will find us closer to this futile goal. I don’t believe that we will ever cure “cancer”. Which cancer? There are hundreds of them, thousands, probably, and with an ageing population more and more of us are going to get it.

BUT, we will never even begin to get closer than we are without us all being prepared to take risks, either for ourselves, our patients or our fellow man.

If and when the time comes and I am asked to join a clinical trial for a new treatment, after some careful consideration, I am most likely to say “Yes”. I owe it to myself, my fellows who also live with this disease and those who are to come. But also to those who have gone before. The mustard gas victims  Those who were prepared to try new drugs and treatments before me – they are the ones to whom I owe the biggest debt.

As my blog title says, it’s “My turn this year”. One year it will be my turn to step forward and make my own contribution to this process.

Provided they are still allowed by law to innovate of course…

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.

Buddies, Zevalin and 500s

Yet another May has come and gone and a catch-up is in order.

The annual Lymphoma Association Conference was held in Manchester on 16th. This is the third one that I have attended and as always they have proved very interesting. All day sessions, with extremely good presentations by some of the top lymphoma specialists in the country always give you something to think about.

Over lunch, I enquired about the “Buddy Scheme” that the charity run, whereby a member makes him or herself available to speak with other people who would like to talk over the condition with someone else who is suffering with it, and who has been through some of the same emotions or doubts that they are. Having now discussed it with the buddy co-ordinator, I will definitely put my name forward this week and see how we get on.

There are some very interesting new developments in the treatment field as always, and while they are still a long way from a cure for NHL, the management of the disease gets better every year.

My penultimate maintenance session was on Wednesday, with the last one at the end of July. By then, I will have been attending at the hospital either three weekly, or bi-monthly for two and a half years. Since coming off my “watch and wait” period, at the beginning of 2010, I have had pretty much constant regular support from the consultant and the specialist nurses there. What is going to be different and potentially more difficult, is going back onto the “watch and wait” regime in the autumn. Even when you know that this is the right and appropriate course of action, what it actually feels like is “inaction”. You really want to feel that “something is being done”. However, research shows that there is no benefit at all to either continuing with chemotherapy or indeed maintenance when the disease has settled down and there are no symptoms.

I will need to have a CT scan on completion of the maintenance (mid-August, probably), so that we have a new base-line against which I can be judged, and I will need to attend clinics every three months, so I am not entirely on my own (with regards to professional support), but it will certainly be a change to the routine.

As I have said before, typically, it should be around 3 years from now that I can expect to bumble along before the symptoms return and more chemo is needed. Who knows what the recommended treatment will be then. Zevalin appears to be gaining in “popularity” at the moment. It’s a little bit like the Rituximab, in that it has a component that attached to the CD20 markers on the cancerous B-cells, but it then has a radioactive element that damages the DNA of the cell and kills them. The advantage of this kind of treatment is that it only targets the cancerous cells, as they are the only ones with the CD20 marker. On the other hand, it’s powerful and dangerous stuff, with some interesting side effects. From the Zevalin website:

“The most common adverse reactions of ZEVALIN are: decreases in blood counts, tiredness, abdominal (stomach) pain, nausea (upset stomach), inflammation of the nose and upper throat, weakness, diarrhea, cough, and fever. Common adverse reactions (≥40%) in clinical trials were: low neutrophil count (a type of white blood cell), decrease in number of white blood cells, decrease in platelets, decrease in red blood cells or hemoglobin, infection, lack of body strength and energy, muscles and bones symptoms, and stomach and intestinal symptoms”

So, that’s something to think about 🙂 But, let’s face it, when you are dealing with anti-cancer drugs, none of them are benign and they all tell you that your life could be a misery for a while. Better that than the alternative, though. The CEO of the drug company that makes it said, only yesterday, at a conference in Chicago:

“There is no drug (approved) that is single-dose treatment for cancer,” Shrotriya told IBD in an interview Thursday. “The new data from Europe shows that, in fact, Zevalin could be a single-dose treatment for follicular non-Hodgkins lymphoma, without the typical side effects of chemotherapy.”
So, that’s actually pretty encouraging, really. There are some clever people about, that’s for sure.

We picked up the new Fiat 500  couple of weeks ago. The Twin-Air engine really is seriously good and the ride and handling have been greatly improved since the previous one. All in all a great little car.

My Golf has just gone through 70,000 miles today and it’s not yet turned its second birthday…
Jubilee Weekend this weekend which is getting everyone very excited. Or not as the case may be, and I have to say that the Olympics really are starting to get on my nerves now. Only two more months to go and they’ll be nearly over. Still, Mum’s birthday dinner is also this weekend, so it will be good to have everyone together for the first time in ages.
And finally, it’s only 3 weeks until it’s annual leave time.
But, let’s not wish our lives away just yet. Eh?