Category Archives: Rituximab maintenance

This is the end…

No, not that end, but the end of this blog.

And that’s because there is nothing left for me to say on it. After 10 years, it’s job is done.

I am well.

I have actually been well since the end of my chemotherapy in 2010, but it’s only after several years than one can be sure. As time, and research moves on, it is becoming clearer that, for the lucky ones like me, there may be a “cure” for B-Cell Follicular Non-Hodgkin Lymphoma after all. Cure may be too strong a word, but “remission long enough to get you to the end of your life anyway” is how I am looking at it.

Basically, there is a proportion of the population with this who respond extremely well to the chemo and fantastic treatments currently available. Some 80% of patients survive 24 months without relapsing and needing further treatment, or unfortunately, dying. If you can get beyond that 24 month period, then it seems that you are more likely to never relapse. I will be 10 years from the start of my treatment in February and am confident that I am through this now.

Rituximab, as I have said before, has been a game-changer and the newer versions are even better. Great news is that Rituximab is now off-patent and available at a much more reasonable cost, so hopefully more people around the world can benefit. But, thanks to the people at Roche who needed the high price to bring it to market in the first place. Let’s hope that the research ongoing today brings forward better and better treatments.

I will still see my consultant going forwards, but only once per year instead of every six months, but can foresee a time when I will stop that too.

I wouldn’t wish this on anyone, but I am thankful for all the people who treated me and supported me when I was ill. And I hope that someone with NHL reading this has got something out of it – that was one of the reasons for starting it in the first place.

Now, it’s time to look forward to a great holiday in the US in the Autumn celebrating Ann’s birthday, our first ever Christmas away from home and a couple of trips booked for next year too.

But most importantly, our daughter’s wedding in a couple of month’s time. It’s going to be a great day.

I will leave this blog with a couple of photos taken a fortnight ago near the Severn Valley Railway, near Kidderminster. What a beautiful spot this is.

Severn-Valley-Railway

Poppies

Thank you.

 

 

PS – Since Flickr now have a policy of restricting the number of photographs on their site and Apple have stopped iWeb, I might set up a photography page on here. I will add a link if I do.

My life is worthless (well, sort of). And the toppest Top Tip you might ever read.

That’s a bit of a dramatic (over-dramatic) headline, but, according to pretty much all the life assurance companies in the country, it may as well be true.

As part of the house move, the mortgage is going to have to increase. Consequently, I have been making enquiries about increasing life assurance. We currently have insurance to cover the mortgage we have now, but I thought I would take out a new policy to cover the new mortgage and some spare, so that in the event of the inevitable, it would be paid off and my Merry Widow could take that year-long round the world cruise…

Unfortunately, a pedalo on the lake at Hove is about as close as she will get. I am uninsurable.

With a pre-existing condition, I knew that life assurance would be a challenge, but basically the insurance companies don’t want to know. They won’t even cover me for any other cause of death, excluding the lymphoma.

The best they can do is insure me after 4 1/2 years of remission. In my case, they take that to run from the end of the maintenance, which would be at the end of 2016. So, we will revisit this at the end of next year. 

The trouble is, of course, that 4-5 years is the typical length of remission before becoming symptomatic again. With the benefit of the maintenance, that should be longer in my case, but who knows. Cleverly, the insurance companies have made the condition for getting insurance pretty nigh impossible for a lot of people. By the time they get to be in a position where they have been long enough post-treatment, they will be needing the treatment again… Clever.

I will therefore have to rely on the death-in-service benefit through my work to cover the mortgage in the event of me shuffling off. Which is OK, but that money should be used for something else. Like that cruise.

So, to the Top Tip.

Please, please, if you can afford it, buy enough life assurance AND critical illness insurance, while you are young and fit. Or even older and fit. And, if you can afford it, DO NOT STOP PAYING THE PREMIUMS. I had critical illness once but I let it drop when we moved north and were strapped for cash. If have posted before that life would be very different now if I’d still had that insurance. 

There. That’s a word from the “wise-after-the-event”. And you can have that tip for nothing. Don’t leave yourself with nothing when you need it…

Unprocessed film and news from my recent consultation

The fact that there was still an unprocessed film from my week in Cornwall at the end of June is testament to the amount of pleasure I am getting out of my photography at the moment. I am hoping that a forthcoming visit to France and Istanbul will get the creative juices flowing again.

However, given a very rainy Bank Holiday Monday, I finally got round to processing the film. Not very successful, I have to say – the processing was fine, it’s what I found when I’d done it that was a bit of a disappointment. I managed to scrape together a couple of shots from the roll, so I thought that I might as well put them on here.

The first shot is of Mevagissey. I am pretty sure that there’s a colour one from there on posts from June, but this is obviously a black and white version. The colour is better, since it’s a colourful place, but never mind that.

Mevagissey

The second is from Port Isaac on a day which probably gave us the worst weather of the holiday. Either heavy rain or horribly overcast. But, beggars can’t be choosers and it’s too far just to pop down to take advantage of good weather.

Port-Isaac

Since my last post, I have been to see my consultant for a regular 4 monthly check-up. 

He has slightly changed his story with regards to what he could see on the CT scan from last year, but it doesn’t materially change anything particularly. He does want to do another scan in December and will send me an appointment nearer the time. He is proposing to do further scans “over the next few years” and then stop doing them until he thinks it necessary again. These series of scans will be used to act as benchmarks against which future, but not so frequent, scans will be assessed.

This is a good thing for a few reasons, but mostly because he obviously expects me to still be alive in a few years after he has done the series of annual scans.

I asked him about “remission” (or “partial remission” in my case) and when that would normally be measured from. This is from the end of the chemotherapy that has caused the disease to shrink. It ignores the maintenance, because that is intended to just increase the remission period. That said, he suggested that there is some evidence to say that the Rituximab maintenance can also continue to shrink the disease during that period. So that’s also good news.

What this means is that I have now been in “partial remission” for four years and with no sign of the disease returning at the moment, this is another successful visit over and done with.

Steady as she goes, once again. Keep on watching – and waiting…

Twitter is rubbish and brilliant. At the same time. Lymphoma news I couldn’t easily have found elsewhere.

Two updates for the price of one, today…

I’ve been on Twitter for a few years now. At first I just couldn’t understand what it was all about, but as it grew and by following friends that I knew who had migrated from elsewhere on the internet, I soon got the hang of it. It has rapidly grown into one of the biggest wastes of time on the internet (as if that wasn’t bad enough in itself) and also one of the most useful.

If you have an interest in tropical fish, or cabbages, want to know what’s happening in your town, or Liverpool Football Club (other teams’ Twitter feeds are available, apparently..) you can do so easily just by following individuals and companies on Twitter. The same is true of Facebook, but there are massive privacy issues on there that Twitter have so far, for the most part, resisted adopting. Long may it remain so.

So, by the judicious following of a couple of organisations, I have learned some interesting things over the last couple of weeks.

For example, Lymphoma Research have recently posted a link to an article on “Reduced intensity treatment in early-stage Hodgkin’s lymphoma” which, although not directly related to the lymphoma that I have, was an interesting read nonetheless.

Another source, Non-Hodgkin’s Today have lots of useful links, such as this one comparing cancer survival rates across various countries and this one on the “The evaluation and optimal use of rituximab in lymphoid malignancies”, something that is definitely relevant. There was this one, from a couple of months ago, about a new drug from a company called Gilead, which is being tested right now for those people who are no longer responsive to Rituximab.

All good stuff and very difficult to find if you are not pointed in the right direction.

This is very worrying…

I picked this up via a Tweet from a group called @Hodgkintoday who pass on snippets and links to research in the field.

This early study links the use of Rituximab to an increased risk of melanoma.

http://www.karger.com/Article/FullText/350681

Now, there are side effects to pretty well any drug that you can think of, but it would be a supreme irony if one were to get a melanoma as a direct result of taking a drug to assist in a different cancer.

One to ask my new consultant next week, I think.

Working while on holiday (revisited)

With thanks to my friend AF for the link, here is an interesting article about the wisdom of keeping up with office work while on holiday.

Staff holiday – why it could be bad for business

I have posted about this before, while I was on leave, and it is interesting that professionals in the insurance and HR industries are thinking about the effect that this has on people.

Still deciding about two weeks next year, but I will take soundings from those colleagues who have been taking split weeks as well as those who have completely left the office behind for two (or more). What I have noticed is that some of the more senior staff within the organisation do tend to go completely off radar while on holiday as do those who read The Guardian. Maybe I need to reconsider the Blackberry in the bag next time, or at least have the email function switched off.

On the other hand there are others with whom I work who refuse to check emails while on leave, then complain that it takes two weeks on their return to catch up with themselves, while in the meantime, decisions get undecided and progress on projects slows. And their stress levels get turned up to 11.

What I did notice myself, having been keeping up with emails, is that I didn’t really feel that I got the best out of my holiday.

I don’t think that there is any easy answer and I don’t think that there is a right answer. But keeping the balance right is the important thing.

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…

A long, long time ago

I wrote the last entry here. And quite a lot has happened that I really should have written about before, but will now play catch-up.

Last time I was looking forward to Copenhagen, about which more later. I have also had the first of my 3-monthly watch-and-wait checkups. Finally, I got to see the results of the CT scan I had in August. As my haematologist had predicted, the CT scan showed no sign of enlarged lymph nodes, which proves that both the chemotherapy I had in 2010 and just as importantly, the maintenance therapy that finished in July have both done their job. This is excellent news and means that I can, with a bit of luck, look forward to two or three years of respite from the treatment. I just have the watch-and-wait to think about.

The bad news is that my “man” is emigrating to Australia. Since he was the first sensible consultant that I saw, back in 2009 and has been instrumental in my treatment plan ever since, I am a bit disappointed. Very selfish of me, of course, as he is going to take up a Head of Department job in a large city main hospital. And it’s in Australia. Even BUPA aren’t that generous. So, in the New Year I will have to find myself another consultant. I will have one more check-up with him at the end of January, so maybe he will have a plan of action then. He did say that the next time I needed treatment, he would refer me to the Christie in Manchester, under one of their professors, but whether that’s necessary for check-ups, I doubt. I will have to do some digging around myself, I think.

Now, then, Copenhagen. Cue a song with “Wonderful” in the title…

It is a wonderful city. The hotel we stayed in, the Copenhagen Strand was clean, comfortable and very well located. A bit pricey though, especially since breakfast (which was very good) wasn’t included in the rate for the room. We were close to Nyhavn, the real hub of the tourist area and the scene you imagine when thinking about Copenhagen, if that scene doesn’t have a mermaid in it. In fact, it looks a lot like this.

The quayside is wall to wall bars and restaurants, with some sort of dodgy looking club thrown in the middle for good measure. There is another hotel right at the end of the row and plenty of ships and boats moored alongside, some of which appear to be actually working.
Kulturnatten was a bit of a let down, I have to say. The bits we saw were more like any Friday night in Liverpool, but I’m sure that if you are a native, or least a Danish-speaker, things might have been more interesting.
Apart from the weather, we did have a very good weekend, but boy, is it expensive there. It was rare to get a two course meal with a bottle of wine for under £100, but we did eat in some interesting places, including Cap Horn, one of the restaurants on the strip above. I braved a herring starter – and wish I hadn’t – but the rest of the meal was very good indeed and the place has a terrific atmosphere. We walked past Noma, one of the world’s top 5 restaurants, but unfortunately it was closed. Also fortunately, we hadn’t booked 3 months in advance either, so that wasn’t a problem…
Finally, the mermaid isn’t worth the walk in pouring rain. She might be worth it on a sunny afternoon, though.
All in all, a good weekend, even if the One Challenge competition proved to live up to its name once again – winning in Berlin seems like a very long way off now…
And now, at last, it’s wedding time. 10 days to go and we found out today that the bride-to-be was in hospital last week with pneumonia… What a great way to start your preparations! As far as I know, however, all that side of things is properly sorted out and all planned and ready to go; we will find out the truth this Sunday.
All suits and shoes and dresses and handbags are bought. I do need to organise a decent taxi to take us to and from the hotel, though – a job for Saturday morning, I think.
There, that’s it since the end of September.