Tag Archives: NHL

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.

An evening with The Speaker

That was quite an experience, but as I had hoped, an interesting one. Tonight was the night I gave my little speech to invited guests at Westminster as part of the Lymphoma Association’s launch of a new policy/lobbying document.

They are raising awareness of the long term psychological impact of being a “survivor” in order to try to get more support for those that need it. They have used my story as part of the document and asked me to tell it tonight.

On arrival at Portcullis House, the working offices of most MPs, queuing for about 20 minutes before going through full airport security to get in, we waited in a holding area until being ushered through the tunnel to the Houses Of Parliament and into The Speaker’s quarters. This isn’t where he and his good wife live, but the public rooms below. They are, as you would expect, very grand with high ceilings and very nice wallpaper, courtesy of a previous occupant of the position. Paintings of some of the previous Speakers look down on you – literally and figuratively I suspect. It will be the wigs that do it.

The Speaker himself joined us and introduced the event, which consisted of several short speeches by the Chief Exec and other members of the charity board. And one from me.

All in all, it was a good evening and I had some very nice feedback from people in attendance. Surprisingly, I didn’t feel nervous, although friends from Manchester support group said that I looked it (!) and all in all it was an interesting thing to do. Let’s hope that those there in a position to help actually do so.

I had a glass of The Speaker’s wine and some of his sausages on sticks, so that’s all good.

Unfortunately… the train home has been delayed by half an hour due to a “medical emergency”. I’ve never seen anyone having CPR for real before, so having to swap trains is actually a minor inconvenience compared to what that lady was going through. I hope she’s OK. Will have missed the last tram back to the office now, though, so it will end up a very long day.

Now… Where’s the tea trolley?

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.

“No Residual Disease”

This is the 200th post on this blog and I am very pleased that I am able to share some remarkable news.

On Wednesday, I contacted my new Consultant to ask him whether he had received the result of the CT scan from the previous week. He hadn’t, but he called me back about 10 minutes later.

“We can detect no residual disease in this scan. Have a good evening!”

No Residual Disease.

No Residual Disease.

I have taken a couple of days trying to get my head around what this might mean. As I posted at the beginning of the month after my first consultation with him, this “could mean that there really is no disease left, which would constitute being cured.”

No Residual Disease.

The dodgy report done in August 2012 said the same thing (once you’d read between the lines to understand what it actually said). Now, 12/13 months on, there is another, much more reliable report which says the same thing. Equally importantly perhaps, there has been no change in this condition in the last twelve months. NHL is a slow-growing, indolent disease that usually takes its time before causing you any problems. It can take years to show up, especially if it’s growing in the abdomen, where lots of other stuff is going on at the same time. Given that I have already been treated for it, and the usual prognosis, one might expect that any very small pockets of disease that evaded the chemo might have started to grow again by now. This is, after all, one of the reasons why my new man did the CT scan this month – just to check on the disease that cannot be felt manually, in the abdomen.

So, this is out-and-out good news. The best news that I could possibly have hoped for after this scan.

But…

I cannot count my chickens. If this really is true and there really is no further disease at all, then it is remarkable. NHL doesn’t work like that. I was told that it wasn’t curable with at the Stage that I presented with four years ago. It’s manageable. Treatable. But not curable.

On diagnosis, I  very quickly came to terms with the disease and what it meant for the rest of my life. I accepted the fact that I would need treatment over a long period; treatment that would make me sick and which would be unpleasant. I was OK with that and would have done as I was told when told to do something, even if it was to attend hospital and take some more medicine. Now, where does this leave me? This is not quite the same as being diagnosed with something like breast or bowel cancer. These organ / body-part specific cancers can, with some luck and good care, be properly cured and be gone for good. After 5 years (or whatever the period is), you can be pretty sure that it isn’t going to come back. NHL isn’t like that. It hangs around forever.

I now need to re-assess what this means in the medium to long term. IF it’s gone for good, then that’s brilliant and remarkable news. But a part of me, quite a large part of me if truth be told, doesn’t believe it.

The thing is, we will never know if it’s gone for good until I die (of something else).

I will make an appointment next week to see my man before Christmas and will discuss with him in person, what the implications of this report really are. And in the meantime, I will continue to try to live my life as if this was the last day of it.

But ‘Watching and waiting” no more

Nothing to worry about, but one thing that I forgot to mention when I updated recently on the meeting with the new Consultant was his view on ‘Watch and Wait’. This is a subject very close to my heart, as I have mentioned many times before. As I went through my history with him, I got to the end of the maintenance period and then said that I had gone back to ‘Watch and Wait’.

“Oh no, you are not on ‘Watch and Wait’ any longer.” he said, “You are now on ‘surveillance’ ”

It now seems that the waiting part only refers to the wait for your first symptoms and first treatment. Once you have had treatment, you are no longer waiting for it. As such, you are left with just the watching part, hence the new status of ‘surveillance’.

Semantics, I know. But, does it make any difference to the way that I feel about this current period in the process? No, not really. The waiting for something else to happen hasn’t suddenly disappeared; it is just no longer mentioned. Almost as if it’s being ignored, as if it’s unimportant. Which is a bit odd really, because that’s not how I feel about it.

Let’s see what happens after the CT scan. That might put things into a better perspective.

The Good. The Bad. And the something in between

The Good
The meeting with the new Consultant went very well. He’s very professional of course, but affable enough with it. I am sure we are going to get along just fine and I was “worrying” unnecessarily last week.
He took a full history from me and was grateful for the brief notes that I gave to him. We discussed the whys and wherefores of what treatment I have already had and he confirmed that the RCVP and maintenance are the “Gold Standard” of first line treatment for my NHL. Not that I had ever doubted that. So that’s good.

The Bad
He had lots of notes from my previous hospital too, including the (brief) report on the CT scan that I had 12 months ago on completion of the maintenance. He was less than complimentary on the standard of the report and showed some of it to me. There were some paragraphs that just didn’t make any sense at all, explained by the fact that the report had been done on-line by someone in India. It is, of course, common to send work off-shore these days, but I am a little unhappy that my previous consultant didn’t similarly question the content.
I was told at the time that the report made no mention of any significant disease. I now learn that there was no sign of any residual mass within the abdomen. The new consultant finds this “a little odd”. This is potentially a worry…
He explained to me that it might not be bad news though. It could mean that there really is no disease left, which would constitute being cured. But NHL is not curable when it’s got to the Stage that I had at the beginning, at least that what I was told. He said that it would be extremely unusual if that were the case. Much more likely is that the person in India didn’t read the CT results properly…
So, he is going to do another CT scan so that he can confirm the position for himself, the worry being that the disease in the abdomen can progress without any external symptoms and cause problems for the kidneys or arteries and veins. If there is disease there, he may recommend some radiotherapy to deal with that, without further chemo at this stage.
I was also informed that the radiotherapy that I had four years ago to deal with the lymphodema in my right leg, was done to the wrong lymph node. It should have been done to disease in my abdomen, around my aorta and that would have most likely dealt with the leg issue.

The something in between
So, how do I feel about this?
I am pleased, of course, that the chemo and maintenance that I have enjoyed are the right thing to have done.
I am not pleased that I had unnecessary radiography to a part of my body that didn’t need it.
I am not pleased that the competency of the person employed by my local hospital has been so strongly questioned – questioning that should have been done at the time by my first consultant.
I am also pleased that my new man clearly knows what he is doing and wants to get things right on my behalf from now on.

Let’s hope that I might just be that one-in-million people who have been completely cured through the chemo. He might even write a paper about me…

On being a “buddy”, stress and what it might do to you

Regular readers will know that last year I volunteered to be “Buddy” for the Lymphoma Association. When I had my training back in March, they said it might be some time before my first contact, but this week I was emailed by the co-ordinator and given my first buddy. (Actually, I am the “buddy”. I’m not quite sure if the term for the “buddy-needer”, but it doesn’t matter)

They called last night and we had a very good chat for about three quarters of an hour. The co-ordinator tries to match people who would like to speak with a buddy to buddies with the same or similar experience and I have to say that they did an extremely good job this week.

The person who phoned had recently been diagnosed with the same kind of NHL that I have and is going to have their first chemotherapy in September, after taking a short holiday. What struck me about this person’s history was that it was very similar to mine, especially in one important respect. They hadn’t taken any annual leave at all last year and very little the year before.

Now, I have been going on about annual leave, working while on leave and the length of leave taken recently, but that’s partly because I too had a period a few years ago when I couldn’t take the annual leave I was entitled to. About ten years ago, I had taken a new job as a Director of an office and found myself in an incredibly stressful situation. Two of my colleagues left within three months of me starting and the finances of the office were such that I couldn’t afford to employ anyone else to take their desks. I ended up doing three people’s work and running the office too. I would work until half ten at night and at least one day of the weekend, just to keep up. That year I had about 6 days annual leave – if I did want to take a day off during the week, I would have to work the weekend to make up for it. My health definitely suffered (although I didn’t know by how much at the time) and I was glad to get out. It did take me just over three years though. So, now, I do make sure that I take all of the annual leave that I am entitled to each year and do my best not to carry any over.

My buddy contact had a similar story.

Now, as far as I am aware, there is no known cause or particular reason why any individual might develop lymphoma. It’s not a cancer that has a common cause, such as lung cancer, it just happens sometimes to some people. I also know that two people having a stressful job and having the same disease doesn’t mean anything statistically, but it was an interesting aspect of the chat we had last night.

What is also interesting is this story that was published yesterday.

The Stress and Cancer Link: ‘Master-Switch’ Stress Gene Enables Cancer’s Spread

So, I have made a decision. Sod the Blackberry. Sod the emails. Sod work. Next year, I will take a proper, two week holiday, without any of that crap. The world won’t end without me. It might even be good for my blood pressure, if nothing else.

And if you are reading this, and don’t take your full holiday entitlement, or work stupid hours at the weekend, think on.

Your children will thank you for it.

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…

The Psychologist

What an interesting afternoon. I attended a meeting with a psychologist for the first time in my life yesterday. Well, that’s not quite true, Ann is a psychology graduate, but that’s not quite the same.

As part of the PhD study that I mentioned previously, I attended a session at the hospital to assist in the development of an evaluation process for people diagnosed with NHL. It would appear that there are standard psychological testing systems regularly in use for cancer patients, but none specifically for those of us with NHL. With a bit of luck, and some hard work on the part of the PhD student (!) this will change.

There were two patients there, myself and a slightly older man (Man 2 – we remained anonymous for the purpose of the study) and we spent a couple of hours talking with the student and her assistant about our experiences. With just the two of us there, we both had plenty of opportunity to speak freely and at length in response to the ongoing discussion. If there had been more than just the two of us, I suspect that we, as contributors, and the student doing the research, would have got less out of the session.

By happenstance, Man 2’s experiences were slightly different from mine – everyone’s disease is different – so the session managed to cover quite a broad spectrum of what it’s like to be diagnosed. He didn’t realise that he had NHL until inexplicably he lost a lot of weight and had the night sweats (two of the classic symptoms). My experiences meant that I knew I had it before I had the symptoms and could therefore “be prepared”.

We went through several pages of “needs” identified as part of the general cancer patient questionnaire and in some detail discussed how these needs were relevant to our situation. Since everyone is at a different stage of life and disease, it was interesting to learn what Man 2’s needs were, compared to mine.

The “needs” covered sections such as the psychological support ones, financial, sexual, relationships and so on. The sort of things that one would expect in a study like this. What was most interesting was how the two of us were open and seemingly honest about sharing some pretty private thoughts and feelings with three complete strangers. I have never spoken of such things before, outside of the family. Indeed, there were probably things that I said yesterday that I have never said before. I suspect that it is inevitable that some things remain unsaid in normal circumstances. When speaking to a stranger, who is interested in understanding the experiences and thoughts, somehow it’s easier. Much less personal and less likely to cause upset.  I can’t remember what they were, but one seems freer to talk openly to a stranger somehow.

Both of us agreed that some of the “needs” were not relevant to our situation at all; body image, for example. With some cancers, melanoma or breast cancer, body image after treatment can be particularly relevant and important to the mental wellbeing of the patient. With lymphoma, for the most part, no one can tell that you are or have been ill. 

The whole session was most enlightening and extremely well chaired by the student, given that this was her first session. I will be interested to read the summary of her findings in due course.

Maybe I would benefit from finding a Dr Melfi . (Yes, I know she was a psychiatrist..) Or maybe that’s just for the likes of Tony Soprano. Either way, as I said in the meeting, I always feel better about the situation after having spoken about it.

I felt much better yesterday. Yesterday was a good day.