Tag Archives: ipilimumab

Tattoos, Frasier, and new treatments…

Greetings all,

Apologies it’s been such a long time since my last post – it’s been a period of ups and downs, which should become clear throughout this post.

Right then, where to start?

Ipilimumab

Well the first thing to update you on is our decision regarding Ipi. So following that disappointing appointment at the Royal Marsden (described in my ‘long time, no write…’ post), we went back to clinic a fortnight later to discuss the issue further. We approached this appointment fully prepared to argue our case to go on Ipi – but the doctor that we saw presented a very convincing case against taking this option.

She confirmed that it was the consensus of the whole team at the Marsden (including the doctor who had been on holiday during my previous appointment) that Ipi was not suitable for me because of my pre-existing ulcerative colitis. She advised that she had not been able to find any examples of anyone with a condition like mine being given Ipi; she also cited examples of two of their patients who were currently in hospital, both suffering from severe colitis induced by Ipi, both on intra-veneous steroids, and one of whom they did not expect to recover from the colitis.

Weighed up against this risk was the seemingly miniscule potential chance that the drug would actually have any benefit. She explained that their typical response rate was in the region of five per cent – hardly an inspiring figure! And even then I was advised that I didn’t fit the profile of a typical ‘responder’, so my chances of gaining any significant benefit from the drug were even less than that.

In light of these factors, and after much thought, we decided to turn down Ipi as a treatment option. We felt that it posed too much of a risk to everything else we were doing in terms of our ‘integrative’ treatment approach – if I were to end up in hospital on intra-veneous steroids I wouldn’t be eating Sally’s healthy meals, wouldn’t be able to exercise, would probably have to stop taking supplements, etc.

And also very importantly, I’d only be able to see family and friends during hospital visiting hours, and my time with Saskia would be limited – there’s only so much time she would tolerate in a hospital ward (or be tolerated in a hospital ward!).

In summary, the risk of colitis and the negative impact this could have on everything else we were doing, both in terms of my ability to fight the disease and my quality of life, seemed to outweigh what looked like a very slim chance of a response. So after a lot of thought we decided to say ‘no’ to Ipi.

This was an incredibly difficult decision to make – throughout life you get used to the idea that if you get ill, you go to the doctor and they give you something to make you better. To actually walk away from a ‘conventional’ treatment option like Ipi (despite all the risks) and say ‘we are going it alone’ with diet, exercise, etc, was incredibly unnerving. Rationally we had been through all the pros and cons, and so had faith in our decision – but that didn’t seem to make it any less daunting.

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Life After Ipi

So that was it – back home from the hospital to fight this monster ourselves, with our regime of exercise, diet, relaxation, supplements, etc.

Since then life has certainly had its ups and downs.

While our integrative regime initially went well, we soon discovered the magnitude of exactly what we had taken on – fighting cancer had suddenly become a full time job. It wasn’t long before we were struggling with the time demands of shopping for and preparing fresh meals, juicing, walking, trying to fit in relaxation, etc. On top of the everyday demands of trying to manage a baby, a house, and the rest of everyday life, we found ourselves a little over-committed.

My previous treatment regime of sitting on the sofa eating scotch eggs and chicken and mushroom slices had certainly been less work, and definitely more enjoyable – although probably not offering as much towards the fight against the cancer.

While on the subject I have been amazed at the amount of admin that having cancer involves. Endless forms, e-mails between hospitals, appointment letters and planning, phone calls between hospitals, prescriptions, etc, etc. It has been truly incredible.

Fortunately just as we were reaching our wits end, we had a week long break in the Lake District, staying in a lovely cottage just outside Keswick with my Mum, Step-dad and Sister. This gave Sally and I a chance to have a bit of a rest, with all the extra pairs of hands to help look after Saskia. I personally didn’t manage to do much walking or photography, mainly due to tiredness – but we had a nice break, with plenty of good pub meals, a boat trip, and time to relax.

Unfortunately towards the end of the holiday I started to suffer with pain in my left arm (which we put down to nerve damage from the chemotherapy), and the pain in my back increased considerably, leaving me in quite a lot of discomfort. To compound matters I also started to suffer more and more from fatigue. By the time we were back home I was pretty much exhausted, and in significant discomfort if in any position other than lying on the bed.

And that has been the story up until now. The last few weeks have been very difficult – between the fatigue and back pain most days have been spent lying on the bed, in a half asleep stupor, watching endless episodes of Frasier, Futurama and the Simpsons on obscure Sky comedy channels (but not Friends, because Friends is rubbish, despite the fact that it is on ALL THE BLOODY TIME). The consensus of the doctors is that the physical and mental exhaustion is a side effect of the brain radiotherapy. I have to admit I thought I had passed the window for those side effects, but evidently not.

The consensus of those around me (ermm… mainly Sally) is that I have also been suffering from a little depression. I can’t say I was really aware of this myself at the time, but I can understand where she is coming from – it seemed to coincide with the period when I felt most mentally fatigued (obviously all that Frasier wasn’t doing a very good job of keeping my spirits up – perhaps I should have been watching Friends after all!). Looking back I can certainly say that over the last few days I have felt mentally more ‘with it’, and Sally seems happy that I am returning to my normal cheery happy-go-lucky self (actually I’m not sure she would go that far!).

Despite spending most of the last three weeks semi-comatose on the bed, an awful lot has been happening in terms of treatments and hospital appointments during that time. Last week on Friday I had radiotherapy treatments at Canterbury Hospital on my arm and back to try and help with the pain (yes, that’s right – it turns out the pain in the arm wasn’t nerve damage, but spread of the cancer to the bone in my arm). Excitingly this involved me getting my first three tattoos – they do a ‘CT planning scan’ beforehand to see the areas they need to target, and then they tattoo you in order to make sure that when they actually come to do the radiotherapy they are targeting the right place.

They give you a choice of what you want – so I went for an anchor, an England flag, and a big lions head. Obviously I am lying – all they did was tattoo three tiny dots on me. One on my arm, and two just above my trouser line, both of which I am currently too fat to be able to see without the aid of a mirror (not the arm, I can see that one – I’m not that fat, yet).

So far I think the radiotherapy has had some benefit – although like with the brain radiotherapy they tell you it can actually make the problem worse for a week or so. But so far it’s not been too bad, and I would say things have improved slightly. So I’m looking forward to next week when I should feel the full benefits.

I also have big news on further treatments – we have been to see another doctor at St Georges Hospital in Tooting, who specialises in both melanoma (among other cancers) and the immune system (anyone watching may have seen him on Newsnight on Monday and Tuesday nights). Given that I have melanoma, and an auto-immune condition, we thought he was worth a visit. So we have been to see him a couple of times, and he has prepared a new treatment plan for me, consisting of about four different medications.

After making that decision to ‘go it alone’ with the Ipi decision it is slightly strange to be back in the world of ‘conventional’ treatments, but it seems what he is offering poses significantly less risk than Ipi, and with hopefully a better chance of pay-off (although as with all these things, the typical response rates are not great). So I am due in hospital on Friday for another course of chemotherapy (but a different drug to last time).

That is assuming I can get there – today I managed to put my back out even more than previously, trying to pick up a towel from the bed, and so have spent this afternoon and evening lying on the bed, even more immobile than usual. So here’s hoping I am mobile enough on Friday to get in for treatment.

Before I finish I want to say my usual thank you to all who have sent messages of support over the period since my last blog. I know it’s been a long time, and it’s difficult for people not knowing what’s going on when I don’t write on here. And I’m sorry that recently I haven’t been replying to those messages, phone calls, etc – it’s not been because I didn’t want to, or because I don’t appreciate them – it’s just because, frankly I have been absolutely exhausted and not really up to it.

Right, I think I’ll leave it there for now. Now, can I make it to the bathroom without collapsing… tune in next time to find out.

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Long time, no write…

Hi all,

Apologies I haven’t written for a while. After a fairly active period on the blog with all the brain / radiotherapy news, I decided for my ‘week off’ treatment that I would focus my energies elsewhere for a bit of variation (more on that later). And since Thursday I just had to take a break from thinking about cancer and treatments for a few days.

Obviously most of you will have seen Sally’s post on Thursday – yet again another disappointing trip to the Royal Marsden. Since my ‘relapse’ I am yet to walk out of those doors having heard the ‘good’ news option – it always seems to be the ‘bad’ news. Next time I am considering just staying at home, assuming it’s bad news, and saving ourselves fifty pounds on train fare and a whole lot of waiting around.

In truth, while obviously we were hoping for the best, it was not a complete surprise that the chemotherapy was not deemed to be effective. The doctors at the Marsden typically state the positive response rate to be only ten to fifteen percent of patients, and then usually only for a limited time.

What was unfortunate, and made the news more difficult to take, was a bit of a mix up prior to seeing the doctor. I had a provisional appointment booked for Friday to have the chemotherapy if we were going ahead. While waiting to see the doctor I was approached by a nurse, told I was having treatment Friday, handed two blood forms saying ‘pre-chemo’, and told to go downstairs for a blood test.

“Result!” I thought, “that means the chemo was working, doing something at least”.

For the first time in a while I thought I would be leaving the hospital with some positive news, and found myself in the seemingly odd position of being ecstatic about the prospect of receiving chemotherapy.

Then suddenly it dawned on me that maybe the doctors hadn’t reviewed my scans yet, and the nurse had just acted on the basis of my provisional appointment. I quickly tried to temper my excitement, and decided I wouldn’t believe it until I heard it from the doctor. But it was difficult not to have some level of hope – thinking to myself “I’m sure they would have checked everything properly”.

Going through countless scans for cancer and waiting for results have generally been the most harrowing times of my life – it’s pretty indescribable. After a scan I find myself analysing in great detail the attitude of the staff towards me for signs of pity; in waiting rooms I wonder if I am being left until last because they need a senior doctor to break bad news to me; and so on.

What I’m trying to get across is that when one spends so much time trying to read things into things that don’t actually mean anything, it’s very hard not to get excited when someone explicitly says to you, “you are having treatment tomorrow”.

Anyway, as you can probably guess it was just as well I did at least partially prepare myself for bad news to follow – as it turned out I wasn’t to have the chemo after all, and had therefore had yet another needle stuck in my hand for no reason whatsoever (much of the time I feel like a pincushion nowadays).

So that wasn’t the best start to my chat with the doctor – I was obviously disappointed, and angry that such a mix up had been allowed to happen in the first place. But these things happen unfortunately.

Putting that incident aside, what they told us was this – the disease has progressed despite the chemotherapy. Not dramatically so, but enough to not continue with that particular treatment. Which leaves us with two options:

1 – ‘Symptom management’ – two words no patient wants to hear.

2 – Treatment with Ipilimumab (or ‘Ipi’) – a new-ish drug, and what is known as a ‘second line’ treatment (the chemotherapy being a ‘first line’ treatment).

We have been aware of Ipi as a second line treatment option for a while, and it has generally been accepted that if the chemo didn’t work then Ipi was the automatic next step. What took us by surprise in Thursday’s appointment was that I was strongly advised away from this option, and towards the ‘symptom management’ option.

Ipi works by boosting the immune system, to try to help it to fight the cancer more effectively. Now like most anti-cancer drugs it has side effects, and (like most drugs aimed at fighting melanoma) not particularly high response rates. One of the side effects of Ipi is colitis – which I have already, due most likely to an overactive immune system (hence I am on immuno-suppressive medication to manage the colitis). So in a nutshell, the position of the doctor we saw last week is that Ipi represents too great a risk to my health and ‘quality of life’, given my existing colitis, for what he sees as the questionable chance that it will be effective.

Which was, as you can probably imagine, all pretty uninspiring to hear – and leaves us with an awful lot to think about. I find myself in a catch twenty-two situation – with one medical condition that requires suppressing the immune system, and another for which we want to boost it.

In truth, again perhaps we should not have been entirely surprised at the negativity over the Ipi route – I have been aware that the doctor we saw has had reservations about Ipi as a potential treatment option for me from the very beginning. However, we have had more positive discussions regarding Ipi with the other doctor who jointly leads the melanoma clinic – his take last time we spoke was that colitis was the lesser of two evils, and we would have to take the risk and manage any colitis flare up. Unfortunately my situation has changed since that conversation – at the time we didn’t know that the cancer had spread to the brain. So it could be that his opinion would now fall in line with the doctor we saw last week, and he would warn me away from Ipi too. But either way we would obviously like to hear what he has to say – unfortunately he won’t be available to discuss this with us until next week (having had the nerve to go on holiday at such a critical time in my treatment!).

However, it doesn’t look like this will hold us up significantly if we do decide to go for Ipi. It isn’t yet (as I understand it) freely available on the NHS as a licensed treatment – so the Marsden have to make an application for funding, which can take two to three weeks. They have been kind enough to initiate that process immediately, to minimise any hold up should we decide to go for it. Which means that we have time to take over our decision, and can meet with the other doctor once he is back, all within that two to three week window.

So there you go – that’s where we are right now. It was obviously a disappointing meeting – but yet again we have picked ourselves up, as we are becoming very adept at doing (thanks to plenty of ‘opportunities’ to practice!). I’d be lying if I said there hadn’t been some hard moments over the past few days, but we decided to put starting the Ipi research and decision on hold for a few days (given the lack of any immediate time pressure), and throw ourselves into positive and enjoyable things to keep us in good spirits – and I would say we have bounced back pretty quickly.

What I have said before in this blog still stands – we are not giving up, ever!!! There is always hope, and dwelling on negatives and what might happen before it does happen will only compound matters. Sally and I promised each other at the beginning of this that we would just deal with what is immediately in front of us, and that is what we’re doing.

Also, I don’t want to say too much about it at this point in time, but there is a another avenue we are exploring. It might come to nothing, but it’s nice at this point in time to feel we have other options.

And in a way, this appointment on Thursday was perhaps the kick up the arse that we needed to make some other big lifestyle changes to give myself the best chance of beating this (again, more on that later).

So that’s all I’m going to write for now – I had intended to write plenty more, about what we’ve been keeping ourselves with busy since my last post, the above mentioned lifestyle changes, my general condition (not bad, just so you know), etc. But I have already written nearly fifteen-hundred words, have run out of time for today, and want to get this post out there quickly so you know we are ok, and I’m not spending my time trying to throw myself under buses or down any wells.

As always, thanks to everyone for their messages of support over the past few days – it really does make a massive difference.

I will post again soon.

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Filed under Battle with Melanoma