LDN Awareness Week

October 19-25, 2009 has been designated Internation LDN awareness week, to focus media attention on the successful use of the inexpensive medication Low Dose Naltresone, or LDN. Never heard of it? I’m not surprised and even though I have, LDN awareness week has largely passed me by, which is a pity.

Naltrexone is a drug which in a 50mg dose is approved for the treatment of alcoholism and drug addiction by blocking opioid receptors, however it has been found that in much smaller doses (approx 3 - 4.5mg once per day), it may be helpful in the treatment of various diseases such as HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders (including MS).

The thinking behind this is that by taking LDN at bedtime each night, the brief blockade of opioid receptors between 2 a.m. and 4 a.m. is believed to “trick” the body into an increase in endorphin and enkephalin production which boosts the immune system and helps the body to heal itself. OK, it's probably much more complicated than that, but I don't pretend to understand how it works!

Whilst no-one is claiming that this is any sort of miracle cure, or substitute for conventional treatments, particularly where cancer is concerned, anecdotal evidence has shown that it can be effective.

So why haven’t we all heard about it and why isn’t it being prescribed? Basically it isn’t licensed in such low doses so doctors are scared to prescribe it incase they find themselves facing legal action at some time in the future. In order to become “above board” it would require to be trialled, and here lies the problem. Since Naltrexone is now an out of patent drug, no pharmaceutical company currently holds exclusive manufacturing rights. So no company is eager to fund an expensive clinical trial for a drug that will make them so little profit. Hence this is an issue which only the Government and the people can address.

As it turns out, Scotland leads the way in the UK in LDN clinical experience. Dr Tom Gilhooly of the Essential Health Clinic in Rutherglen being one of the foremost UK clinical experts in LDN and the force behind the organisation of the first European LDN Conference which was held in Glasgow University earlier this year. A second conference is planned for Glasgow in 2010.

I’ve asked my GP and oncologist about it – if all else fails, it’s definitely a route I’d be prepared to take, however probably not at the moment as it is known to reduce the effectiveness of certain painkillers which I’ll probably need following surgery. They’ve both heard of it and my GP at least seems to be fairly open minded about it all, but both have said they’d not prescribe it for me.

My feeling is that at the very least a trial should be carried out, or in the meantime, doctors should be supplied with a standard disclaimer that patients could sign and waive their right to take legal action so that those GPs would feel comfortable to prescribe LDN for those who are prepared to try it.

If you are reading this, please take the time to sign the following three petitions and pass the word around – you never know when you or someone you know might need it!

Scottish Parliament Petition – this can be signed from anywhere in the world

10 Downing Street – you need to be a UK citizen to sign this one

Canadian Petition – anyone can sign this and the Australian petition

Australian Petition

Further sources of info:

LDNnow.co.uk

LDNresearchtrust.org

International Coppafeel Day!!

Of all the cancers in this world, breast cancer is the most common and accounts for nearly one in three of all cancers - a truly disturbing fact from the Coppafeel website.

Kristin is a beautiful young woman who has been diagnosed with metastatic breast cancer. In her own words.... "I am a 23-year-old travel bug who has anarchist cells. Though I did not apply for the job, I accept my full-time kancerployment. This does not mean that I give up; rather, I have decided once and for all to grab this bitch by the horns, slap it upside the head with a block of organic tofu, and devote my life to healing, understanding, and change."

You can read her story here, but more importantly go Coppafeel!

Chemo Cycle 2 / The Journey Continues...

Chemo Cycle 2 done and dusted and went without too much to complain about – dreadful heartburn for the first couple of weeks and more tired than last time, but still no nausea which was good. The second week I developed splits on my thumb and first finger, which were quite sore but they healed after a few days. The third week brought swollen ankles and general bloating – a bit of a pain because I couldn’t walk far without getting aches in my feet and was forced to sit with my feet up for a while, but I suppose that’s what I’m meant to be doing anyway!

Check up with the consultant was on Tuesday afternoon – weight 64.4 kgs, so up again. Think that’s enough now, will have to stop with the chocolate! One of the nurses from the Chemo day ward was down helping out and she managed to find a vein in my arm and take bloods without any drama at all. Great, because my hand is still tender from last time and I was worried that they’d end up taking from there again. Then back to the waiting room for the wait to be called through. They really need some new magazines in there – I’ve read them all now! Finally an hour and 10 minutes after my appointment time it was my turn.

This time there was a young female GP in attendance too. We had a quick discussion about side effects – the swollen ankles and bloating apparently due to the steroids I’m given with the chemo to combat nausea. No-one knows why they work, but they do have some side effects of their own – including water retention and boosting your appetite. I would have thought the effects would be more apparent at the start of the cycle, but not so. Then he asked how I felt about the tumour – did it feel smaller, bigger, just the same? I said it was difficult to say, but that I had been having some discomfort again when I was sitting for any length of time. So, through to the wee room for the examination – “you know what to do!” Yep siree – lie on my side with my bum hanging over the edge of the couch in all my wondrous glory! He asked if I minded the GP doing an examination too – no, help yourself, I’ve lost count of the number of people who’ve seen it all now! Actually I don’t mind – the GP is the first line of defence and they have to learn what they’re looking for too. If mine hadn’t been so thorough right at the start, I’ve no doubt that things wouldn’t have got rolling so quickly.

Got dressed and back through to the consulting room to be told that he didn’t think the tumour had got any smaller this time, and in fact if anything, it was a little bigger so it was interesting that I said I’d been having some discomfort. As a result, he decided to cancel what was to be my last cycle of chemo, but sadly it looks as though we’re going to have to go the surgery route after all. Shit. Felt a bit numb because although it’s always been at the back of my mind that this might have to happen, I didn’t think he’d cancel the chemo, and I’d prepared myself for maybe having to have some more.

Next step is to have another Examination Under Anaesthetic so they can have a closer look and take a biopsy to check if the cells are still active (there's a slight chance that they may not be in which would change things), but most likely it'll allow them to decide between a local resection or an abdominoperineal resection which would be quite major. It's disappointing after all the treatment I've had so far and I’d hoped to be back to work and getting back to normal before Christmas, but I think long term it'll give a better outcome, so whatever they decide I'll just have to get on with it. He was very clear that it is still a curative treatment and not just palliative but for the first time since this all started I’m beginning to feel a little nervous of what the future holds….

Met my sister for coffee in Aberdeen after my appointment. It’s the first time I’ve been in for months and everything has changed – shops opened up, shops closed down and a huge new shopping centre has been built which opens next weekend. It was only just started last time I saw it.

Came home in the evening and read up everything I could on the Macmillan and Cancer Research websites about what the surgery could involve (possibly not a good idea to do a search on abdominoperineal resection in Google images though!!!). I had so much going round in my head that I couldn’t get to sleep at night and ended up Skyping my sister- and brother-in-law in Australia at 2am! Not good timing as they were eating breakfast, but got a guided tour of the house in daylight which was great – I can picture it all much better now. Thanks guys, I think I just needed a chat and slept like a baby afterwards!

In the meantime, I’m just getting on with things and planning for Christmas incase the timing of the surgery means that I’m not able to get out and about later on. I’ve warned D that we’ve to have a day out shopping – not his favourite pastime, particularly when it’s got anything to do with Christmas shopping, but it’s either that now, or he could be left to it all himself later on which could be a DISASTER! And I like Christmas shopping so I don’t want to miss out.

The fantastic team at work also clubbed together to get me ANOTHER gift! (You really need to stop doing this – I feel terrible that this is going on so long!) Lovely new smellies for the house and a bag of crafting goodies from Simply Create in Alford. I had been feeling a bit fed up with myself and couldn’t be bothered doing much, so this was just what I needed to get some enthusiasm back again. There was a kit to make 3 Christmas cards from a class that had been held in the shop, plus some extra papers and bits and pieces. Lovely, lovely!!!

These are the three cards from the kit (my scanner’s on its way out, so the colours aren’t great) – the others I’ve made from the rest of the stuff will be going to the Team, so I’m not going to post them here yet. Thanks again everyone, you couldn’t have chosen better!

So that’s it for now, back to waiting for appointments and trying not to dwell on what’s to come….

PS
I've been reading a blog called Red Shoes Green Peppers (there's an explanation for the name on the side bar). Paula has breast cancer and writes beautifully about her experiences - how I wish I could put things over. Even though we have a different type of cancer her blogs make me laugh and sometimes cry because I can absolutely relate to some of her experiences and feelings. Look out for the following posts:

Baps, Buns and Cupcakes - her description of her Oncologist, Dr O had me smiling. It must be something about Oncologists - everyone who knows my one says "Oh, he's LOVELY!", and I have to say that I agree wholeheartedly!

Gone to the Cogs - I always feel guilty when people say that I look really well, because I think that maybe I could have worked on, and maybe that's what they are thinking. Paula describes beautifully why that wouldn't be sensible.

Chemo Cycle 2 / Lessons in Being Thankful

Well, managed to get to the end of Cycle 1 without too many serious ill effects. I did have a bit of an infection fright when I woke up with a sore throat and the nurse on the chemo helpline advised me to have some blood tests done to check that everything was OK, but thankfully it didn't come to anything. I've not had to take any anti nausea pills this time and apart from heartburn most of the time and a split that appeared on the end of my thumb which has since healed up, I've escaped relatively unscathed. I have had the odd day when I've had to go and have a sleep for a while, and some days I can venture further from the loo than others, but generally speaking it's not been too bad at all.

I had an appointment with the consultant on Tuesday which went quite well - didn't have to wait too long to be seen, the bloods were taken without too much drama - two tries to get a suitable vein, but I'm getting used to that and the nurse informed me I have the same birth date as her dad! ME?? Old enough to have a qualified nurse as a daughter??? SURELY NOT!!! Sadly I fear it's true, and it's not making me feel any better.

Anyway, when the consultant asked how I was coping with what they're doing to me this time I was able to say "pretty well". He's very good at not giving away too much, but I think he was surprised but pleased that I've not had more side effects, however after the examination he did say that he'd have been happier if the tumour had appeared to have shrunk more than it has so far. I'm not so aware of it all the time as I was last time I saw him, and he said that's as good an indictation as any that it's going the right way, but there was no mention this time of not completing the three cycles of chemo. I'm happy enough with that - I'd rather blast it with everything possible now and hopefully the cumulative effect won't start making me feel worse again.

So, back to Ward 15 today for my second cycle of chemo. Same procedure as last time - in for 9am, water tablet, two bags of hydration fluid (1 hour each), anti nausea injection, steriod injection, 1 bag of Cisplatin (2 hours - no Mitomycin this time, that's only every 6 weeks), 3 bags of hydration fluid (1 hour each), numerous trips backwards and forwards to the loo, supper (fish in leek sauce and syrup sponge and custard again) then home at 6.45 with my little carrier bag of Dexamethasone for the next 3 days and Capecitabine for the next 3 weeks.

I don't know if I said last time, but one of the injections has the alarming effect of making my bum nip almost immediately as it's going into my hand. A weird feeling and difficult to describe, but sort of an "OOCHA BEASTIE!!!" sit up and take notice kind of nip. It doesn't last for long, just about 5 minutes before it starts to wear off but it's not pleasant. Gave Dave and the folks sitting next to me a bit of a laugh, so I suppose it served some purpose!

My friend Linda came in again this afternoon to keep my company for a while which was great - this time instead of a "Thought For The Day" she's giving me a "Stitch For The Day" - or one every two days. I've been instructed to make up some 20 x 20 hole squares on a piece of canvas to practice them. Apparently they've all got a country theme, so it'll fit in with the "Around the World in 80 Stitches" at Embroiderer's Guild which is good as I'll not be able to go to the meetings for a while because of the risk of infection. The first was Astrakhan Velvet Stitch which is Russian and today's is Brazilian Stitch which looks positively evil to work out, and no better when you've seen it done. Nae pressure but she's already done the first four so I'll have to get a move on. Had to have a laugh at Brazilian Stitch though - most appropriate considering one of the side effects of the radiotherapy!!

Today really was a lesson in being thankful for what you have (or haven't) got.... For most of the day I was sitting next to a physically and mentally disabled young woman with her mum and granda. They said she hadn't been well over the last few days and had a very low blood count so she'd been asked to come in for some tests. After waiting all morning and half way through the afternoon, she was finally seen by a couple of doctors and they were asked to wait again for initial results. Finally one of the doctors came back with a consultant which immediately didn't look great. Everyone is in such close proximity in the ward that it's so difficult not to overhear what's going on and it sounds as though they suspect she has some sort of Leukaemia. They have to go back tomorrow after some more tests have been carried out for confirmation. I was just gutted for them, to be faced with that on top of the day to day trials they undoubtedly already have to deal with and they just seemed to be so devoted to caring for her. Was almost in tears myself when they left, but what can you do but wish them luck....?

Later on after supper time, I was passing the jelly babies Linda brought round the last remaining few people when I got chatting to a lady at the other side of the ward. She declined the offer as she's having radiotherapy on her mouth. I had noticed that she'd just had ice cream and jelly to eat during the day and thought it was maybe because she had mouth ulcers with the chemo, but on seeing her closer, her cheek and neck was really inflammed. She said she was having 20 sessions and had 8 more to go, but that the skin was already off her tongue and that she was having difficulty eating anything at all. Oh my God - and I thought that what I had to endure was bad. Definitely nothing compared to what she's going to have to go through. I can't even begin to imagine what that must be like... and she was still smiling. Some people just make you feel very humble.

On a lighter note, during the middle week of my chemo cycle, we managed to get away in the caravan for a few days. I'm not sure if it's strictly allowed when you're signed off, but since we've not managed to get a "proper" holiday this year, for medicinal purposes it did us both the world of good and surely no-one can begrudge us that... Quality time together with no TV and no internet which hopefully will always be the case, lots of fresh air, lots of sleep (due to fresh air, dark nights, lack of TV and internet) lots of reading (new Dan Brown book for me, Screwfix catalogue for Dave - don't lets go there!!) and even some sunshine. We couldn't go too far "just in case" and for those who are familiar with Scottish geography, our route wasn't exactly the most sensible, but after spending a couple of nights in Kirriemuir again with bro and sister-in-law we had to come closer to home again for D's dentist appointment - already cancelled twice and didn't want to cancel a third time, so spent a couple of nights in Ballater. Although it's not so far from home, just spending a couple of nights there meant we saw bits that we wouldn't normally just on a day out. I hadn't realised there was a footpath along the side of the river by the golf course - perfect for dog walks from the caravan site and just far enough for me.

The Rowan trees are glorious and dripping with berries at the moment - think it's supposed to be a sign of bad weather to come. My granda used to make rowan jelly and I'd love to have a go, but wouldn't know where to start. Might have to do some investigation.

Next we moved on to Scone for a couple of days - I'd have liked to go further, but didn't want to be too much more than a couple of hours drive from Aberdeen, and also the toilet and shower facilities there have just been refurbished - another major consideration in present circumstances! The caravan site at Scone is right next to Perth Racecourse and the dog walk down to the River Tay is right alongside the course (see below with Scone Palace in the background).

We hadn't considered that there might be races on, but of course there were for the two days we were there - not good when you want to be avoiding crowds of people, so we headed off out for the day. Dropped in past the Highland Chocolatier shop at Grandtully near Aberfeldy. Don't think I've seen anything quite like it - and the Wedding Cakes have to be seen to be believed (as do the prices!!) We did spend quite a lot of money in the shop - including a couple of the Orange Sunrises to eat at the time. They really are orange-sized (2 cost £6.00 which gives you an idea of the weight involved, but what the hell, it's not every day!) but possibly just too much of a good thing all at once - really, REALLY good at the time, but about 10 minutes later we both felt just a bit sick! Felt we needed to do some exercise to work off the calories so stopped off at a forest walk on the way back to Scone again - not sure exactly where it was, but nice and peaceful anyway. If I look a bit like the Mitchelin Man it's because I've got a down jacket and an anorak on - been feeling the cold something dreadful even though it's not really that bad yet. If I could have found my hat and gloves they'd have been on too!

After Scone we decided to head back up the A9 to Glenmore just outside Aviemore. I LOVED it there - the weather couldn't have been better for this time of year. This is the view from our pitch.

Loch Morlich's sandy beach is just two minutes walk through the trees....

... and there's plenty of choice for doggie walks. Now THAT'S what I call a stickie!!

We'd never been up on the Cairngorm Funicular Railway, so we did that.

The Ptarmigan Restaurant (and I use that term very loosely) at the top is still a bit crap, but I suppose it can't be too fancy if it's catering for skiiers in winter too. However the views were fantastic even though it was VERY windy and VERY cold - I did manage to find my gloves, but no hat. Still, all that cold, fresh mountain air must have done some good.

The following day we walked from the caravan site to the "Lochan Uaine" - the Green Lochan. It was absolutely stunning when we got there - definitely worth the walk, but the furthest and most strenuous I've done for a while, so had to have a lie down for a bit when we got back!

My sister and brother-in-law came to join us in their motorhome for the last couple of nights which was great too. All in all, probably the best memories of this year so far. We might even be able to squeeze in a few more.