Martins Blog
Saturday 26/11/2005 - New Arrival!
Ashleigh Louise - this morning at around 8 hours old.
Somewhat of a sleepless night, as grandchild number 2 decided to put in an appearance. Her big sister (18 months) was brought round for us to baby-sit late last night around midnight, and having got cold and upset in the process decided she was going to sleep in the big bed between us and nowhere else. Anything for a quiet life! Between her, the Boss, and the dog all snoring I got very little sleep, and the phone call at around 6 to say that Ashleigh Louise had arrived ended any last chance. Mum was bored with sitting around at the hospital having popped out Ashleigh at seven pounds two and a half ounces in around an hour with very little trouble. All are home and doing well now. Big sister is having a little trouble adjusting to the idea that she can't carry the baby around like her other toys, and I'm getting quite used to the idea of being a granddad again. Multi-tasking this time!
Just looked at the date and realised that I have missed a blog! I'll get this much up and bring you up to date later!
Friday 11/11/2005 - TCM and ALT
Well I haven't had a good rant for ages, so I thought I might treat myself to one. Yes, it is my favourite subject of herbals again. This has been awakened by a certain blogger who shall remain nameless, deciding to go the TCM (Traditional Chinese Medicine) route. Fair enough, you would think. Free country, etc. Under normal circumstances I would grudgingly agree. This time there are one or two interesting aspects that have made me look a little harder about what is going on, the most obvious of which is a full list of the treatment. TCM practitioners seem to be very reluctant to do this normally. Whether this is because of the 'trade secrets' aspect, or because they can be criticised for any mistakes is open to interpretation.
Now whether you advocate TCM or not, there are certain facts that are pretty much beyond challenge. One of these is the effects that certain herbs have on standard blood tests. They cause false low readings of ALT. This is all very well known, and many well-respected sources caution those about to have blood tests about this effect. The most common ones are schizandrae, echinacea and valerian. See here.
We are only talking about a very few herbs here, from a library of thousands, so it got me thinking about why these invariably turn up, and my interpretation is that it is no accident.
ALT is a measure of liver inflammation in normal circumstances, so taking a herb that falsely reduces the test results would make it look as if treatment is working. Worse than this, if other elements of treatment actually do liver damage and cause inflammation, the ALT masking effect will hide it. It is a completely deliberate ploy designed to deceive, and a very dangerous one.
I wonder how many patients have opted for the TCM route and fallen into the trap of believing their blood test results? A few years down the line they find their livers are badly and irreversibly damaged, and conventional medicine has the job of picking up the pieces and trying to salvage the situation. The patient often does not fare particularly well, as treatment is tough enough without the complications of a seriously damaged liver.
Fundamental to all this is the point that many doctors still erroneously believe that low (i.e. only slightly raised) ALT indicates no pressing problem. This is not the case. Something like 70% of cases with low ALT will progress towards cirrhosis in five to ten years. Low ALT does not indicate that time is on your side. The only reliable indication of liver condition is biopsy, and many have found that they have cirrhosis despite having consistently low ALT figures.
About the only useful aspect of ALT in the Hepatitis C context is as a marker for the virus itself at the diagnosis stage when a smart GP will spot elevated ALT and AST and look for Hep. C. The only other time is late in treatment when rising levels may indicate the return of the virus, heaven forbid!
I suppose that a lot of people choose the TCM route because of the horror stories that are told about conventional treatment. It is very difficult to get the point over that for every 'bad' case there are hundreds of straightforward ones, and the 'bad' cases get all the publicity.
Anyway, to TCM users. Either get schizandrae, echinacea and valerian out of your medication list, or completely disregard your blood tests.
Sunday 06/11/2005 - Fireworks over?
Well, the blog has been a bit neglected a bit recently. It has been the odd coincidence of circumstances where when I've got the time to write, I get writer's block, and when I've got plenty to say, I've not got the time to write. It has been a busy couple of weeks, workwise and otherwise. I seem to have spent ages going up and down the M11, the most recent excursion being another day trip to Spain, the normal 'fag run'. It was blowing half-a-gale here when we left, but Girona was sunny with no wind and 24 degrees. It makes for a long but pleasant day, as we get home around one o'clock in the morning, but financially it is an absolute necessity, as I have no intentions of giving up smoking until I've finished treatment, and cigarettes in Spain are less than half the price they are here. Thursday is normally one of my 'riba rage prone' days, but I got away without too many problems, apart from getting a bit edgy when kept standing in an airport queue for far too long. The airport staff at Stansted are brilliant, but treated like dirt by many travellers. It annoys me intensely to see them abused when they are trying their level best, and get only criticism.
One little tale that might amuse you. The Boss and I were returning from another trip, and the stewardess was doing the usual in-flight safety announcement and demonstrating life jackets etc. "The life jacket has a whistle to attract attention and a light to attract sharks." Sharks?!! It might have been done for a bet, but I think the Boss and I were among very few who spotted it and laughed. It always causes a smile now when we listen to safety announcements, and we pay attention to see if it is repeated!
By the way, I wonder how many travellers realise that life jackets in the newer 737's beloved by Easyjet and Ryanair are in overhead compartments rather than under the seats as they were in the older ones? Probably explains why the seats are less comfortable!
Monday night caused a few moments of quiet contemplation as I broke the seal on the seventh bottle of ribavirin. It seems ages ago that I opened the first, and I can't yet visualise spring next year when I will open the last. I'm keeping all the drug packing, and I'm going to mount it into some sort of display when I've finished treatment. I might well appreciate some physical reminder of these times in the future, and you can't take photos of a virus. It is all a bit like the November 5th fireworks. Impressive at the time, but not much to show when they are over.
Wednesday 26/10/2005 - Half way?
Well I wrote half a blog on Sunday morning in a quiet contemplative sort of mood, then got distracted and have been trying to finish it to present. Strange how the mood then, just before jab 24, is completely different to now. I'm starting to feel like a bit of a veteran, but there is still new ground to cover. Next week I will break my personal record of time-on-treatment as the longest previous course was 24 weeks, so it is uncharted territory for me. It is quite satisfying to get 24 jabs under the belt (well, over actually!). I suppose that it is marking the fact that I can achieve at least what genotype 2/3's do all the time, and the real challenge of sticking it out for the duration starts now.
I am very confident of getting a result, and turning the screw on the remaining few virus particles attempting to hide in my system has a satisfaction all of its own.
It is a good time for a progress review. It is all going extremely well at present. Level of side effects quite tolerable, and even the dreaded 'rage' symptoms have abated a bit. I have taken to taking paracetamol last thing at night on Wednesday and Saturday as well as the routine Monday,Thursday,Friday which seems to ensure a good night's sleep. The Boss pointed out that I seemed hot on these nights. This seems to have reduced the mental side effects considerably which is both interesting and difficult to explain. Ten paracetamol per week is no big deal when you can take eight in a day assuming your liver is anything like normal. Energy levels seem to be improving, and my general enthusiasm for life is good. In fact 'good' sums things up nicely! Most of the time I can forget that I have, (or should I say had?), the virus, which is how things ought to be. There is a tendency to assume that side effects are going to be present at uncomfortable levels throughout treatment and this is rarely the case. They frequently ease, or come and go, so a pessimistic outlook is not always justified. If you get in the habit of ignoring them as much as possible it seems to push them to one side and you can get on with normal life.
I have promised that I will do a proper write-up on the subject of Response, Breakthrough and Relapse, so that is the next major project. It is a lot of work, but should be worthwhile as there is a wealth of information available but nobody seems to have tied it all together in a coherrent manner.
Routine appointment with 'T' yesterday, all smiles, and no problems. She saw Ron's presentation at the recent conference and was impressed. There is a slightly strange 'thing' between 'T' and me concerning the internet and other patient-to-patient contact, in that I have the impression that she is not comfortable with it, and the subject does not get discussed. She certainly knows of my involvement, and must have picked up on the fact that I know Ron and many others. I wonder if she reads this blog? Probably not, but then she is missing out on all the nice things that I say about her! (Note special grovel just in case she does!) It could be a good thing to work on this basis in that there are no complications to the nurse/patient relationship this way, and I don't feel restricted in what I write here.
Talking of Ron Metcalfe, It is wonderful news that he is clear at the end of treatment. The man has been inspirational in motivating many through the rough patches of treatment, and promoting the much neglected cause of HCV in the UK. If anyone deserves to beat the virus, it is him.
Congratulations Ron, and best wishes for a speedy recovery.
The down side of recent news is that Mad Paulo is starting treatment. Plans are already afoot to declare Thanet a disaster area, and troops are being withdrawn from Iraq to cover the area. Bird Flu, earthquakes, and hurricanes have been pushed to one side by these serious events, and plans are in place to install twenty foot high neon signs displaying his current GOG index on all roads leading into Kent. Channel tunnel trains will be re-routed automatically back to France if the index exceeds 6, and the M20 will be made into a six lane one-way street to allow rapid evacuation if the index reaches 7. Police stated that nobody would want to go the other way, so no problems were expected.
Good luck with the treatment Paulo, and God help us all!
For reference, yesterdays bloods are as follows. Last months in brackets.
White cell count 3.0 (3.3)
Neutrophils 1.0 (0.9)
Hb 11.0 (11.8)
Platelets 211 (165)
ALT 24 - still normal!
Albumin 36
Bilirubin 9
Alk.Phosphatase 85
All pretty boring, but Hb a little low!
Tonight is the inaugural meeting of a new Hep C Support Group meeting in Ipswich, so the Boss and I are going along to lend a bit of support and see what it is like. It is probably a bit too far to attend regularly, but at least we can help them get a good start. Hopefully John and Jane (1962) will get there as well.
Jane had quite a good article published in the local 'free' paper, and I've been trying to find it on the web - no luck so far! Scanning newsprint gives rubbish results, but if I can get an official copy I'll get it onto the net somehow! It is quite amazing that someone who has not even been given a treatment date can show this much commitment, and a lesson to us all.
PS Thanks to Chris Duncan! Decent scan of the article is here.
Sunday 16/10/2005 - Back to Bass(ics)!
Serious gloat time! Sea fishing yesterday, mainly to get out of the house and get some fresh air for a day. Nearly perfect weather, and Aldeburgh picturesque as usual. Expected to get a few little whiting, and be out-fished by the Boss as usual, but just for a change the luck was with me, and two Sea Bass turned up inside an hour. About three, and two-and-a-bit pounds respectively. At Tesco prices that certainly paid for the bait! We did get a few little whiting as usual and the Boss had her usual wrestle with an eel. Funny how she detests them, but always seems to catch one! They are like wrestling with an animated bar of soap on speed, and you end up covered in slime as you fight to stop it tying everything in a knot. Mind you, the bass are a sod to handle as they have spines everywhere.
This total stranger strolls up to us on the beach, and the Boss announces that this is John, one of the guys who we talk to on the forum. She has been plotting again, and John lives locally so she set up a meet without telling me. Nice surprise! Fishing was very much secondary from then on as we put the world to rights. John is successfully through 48 weeks of treatment for genotype 1 and improving steadily. He looks pretty good now, despite having had a tough time before and during treatment, only finishing 3 weeks ago. I hope I'm the same in 6 months time. We added another item to the list of positive effects of HCV, in that it makes people care about others who they have never met. Strange but true!
Talking to other people and sharing experiences makes me eternally grateful that my virus was diagnosed before it had any serious effect. The number of people who suffer the consequences of late diagnoses and treatment is distressing.
Talking of treatment, European approvals just announced are going to have a small impact on treatment in some cases. If you have genotype 1, a low viral load, and are starting treatment with PegIntron (not Pegasys, at least at present,) then you need to be aware of the changes. Those that achieve 'undetectable' status at four weeks can reduce treatment duration to 24 weeks instead of the usual 48 weeks. This is a lot less of an ordeal than before, and gets exactly the same results. You will need to make sure that your treatment centre is aware of the changes, as it is unlikely that most will be, judging from past experiences. All genotype 1's with low viral load (less than 1,000,000) who are treated with PegIntron should make sure that a PCR is done at four weeks to see if they can use the shorter treatment.
The reference is Shorter treatments for some genotype 1's.
I have double-checked to see how this stands with NICE guidelines, and the expert opinion is that it should be viewed as an add-on which will be incorporated in the next review, and in the mean time may be used if the consultant sees fit. Needless to say, as the changes reduce costs, and are more tolerable for patients, any consultant not implementing them could be accused of failing to treat patients in the best possible way!
I have been struggling to work out the motivation for Shering-Plough pushing through these changes, when, in theory, they will sell less drugs by them. However, if the chance of 24 week treatment is only available for PegIntron it is a powerful motivation to choose this as opposed to Pegasys, and could thus increase sales. I wonder if they are getting nervous about direct comparisons being made between the rival products, and have decided to shift the odds in their favour?
I would be a lot happier if Shering-Plough took a long hard look at the dosing instructions for PegIntron. There has been a lot of good information that suggests that twice-weekly injections drastically improve SVR rates, and will reduce side effects. The drug companies seem to have this 'thing' about weekly injections, and will not countenance anything less. In my book, if you are going to stick one needle into yourself, doing so twice a week is not much more hassle. Diabetics do it every day, so why the problem? PegIntron has a lot shorter half-life than Pegasys, and end-of-week levels are very low which probably explains the improvements obtained from twice-weekly dosing.
The ironic part of this is that you cannot easily do the same with Pegasys as the half-life is too long, and peaks coincide. It is theoretically possible to work a regime of three injections per week for Pegasys, but they would have to be at different times of day. It would lead to extremely stable levels, compared to the normal two-to-one weekly variations, and probably lower dosing and reduced side effects, but it is all too complicated to countenance.
All in all, I cannot see why Shering-Plough don't at least include twice weekly dosing as an option, as it is available to them and not to their competition!
Monday 10/10/2005 - Shades of normality
Injection 22 shortly, so coming up to the official half way mark which is good news. In some respects the milestones now are just artificial as all the definitive tests are past (and passed!). Besides the 24 week half way, I can celebrate 32 weeks as two-thirds and 36 weeks as three quarters. After that it is just 'weeks to go'! All b****y boring, but I'll get through it!
The only real thing of recent note is that the Friday bad patch seems to be getting a bit worse, and extending backwards into Thursday and dragging on into Saturday. I'm slowly improving my 'coping' strategy, and trying to avoid things that wind me up.
I'm seriously job hunting at present, as my current contract is just about finished, and if I get the offer of something permanent I may well shift the injection day forward to Tuesdays. This will give me rough weekend but a better week, and will be fairer on a new employer. It will also make coping with the pressure of the rapid learning curve that all new employment entails a little easier.
The weekend was difficult but mostly successful from that point of view as we had a family wedding to go to, and although given the choice I would have avoided it, I really had to make the effort. It all went fairly well until the plot took on aspects of 'Keeping up Appearances' and a music hall farce when Transco were called in to investigate a gas leak at the hotel hosting the event and proceeded to attempt to out-do the disco with a pneumatic drill. The combination was more than I could stand, and rather than place the drill in a more appropriate position which would give the operator some difficulty in sitting down, I decided to make an elegant exit.
Apparently the situation got worse when Transco resumed work at 5:00am the next morning right under the bridal suite. (Did the earth move for you?!) Then contractors started crashing scaffold poles around whilst erecting a marquee for a harvest festival celebration. The bride and groom and guests were even less amused to find that there was no hot water or showers due to lack of gas.
I suppose you can't really blame the hotel for this sort of thing, but a crisis is always the best test of management, or lack of it, and this certainly proved true this time.
One interesting side-issue was the number of times that I had to prevent waiting staff from attempting to fill my glass with sherry, wine or champagne. Five of the eight at my table were not drinking, and after my repeated requests for something non-alcoholic were blatently ignored I got fed up and walked through to the bar myself and bought cokes. It was quite fierce pressure to drink, and obviously 'not normal' not to do so. I'm a little wiser now, and given the same circumstances again, I'll get all the unwanted glasses cleared at the start, and a jug of fruit juice installed. Anybody attempting to stop me will get their head bitten off!
The other thing that distressed me was the music. As an ex-DJ of years ago, I learned the valuable lesson that you have to make the occasional foray into the middle of your audience to see what the music actually sounds like. It is completely different behind the console. In this case the bass and treble were so high that you could not identify which track was playing, and the only mid-range was coming from the pneumatic drill outside! Thousands of pounds worth of equipment sounding complete rubbish due to operator incompetance, or possibly operator deafness? Nothing new there!
Despite the incidental aspects, the bride looked lovely, the groom a real prince charming, and nothing could really have spoilt the occasion! Hopefully they are jetting off to foreign parts and a little less adventure about now.
I must say hello to Ray, one of the guests, who follows this blog. Hope I didn't disgrace myself too much!
Sunday 02/10/2005 - Quite a week
I have spent half the week with a irritating little melody running around inside my head. You know the sort of thing that drives you mad and you can't get rid of it. The words are 'Undetectable, thats what you are...' to the refrain from Unforgettable, by Natalie and Nat King Cole. It was amusing to start with, and is now B****y irritating. Serves me right I suppose!
It must be part of the human psyche to automatically look for the next problem just as soon as you clear what appears to be the last one, and surely that is what is happening now. Looking ahead the only two major pitfalls appear to be breakthrough, and relapse. Breakthrough, for those who do not know, is where the virus suddenly starts to come back in the later stages of treatment. It is a mercifully rare phenomenon, thought to be caused by your body producing antibodies to interferon, or the virus mutating and becoming immune. Needless to say it is not good news as the virus rapidly returns, and future interferon treatment, at least with that particular type of interferon, is impossible. When it happens, the only indication is normally that ALT and AST levels start to rise, so I will be watching them with considerable interest! It is very rare, but worth bearing in mind.
Relapse is always a thorny subject. If it is going to happen, it usually does so in the six weeks following treatment end. They usually leave the last PCR until six months post treatment before declaring you 'cured'. They won't use the 'C' word of course, and just call it SVR (Sustained Viral Response). It is still possible for the virus to come back, but you would be very unlucky indeed for it to happen after six months. Almost certainly some of the cases where this happens are due to re-infection, and it is difficult to isolate these from genuine relapses.
There is not much that anyone can do to improve the chances of staying clear. Staying off alcohol will certainly help, as it promotes virus replication. Apart from a few slower responders, longer treatment doesn't improve things much. It seems that you just have to take your chances, and see what fate lies in store for you. I look forward to it, and if it takes a fourth or fifth course to kill this damned virus then so be it.
The Hepatitis C Trust deserve a big pat on the back for their sterling work during the past week. An awful lot of effort has obviously gone into the publicity achieved. With any campaigning getting the ear of the media is difficult enough, but the weeks results are notable for the standard of accuracy achieved, and the general impression conveyed. It is a great step forward, and if we ever end up with a government with any conscience, will get results. Not much hope at present, as when the government did manage to put up a spokesman and the standard lies were trotted out and mercilessly shredded there was still no promise of any improvement. I wouldn't wish Hep C on anybody, but I can't help thinking that if a senior politician happened to be found to have the virus, how much different things might be. There is only one thing worse than 48 weeks of combo treatment, and that is not being able to get 48 weeks of treatment when you desperately need it. The ridiculous situation at present is that Hep C is killing more people in the UK than AIDS/HIV, and has only a fraction of the AIDS funding. There is no queue for HIV treatment. As detection rates improve and caseloads rise the situation can only get worse. Producing a Plan and then not actioning it is a typical cynical political gambit. Five hundred thousand undetected heppers would be clamoring for better if they only knew they had the virus.
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