Martins Blog (Archive 4)

Thursday 29/09/2005 - UNDETECTABLE!

Results of the week 20 blood tests just through from 'T'. UNDETECTABLE by PCR. Still getting over the shock. Phone calls and emails in all directions. Having calmed down a little, I can now take stock. 28 weeks still to go, but no obstacles to climb. It will be one long hard grind from now, but there is light at the end of the tunnel as the odds are very much in my favour.

'T' was her normal mischievous self, and deliberately read out all the other blood results, which I dutifully wrote down, before telling me about the negative PCR. Mind you, I managed not to butt in and ask outright! She is plainly as chuffed as I am.

For reference, the bloods are as follows. Last months in brackets.
White cell count 3.3 (3.8)
Neutrophils 0.9 (1.1)
Hb 11.8 (12.1)
Platelets 165 (201)
Nothing here to get excited about, but the pressure is off now, as in the unlikely event of the figures getting out of hand, a dose reduction would have very little effect on my chances of staying clear.

Thats interesting. Its the first time I've been able to use those words. Staying clear, Virus free, Cured! Just practicing at this stage of course, but I rather like the sound of it!

Besides being good news for me hopefully this will be some encouragement to others who have been unsuccessful in the past. If you keep battling you can get a result.

Monday 19/09/2005 - N n n n nineteen?

Well I can't let the fact that injection 19 on the nineteenth of the ninth go without comment, can I? Actually, I'm cheating by writing this two days afterwards, having been pretty rough at the time. I finally succumbed to attempting to treat the 'runs' with Imodium, and it has worked. Wish I had done it earlier! Still, there is a fine balance between taking anything that might disrupt the medication, and risking it being disrupted anyway by not being in the system long enough to be effective. Either way, Imodium works, so keep it in mind! Actually doing the injection while feeling like death warmed up was a bit of a struggle, but I'm through it now, and improving rapidly. The Boss talked me into it, but I OK'ed it with Paul who has used it before just to be on the safe side!

Actually managed some proper work today, and spent the early evening harvesting the grapes from the garden vine and processing them into juice. We have a gallon of juice, which I think is pretty good for one vine only planted two years ago, and vintage 2005 looks very promising. It should in theory be pretty good stuff by the time I'm allowed to drink it!

There is an interesting study just released that has discovered that EVR testing at 8 weeks is just as effective as the normal 12, so this may reduce the dreadful wait that Genotype 1's like me get at the beginning of treatment, with the threat of being taken of treatment and branded a non-responder hanging in the air. At least if this is adopted, the test comes a month earlier, and it saves a month of unpleasant treatment for those for whom it will not work, and of course it saves the NHS money and frees up a few treatment slots. Looked at this way, it has positive benefits, but I still empathise with the many 'currently hopeless' cases having spent so long in that category myself.

As the eternal optimist, I can forsee the day when HCV will be treated with a six week course of tablets, which have no side effects and get a 100% result. It will all become one big non-event. My guess is that it is at least ten years away, and I can't help but wonder if we will still be failing to diagnose cases then as we do now due to lack of awareness in the general public, and medical profession. Death from HCV? No! Death from ignorance!

Friday 16/09/2005 - Down the pan?

Has it really been a week since I last wrote here? It certainly doesn't seem like it, but one part of my anatomy would argue! The short explanation is that I have been cursed with a really vicious stomach bug which started last Friday, and am only now just getting over it. I can explain first hand what it feels like to have dysentry, because that is exactly what it was like. I'll spare you the gory details, and just say that things are nearly back to normal, apart from the fact that I am totally washed-out and weak as a kitten.
It is a sod to treat in the circumstances, as the normal method is 24 or 48 hours starvation followed by bland food. The bacteria has nothing to feed on, and your immune system mops up the leftovers. Obviously this is not an option while on treatment, as the ribavirin has to be taken with food. Depressed immune systems are not very efficient either. Still, I'm over it now, and hopefully the absorbtion of the ribavirin was not significantly affected, which was the other big worry.
It would be useful if they did an injectable version of ribavirin for these circumstances, so that you could be sure that you were getting the required dose, and still be able to treat gastro problems effectively. I am extremely reluctant to take any additional medications while on treatment as many reduce the effectiveness of treatment. Even a simple antacid reduces the effectiveness of ribavirin by 15%. The effects of the sort of cocktail of supplements that some HCV patients take can only be guessed, but I am certain that it jeopardises the chances of a cure in many cases.

From recently published data it now looks as if ALL cases of Hep C will eventually progress to cirrhosis unless death from other causes intervenes. This has been much debated in the past, as the accepted thinking has been that only around 20% of cases would do so. Not so, apparently. If the new interpretation is right, it has a bearing on many treatment decisions. The crucial factor is the length of infection. Recent infections respond very well to treatment, so it makes good sense to treat them as a matter of priority while the odds are still good and the virus has had no chance to do any damage. Outside of this group, the longer standing infections have the most chance of progression and targetting treatment to this group will have the most effect on the depressing statistics. In an ideal world all cases would be treated immediately, but resources are scarce.
By the old thinking, if you had the virus for say 30 years and had no symptoms, you would be reasonably entitled to hope that you were in the 80% group that did not progress, and would continue to escape the consequences. By the new thinking, you are in a group that is MOST LIKELY to progress. None of this effects the numbers, but it does stress the need for close monitoring of long standing cases, and where possible, treatment.

Thursday 08/09/2005 - Mice, men, dogs and rats.

Well today should have been a good day, but didn't quite happen. I got a call yesterday from a Channel 4 TV journalist. Would I do an interview on NICE guidelines and their impact on Hep C treatment? Delighted, no problem! The journalist and camera crew arrived at lunchtime today, and we proceeded to do the interview. I had the forethough to chat to the manageress of the pub over the road the night before, and borrow the use of their garden. Mine is tiny, and five people and a camera and tripod would have been a squeeze. Anyway it all seemed to go very well, and they headed off to London to edit the piece for the 7 o'clock news.
I'm then in a quandry. Unlike print, TV is instant, and if you miss it that's it! I eventually decide to tell everyone on the forum, and splatter emails everywhere. Sure enough I get a call from a very annoyed reporter saying the story will not make the news tonight due to pressure of other items. Oh well! Some you win, etc. and I have to let everyone know that it will not happen. Highly embarrasing and it makes me look a prat. Nothing new there then!

It turns out that I've been upstaged by a dog again. In fact several, and you can add rats to the list, and whatever else Huntingdon Life Sciences are in the habit of using for animal testing. The headlines were about the postponement of HLS's New York Stock Exchange floatation due to animal rights activist action. To be fair, I should blame the activists rather than the animals.

I regard animal testing as a necessary evil, and providing it is very strictly controlled and only used when no other option is available, I have no problem with it. I do wish the activists would approach the subject from a more intelligent point of view, and say, for instance, why do you use animals for the 'XXX' test when the 'YYY' skin cell culture test would give the same result? In other words, work on the regulations rather than anything else. Fluffy bunnies etc make wonderful emotive images, but protesting about their use in labs seems a bit hollow to those who have a life threatening condition. A few volunteers to take part in drug testing from amongst the ranks of the animal rights extremists would be a wonderful jesture of sincerity!

Friday 02/09/2005 - Premature eradication?

Email from 'T' today saying that last weeks PCR came back positive. Not surprising really, as 16 weeks is very early. Genotype 1 is tough stuff, and 24 weeks is much more likely as a clearance date. I'm a little deflated, as getting a negative at this stage would have been a nice boost, but it is the long term result that matters, and it will take as long as it takes.
So it is plod on to the 24 week mark and see what happens then.

Wednesday 31/08/2005 - Week 16 Bloods!

'T' has just emailed this weeks blood results.(Last month's in brackets.)

White cell count 3.8 (3.1)
Neutrophils 1.1 (1.0)
Hb 12.1 (12.4)
Platelets 201 (188)

This all looks pretty good. The area of concern was the continuing drop in Neutrophils, and white cells, which appears to have stabilised. With any luck the figures should stay around these levels for the remainder of treatment, so all looks set fair for the full 48 weeks.
There is a virus PCR result outstanding, done at the same time as the routine blood tests, which will hopefully be through in a few days. I think that there is a fair chance that it will be negative, but it is a little early, and 20 or 24 weeks would be more realistic. I have made it plain that if I am still PCR positive at 24 weeks, then I want another viral load done. If it is up on the last figure (616) then I am coming off treatment. The thinking is that if the virus numbers start to grow despite treatment, then all prospect of a cure vanishes, and I might as well save myself six months of side-effects, and free a treatment slot for someone else. There is no point in throwing resources at a lost cause. It is slightly unorthodox thinking, but based on good research in that I have never heard of anyone with a viral load that increases after 24 weeks actually achieving SVR.
Addenbrookes have hit the financial ceiling that most NHS trusts have now encountered, so it is doubtful whether the slot would be used, but at least the NHS saves about £6000 on the drugs bill.
Hopefully it will not go this route, but it is nice to think it through, and be clear of how to approach the issue in advance, should it happen. I cannot understand why treatment centres don't adopt this policy, as continuing to treat a hopeless case is cruel and wasteful.

Sunday 28/08/2005 - One third there

Well it is week 16 on Monday, and it marks the one third way milestone. I suppose it is a good time to summarise the side effects so far, just in case you think that I am getting away scott free!

On the physical side, I've got most of the 'flu-like' side effects fairly well under control by taking paracetamol before they occur at the times when I know it will happen. I get the occasional sweaty sleepless night, but fairly rarely now. The shivers and shakes have stopped, or have been dealt with by the same paracetamol. The breathless bit is becoming less bothersome since I realised that you can work through it. It seems to be a passing phase brought on by the start of exercise, and if you ignore it, it just goes away. The same applies to the swimmy head that you occasionally get when you stand up. Once you realise that it is harmless and there is no need to react, it just becomes a minor irritant. The tiredness seems to be easing, and comes and goes anyway. Doing less while tired, and more while OK seems to be the best plan. I have definately got on top of all the ribavirin gut problems, and it does make all the difference. Last time round I suffered badly, but this time no problem!

The catalogue of minor irritants is growing. Thirst is one, and I try to keep my fluid intake sensible as I do not want to degrade the effects of the interferon. The penalty of this is that I tend to get dry eyes and skin. The skin spots and itchy scalp are also irritating. I think that some of this is depressed immune system not fighting bacteria effectively. My hair (or what is left of it) continues to thin, but it was going anyway, so what the heck! I find that I have to be careful and conscious of body temperature. This may mean getting out of strong sunshine if I think I am overheating, or putting on extra clothing if I feel cold. I sometimes need to make changes in short succession. I guess that the treatment affects the body's temperature regulation, or at least seems to.

All in all, the physical side effects are tolerable, and generally not much more than 'b****y irritating'!

The mentals are a different matter. I still get phases of 'Jack Russel Syndrome' where your mind gets hold of an idea and will not let go. It tends to find outlet on the web, which is probably the best outcome, but occasionally I can divert it into useful work. The Boss invariably complains, but it is totally non-controllable. It is the one symptom I would avoid if I could.

Generally, I think it is all going fairly well, and I am confident of getting through treatment and remaining intact and functional.

Hopefully I am virus free by now, and the old toothbrushes etc have been replaced. The holiday reminded me to bin the stuff in my travel bag, which is a point worth remembering.

Only another 32 weeks to go to the next test. I could make a serious case for doing one at 24 weeks, for morale purposes if for nothing else!


Friday 19/08/2005 - Absolute Chaos!

Where do I start? I'll do this in time order to make some sort of sense of it. The 12 week viral load count came through on Thursday morning just as we were about to go on holiday. In fact I had already shut down the machine, and the Boss made me run it up again as 'T', my nurse, starts early. Sure enough it was there. The magic figure is 616 particles/millilitre. It amounts to EVR by a factor of over 10, and means that the pressure is off, and I'm now in it for the Full Monty of 48 weeks. It is damn good news and very welcome! I am particularly pleased at clearing the threshold by such a large margin (3.1 log) as it means that the odds of a successful outcome are high, and it is a small demonstration that it can be achieved even by a third-time-on-treatment 'old lag' like me. If I can make it so can most others!

After the news came through I had just enough time to send on quick email to a handful of addresses, and post a quick note on the forum, before diving into the car and heading south on holiday. My apologies for not being around for the replies, but thanks to everyone, and sorry if I haven't been back to you yet as things are pretty chaotic!

Devon was wonderful, but then Devon always is. I put a waterproof coat on once during the stay, and that was just to prevent the Atlantic Ocean from attempting to empty itself into my right ear while rock fishing. Climbing up and down the cliff to my favourite fishing platform was still practical despite the anaemia, but doing it twice in short succession when I ran out of hooks was a bit much. Needless to say, the Boss stayed at the top and caught a bigger fish than me, but then she usually does!

This was a multi-venue holiday, and the next port of call was Bristol. We looked around SS Great Britain which is a fascinating slice of history. Well worth a visit if you get the chance.

The next bit of news arrived in that the Daily Express article was published. It seems to have gone down quite well. The text is on the Hepatitis C Trust's website here for anyone who missed it. It is a strange feeling to have your picture in a national newspaper, but it seems that standing up and being counted gets results. Hopefully, there is some more in the pipeline. By the way, if any lady with Hep C is interested, the particularly good reporter who prepared the two recent pieces in which I was involved is looking to do a similar sort of thing for a women's magazine, so if any lady feels that they would like to put a female perspective on the subject, drop me an email and I'll put you in touch.

The last days of the holiday were spent chilling out, fishing again and socialising with friends. Fine food, and better company! What more could you ask?

Then the long trek back to normality, and the current chaos. I've been fighting through a weeks worth of spam, emails, and the feedback from the Daily Express article. The paper seems to attract a very high standard of readership, as I have received emails and some very good questions. I hope I'm on top of it now, so keep them coming!

Needless to say my PC decided to play up in the middle of all of this to add to the general chaos, so I'm now operating on two at once until I sort it out. The joys of computing and ribavirin! Together they would test the patience of a saint!

Looking back on the last few days, one very odd thing sticks in my mind. It is strange how sordid 'fixing-up' in a hotel room actually is, even if the drugs are actually fully legal!

Monday 08/08/2005 - Lucky for some?

Well, it is injection number thirteen in a few minutes. Hence the 'lucky for some'. In a perverse sort of way I am lucky as I shouldn't be getting it without the test result, and there is no news of that yet. Wednesday still looks likely!

If the NHS got its act together and prioritised the tests they could save an awful lot of cash. Another couple of days waiting for a result at treatment start is no big deal, as you are being treated anyway. At 12 weeks it is another matter. If the test is not back inside a week the NHS has to stump up for a months worth of treatment, whether you make the 2 log drop or not. This amounts to around £1000. A good few of these could be saved if the labs always did EVR tests as soon as they came in, and left the others until later if need be.

This morning I was upstaged. The national paper photographer turned up, and was snapping away, when he and the Boss both burst out in laughter. The dog was posing next to me, and probably doing a better job! We shall see!

The current area of great concern is what state the house will be in in two weeks time. The Boss and I are slipping away to the West country for a few days, and grown-up(?) son and daughter are house/dog sitting. I expect to find a disaster waiting for us when we get home, so anything else will be a bonus. For the record, I'm likely to be away 11th to 19th August, so don't expect too much blogging in that time! I will make strenuous efforts to get the test results up here somehow, assuming they don't arrive before I leave.

Friday 05/08/2005 - Still in suspense!

The lab screwed up and ran out of test kits, so I am told. Instead of their usual 60 tests a day they managed 15, of which mine was not one! It looks as if the result is likely on Wednesday, and 'T' is furious and phoning them twice a day until the result arrives. Oh well! More stress and sleepless nights to come, but at least I'm guaranteed another weeks treatment. Every little helps (as the man said when he urinated in the sea)!

Thursday 04/08/2005 - Pregnant Pause

Well I did the crucial 12 week test on Tuesday, and with any luck I should get the results tomorrow. It could run over into next week, so mustn't get hopes too high yet. The wait is doing nothing for my concentration which is why I'm blogging now rather than working, hence the 'pregnant pause' comment. I could blame the prat who has left two yapping dogs locked inside a car right underneath the window, or the builder with the hammer drill next door, but the truth probably lies between my ears rather than outside the building!
'T' has just emailed this weeks blood results.(She is wonderful!) The normal ones:-

White cell count 3.1
Neutrophils 1.0
Hb 12.4
Platelets 188
ALT 36

Week 12 extras:-

Albumin 35 (35-55)
Bilirubin 8 (3-10)
Alkaline Phosphatase 101 (38-126)
TSH 1.1 (0.4-4.5)

Neutrophils getting uncomfortably low, and if they drop below 0.75 this spells trouble, but otherwise all looks good. It would be the final irony if I have to stop treatment due to my immune system failing, having actually got EVR! An interferon dose reduction is more likely, but would not exactly be welcome as it does not improve my chances of a long term result.
It is quite interesting to review the 'pressure' aspects at this point. I can quite see why many struggle at around this time, as it is all pretty fierce, but I'll get through!

Talking of treatment, a few things have emerged recently which may have significant long term effects. Up to present it has generally been the accepted view that Pegasys and PegIntron, the two most common interferons, have little to choose between them. Recent results are showing that this is not the case. There is quite a marked difference in response between different interferons and different genotypes. It looks as if Pegasys will end up being the preferred treatment for genotypes 1,4,5 & 6, and PegIntron for genotypes 2 & 3. This has been the accepted view in some circles for some time, but there is now sufficient good data to trust it!

It also seems that 'short course' treatment is practical for genotype 2 and possibly genotype 3. The protocol goes like this:- Treat for four weeks with Pegintron/ribavirin, and test for virus still present (PCR test). If still present treat for a further 20 weeks. If not detectable at four weeks treat for a further 8 weeks. The net result gives the same SVR rates, but with a slightly increased long term relapse rate. (It would make sense to re-treat relapsers for 24 weeks.) This would obviously have a big impact on treatment cost and also reduce the drop-out rate as 12 weeks is a lot more tolerable that 24. It will probably be several years before this is adopted in the UK, but elsewhere where treatment regimes are more flexible it may become the standard.

There is also a school of thought that says that PegIntron should be given as two injections per week, as its half-life is considerably shorter than that of Pegasys, and the end-of-week levels are very low. If this and the 'short course' were combined it could have a major effect on genotype 2 & 3 treatment.

This week the Boss and I actually made the Health Section of the local daily paper. Quite a good article, and quite accurate considering I didn't get sight of it before it went to press. We are now locally famous, which is a bit of a mixed blessing. Still, it all helps spread the word. Those of you with insatiable curiousity will find it at the Hep C Trust's newspage here. It looks as if one of the nationals is interested, so we may end up there as well. Good note to end on for the time being!

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