Leeds ninth stop on FaCe It tour

The FaCe It photography exhibition will be unveiled in Leeds’s Central Square on Friday 10th February 2006.

Local resident Harvey Huckerby, whose picture is included in the display, will launch the exhibition to media at 10am on the 10th.

For further information on the event, which will last for two days, please call Chris Duncan on 0207 815 3900 or email chris.duncan@munroforster.com

NHS

Should be a decent turnout and well worth a trip. Might even make it myself subject to Police approval, they may need extra officers to keep all the wimminz away.

So there you are just walking down the street minding your own business when BANG you trip up on a bit of paving stone, the first thought that pops into your mind is….

a) “I’m going to sue the people who laid that stone”

b) “I need to watch where I’m going”

Now its not my place to judge what is the “right” reaction but I can tell you this, the person who goes with b) is less likely to break his toe in the future. This post is for people who want to watch where they are going.

“The winds and waves are always on the side of the ablest navigators.” - Edward Gibbon

The Doctor Says I have Hepatitis C, What Can I do to Make a Positive Difference?

You would be surprised but lets face it some things you just can’t change. Number 1 is genotype, roughly from hardest to cure to easiest you have 1,4,3 and 2 and there isn’t anything you can do about that fact. Gender seems to play a role with males tending to respond less well than females, not a great deal you can do about that. Thats the bad news out the way now the good, its my contention that almost everything else you can influence to a greater or lesser degree, you can tip the scales in your favour.

OK I’m Hooked, Tell Me What to do Mr Knowitall.

Lets get something straight, I’m just a boy with hepatitis c not a Doctor. Read this by all means but don’t take it as gospel, use it only as a prompt to encourage you to get up off your lazy ass and do your own research.

Nobrainers

This section assumes that you are on treatment or just about to start, in short that you have no preparation time. These “tips” should be doable by anybody, have no financial cost and have no downside regarding treatment success. The inclusion of Cannabis in this section is somewhat controversial, it may get moved it may not.

1. Alcohol
Do not take any alcohol, none, not a drop, not ever. There is no safe level of alcohol for people with hepatitis c , there is no level of alcohol that will benefit your health. You will come across the occasional Doctor who says its OK in moderation, or that you can have a glass of champers at a wedding, smile and nod and ignore them. If you are unaware that alcohol damages the liver you won’t be smart enough to work out how to get on the Internet, you are on your own. If you continue to drink after being diagnosed with hepatitis c you are a complete idiot, thats being polite I would have been happier using some swear words. If drinking is a problem get help.

Alcohol damages the liver, that is a bad thing.

Alcohol stops the treatment drugs from doing their job.

2. Compliance
This may shock you somewhat but if you take all your medicine when you are supposed to take it your chances of treatment working will improve. Isn’t that amazing? Compliance is something that is 100% in your control. Adherence is slightly different, not everybody can take 100% of their meds, Doctors may order a dose reduction as an example but keep your end of the deal and make sure you comply 100%.

If you want a rough idea of how big an impact this could possibly have think in terms of an “average” genotype 1 having a 50% chance of achieving SVR with 80% adherence, hit greater adherence and you could be looking at over a 60% chance, maybe more if you get 100% adherence.

You need to get a pill box because sooner or later you are going to forget whether you have taken the tablets, a pill box will take the pressure off. The time to buy a pill box is day 1, don’t wait until you forget your pills to realise that you must have one.

3. Take Your Ribavirin With a Meal & With Fat
Ribavirin AKA Copegus, Rebetol, riba is the pill component of the current interferon / ribavirin combination therapy. Dose will depend on a few factors but it is always taken with food twice a day. The bioavailability of ribavirin is increased by having a meal with a high fat content, put simply that means more bang for your bucks [PDF]. While somewhat going against the general health advice to lower fat intake this is one time to make an exception or more sensibly save your fat intake for Riba time.

Ribavirin is a nasty drug, they coat the tablets for a very good reason. If you do not take your Ribavirin with a meal, thats right a meal, you will get an upset stomach, it will make you nauseous. Don’t feel like eating when its Riba time? Tough titties, get the meal down your neck, it is vital.

BTW A cup of coffee and 2 cigarettes is not a meal

4. Just Say No to Cannabis
Let me first declare some bias. I have tried cannabis once or twice and been unable to see the attraction, to me its just like giving yourself a great big shot of lazy and dumb. I know a few people who I would consider regular users, as in daily, and without exception they are the most lazy, demotivated, poor, depressed and generally unable to cope people I know. I understand that at one time smoking the weed was considered quite cool, thats not really the case now, the real cannabis demographic is chavs and pikeys.

Now that the prejudice out the way, lets have a look at some “facts”.

Frequent cannabis use can trigger depression.

Cannabis increases the progression of liver damage in people with Hep C.

Make of that what you will but apart from drinking I can’t think of anything you can take more damaging to your chances of sucess on treatment than “the weed”. The treatment drugs will be doing their best to make you lazy and depressed, I think it is somewhat unwise to pour petrol on that fire, don’t you?

5. Wash Your Hands
The Interferon and Ribavirn drugs used in treatment don’t just attack and destroy the hepatitis c virus, they also attack other healthy cells in your body. As a general guide the effects will be more common in cells that have a short life, such as skin, hair, mouth cells etc, your white blood cells also fall into this category. A vital part of the immune system a simple way to look at the role of white blood cells is that they eat up any germs, bacteria mainly I think, on treatment some people see a drop in white blood cell count this means they are less able to fight off infections.

Infections whist on treatment will not only make the experience less tolerable but in a few cases can lead to dose reductions or even treatment being stopped. The easiest, most effective, way to prevent infections getting started is to wash your hands.

Despite the proven health benefits of hand washing, many people don’t practice this habit as often as they should — even after using the bathroom. Throughout the day you accumulate germs on your hands from a variety of sources, such as direct contact with people, contaminated surfaces, foods, even animals and animal waste. If you don’t wash your hands frequently enough, you can infect yourself with these germs by touching your eyes, nose or mouth. And you can spread these germs to others by touching them or by touching surfaces that they also touch, such as doorknobs.

http://www.mayoclinic.com/health/hand-washing/HQ00407

When should you wash your hands?
You should wash your hands often. Probably more often than you do now because you can’t see germs with the naked eye or smell them, so you do not really know where they are hiding.

It is especially important to wash your hands

* Before, during, and after you prepare food
* Before you eat, and after you use the bathroom
* After handling animals or animal waste
* When your hands are dirty, and
* More frequently when someone in your home is sick.

What is the correct way to wash your hands?

* First wet your hands and apply liquid or clean bar soap. Place the bar soap on a rack and allow it to drain.
* Next rub your hands vigorously together and scrub all surfaces.
* Continue for 10 - 15 seconds or about the length of a little tune. It is the soap combined with the scrubbing action that helps dislodge and remove germs.
* Rinse well and dry your hands.

http://www.cdc.gov/ncidod/op/handwashing.htm

5. Buy a Hat
It must be hard being a Doctor. You sit somebody down, explain about the Hep C virus, what treatment entails and then ask if the patient has any questions. One of the top questions that will come back is “Doctor what about my hair, will it thin, go dry, fall out?”. Its at times like this that we can all breath a sigh of relief that little Hep C Boy is not a Doctor, because I promise you a question like that would lead me to lean over the desk and black both your eyes.

Get a sense of proportion, you have a virus that is attacking your liver, for some of you treatment may be the biggest challenge in your life, this ain’t Miss World or Mr Universe this is the virus killing game.

Yes your hair will go thin, yes some of it may well fall out [mainly the 24 week plus crew], no its not a good idea to dye your hair with a bunch of chemicals. Buy a hat.


[More to follow, this is a work in progress and will be updated regularly. Corrections, suggestions and constructive criticism welcome ideally via the comments or email me at boy@hepcboy.com ]

I’ve got the key to the door, never been 21 before…..

Now that was a rough week

Nothing major but I think the combination of a bit of an ear infection, ditto mouth, a bit throaty and the usual tiredness pulled me down a little. Have still remained quite active, got plenty of work done, had a couple of meetings [bidness] and dealt with some high level complex stuff, tax matters and some legal bits & bobs. All in all not a bad week from that point of view but I get the distinct feeling that in the last 2-3 weeks something has been “pulling me” down.

This might sound a bit strange but stay with me….but the worst time I have had on treatment so far was about weeks 5 - 9ish. Back then it felt as if a screw was being tightened, that the pressure was coming from above. The last few weeks has felt like something is pulling me down from below, strange eh?

On the subject of strangeness I had another, shall we say, interesting moment earlier in the week. I started on a 48 week treatment course which is the usual stretch for us Genotype 1 heppers, but some [genotype 2 & 3's usually] treat for 24 weeks. In an idle moment the thought occurred that if I was on 24 weeks then I would only have 4 weeks left to do. Before I could stop it a thought flashed through my mind, “please let it be over now”. I found that interesting, many people say that the worst part of treatment with this Interferon / Ribavirin combo is the last few weeks, when in many ways with the finish line so close you would think it would get easier. I think in my brief moment of thinking [dangerous I tell you] I got a brief flash of the emotions that must be at play in the final lap. I’m glad, forewarned is forearmed and in my case with no defined finish date I may avoid that problem totally.

So thats it, another week bites the dust…mouth guard back in….good firm bite down….lets go!

You cannot run away from a weakness; you must sometimes fight it out or perish. And if that be so, why not now, and where you stand.

Robert Louis Stevenson

Keep the faith, kill the virus.

The meeting with my consultant happened as planned on Monday. It went well really and to cut to the chase I’m still on treatment and will have another PCR at 24 weeks, once we have the results of that we can move forward with one or two options already agreed. I suppose the main thing that came out of it is that it is very unlikely that I will treat for just 48 weeks, hopefully 72 weeks is likely but who knows maybe longer. Then again we could get to the 36 weekish mark and things, treatment wise, could look bleak. To be honest I don’t care where we are at that stage, I signed up for 48 weeks and thats the minimum I’ll do. I could give you some valid reasons for that but if truth be told its down to one thing only, pride.

In the cold light of day at stage 6 liver damage there really isn’t any downside to treatment, from both a health angle and from a financial one. Just a tip, if you can try and think in terms of financial benefit and can make a good case you may find “outside guideline” treatment easier to obtain….just sayin’

Without wanting to go into detail of the meeting its was if the good Doctor was reading from my own notes, he covered all the points I wanted to raise, discussed alternatives and showed that as long as I show the commitment and desire that he will match it. Another tip, find a good Doctor and put your trust in them, give the “relationship” 100%. A good way to check if you have reached the 100% is the sit down test, if the Doctor says sit down don’t even look for a chair [I'm only half joking].

Thats the boring bit out the way. Of real interest is that for the first time I went fully suited and booted, even wore a tie which is almost unheard of. Don’t get me wrong I’m always smart, if fact sharp would be more accurate :), but this was the first time that full force smartness came into play. If truth be told I don’t think it would make any difference with the Doctor or indeed my nurse but don’t take that as invitation to dress like a dosser, it did however make a difference to some “bystanders”.

So there I am walking down the corridor and some random Doctor looking geezer is coming the opposite way, he obviously catches sight of me out of the corner of his eye and gives the outfit a quick once over. You could almost see the mental calculations on his face as he checked out the style and after a millisecond he nodded to me as if we were old friends. I could see what he was thinking, he first thought was that I was a fellow Doctor but then he realised that no Doctor, with the possible exception of Dr Dre, has ever been this stylish. I must be somebody much more important he surmised.

Just after that the truly shocking moment arrived. I walked up to the receptionist and you will not believe this but on my life the miserable bitch actually looked up and then [steady yourself] smiled at me!

Life truly is full of surprises.

Another one hits the “track”.

Schering-Plough Reports FDA Grants Fast Track Designation to Oral HCV Protease Inhibitor SCH 503034

Schering-Plough today reported that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation to its investigational oral hepatitis C protease inhibitor (SCH 503034), currently in Phase II clinical development for the treatment of chronic hepatitis C virus (HCV) infection.

The FDA granted Fast Track designation for the following reasons:

The proposed first indication for SCH 503034 is for treatment of HCV in patients with HCV genotype 1 virus who have not responded to combination therapy with pegylated interferon and ribavirin, the current standard of care, thus representing an unmet medical need.

SCH 503034 is an orally active inhibitor of the hepatitis C virus serine protease that inhibits HCV replication. This mechanism is distinct from those of current therapies, thus SCH 503034 represents a novel class of HCV inhibitor.

Status of SCH 503034 Clinical Development

SCH 503034 has demonstrated potent antiviral activity and was well- tolerated, both as monotherapy(1) and in combination with PEG-INTRON(R) (peginterferon alfa-2b),(2) in Phase I clinical studies in patients chronically infected with HCV genotype 1 who were nonresponders to previous therapy, including peginterferon and ribavirin combination therapy. Results of Phase I clinical studies with SCH 503034, including in healthy subjects,(3) were presented at the 56th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD) in November 2005. HCV genotype 1 is the most common form of the virus worldwide and is considered the most difficult to treat successfully.

Press Release

Time for a little reflection methinks…..

Opinions, facts and feelings are fluid things, as more information comes in they change or at least they should change. I consider myself a pretty fluid boy although its fair to say that not many people who know me would agree, I think that is because of my “plan” problem. I believe that there is no such thing as a bad plan as long as you follow it through, choose your path [hopefully wisely], give it 100% and execute it. I think that beats a great plan poorly executed everytime.

My treatment plan was very simple, take all my drugs when I should take them, 100% adherence was the target and to be honest SVR [or a cure if you like] never came into the equation. The main thing, the only thing, was not to quit. There are a few practical reasons for that, you have to finish the race before you can win it, but the main reason was psychological. With cirrhosis its highly likely this won’t be the first “challenge” I will face, in many ways this is the easy one, so now is not the time to become accustomed to losing, to quitting, to simply give up. Its the whole “drawing a line in the sand” thing.

That approach does have a fundamental flaw, the problem being that if you don’t achieve a 2 log drop at 12 weeks then your chances of SVR are between zero and 2% at best, best guess for me is about 0.25%. Usually the medical people would withdraw treatment, which they haven’t *yet*, but that would destroy my plan. That means I have had to adapt the plan on the fly. Now the plan is to achieve SVR on this round of treatment, adherence is a major component of that plan but it is no longer the only game in town.

I have my appointment with the Consultant tomorrow, with luck I hope to be able to discuss how we can force me down to undetectable and beyond, thats the new plan. I think this is going to be difficult, the medical people will be faced with a patient who has changed from one in whom they can rely on to do exactly what they tell him to do, when they tell him to do it, to one who will “question” the path we are on and push for change. That change will have to be managed well, managed by me, its vitally important that we remain a team and work towards the same goal. Part of that will be my ability to have “empathy” with them, to understand the forces and pressures that define how they do their work and financial considerations will be a big part of that. We shall see.

So there you go, I am quite fluid really Only on some stuff though, some stuff never changes. Never quit, give it your all, accept that the major factor in all of this is yourself, take responsibility. All those things are the foundations to my life, I can’t see them ever changing. The main aim is to be able to look yourself in the mirror, if you have to crawl there to do it then crawl. Without that you are just the living dead.

Winning is not everything, but wanting to win is.
Vince Lombardi

Just so you are all aware this post has broken a golden rule of treatment, don’t think too much, its dangerous. I hope that tomorrow I don’t break another golden rule and fail to remember that “a little knowledge is a very dangerous thing”.

So thats where we are today, looking back and looking forward. The main difference in practical terms from pre-treatment is simply this…..here and now a 0.25% chance of SVR looks very attractive, If I could only double that

We are not permitted to choose the frame of our destiny. But what we put into it is ours.
Dag Hammarskjold

Its really goodbye to week 19 and the start of week 20 but whose keeping score.

What have we learnt this week campers? We have learnt that food, sleep and water are very important.

Overall this week has been a bit flat, not dissimilar to last week, mainly I think down to my sleeping pattern being disrupted. I slipped into a nice routine, sleep at about 11pm and up at 6am, that worked great for me. I have never been a morning person, it takes me quite some time to get going and this is true whilst on treatment just a little magnified. A late night means a late start which means an even later functional time, makes me slip out of sync with the rest of the world.

Had a couple of slack days on the food and water angle, just forgetting to eat and drink due to a lack of appetite. I really need to concentrate more, simple stuff like that should be 100% nailed 100% of the time.

On the good news side me and the wife had a bit of an argument. I won’t bore you with the details but suffice to say my primary role in the family is to make the strategic decisions that will create the right environment for the familys happiness. Sometimes those decisions will place a burden on individual family members, 99% of the time that is me, this week the wifes 1% came into play. The reason that is good news is that made me realise we hadn’t had a cross word for 5 months, might give Ross Mcwhirter a call

Your inspirational quote for this week, should you choose to accept it…….

“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.”

Lance Armstrong

Keep the faith, kill the virus.

Now Cliff Arnall, a health psychologist at Cardiff University, has devised a formula to work out the worst day of the year and has come up with January 23 for 2006.

His calculation is based on the poorest weather, debts owed for seasonal spending, the time since Christmas, the period of time before you abandon New Year’s resolutions, the dates when motivation levels seems to be at their lowest and the timing for the need for action to escape the blues.

Source

Or for those of you not from Leicester here is the formula: [W+(D-d)] x TQ over M x NA where W represents weather, D is debt, d is monthly salary, T the time since Christmas and Q the time since you tried to quit a bad habit. M was for low motivational levels and NA the need to take action.

Notice there is no deserve in there, thats because deserves got nothing to do with it

Rule 4

Deserves got nothing to do with it.

Here in the UK we have a free health service paid for with taxpayers money, its not perfect but I’m a big fan. The danger with such a service is that people can start to think in terms of “entitled” or “deserve”, thinking like that will kill you.

You need to ensure that you get the best medical care available, there are a lot of things YOU can do to achieve that aim.

Here’s one…When you go and see the Doctor dress to impress, make the effort and show visually that you are a motivated and committed patient, it works. It has a double advantage too, when you are feeling down and rough and need some help you can “dress down” a little, send the Doctor a visual signal.

Life is very simple when you put aside the concept of deserve.

And another week sails by…..

Again a good week, not as good as last week mainly due to a “down” day on Wednesday. Son was ill with some bug which I’m guessing I had a little of too, soon shook it off though.

Generally feeling very well but with more aches and pains which is hardly surprising as I have been throwing a few weights about this week. Feeling much the better for doing that, the feeling of wellbeing after doing some training is almost worth any short term price. The muscle stiffness should be gone in a day or two and I can get down to some serious business.

I think its important to remember that you don’t live your life in a hepatitis c bubble divorced from everyday stuff. I would think that most everybody who kept a weekly “blog” of how they were feeling would have good weeks and bad weeks. Read the rest of this entry »