It's been a while...

My thanks to Paul, for after a very long time, his recent post has made me realise I may as well continue the story I began here.
The truth is, the failure of my last dose of interferon treatment knocked me a great deal. It took about a year to recover. I was in a dark place, I admit. Since then I've tried to enjoy as full a life as I can. Oddly, because I was no longer on treatment, I felt better than for years and have been in a happier place since.

That said, my liver is not in good shape. Fibroscans, assesing cirrhosis, are so high the doctors have stopped testing me. I have been waiting for the tormented organ to give up and get a transplant.

However, recently a new set of drugs have appeared. These drugs act on the lifecycle of the virus and have proved to been very effective. They quote 95% "cure" rates. All well and good, but the treatment is so new and expensive ($1,000 a pill) many countries are reluctant to use them. The good news is that NICE has now approved it and NHS England have stumped up a bit of cash for those in dire need. That includes yours truly.

I was told by my consultant I would start on the drug know as Harvoni last Tuesday. Unfortunately, at the last minute, the funding was suspended because of the election! I know it sounds odd, but it's true, and I'm not alone in being affected, read here... NHS HIATUS

So, once again I am in limbo. Meanwhile the virus continues to attack my body and drain all energy. Of course there is no guarantee the new treatment will work, but I really need to get on with it ASAP.

I'll try and post more regularly about this and other things.

Thanks for listening.

No news

Slightly disappointed about yesterday's trip to the hospital. I thought they were going to give me a viral load result from my two weeks blood test, but they did not take one! The test is clearly very expensive and they only do it when absolutely necessary. So, still no idea how the treatment is working. I can confidently say that I will know next Tuesday. The all important blood has been extracted and is laying in a lab somewhere in St Thomas's Hospital.

Hope

Well, as week four enters it's final days I am feeling hopeful. The recent blood test which revealed my baseline viral load as 1 million was good news on two accounts. When I began treatment before it was at 4 million so one assumes 1m will be easier to be rid of. Secondly 1m was the best drop that I achieved last time and I am pleased that my body was able to keep it at that level - one would normally expect it to rise back to previous levels after coming off treatment. If I do manage to knock the virus down to undetectable, this evidence implies, that it will remain there. Of course the fact remains that last time I could not get rid of that last 1m, but I think I was just exhausted by the process. This time it has not been so onerous. Naturally all hinges on my week four blood test. However I should get some kind of indication how things are going on Tuesday because I will get my week two blood test results back then and I'm hoping for a significant drop in the load. I have been pretty tired this week. Wednesday and Thursday as usual were the worst. Lots of headaches this time. I do worry that as the weeks go on there will be a culmantive effect. That happened last time. The sunny weather helped me keep a positive mood though. I'll post how it goes on Tuesday. Fingers crossed.

Week Two

I'm into my second week and feeling positive. Having read through my blog regarding the first few weeks last time, it seems the symptoms are much the same. Flu like symptoms after the interferon injection on the Tuesday night is followed mainly by a lack of appetite and lack of focus to do anything. I'm already fed up watching TV. The best thing to do seems to be to give myself some simple, short, task and then rest. I am keeping to a strict liver friendly diet for the first four weeks. I want my liver to concentrate on fighting the virus not digesting cheese and meat. I am also taking tons of minerals and vitamins to prevent all the mouth ulcers, skin rashes and hair loss that happened last time. Only time will tell if this strategy works.

One More Try

I am starting another round of Hep C treatment tomorrow.

I was unsure about recording the ordeal again in this blog - wondering whether I could be bothered to write down the ordeal all over again let alone expect others to read it. However, I do know that many friends and family who will want to know wants going on (God bless you) and this saves me repeating the same info over and over again. So I will keep a record, but it will be less graphic than last time, just the basic facts as to what's going on.

Let me start here by explaining why am I doing it when I said, after the last time, never again. First off is - the fact that according to tests done at the beginning of the year, the sclerosis in my liver has taken quite a nose dive. Second - there is a new drug: Boceprevir (also known as Victrelis) which improves the chances of success for patients who did not 'respond' satisfactorily first time by stopping the virus multiplying. (I am amongst the first 10 patients to be given it in the UK) Thirdly - the treatment protocol has changed, for the better.

The new treatment therefore will go like this.

Phase One: For the first four weeks I will be on Interferon and Ribaveron just as before. In that time I need to get what's called a one log drop which basically means if you begin will 7,000,000 viral load you've got to achieve a drop to 7,000. If you do not get to that then they stop treatment because they know its not going to work. As I did not achieve a one log drop in 4 weeks last time I think the chances of success are minimal for me and the whole treatment could be over by the beginning of October. Of course that's my head speaking, my heart say why not success this time, anything is possible.

Phase Two: If you get through phase one they put you on the new drug Boceprevir for four weeks. At the end of this time you are expected to have achieved a viral load of zero. If not, again they will stop treatment because they know it will not work in the long run.

Phase Three: If I am lucky enough to pass the eight weeks with a zero load then treatment on all three drugs will continue for around another 28 weeks making a total of 36 weeks treatment, though it could be more.

The good new is that is past results indicate that if you get to phase three there is a whopping 80% chance of success. Which I think is the grim realities of being on treatment. Who knows this time next year I may be a man transformed.

I'll let you know how I get on.

Feeling Okay

It's been a year and a half since my interferon treatment ended, and I thought it was about time to report here how things are. After all there may be others out there in the blogosphere who have also found their treatment prematurely curtailed due to a poor response. Well, I can report it's not all bad. I actually feel better now than in a long time. I seem to have more energy and lucidity than before treatment. The reason for this remains a mystery to me. It would be nice to have a viral load test to see if it has remained at a lower level than before the start of treatment, but the drug companies don't seem to fund this kind of follow up, therefore the hospital won't do it. Anyway bottom line is I'm feeling okay. Sure I still need to rest some afternoons and if I get a cold or virus it really wipes me out, but otherwise I can live with it. That's not to say I wouldn't like more energy! It would be great to feel well enough to believe I could work again, but with all the things wrong with me, on top of the hep C, I never know how I am going to be one day to the next. It's very frustrating. Thankfully I have my writing. On that subject, I will have a short story appearing in the anthology HOOVERING THE ROOF 2 which will be available in November. And the first draft of 'Mr. Reed' is nearly finished. So watch this space...

Deathless Extract

Thought it was about time I got in the saddle again.

An extract of my novel did get printed in the magazine 'One Eyed Grey' it looks very nice. Only problem is in the contents page they gave me the wrong name! I am called Richard Woodward instead of Woodhouse. Rather frustrating. I have agreed to do some readings at the up and coming Ghost Week through the mag. so perhaps that will be of more use. I've ben very busy doing stuff for the East Dulwich Writers Collection and being on Jury service. I'll post more about both of those soon.