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Hallelujah!!

Oct 14, 2009 - 0 comments
Tags:

SVR

,

treatment



An historical moment! Wednesday 14th October 2009, 1550 NZDST - I have achieved SVR!  Woot, what a feeling!!  It is like time has turned back 20 years to the day when they told me I had this virus and that there was no treatment for me.  At that time they thought Geno 3 was harmless and there was no point in treating.  Also, as my LFTs were elevated but still within normal range (just) the current treatment would not work for me.  From that point on having the virus plagued me and infiltrated every aspect of my life.  In hindsight I gave it all the power, I believed what 'they' said and believed there was no cure.  In a way I stopped 'living' and started viewing myself as a sick person.

Then 5 or so years ago, my LFTs did rise above normal and I pushed for SOC treatment. Imagine my horror when I did not respond to 24 weeks of SOC at all.  Thoughts about Hep C and it's treatment had changed and supposedly I  had one of the easiest genotypes to treat and I had an 80% chance of treating successfully.  Well, it didn't happen like that and I was given a new label, non responder, and put in the 'hard to treat' category and once again told there was no treatment for me as the 'gold standard' of treatment worldwide had failed for me.

Despite the disappointment and depression I held on to my dream that I would one day vanquish the alien invader... and kept turning up at the hospital every 6 months asking if there were any new drug trials for the hard to treat folks like me.

One day my doc said, there is a trial for a new polymerase inhibitor drug called R7128 (it was a Phase 1 trial which most people run from!) and that I was a perfect candidate for it.  He also said that he guaranteed it would make the virus undetectable in my blood.  Bold words I thought and immediately screened for the trial.

Incredibly, out of 60 people screeened worldwide, I was 1 of 4 people that were able to start the trial on May 18 2008.  It was the first trial of it's kind for Geno 3 previous non-responders.  Finally, the FDA had acknowleged there was a group of people out there that had no treatment options.  Most trials and studies are focussed on Genotype 1 as it has the greatest population and is the hardest to treat.  But it was now becoming obvious that Geno 3 was in second place in the hard to treats.  The FDA had fast-tracked the testing of R7128 to try and fill a growing need.

It was a double blinded, randomised trial and I had a 1in 5 chance of getting the placebo instead of the study drug.The 80/20 percentage again!  I took the study drug or placebo for 2 weeks along with SOC and  I was UND by week 4.  Woohoo!!  I then continued on with SOC for a total 48 weeks.

There were a few bumps in the road along the way, to say the least, but I made it through and every VL test I had post tx kept showing UND until here we are at SVR!  Fantastic.

So today I feel like my life has been returned to me.  I don't regret a moment of the treatment or how hard it was because SVR is such a sweet sweet feeling. Hallelujah!!


Day 7 Post

May 01, 2009 - 0 comments
Tags:

post tx

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post treat

,

post treatment



Not such a good day, tired, grumpy, slow speech and my brain just not quite firing properly.  Do I detect a pattern here? Good day, not so good day.  Could it be linked to the brief 10 days that I was alternating my riba from 1000 to 1200 per day?  I can't believe it is only 7 days since my last riba, seems like months ago..

Today I found out much this tx has cost me physically.  We had to go on a small bush walk today at work, there was a fair bit of up and down and I am embarrassed to say I was the 48 year old trailing behind everyone including the energetic 70-something!  Made me really aware of how little strength I have and how unfit I am now.  Hardly surprising when you consider I just spent a year virtually lying down.

I am a bit concerned as I have scheduled myself a challenging 2 weeks of location shooting 12 hours per day and after my pathetic attempt today I don't know if I'm going to be able to do it, and be the leader that everyone expects me to be...  I have 9 days to get it together, hah!!

Day 6 Post

Apr 30, 2009 - 3 comments
Tags:

post tx

,

post treatment



Much better day, felt more 'myself', no Temazepam hangover, cos I didn't take it last night.  Can definitely feel the difference...  

Bought flights up to California to visit hubby's mum, despite the swine flu.  We leave in 6 weeks, yay!  It feels great to have travel plans again!

More 'together' today, still have the cough but it comes and goes.  Will see the doctor if it's no better in 2 weeks...  

Energy levels much more constant and my legs don't ache when I get to the top of the stairs, and not nearly so much huffy and puffy when I move around.  Posture is improved.

Feel tired now like an ordinary person, off to bed for (hopefully) another good night's rest!

Day 5 Post

Apr 29, 2009 - 0 comments
Tags:

post tx

,

post treatment

,

supplements



Not such a a great day yesterday, felt very stressed, unstable and irrational in the morning.  Did some research on withdrawing from the Temazepams and it seems that could be the culprit.  I was so shocked by what I read on the net about them that I felt I couldn't swallow another one, so last night I didn't take any.  I had 10mgs of Phenergan antihistamine instead.  I also went to the osteopath in the afternoon and had some cranial on my neck which was fully jammed and locked.  That coupled with the Phenergan totally knocked me out and for the first time since stopping tx I feel that I had a decent night's sleep.

Continued to have hot flushes yesterday and so have decided to go back on to NHT, started with progesterone this morning and will be adding estrogen in a week or so.  Also started on a proper supplement regime.  Have decided to go with Cod Liver Oil for the Omegas + Vit A + Vit D, Usana Essential Vitamins and Minerals (no iron), plus additional CoQ10 and B12.  I am undecided about adding the resveratol, milk thistle, and TMG, will continue to research that.  Will add Glutathione.

Am feeling somewhat more energetic and alert today, I imagine that is a result of all the above plus the fact I'm now 5 full days clear of riba, and nearly 14 days since my last Interferon shot...  Also my arms, elbows and wrists have stopped aching, yay!!

All in all, feeling better than I have had in a long while...