Great beach trip but life's a beach...3 mo. pcr

[merryBe]

Well I had the greatest 2 months of this decade, got to get out in my garden and plant a HUGE garden, tons of new shrubs and roses, catch up my taxes, and feel human for the first time in 2 years.
88 wks of chemo stole away all of my strength and most of my joy, it's been good to feel that coming back...makes you really see life anew.

SO things were looking up...got away to the beach for 3 days (1st trip in 4 yrs)..

and the beach was great!!  

but came home to face the music..knowing my labs were in process.

and yes life is a beach...more at sometimes than others.

the "beach is"...my HCV is back.  How's that for a summer fizzle.

I'd cuss but we aren't allowed...so duck, carp and then some.

mb

[HCA]

Sorry about your relapse-I do feel for long treaters perhaps more than other treatment failures.
I also looked for details of your virolgical response,but could not find them,although Zazza has.
Of course it all looks very clear with hindsight that the early viral rebound was a serious threat and that a variant would likely emerge post treatment even with an extension.
The good news is that you did reach undetectable status which means you should have relapsers odds if and when you treat with telaprevir.
If you can knock it down early you will clear
Best Wishes.

[zazza]

So sorry to hear you relapsed. You fought so long and hard to beat the odds.

You might remember I am always interested in numbers? I looked up your viral loads as best as I could in the archives. I am uncertain about the dates, but I believe I got the numbers right. When did you finally reach UND?

Baseline viral load: 1,400,000 IU/ml (log 6.146)
Week 4: 300,000 IU/ml (log 5.477)
Week 6: 700,000 IU/ml (log 5.845)
Week 12: 555,000 IU/ml (log 5.744)
Week 13: 55,000 IU/ml (log 4.740)

Take care,
Zazza

[CMcH]

My heart goes out to you. I am so glad you were able to garden and go to the beach! How could this nasty little virus come back at you. Not fair you fought for so long and so hard I thought for sure you had nailed it. It teaches me to not be to cocky, I have my 6 month coming up and UND is all I feel ready or able to accept.
I can't fathom how hard that must hit you in the gut! At least you are feeling better.
Stay strong and keep us informed.
You have helped so many

[mhudnall]

Not trying to argue here, it's just that the warning on LDN and hepatotoxicity is old and has been pretty thoroughly discredited by subsequent studies. If anyone would like to look at the I'm referring to please private message me with your regular email and I will send you some documents. I have many more studies than I have posted on the other threads that deal specifically with this subject.

Mike H

[can-do-man]

Really sorry, hate that word "relapsed", its like someone gives you a swift kick in the gut. Yours might be different but i had no problem with blue cross my first tx, even when i extended to 86 weeks.

Had checked with them on retreating before i got in this PI trial and they said there would be no problem covering a second tx.

Take some time off, give yourself a break. I'm sure in time you will go after this again. Like my doctor said "we don't give up that easy and your a fighter"

Best to you

cando

[merryBe]

Thanks for all you wonderful people...just knowing you are all here makes this easier to handle.

I'm already thinking when I've licked my wounds of what'll come next.

Is it true insurances won't pay for a second tx even when the new PI"S come out??

ANyone know the answer here?


Evangenline,
thank you for that encouragement, I see what you mean...at least relaspe gives me a better shot at retreating......

poor Joe has been through so much, maybe the LDN will help him, but have you given the old antihistamine Sanford considered any thought? Clemizole I believe it's called.
I'm going to have to look into it as it seemed to lower VL more than anything else they found, and hopefully it isn't liver toxic....I'll have to do more looking into it now.

The LDN has some liver issues just like anabuse does. Anabuse works on the principal of so entirely commanding the time of the P450 cytochromes that there are no chemicals left to detox the alcohol, and hence one gets very very sick as a result.
The alhoholic then hates how ill they are, and usually stops, but the trade off is liver damage, even in healthy people it's a real concern.
I believe the naltroxone blocks the opium receptors and has warnings for liver patients,... I'm not certain this is a good fit for a liver patient, it would depend on how the liver matabolises it, however the low dose may not be as much of a concern.
MS patients have seen some improvements, but MS patients don't have livers teatering on the edge of failure for the most part. I'll have to see what the Flockhart research shows for naltrexone, if anything. Did you check into that aspect of all this?

I do know this much, just because they think something is safe doen't mean it is.
They gave me a "liver safe" antibiotic during tx for instance...and it started to shut down my liver...what is normally safe does not apply in stage 4.

so if you do add this you will want to do some very close monitoring of Joe's labs.
In any case, everything we try is pretty risky in stage 4 LD, but we all do keep trying right? I just know that the "do no harm" oath will come into play.
Reason is, at higher doses naltrexone does cause issues that is known, but for a liver impaired person the small doses could ACT or have the effect of larger issues. Remember stage 4 is like having a liver the size of a young childs, with far less capacity to detox stuff.

What did Joe's hepatologist say about the LDN? I would suggest you do this with his knowledge so that you can head off any trouble by watching the labs.
Just to be careful here, I know you know this.

mb