4 weeks VL, NOT RVR

[Marcia2202]

what a bummer..... my 4 week VL came back saying....

Hepatitis C (HCV) PCR: POSITIVE                               HCV PCR:  detectable, less than 80 IU/ml, not quantifiable


My hepa was happy that it had gone down from 1.3 million to that... Needless to say, that I wasn't too thrilled, as I was going for UND.

They don't usually prolong tx, but my hepa is open to it, due to the fact that I am geno 3a and partially Black American and that I'm informed and pushing. We had a great discussion and she will do another PCR at 8 weeks. I have stressed that if UND at 8 weeks I would rather add 8 weeks to treatment, than to risk relapse and do this whole thing again.

(I was referring to Dr. D's advice to add 24 weeks of tx after EVR.)

Now she is going to try and find studies supporting the fact to extend, if not RVR and I will supply her with what I have.

So what I would suggest is to go for 32 weeks of tx, if I EVR at 8 weeks. ( 8 + 24)


If anyone has any studies supporting this, could you please let me know... as the more literature I have on this, the better I can argue my point.

Thanks,

Marcia

[Isobella]

Can't wait to hear your good news this week :-)

Keep us posted-

Isobella

[DragonTamer]

As many said no matter what differences, being here for eachother is major.  "Out there" in the world I often have to hide my feelings with a smile, when I feel like *&^% and just want to crawl in bed and hide under the covers,  and worse even lie in certain situations, and I hate that!  But some days I feel so good I forget I have it! When I come here, I seek the comfort and support we all most desperately need and many of us don't get in the real world.  

I get my 12 week VL this week and as I said I am scared to death of the results because of the lower dose, which some thought I should not do, but I didn't have a choice,I will just have to deal with the results.
  I hope I have good news to share, and hope I keep hearing good news from everyone here on this wild journey we share!  I believe in the end it will make us  stronger. And I would imagine those who have finished the journey and are SVR and have their lives back would agree! And they appreciate each good day just that much more than before tx. Just my opinion.

Hang in there gang!
Thanks again Marcia.
D.T

[DragonTamer]

Thanks for the "message" Marcia, again I cannot write back!! Tried 3 times. This is driving me crazy, still says I am blocking,can't send notes, messages, nothing but post here Tried everything!  No luck with who ever runs this site either. Sorry for the off topic just wanted to let everyone know, who has written me I am not ignoring you, just can't respond.


Anyway Marcia I appreciate your note and thoughts and I understand.  

I am routing for you and us all.  I think a drop in VL no matter what is a huge accomplishment.  We should take every drop, embrace it and never let go of hope!
Keeping positive is the key and remembering we are all not cut from the same cloth or geno type!  As others have said. Each journey will be different,some easier than others,some unbearable, none of us know till the journey begins!  It takes courage to start, our bodies will do the rest to let us know if we can continue or not. It is a very personal choice which should be made with "good""reliable" medical supervision. As  we all know finding that can be more challenging than the tx LOL!

[Isobella]

This is why I am reduced to putting my mascara on using the rearview mirror in the car....

everytime you hit it out of the ballpark with words of wisdom, I print it out and tape it to my bathroom mirror.

At least that is how it started......

now my bathroom is wallpapered-mirror and all--with Meki's words of wisdom!

LOL!

So glad you are back.

Isobella

[meki]

Jim - I think that each person responds to the medication differently.

There will be about 70% of the folks who have the (and I quote) "FLU" symptoms.... and nothing much more.

Then about 20% who have a rough time...

And about 5% who have a seriously rough road... and tough it out - thinking this is normal...

And about 4.999999% who must quit.

And about .00001 who die.

I pulled those stats outta my monkey suit trap door *grin*... But that's kind of the idea that I'm working with --- those basic percentages... From the literature that I've read - from the doctors I've talked to --- and from watching the boards --- reading the net and listening to the people here who have or are treating.

So I count myself in the 5% range... And I think that is too small of a number to "warn" people about.

I do tell them that each person is affected differently.

And I am of the belief that the only peeps who pop up on the board are usually those who are having problems or have some questions --- or are doing research ahead of time.

I just want to go on record - folks who do 72 weeks are my heroes --- and those who did 72 weeks and were in MY (LOL) 5% range --- are super heroes...

No one's TX is any less hard than anyone else's...

ALL TX stinks... But I got SVR...

And there is nothing that can measure that pure luck. And I WISH everyone to get SVR --- and I'm feeling hopeful about the new Vertex and other drugs on the pipeline...

There is a LOT of HOPE coming out - and I'm very thankful that it's starting to look good on the horizon for a lot of people and the NON responders.

Hugs youse guys --- Remember that every single one of you is special...

At least to me. No matter our differences --- no matter our different opinions - each one of you on this board is a special - fantastic person.

Many hugs!

Meki

[Isobella]

Very well said :-)

[epiphiny]

I think it's very important to share how things are going for each person, the good, the bad and the ugly because we need to show a well rounded picture of treatment for all those considering it.  

I know of many people who refuse to treat as they have heard that tx is worse than the illness.  In some cases it is, in some cases it's not.  There is also an stereotype out there that these types of forums and support groups are filled with negativity which is also detrimental to those who might be trying to decide whether to treat or not as there is so much good information here that can actually help the treatment experience for the better.

Personally, I have good days and bad days, some are horrific, some are ok.  I manage to keep working mostly.  I also tend not to share when I'm feeling good, I also minimize what I am feeling because I compare it to what others are experiencing and I think that negatively impacts on my treatment because it's not about who has the worst or most difficult sx, it is relative for each individual and part of getting through this is accepting where we are with it.  We already feel bad, why feel bad about feeling OK?!

I also believe in the power of the mind and how we can influence our experience by keeping a positive and open mind.  Sometimes too much fear makes us paralyzed and let's face it, our perceptions can get pretty messed up with these drugs without adding more fear to the picture.

I'm not saying we should be Pollyanna about it all, I believe in a multifaceted knowledge base, but I also think we need to celebrate the good days to tide us over the difficult days.

I look forward to hearing some positive experiences!!

[Isobella]

Apparently I am not doing as good as I thought.  My neighbor just "popped in" and she kept saying she was sorry to have woken me up....I finally had to tell her I wasn't sleeping...I just look like this...LOL!

[Isobella]

"i.e. people don't talk about what an easy time they're having."

I am glad you mentioned this...it gives me an opening to say something that has bothered me as someone who is tolerating treatment very well.  There are three reasons that I don't feel comfortable telling many how "doable" tx has been for me(so far, lol!)

First-so many people that I care deeply about are having a tough time treating - it just doesn't seem right to talk about my relative walk in the park

Second-I feel part of the reason I am doing well is because of the advice I was given from these very same people.  Not that I am fooling myself that I have any control in this journey-in fact my worst sx are things I cannot control-anemia and neutropenia.  And I know that just because these first 9 weeks have been kind..that can change in a moment.

Third-I know that hearing balanced information is important-but look at me.  Minimal liver damage (1/0) in a clinical trial with all the risks/rewards that carries and having a relatively easy time of it. I struggle with sharing my experience because I don't want to lead anyone down this path and have it turn out bad for them.  

So, I guess in a round about way-that is my way of asking you if you think I should share the my perspective more as well or if it would somehow be misleading???

[comeagain]

Just a tip.
I´ve heard that Matt Chin no longer is juicing and therefore is getting rid of his monkey suit selling it at Ebay.

Think hes about the same size as Jenna, just a tip if you wanna try something different jim.

[comeagain]

Runnig neekkie with meekie in the forest, once you done that there is no going  back I can imagen.

We better ask dr D what he thinks about doing monkeysex while on treatment.
Even if rumors says hes done it twice him self, I´m not sure he will recomend it .

Extended tx with monkey sex in the formula I´m almost sure will be out of the question.
But as said before we better ask dr D.

PS dont get lost in the forests in Alaska.

[FlGuy]

"PAIN - Barfing - PAIN - Couldn't Think - Couldn't communicate - Could hardly move - could hardly breathe... Couldn't walk next door without Barfing or Crying or not breathing well. "

And that's just from the monkey sex.

Treatment was no walk in the park either, I imagine

[jmjm530]

Meki: Again --- if I had had a walk in the park TX --- I could have done more...  But for me --- the TX was the hardest thing I've ever done. Everything else --- surgery, broken bones --- everything else pales in comparison.
---------------------------------
The way you describe your treatment experience here is very similar to the way I would describe mine.

And please don't take this as a criticism, but why don't you talk more about your treatment experience in threads where people are asking if they should treat or not?

Many postulate that side effects are over-estimated here because only the "whiners" talk up, i.e. people don't talk about what an easy time they're having. My opinion is that many like you, who have had difficult tx experiences, don't talk up in certain threads because you don't want to discourage people from treatment.

My take is that people should get all the information we can give them. It's an important decision whether to treat or not, so there should be no sugar coating.

So speak up more girl, I know you're not the bashful type ;)

-- Jim

[meki]

CONTINUED:


Again --- if I had had a walk in the park TX --- I could have done more...  But for me --- the TX was the hardest thing I've ever done. Everything else --- surgery, broken bones --- everything else pales in comparison.

And to me ---- I could NOT have done more.

So it's hard to hear someone say "you should be thankful you don't have to do more"....

I don't know if 3a genotypes are more likely to have a "harder" TX --- or not... The discussion has been interesting about the IR and the Steatosis... So there is a possibility that those might be causing --- or may cause more issues (at least in my mind)

But --- I know if Marcia is having a hard go at it --- especially so early on --- it might be hard for her to hear ----- "you should be thankful"...

When in reality --- going through it at all ---- for ANY amount of time is awful. And no one should be thankful about it... LOL! At least ya ain't hearin' me thanking anything about having to take the TX... LOL! Glad I did it --- but wouldn't do it again --- and thank goodness I got lucky with SVR...

I dunno if she's having the same kind of reactions that I did --- but if she is --- it's hard to hear things like that...

And on this TX ---- as we all know --- it is SO VERY EASY to let our emotions get out of hand.

I don't know if that made ANY kind of sense... But my brain was trying to read the answers to everything here --- and trying to make peace.

No one should have to TX --- it's horrible.

Some folks can manage it well..

While others cannot.

NO ONE IS SO LUCKY TO BE DOING THIS TX --- not now - not ever.

BUT --- it is what it is...

And I do love each and every one of you. OK?

So no more harsh words...

Don't try to infer things from what others write --- and if someone gets upset about something ---- just take a step back and relax... EVERYTHING WILL BE OK...

ALRIGHT?

It will be ok - one way or another...

We are all a big family here.

[meki]

I gotta say something and it might clarify a bit...

Some folks can do this treatment for 72 weeks and live life comfortably --- or with the mild sides.

Some folks plummet at week 4 and can't get back up.

Some folks can do several rounds of treatment....

Some have to quit early --- or after week 2...

This treatment affects each person individually...

72 weeks of this treatment would have killed me... I would have been dead - gonzo -- couldn't have done it.

If someone told me I had to do it again --- I would find the nearest bridge --- say my grace - and be done with it. (figuratively speaking folks --- but you get the concept.... I couldn't have done it --- wouldn't have done it.)

So if someone who had nominal --- or mild --- or even harsh side effects --- and did 72 weeks... BUT SURVIVED... IT doesn't take away from them and their hard times on TX --- but it might make them feel like someone who only had to do 24 weeks were a bunch of pansies...

It might seem that someone who did 24 weeks --- were "lucky".

But I do not see it that way.

I did 24 weeks --- and was blessed with SVR --- and have since learned that is a very special and lucky blessing.

But the only way I made it through TX was one minute at a time...

I could NOT have done more time...

I came close to quitting - because I wasn't functioning... I wasn't capable of functioning 6 out of 7 days.

PAIN - Barfing - PAIN - Couldn't Think - Couldn't communicate - Could hardly move - could hardly breathe... Couldn't walk next door without Barfing or Crying or not breathing well.

And I thought those were normal reactions. Cause the doctors kept telling me nothing was wrong...

(LOL now.....)

Anyhow - sometimes it is hard to view that perspective --- yanno --- the one that belongs to someone else.

Someone who toughed out the 72 weeks --- they think --- "I WISH I COULD HAVE DONE ONLY 24 or 48 WEEKS" "Oh you're so very lucky to not have had to do so long..."

And someone who has had to quit due to complications --- or someone who has a TREMENDOUSLY hard time on TX --- They think --- "I WISH I COULD HAVE DONE MORE"

But in reality --- the length of time ---- truly ---- other than the ability to kill the virus --- is no different ---- it's how it is handled.

Each person reacts differently.

[HARRYBEADS]

Yeeeehaaaaw gotta love that ribavarin ****.LOL

Wish ya the best on week twelve, are ya a gamblin women?

Harry

[Rockerforlife]

What was the question again?...now im confused.

[geterdone]

So, what’s wrong with doing 16,24,36,48,52,56, or 72 weeks with these wonderful meds? either way its going to either cure you or leave you with its remnants. I just have a slight twitch in my neck but I’m curd, twitch, twitch. But if your thinking of going outside of the boxes I’ve got an extra 360 riba pills and 1 inf and 1 procrit shot left over for the possibility of predosing if needed.

Bottom line geterdone

[Isobella]

lol!  

[sunqueen]

or political debate .....

[Isobella]

or clipper question................

[Fl_Gator]

WOW....158 posts and not one juice recipe.

[DragonTamer]

Phew!!!   That takes some stress off of my worries...  some encouraging news.  Your post lab is set days before my Birthday...I will add your getting good news to my birthday wishes, when  I blow out my candles!!!! :)

Thanks for getting back on my post. I appreciate it! I had/have some real concerns after reading all these threads....always good to hear back from others when you ask for help...or take the time to offer your support...that is what this forum is here for and I am so thankful when I see it working in that positive direction.
Thanks again Rita.

Wishing all a peacful weekend!

All the best!
D.T

[rita3a]

I agree with your post 100%.  I hope you are UND at week 12.  My doc says UND at 12 post is almost a guarantee for the 24 week post PCR.

I will be routing for you as well as for all of us!  My 12 week post is set for Nov 13th.  

Let us know how you made out!

Rita