Major tx changes

[Lady Lauri]

   This may be long! ALSO...in NO way whining! I have been VERY, VERY lucky/blessed in all that has transpired since dx of Hep C last May, besides being geno 2b.Everything I needed fell into place for me, work/people stepped up to help, the free trial, stress free 'stay home' if needed tx, and much more. Now I feel I can be an ‘example’ in lowering dose's, easier tx for Geno's 2-3, and ,hopefully , SVR, in the end of this. I tend to feel they could reduce a lot of geno 2's in tx to make it better QOL, (WHEN UND at week 4) and that weight based Riba needs more attention! But that is just my opinion. ALL must make their own choice’s in tx. Many people here have helped me, gave me studies, advice (and thank you!) ……I took that, my own research, my Dr.s answers and made my OWN choices along the way. And as geno 2’s, we do have more choices than most geno 1’s. HOPEFULLY, soon , so will any with Geno 1.

To update: geno 2b, 126lbs. ,49 yrs. old, started in Albumin trial, 'drew' Pegasys/Riba tx. Started 11 weeks ago at 180mg Peg/800 Riba. Some ‘heavy’ sides, hgb dropping by week 4-5.(no rescue drugs) Dose's reduced to 135mg Peg/600 Riba (was also UND at week 4).
My tough, bad a*s self has been very humbled by tx, LOL. It has kicked my arse. In bed 70-90% of tx so far, stopped (physical) work in week 4, and parts of me hurt that I never knew I had!
   I  have one of the best Liver Specialist in Fla., am quite secure in him, and again, d*m lucky to get him and in so fast.
Now week 11. Sides are still bad, we did a 'sudden' appointment, labs and he sat down and said this.…..
"I know that right now you are saying "I am going to quit at week 12 or 16...CAN I quit?", we know that you CAN quit at week 16 safely with only a few points less chance (about 90% to 85%). You are UND, I am confident you will SVR". I jumped in with..." I'm really trying here and don't want to quit, trying to follow thru with the trial'.....he says.....
" I don't care about the trial, it's not about the trial now, I care about curing you and right now we have two options as I see it to secure your SVR. I do not want you to stop at week 12. We can lower your Peg to 90mg now and/or stop at week 16." (more said, summing it up) I asked 'SAFELY, for SVR and what do you feel is better to do?" He said he would rather I do 90mg and do the full 24 weeks (or close) than stop at 16, keep the drugs in me longer for extra precaution, chances. He said with all info. involved he is very secure in my SVR. Sooooo.......while all of us Geno 2's toss around our option of doing only 16 weeks (IF UND at week 4 only!) .....and I was seriously there....... we made the choice of dropping to 90mg Peg, stay at 600 Riba and going the 24. He said , and I’ll say in layman’s terms, “the virus is ‘gone’, we’re just kicking any little stragglers as*’s“!

   In the trial 'standards' I was listed as 'severe sides' in some area's to allow this also. The way things have been, I was just trying to make it to week 16 and was quitting. (hadn't posted that).

  The strange thing here is I had posted before about having some control in your on tx, even in a trial, and in both times (reducing)  I had researched and decided 'should lower' myself (what I thought I should do), the very next appointment-me not saying anything about 'what I thought I should do'..... he did exactly as I had decided was right for me!
Flamouse just got in with this Dr. and he is very good, I totally trust him in this and the most awesome part of our whole talk was..............................
  "" I don't care about the trial, it's not about the trial, I care about curing you" !
Bare in mind he is director of these trials , has several titles.
So.......what ya all think??
                                                                          LL

[Lady Lauri]

    Agree in trying to stay full dose until week 16, than lower , want to & with me it will be labs providing as won't risk being taken off totally. (Bare in mind I was already reduced from 180mg Peg to 135mg. peg in week 5) If the lesser of 2 evils is reduce now or stay on higher dose's and have to stop in 2 weeks, I'd rather reduce and stay on longer. Hard choice, really :{

  Sorry about your ex, I know relaspe must be devastating and hoping I never have to feel that.

                                                                                 LL

[zazza]

"IF that happened in my situation or other 2-3's that had to lower thru tx.......would we really have to retreat at 48 next time or could we get more 'drugs' to handle the higher dose for full 24 week course of tx ?? As another 24 weeks is a lot ! Especially if reason for break thru could have been lowering doses??"

Well, my ex is a geno 3 who did the full 24 weeks with fixed doses of pegylated interferon and ribavirin (not weight based). He is starting weight based retreatment for 48 weeks next month. He knows he has to do at least a total of 24 (first tx) + 48 (second tx) = 72 weeks. I can't imagine he is willing to risk 24 + 24 + 48 = 96 weeks, which would be the result if he relapsed after another 24 week tx.

As Pigeonca says, "it all depends on your sides and their severity". If it were me I would take as full doses as I could endure for as long a time I could endure. My non-expert opinion would be to go for as high a dose as possible up to 16 weeks, and then, if I could, continue on towards 24 weeks.

I have seen the devastation of a relapse, and the frustration of realizing the tx regime was not optimal, just because one was thought to be "one of the easy genos".

[Lady Lauri]

  Thanks for that.Well said post and good to hear towards feeling more at ease in making right choices for ME.  I need to remember being Geno 2, even if stopping week 12-13, still a good shot.
In fact, your one case I have kept in mind in tx. And you even got the rescue drugs and had to stop early.  I can handle the feeling rotten, sick, tired but not risking damage when I can lower or stop earlier being geno 2. Your case, along with others, is what has made me look more into 2b tx-ers stopping early which than led to my thinking that many of us can do less meds, tx time or lower doses, etc. And you know all Geno 2-3's think about 16 weeks versus 24, and we're lucky we can think about it! Tho.......his lower and do the 24 threw me off a bit! he was pretty strong in lower to 90mg now, not in a week or 2, so we'll see how it goes.

                Thanks for the reassurance in a few areas.
P.S. And I want to be just like you when I 'grow up'.....SVR , LOL.

                                                                                                        LL

[pigeonca]

Forgot to say that I was given Procrit from the 5th week.  It kept my hgb hovering around 11, which was tolerable.

[pigeonca]

I think it all depends on your sides and their severity.  Of course 90% is better than 80%, but the latter is not bad.  In my case the doctor felt she could not in good conscience allow me to continue past 13 weeks, so I didn't have to make a choice - the decision was made for me.  But I think for you, Lauri, your toleration of the regime is paramount.

If continuing treatment is going to possibly cause permanent damage to your body, then you should stop.  If it only makes you feel rotten, then reduction of dose sounds logical.  If you can hang in there and tolerate the sides, then do so.  But if it's intolerable, you don't have to continue with tx.  There are so many new developments ready to go on the market in the next few years.  If you're one of the 15 to 20 percent who don't SVR, it's not like this is your only chance.  Whatever you do is the right thing for you.

BTW, I am SVR.

[Lady Lauri]

  Did you get procrit or rescue drugs in your tx? Thanks for the input on your friend too, need to think positive]. (Ironic you and your neighbor both had!!)
   Be praying for your SVR in Jan. Will be a great New Years for you.

                                                                          LL

[Lady Lauri]

  Yep, the man know's his sheet in this. He'd said I could stop at 16, but he'd really rather I go 24 weeks at lower dose, keeping in mind that still doing the same Riba, 600.
My 12 week labs are next week, so all is out than (tho we knew UND at 4).

Here's an out there idea, from an 'amatuer' researcher :}
Would it stand to reason that, at least in Geno's 2-3, that the Peg has 'killed' the virus by week 4
(I started on the high VL side) and that as that did it's job, thus far, that lower Peg can/will still kill off any 'critters' trying to come back, as will the Riba......right ???

Be praying for you to reach 'undie' (loved that:} and SVR Missy.
                                                                                                    LL

[Lady Lauri]

----------------One of the issues i have with being a G2/3 is that many of us are over treated and take the drugs for longer than we need to. The have been studies done with non Peg IFN that produced SVR with G2s in a little as 4-6 weeks. ----------------------------------------

  I agree much on that. Tho we do have relapse’s , the % is quite low for that in 2-3's and even stopping at week 12 offer's an 80-85% SVR rate. That is my reasoning in doing the full shot on my 12 week (this week) dose......labs providing when back Tues.
  Dr. Nelson is no slouch in this and into all the research area's, attends and speaks at many seminars on research, etc. I do not believe he would suggest any of  this if he wasn’t secure in it and if I was Geno 1 , I am sure he’d have said to go off of trial and get the rescue drugs to go full dose, full course.  As I am 'halfway' there, it'd be a real problem to start over, not in trial. On the note of over dosing Geno’s 2 & 3, look above at hairtamers Riba dose! What is the reason for that, I have to wonder?

  You know I have been researching the h*ll out of this, and much from you. I feel fairly secure in it all, tho week 16 sure was looking good compare to now week 24, LOL, with a frown!!
                                                                                              LL

[Lady Lauri]

   and should say....
                             especially "IF REASON" for break thru.........

[Lady Lauri]

  I know, full on, full course is the best way if anyone can. for me tho...at this point it is....
  "a tough call.....full on to week 16 and risk having to stop..... or lower on to 24 weeks ??? "
  At least I do have the peace of mind that I do have one of the best Dr.s and not one ill informed, not exp.d much in hep, etc.

You do raise a question too......you said ........
"many geno 2 and 3 candidates relapse after treatment and then have to retreat for longer."------------------------
IF that happened in my situation or other 2-3's that had to lower thru tx.......would we really have to retreat at 48 next time or could we get more 'drugs' to handle the higher dose for full 24 week course of tx ?? As another 24 weeks is a lot ! Especially is rason for break thru could have been lowering dose's??

  My minds 'a wanderin'g in all this !!!!                                                      LL

[Lady Lauri]

jmjm........He had said I could stop at week 16 last app., but as I keep going downhill, no up-good days at all, the sides, etc. he pretty much read my mind on getting weak to quit at 12, (tho we know we all say 'I'm quitting' a time or two in this, knowing we can't). I did discuss 135 peg dose until week 16, than lower or even stop if had to, but he wanted me to lower the peg now, even when I said I'd do another couple full dose. To take me off the trial and treat would be a lot of BS, possible interruption in dosing, my insurance covers nothing and I am about  'half way there' so is a bad time to do all that. I'm stage 2-3 fibrosis. I want to do the full shot this week if labs come back 'okay' to do so, than more labs next week.
   I think weighing all out, getting me 'better’ to do more weeks is the best goal, shot in this. I have always had a very low tolerance to ALL meds, so I'm guessing this may be a problem here also. Trust me, I am concerned but we both knew I wasn't going to make it thru the doses I'm on to 24 weeks, whether it be me that stopped or the trial stopping dose's.

   Of all.....in the start of tx I'd said I would hang thru h*ll , that the ONE thing that would make me stop tx would be affecting my eyes or damaging my site and that is one of the problems I am having, so was my breaking point of ‘time for a new plan‘. I was reduced already in week 5 and not easy in a trial, so that alone says he was already concerned in keeping me on tx as long as possible.
  All said, If labs are doable, I also think I should/will stick with the higher peg for at least a few more weeks, THO....... each time he's changed something, he knew before the labs came back what was wrong. It IS a tough call.....full on to week 16 and risk having to stop..... or lower on to 24 weeks ???

                                                                                        LL

[Lady Lauri]

First I have to ask hairtamer this!

  WHY are you on such high Riba at 130 lbs ??? The 'standard' for 2b is 800 Riba/180 peg!
That seems to be a lot for you. Are you a relapser? The Riba kicked my hgb arse in 4 weeks, came .1 from being put into 'hold dosing'. Had to reduce to 600 Riba.
  Anyone here think that's a lot for her ??? Size and Geno in mind??

                                                                               LL

[FloridaMouse]

Yeppers, my treatment plan has been layed out by the same doc as Lauri.  I'll be doing 72 weeks as a genotype 1 relapser.  The only difference between Lauri and myself is that my local GI (who Dr. Nelson has said is VERY good) will be administering my treatment and both he and I will be able to consult with Dr. Nelson over the phone as needed.  I'm 3 hours from Shands so things were done this way to make it easier on me.

It's already been put in my treatment plan that reducing my pegasys from 180mg a week to 135mg a week once I am  undie may have to be done in order to mitigate the side effects.  I have a lot of confidence as well in Dr. Nelson.  My GI has said that the 2 best in the State of Florida are Dr. Nelson (Gainesville) and Dr. Schiff (Miami).  I think that Dr. Nelson makes a good argument that going the distance with a little less is better than quitting early.  It really matches back up to the 80/80 rule (80% of the recommended dosage for 80% of the recommended treatment time).

Mouse

[CockSparrow]

Dont want to go over what you already know, so will just say that in the same situation as you are in I would want to do the full course with lower doses. There is plenty of evidence that this approach produces higher SVR than stopping early. This is not to say that stopping early eliminates SVR.

One of the issues i have with being a G2/3 is that many of us are over treated and take the drugs for longer than we need to. The have been studies done with non Peg IFN that produced SVR with G2s in a little as 4-6 weeks.

The flip side is also true in that quite a few of us are undertreated, and would benifit from longer Tx and/or higher doses.

Its a pity there are not more studies on this to help identify who can get by with less, and just as important who needs more. Some of us just aint that easy to treat Why?

Wish you Well and SVR 4 me
CS

[hairtamer]

I am a fellow 2b also, I weigh 130, and will do shot 6 today 180 .5ml Pegasys and I take 600mg riba in morning and 400 mg riba in evening.  I am 0 VL at 4 weeks per heptimax and my blood counts  are low and they are watching them.  My neighbor was 2b and only lasted 4 months and is SVR 3 years later...
In Jesus, the Reason for the Season,
Rose

[traveler65]

As a fellow 2B, I understand you wanting to stop early with a week 4 UND. I had tremendous problems with anemia even with procrit. My doc told me I could stop at week 16, but convinced me that I should try for the full 24. He lowered my riba from 1000 to 800, had me get a blood transfusion, and I was able to make it to 24 on full peg. My 6 mo PCR is due in January.
Go as long as you can.
Good Luck
Traveler65

[jmjm530]

Just thinking, if the doc really is interested only in results (and not the trial) -- then why not take you off the trial and give you the helper drug Procrit (epo) if anemia is a big part of your problem. For a number of reasons, he may not be able to suggest this, but there's no reason you can't. I'm not as agressive minded as NYGirl in terms of treating geno 2's and 3's, but I think there might be some compromise in what your're currently planning and the full course. But again, I don't know how you feel, only you do.

-- Jim

[nygirl7]

As always my opinion is go as long as you can make it just to be sure...we've seen too many geno 2 and 3 candidates relapse after treatment and then have to retreat for longer.   To me, it's not worth the chance since the first shot is the best at SVR.

BTW I was one with tremendous sides and would not have been able to continue without the constant support and reassurance here on the forum.  I am glad I held on and continued to 72 because I did make it and never have to treat again.

You know yourself best but you have to do every bit you can to secure your SVR - it's just THAT important.

Hang in there.

[jmjm530]

Sounds like a reasonable plan, Laura, but you're the only one that knows how you feel. I get the impression the doctor thought you were going to stop at week 12, but i also get the impression that from your end that you weren't going to stop. Which leads me to a third option, not discussed, which is to continue on full meds to week 16 and then taper down to 90. Again, a large part of this depends on how you feel and how much farther you think you can go. And for me, it also depends on how much liver damage you have. If you're stage 3 or greater, I'd probably play it conservative and make best efforts for full dose Peg until week 16 and then take it from there.

All the best,

-- Jim