24 week PCR - not what I wanted

[miss moneypenny]

Hi

Not posted in a while, but wanted some feedback from you good people please.

I did not clear at 12 weeks, still had a VL of 3,000, just had 24 week test and am still detectable, a VL of 30 would you believe. As a result my treatment team feel I should stop treatment as I am not responding - well I am, but very slowly. I can see this is so, but feel very disappointed that I have gone through 6 months of treatment for nothing, in fact it has cost me thyroid problems, which will hopefully resolve. The one thing I do feel is that my riba dose was too low for a 1b (800mg/60kg) but it was the recommended dose with PegIntron, for my weight, I tred to get it upped to 1000mg, but didn't happen.

Unfortunately my consultant is away, and I would really have liked to speak to him before stopping, but he cannot see me until the end of September, by which time my meds will have run out, but I am hoping to at least get to talk to him by phone.

I know, from all I have read, and from advice from my nurse, that based on my PCR's there is very little chance of me achieving SVR, but would hate to stop if there is any way of moving forward. I have suggested changing interferons, but my nurse does not feel this is an option, and that I should just stop and allow my body to get healthy again, and this is most likely what I will do, but wondering if I should stick with it until my consutant is back, or should I just let go and wait for the new drugs?

Any opinions appreciated

All the best to everyone

xx

[miked]

My tx experience went very similar, only my VL went up at 32 weeks (breakthrough).

Lot's of people here (like DoubleDose) posted to have my doc either switch Interferon (I was on PEGIntron....switch to Pegasys) and/or up the dosage off-label.  My doc wouldn't hear of it and I fire him after I failed tx.

Several people have went to Dr. Cecil Bennett in Louisville, KY.  He treats patients off-label and seems to get good results.  http://www.hepatitisdoctor.com/

BTW....6 months of tx may very well have helped your liver reverse some of the damage.  Revenire was on INF for 88 weeks and went from a 3 to a 2.

What's your stats?

[miss moneypenny]

thanks for your reply,

My stats are female, geno 1b, low viral load 155,000IU at start.

Tx stats, VL at  4 weeks 44,000
          VL at 12 weeks  3,000
          VL at 24 weeks     30


sorry to hear your VL went up again, what action are you taking now?

xx

[sundancer2007]

Sorry you have not cleared yet. You are so close and your intial viral load was very low.It does seem to hold out for 2nd opinion and what would it hurt to swtich interferons and up dosage of riba it is better to do it while still on treatment rather wait until it off and the virus comes back full stenght. I think you are not in the states so they are not as likely to treat off label.

Hope you can talk with some one who can help you sort it out.

sd

[GrandOak]

Hey copper gal, do not give up hope.  If I recall even nygirl had not gone UND by week 24, but did so a few weeks later.

At least your VL is heading in the right direction.  Like Miked, mine actually went from 72 mil base, 2.4 mil 8 wk, 1.8 mil 12 wk, and (can you believe it) 2.9 mil wk 24!!!  So keep a stiff upper lip cause it looks like you are on the right track!

We attribute mine to fact first doc cut riba in half 4 wks into tx and after switching docs at wk 8 having to add Procrit and play with Procrit dosage while trying to increase riba to reach full dose again.  In fact, having reached full does 4 wks ago, we're still adjusting Procrit to try and keep that level.

Whether I clear or not this first time around, I know I'm in it for the long haul, or until I haul some dragon arse out the door.

[jmjm530]

Sorry you didn't clear. I agree with your medical team that you should cut your losses, stop, and rest your body/mind to fight another day. Hopefully, with better and kinder drugs in a few years.

From one of your older posts, my understanding is that you are between stage 0 and 1 and had normal liver enzymes pre treatment. Combine that with the hardest to treat genotype (geno 1) and a slow response rate to the drugs -- and at least to me it makes no sense to expose yourself any longer to the risks of the treatment drugs. I wouldn't if it were me.

For discussion sake -- to take the opposing point of view -- it appears your ribavirin has been underdosed at 800mg for a genotype 1. I suppose you could give it one more month at an increased riba dose and see if you clear. But in that scenario you would have to extend treatment at least another 36 weeks to get a decent chance at SVR. Now we're talking 64 weeks or 72 weeks if you go by some recent studies. To me, 72 weeks of treatment doesn't make sense given your stats, geno and odds of success.

Search your heart. Sit down and talk with some trusted friends and relatives. Get another opinion if necessary. But just understand that treatment has its risks and in some cases more than living with the virus.

All the best in your decision.

-- Jim

[jmjm530]

In regard to treating 72 weeks, on reflection I believe that study was for those that were detectible at week 12 but non-detectible at week 24. Not 100% sure. In your case you're still non-detectible at 24 weeks, so even the 72 week results of the study may be not be applicable.

As to New York Girl, my understanding is that she had a significant drop at week 4, was just slightly detectible at week 12 and  non-detectible at week 24. You did not get that response rate. Also NY girl has stage 3 liver damage giving her more incentive to fight longer. Maybe she can clarify.

[jmjm530]

Third sentence in part should have read: "In your case you're still *detectible* at 24 weeks..."

[miked]

Fortunately I have very minimal scarring because my only option is to watch and wait.  While waiting I'm taking Maximum Milk Thistle, eating right and excercising daily.  What I'm really waiting and watching for is when Vertex starts the trials for non-responders, which is hoepfully later this year.  I'm motivated and believe I would make a good candidate because of my stats and health.

You didn't mention your scores for fibrosis and inflammation?

[miked]

Oh yeah, one more thing.  For "slow responders" that eventually go UND, most knowlegable docs know to extend tx to 72 weeks, which is also off-label from the standard 48 weeks.  The theory is to go about 36 weeks on tx past the stage of getting UND.

[FlGuy]

If I recall correctly, you live in GB?  If so, and if you decide to 'rest and recover' for a while it appears that some of the protocols in the VX950 trials in Europe may be without riba. If so and if you are of a mind to, see if you can check with your doc about the possibility of involvement.  Up to this point, involvement in VX (at least in the states) required that a trial participant not have had riba/ifn for the prior six months.  May be worth a look.  Good luck.

[NYgirl]

Miss $$$

You said:  My stats are female, geno 1b, low viral load 155,000IU at start


As some others can attest (and Cuteus was the first to point out) sometimes it REALLY appears that having a LOW vl to start with is bad news (contrary to what they SAY).

I had trouble getting from my starting of 568,000 and didn't clear until somewhere in between 12 - 24.  Had 400 virus hanging around since week 4 that would NOT go away.

I don't know why this is so when they tell us that a low VL is a good predictor for SVR but it just doesn't seem to be.

My doctor had told me if didn't get UND at 24 he would stop me and then we would consider a trial.  You really aren't responding enough on the med to warrant continuing on it I guess.  If you aren't clear by week 24 the chance of SVR is supposed to be VERY EXTREMELY low and impossible.

If I was you I would regroup and then try something else.

Im getting so tired of seeing the low VL problem = but it is true.

[Algernon]

I'm so sorry that this doesn't seem to be working for you.  If Jim is right about your having minimal liver damage, I completely agree with him that you should give your body a rest and wait on new drugs.

It seems that the odds are not in your favor and the best thing for your health may be to stop these TX drugs that can be very damaging.

Sometimes, when I was on TX, it felt as though my life would be over if I didn't clear.  I am 12 weeks out and don't know yet if I'm clear but I do know that life will not be over if I don't clear.  I'm 49 and I got this virus when I was 16.  I've had a busy, happy, and healthy life (up until TX anyway).  I can continue to have that life even if the virus lies within.  I'm Stage 2 and will wait on better drugs if I get bad news with the next tests.

Of course, this is all just my two cents.  But my advice is to go out there and embrace life.  You're bigger than the virus.  Best of everything to you, Deb

[NYgirl]

PS Jim said In regard to treating 72 weeks, on reflection I believe that study was for those that were detectible at week 12 but non-detectible at week 24.

THAT is CORRECT.  If you are detect at 24 the odds are just way too low that you will achieve SVR for any doc to keep you on the current meds. They didn't work and it's time to try something else rather than torture yourself for THAT long.

[miss moneypenny]

Thanks for all your comments,

they are all valid, and give me plenty to mull. I thought I had added my stage/grade, but must have dreamt it!! I am grade 1/2, stage 0/1, which I know are really fortunate stats, I think I find it hard to accept that I did 6 months tx for nothing, so want to check out all options before throwing in the towel - although I can see there are good points to giving the tx up I think it will take me a while to accept that I need to live with this virus for a while longer.

Thanks again all,

xx

[amommy]

I am thinking of you.  So sorry to hear about this pcr :(  I tend to agree that you might want to stop tx.  You have very little damage, and new treatments are really close at hand.  I admire you for your desire not to give up on the progress you have already made.  Email me when you feel up to it :)

[strator]

miss moneypenny

As has been stated here, this is a decision you need to really look at deeply, with the help of possibly a 2nd opinion or at the least the consultant you’ve mentioned. As I post the rest of this reply please bear in mind I’m not advocating what is right or wrong for you or anyone else. I was a slow responder and faced a  number of decisions, any one of  which may have been wrong or right for me, but they were my decisions and the best I could do with what I knew and felt.
I started off with a high VL at 18.7million, a  1a, Grade 2, stage 1 to 2. At 12 wks my VL was 281,000. Neither I nor my dr was inclined to stop, as I was tolerating tx pretty well. At 24wks VL was 3140.  Just before those results came in I had some reservations and thoughts passed through my skull that maybe I wouldn’t be clear and could just be done for now with this aggravating(at the least ) tx. But I just kept plugging away at tx, probably just cause that’s what I do. I’m some times more comfortable with plugging away then making changes. My doc wasn’t telling me to stop, I didn’t know if I’d have the same insurance down the line if I stopped then, and I had a lot of support. How you are tolerating tx is one of the many  factors.
Anyways one thing I have to say about myself; though I've been known to make quick and sometimes even right decisions in crisis mode, or at work…I have a problem with decisions especially that are personal. First I don’t always recognize the level of importance. Second , faced with decisions I have a tendency to act like someone walking around a circle of  rocks on the ground, trying to figure out which is the front entrance and rear exit of the circle…’well let’s see I would have started the circle here, but no maybe the front is facing the sun, or that big clearing’…
Back to  treament…I had rough periods off and on but happened to clear at 39 weeks. I thought I could finish out the 48 no problem and probably extend to 36(though I didn’t wasn’t overjoyed at an extension. Then the weraing away of my body, weight loss, the side effects,  the heat,  a very physical job, the waning attitude of myself and family..all met in the same room and had a party. I tried as someone mentioned here once to be ‘the last man standing’, but life and this disease and treatment don’t always line up and listen the way we’d like. I finally had allowed myself to reach crisi mode and ‘had’ to make a decision. At week 45 I stopped.
Do I regret going that long, no. Could I have stopped earlier and waited..sure, that’s basically the position I’m in now. I may have helped my liver, I may or may not have done damge to my body,  and I learned some lessons. Did going that long despite not so great early results help me towards SVR? Got no clue despite statistics against me. I’ll let time hand me the results whatever they are.

One thing with what I did, by the end my body and mind were probably in pretty lousy shape to make clear decisions, crisis or not. Kinda reminds me of my alcoholism, use to stop a while and feel healthy and think I could handle it, then’d I’d take that first drink and every decision there on would start going to Hates in a handbasket.
There probably isn’t ever a  best time to treat, life gets in the way, emotions get in the way, we do the best we can when we can. Treatment doesn’t always find us at our best. People do find sometimes though the right time to treat, to stop, even to wait on decisions.
Weigh it all out with in your heart (as jim so eloquently said), with drs and those you trust, with your loved ones because it does effect them. You do seem to have time on your side.
When you look at the circle of  rocks, sometimes you just have to make your own entrance or exit.
Be Well with your decision and believe in yourself no matter what you decide,
Don

[avidreader]

I was in a similar position to you but with more damage--Stage 2, grade 2/3. I started with an almost 3,000,000 VL had a 3 log drop at 12 weeks and was detectible (but very low) at 24 weeks. Because I was tolerating treatment fairly well, but doctor immediately ordered another PCR and that came back clear. We talked about my chances for SVR, and mutually decided to keep plugging away. I asked about treatment extension but by insurance company wouldn't approve what they continue to call 'off label' treatment despite a growing body of evidence that you get your best shot treating for 36 weeks past undectible. They did approve an additional 4 weeks, so I treated for 52. Still don't know what the long term outcome will be, but if nothing else I figure I bought some time. It's a very personal decision and I found weeks 30 - 40 to the the most difficult in the treatment regime. By the time I got to 52 I was very, very ready to quit! Anyway, that's just one more person's story to throw into the mix. Right now I'm enjoying post treatment euphoria from feeling better off the meds, but I've still got some lingering issues (liver enzymes, which never went down to normal are climbing again!, brand new skin problems, etc.) Would I do it again? I must say, I can't say. I just don't know . . . Talk to trusted friends and medical advisors. If you can get a second opinion do--are you on national health? It might be worth the ivestment to get a one time private consult. Good luck!

[mkeela]

Keep the faith, I can't imagine bieng in your shoes right now. God Bless You .

[Mister beagle bailey]

I'm so sorry to hear this news and know how you feel as I just found out today I relapsed.  All we can do is pray and wait for the new drugs.

Beagle

[can-do-man]

I'm kinda surprized they didn't either stop at week 12 or change course as you didn't have close to a 2 log drop. Best of luck to you

[fishdoc]

look in the archives under Fishdocs consult.  I failed the two log drop, consult dr upped the riba, based on HBG.  If HBG doesn't drop, your not getting enough riba..

[cuteus]

agree with can do, they should have made the changes at wk 12, instead, they chose to continue with a protocol that was too conservative for your strain. water under the bridge now.  If you feel like salvaging this tx, you need to change something, interferon, riba dosage, tx length.  It makes no sense to continue at the same pace and dose. You might as well finish now if they are not going to change anything. Or you can get another dr, more aggressive and avant garde and get him/her on your team, asap. You have no time to waste, if this tx is to continue.  If you truly can not see yourself carrying this virus any longer, INSIST on a change NOW.
good luck