3 month PCR

Finally got hold of my doctor yesterday . He said the results have been sitting on his desk a week and he's "perplexed" over the results. He said he's been "procrastinating" calling me. Two words I definately didn't want to hear. My 48 weeks ended Jun 8, 2007. Male, 54 yr old, Genotype 1a with a VL of 470,000, Stage 1. Interferon weekly and 1200 riba daily.  PCR done on week 13/14 showed below 50 and at 35 showed undetected. Thought I was home free. Latest blood work showed everything normal. RBC just a tad low. As of Friday, my VL is 54,000. What the hell happened? Is this a relapse? Have I just returned to square one?

[jmjm530]

Sorry about the results. Yes, it appears to be a relapse. Of course, you should definitely re-test, but it's probably a long shot given you were shown to be at 470,000 IU/ml at 3 months post treatment.

Not sure why your doc is "perplexed"? It appears you were still detectibile at week 12, if I read your post correctly. If so, then you should have treated 72 weeks for a decent chance of SVR. And that assumes you were UND by week 24. You only list a test at week "35", so perhaps you weren't even tested at week 35.

The good news, of course, is that you're only a stage 1. So, you have time to wait for the newer drugs to emerge from trial if that is your choice. Again, very sorry, and do get a re-test. But moving forward, probably best to get another doctor.  Preferably a liver specialist (hepatologist).

All the best,

-- Jim

[jmjm530]

Last sentence of second paragraph should have read: "You only list a test at week "35", so perhaps you weren't even tested at week 24. "
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BTW if you were detectible at week 24, he should have stopped treatment then.

[jmjm530]

If I may ask, what was the sensitivity of the test you took at week 13-14, and what was the sensitivity of your week 35 test? Also did you have an EOT (end of treatment) test?

[wyntre9]

I am so sorry, teufel.

I will post some study links (as soon as i can find them) about the SOC that those who are 1A and NOT UND by week 12 but UND by week 24 benefit from extended 72 week TX.


SInce you don't know exactly when you became UND, or even if it was before week 24 as your post says it wasn't until week 35 that you had a PCR showing definitive UND, I hate to say it, but you don't even know if you were UND by week 24.

The rest of the SOC is that those who are NOT UND by week 24 should discontinue treatment.

Here are the names of some of the recent studies that support this;

Berg
Sanchez-Tapias
Drusano

i know how disappointed you must be.  i have to confess, if I finish 72 weeks and find out I'm not SVR . . . . i dunno. . . . it's really rough.

Please hang in there and perhaps if you either present the studies to your Dr. or maybe even consider changing Dr.'s . . . .

Hang in there, teuf,

wyntre

[jmjm530]

Got your viral loads mixed up. But "54,000" still suggests relapse.

[ladywhy]

Your 3 mo. PCR came back @ 54000? I'm so sorry to hear this...truly. I would also want another test done...and maybe see another doc. Again...that news stinks. My vl went up to 48000 @ 25th wk. My hep dr. doubled the peg (twice a week)...and I am doin' 1 1/2 x my weight dosage on the riba....we'll see how it goes....
This is a ruff road.
Hope there is a mistake with the PCR.....
Yvonne

[jmjm530]

Just want to mention that there's always another option at week 12 for those that are still detectible, as opposed to extending to 72 weeks.  And that is to stop treatment, re-group, and treat another day, with perhaps a different regimen. This option should especially be considered by those with little or no liver damage; and probably less by those with significant liver damage.

-- Jim

[wyntre9]

Of course, you're right, jmjm.

I think a lot of people, after having gone 12 weeks with at least a 2 log drop, feel motivated to at least go for the 24 and see what the results are at that point.

Unfortunately for Teufelhunden, it's not clear whether or not he even had a 24 week PCR done.

That really stinks.

Speaking for myself, if I hadn't reached UND before week 24 (I got there between week 16 and 18) I then would have stopped TX and regrouped.

Evidently, Teufel wasn't offered that option.

wyn

[jmjm530]

Wyn: think a lot of people, after having gone 12 weeks with at least a 2 log drop, feel motivated to at least go for the 24 and see what the results are at that point.
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Of course your correct, but it's a slippery slope. Because in reality, you're then potentially trading 72 weeks for 12 weeks, with still only around a 50-50 chance of SVR, possibly less. That's why I think those with little or no liver damage, should give that some thought before marching on to week 24. Of course, those so inclined to accept the extension and odds, will look at this differently. In any event, I think a good doctor should offer CHOICES based on stats supplied to the patient. In "Teuf's" case, I doubt if any choices were presented and in fact it appears there wasn't even a week 24 test. If correct, borders on malpractice IMO.

-- Jim

[wyntre9]

I understand what you're saying, but I think it's a personal and individual decision that has to take all factors into account; finances, health insurance, job situation, family/relationship issues, etc.

Most would probably agree that one has to go for at least 12 weeks before making a decision as to whether or not to continue unless, of course, blood levels or severe reactions call for stopping treatment immediately.

The results of the 12 week PCR often aren't even available for a couple of weeks and if you have at least the minimum 2 week drop and you've already put in an additional 3 or 4 weeks and you're tolerating the meds, continuing to have a VL decrease,  have a chance of reaching UND, then it's natural to want to try another 2 months.

Some people do beat the odds.

After having invested the time and energy into trying to slay the dragon for 12 + weeks, what's another month or so?

I'm not trying to dismiss the effects of the meds but a lot of people have a really hard time even getting themsleves situated with regards to inurance, money, job, etc., that the idea of starting again from scratch can be overwhelming.

Plus it's been documented that the lower you damage level the better your chances of SVR.

But, like I said at the beginning, it's entirely a personal decision and everyone has their own reasons for deciding how to proceed.

No matter what the individual conclusions, i think the process is tough for all of us.

BTW, I hate to say it but I think you could be right about the malpractice issue.

How are you feeling?

wyn

[Teufelhunden]

I was hoping you'd respond. The more I think about the past year, "mismanaged" is a pretty good description. Tested 1st time at week 14.  Test consisted of only Qualtitative and showed Detected but not in the reference range.  Measured with COBAS AMPLICOR VERSION 2.0 at Quest Diagnostics, Chantilly VA. The doctor then made a note on the results to have them run a Quantitative. Results came back showing <50.  Nothing done at week 24. Week 35 another PCR was done. Same machine, same place and looks like only a Qualtitative. Results show Not Detected.  Last day of treatment was June 8th. I don't think I saw him again until Sept 10th when I had this latest PCR done. All he did then was shake my hand, congratulate me on completing treatment, thumped my back a couple times and emptied my wallet. Never called me with the latest results. I called repeatedly and Friday finally got in touch with him and he said he had the results on his desk for a week and was perplexed over them and was "PROCRASTINATING" calling me?

[jmjm530]

I've discouraged people in the past from sueing the doctors, because you have to prove negligence, not just sloppy treatment. I think in your case, given you were detectible at week 12, and your doctor didn't test at week 24 -- I think you may have a case for medical malpractice. Of course, I'm not a lawyer, but those are my thoughts. So sorry again. You're a real gentleman and warrior with such a great attitude. Get another doc and reevaluate your options.

-- Jim

[Teufelhunden]

Thanks Jim. Always valued your opinions. Next go around will be with a new doc.

[mremeet]

Remember that there are better drugs on the way, hopefully Telaprevir will be along in another 1-3 years or so. Plus you might be be able to get at it even sooner if you enroll in the phase 3 trial. Also, check out Alinia, Alinia is already available and is already FDA approved (unlike Telaprevir). It might turn out to be another powerful HCV antiviral that's already on the shelves and ready to use. Just remember that things are hopping in HCV research right now, and you have every reason to be optimistic about "claymore-ing" the virus second time around with one of these extra drugs providing some airstrike capability for ya. You've got an F1 liver so you can wait until the time is right to make the final move on it. Semper fi dude!

[willows]

When I experienced viral breakthru at 30 weeks, my visit to the doc was so surreal.  He acted like I was a failed "project" and he also did not call me as soon as he got results.  Waited until I had a regular appointment and then he struggled to tell me.  It took me a long time to figure out that NO doctor likes to have a tough treatment fail with one of his patients, perhaps it interferes with self esteem.  All I know is it took him a hell of a long time to tell me.  And it took me even longer to come to terms with it.

Now, I don't even give it a second thought.  I have a new doc and I love him and he says  wait for teleprevir in 2009.  So I wait.  Perhaps you would like to wait with me?

Willow

[jmjm530]

Doing OK. Thanks for asking. Skin problems in check as long as I am diligent with my topicals, which I wasn't this week. LOL. As to bp, cholesterol, etc. -- I think I found a solution. I stopped testing :) At least for awhile. Then probably back on some meds.
Hang in there. It will be over soon.

-- Jim

[zazza]

So sorry to hear this. Your case is a warning bell to all those not entirely UND at week 12. I wish you would have been presented the option to extend to 72 weeks.

Yours and my stats are similar with relatively low viral loads and still detectable at week 12. I am doing 72 weeks, but of course there is no guarantee that this will do it.

Best of luck with future tx. There is better stuff coming.

Zazza

[Forseegood]

so sorry to hear this, but like Jim said, it's really good that you are at such a low liver damage score...and I'm sure the treatment itself bought you some time until the better drugs are available. Best of luck.

[charm27]

Im really sad to hear this as well..howver going int ot his tx we know our odds..not that that makes it an easier I know.

Your very lucky to have such low damage and like Forseegood said the tx itself bought you more time.

Best of luck

New Drugs on Horizon and coming our way......

[Teufelhunden]

Thanks. Lots of good info. It wasn't until my seventh week when the warning bells went off. It's when I found this forum and some of the discussions were to treat or not with low VL's and minimal liver damage for 1a's. I'm thinking why my doctor didn't suggest waiting?  But, by then it was 7 weeks to late. New doctor for sure. Thanks again! You guys are great!

[dointime]

Hi - when I read your post I just thought - oh no, not another one.  Sometimes all the incidences of tx failure just get to me like that, nothing personal.  I really don't know how the doctors manage to cope with the frustration of the current failure rate.  

Anyway, welcome to the party.  I''ve just recently joined myself and need all the friends I can get.  Well, there's gotta be some upside to having this effing virus, right?

dointime.