Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum.  ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
 | 

TX for 48 wks or 72 wks ?

by GingerB, Dec 16, 2007 10:30AM
I am starting tx soon.  My doctor mentioned a 48 wk tx plan, and then mentioned 72 wks.  My genotype is 1 and my viral load is considered high.  This is my first time treating and may be my only time as  I am at an age where I do not know if I will be able to deal with tx another time.  Does anyone know how much better your chances are of clearing the virus with a 72 week tx plan as opposed to 48 wks?  And  would your 4 wk, 8 wk, 12 wk and/or  24 wk viral load reductions play a role in whether to extend the tx to 72 wks.  Or  would it be best to go for 72 wks regardless  if I am able to?   Do you know if the insurance companies typically pay for the extra 24 wks of medication?  I appreciate any information you can offer.  I am just trying to plan ahead - there is so much to think about.  Thank you.  Ginger B.
Member Comments (54)

by jmjm530, Dec 16, 2007 10:44AM
No, it would not be in your best interest to go 72 weeks, regardless, unless you were stage 4 (cirrhosis) and I'm not 100%f sure there either.

As you suggest, your viral response will play a big role in determining treatment length.

For that reason, very important that you test viral load minimially at weeks 4, 12, 24, 36 and 48 -- but ideally you would test viral load weekly until UND, and then monthly throughout treatment. And do not assume that just because your doctor is drawing blood and doing "labs" that you are getting a viral load test. You must ASK specifically to be sure, and I suggest you ask in advance of treatment when you will be getting them.

You will also want to use the most sensitive test available. One good test is "Heptimax" by Quest Diagnositics. LabCorp also has a couple of good tests, but which one to choose might depend on how high your starting viral load is.

Best day to test for viral load is the day before your injection, or on the day of your injection, but before the injection. So, for example, you would draw blood for your week 4 viral load test the day before your fifth injection.

Without going into too many details now, 72 weeks is sometimes recommended if you have a two-log drop by week 12 (EVR) but still have some virus, and you are then UND by week 24.

All the best,

-- Jim

by wyntre9, Dec 16, 2007 10:52AM
To: Ginger
Whether or not you should consider 72 week TX probably won't be addressed until your 12th week PCR.

If you don't have a minimum 2 log drop by then, your Dr. may change or increase your meds and have you continue to week 24.  At that point, if you are not yet UND, TX will probably stop.

I agree with Jim that it's important to try and have a 4 week and an 8 week PCR so your VL decrease can be accurately charted.  I am a slow responder, on the 72 week ONLY because I didn't get a 2 log drop by week 12.  It is not something you WANT to do unless there are no options and you won't know that until you start TX and see how your body responds to the meds.  Everyone is different and hopefully you'll be one of the lucky ones.

I wouldn't worry too much, yet, as you might very well have a rapid and early VL decrease in which case the extension issue won't be relevant.

What's your starting VL and other stats?

wyntre

by zazza, Dec 16, 2007 11:01AM
To: Wyn
Some brain fog going on here? "I am a slow responder, on the 72 week ONLY because I didn't get a 2 log drop by week 12." should read "I am a slow responder, on the 72 week ONLY because I didn't get UND by week 12!!"

by GingerB, Dec 16, 2007 11:27AM
To: ALL
Thank you all for your helpful information.     From what I gather - I should have my VL tested weekly until UND  (and at weeks 4, 12, 24, 36, 48).      I should hope for a 2 log drop at week 12 and to be UND at wk 24.       If my VL does not respond to BOTH the 12 wk   2 log drop AND the 24 wk UND......then I need to decide whether to continue tx for 72 wks or try another tx medication.    Hope I got that all correct.  Thanks again for your valuable input.  Ginger B

by jmjm530, Dec 16, 2007 11:31AM
Sort of correct. Ideally you should have your viral load tested from week 1 until UND. Then, from that point on, it should be tested monthly throughout treatment.

Many doctors may not go with this, so a reasonable plan then is to test viral load at let's say weeks 4, 8, 12, 24, 36 and 48. But some of this again depends on your viral response.

As to what you should "hope" for -- you really want to be UND (undetectible) as soon as possible, not just a two-log drop. A two-log drop by week 12 is the MINIMUM you want. For example, being UND at week 4 is a lot better.

BTW don't sweat it if a lot of us remains unclear for some time. It certainly did with me.

-- Jim

by FloridaMouse, Dec 16, 2007 11:42AM
To: all
Sorry gang, I gotta say I'm in favor of the 72 week treatment.  I truly regret that I did not go 72 weeks the first time around.  I'm a geno 1a, S3/G3-4 and had a VERY low starting viral load of 90,000 when I attempted my first round of treatment.  I'm a 47 year olf female and i was undie at week 12.  I did 48 weeks and relapsed 5 months post.  After going to Shands at the University of Florida it was felt that had I gone 72 weeks the first time around I would have had a better chance at SVR.  The stats said pretty  much everything was in my favor for SVR with the exception of the amount of m y liver damage.

I've now started my second round of treatment (72 weeks this time).  I truly wish I had gone 72 weeks the first time.  Had I done the 72 weeks originally and relapsed I would not be putting myself through this again.  Instead I'm now spending 120 weeks of my life since May 2006 on treatment.    I would have rather given myself the best chance the first time.  I wound up with Rheumatoid Arthritis from round 1.  In most cases treatment is contraindicated in people with RA but due to the extend of my liver damage I was able to get back on treatment.  So here I am doing a second round while dealing with RA.  Because of the RA I am not a candidate for infergen.

Oh well, just my opinion.  If you can tolerate the sides, I'd say do the 72 weeks.

Mouse

by Proactive, Dec 16, 2007 12:19PM
To: Fl Mouse
It's easy make a second guess ("After going to Shands at the University of Florida it was felt that had I gone 72 weeks the first time around I would have had a better chance at SVR".), but I don't see where there would have been an indication that you do 72 weeks, you didn't seem to really fit the general criteria of studies for extension...
"had a VERY low starting viral of 90,000 when I attempted my first round of treatment.  I'm a 47 year old,  i was undie at week 12."
How did your HGB hold up during tx? Just curious...Pro
PS: Wishing you the best of luck in your second go-around!!

by wyntre9, Dec 16, 2007 12:20PM
To: zazza, mouse
Zazza,

*LOL*

Thanks Zazza!  I know YOU aren't afflicted with brain fog!  (G)

Ginger, I stand corrected;  I MEANT I'm on 72 weeks coz i didn't get UND by week 12!  (didn't reach that until week 17)

Mouse, I don't understand why you think you should have gone on the extended TX when you WERE UND at week 12.

I sure am sorry youre TX'ing again but in your case, it seems like you had a decent chance at SVR with the 48 week TX.  Did your Dr. originally suggest extending, and if so, what was his rationale?

Please help me understand.  I'm concerned and I know how much it stinks doing this TX again.

wyntre

by mremeet, Dec 16, 2007 12:50PM
To: ginger
Also make sure you get tested with a sensitive PCR test. Make sure it has at least 10 IU/ml sensitivity, and the best would be a test with 2 IU/ml sensitivity. Also you may want to research other additional things you might be able to do to possibly enhance your odds without necessarily simply extending tx to 72 weeks. One thing that might be helpful is to predose ribavirin for a few weeks prior to starting treatment. Another is to doubledose IFN for the first few weeks of treatment to help get its blood serum levels up as quickly as possible. These two strategies involve risks that may involve dose reductions later, which could hurt your chances of being successfully treated. But if you and your doctor know about rescue drugs and how they can be used to eliminate or reduce the likelihood of dose reductions, then the risks can be mitigated. Also, there's a drug that's used to treat parasites called Alinia that might also be helpful in getting rid of your virus. Alinia has been shown in preliminary studies (for geno 4) to be effective at getting rid of the virus when it is dosed with IFN and riba. It's still being researched for geno 1, but odds are it will at least be partially effective for geno 1 too. Plus it has virtually no side effects, and it's already FDA approved and available. Your doctor just has to be educated about the ongoing research with alinia for HCV treatment and be willing to prescribe it for you. Personally if I were planning on starting treatment any time soon, I would employ all three of the strategies described above. If the strategies worked at getting me to an UND status within 2 weeks, then I would NOT go 72 weeks - no way. In fact, I'd consider not even going 48 weeks, but that would depend on a lot of things.

by GingerB, Dec 16, 2007 01:41PM
To: ALL
Your information is very helpful.    If you don't mind, maybe I can send you my VL results during tx.    Thanks.   Ginger B.

by moahunter, Dec 16, 2007 04:04PM
To: jmjm530
"...Then, from that point on, it should be tested monthly throughout treatment."

Why would this be Jim? I had an UND PCR at 4 weeks, and was told that my next PCR would be 6 months post treatment (after 48 weeks). The reason being, that once you are UND, it is highly unlikely the virus will return prior to the finish of treatment. Being in Canada - I was told PCR puts quite a strain on medical laboratories, so it is preferred to only test when neccesary.

by jmjm530, Dec 16, 2007 04:15PM
To: Moa
Actually, a study was posted very recently that talked about the importance of testing viral load throughout treatment using a very sensitive TMA. Maybe someone will pull it up, I'll look around later. I tend to agree that if you tested UND at week 4 -- using a very sensitive test -- then in all probability you will remain UND. However, the study was still compelling to test frequently, and I heard the same both from my treatment doctor as well as a consult. If go to the ClinicalCareOptions website, you will see the same repeated -- I believe by Dr. Jensen in the "DocEye for the Hep Guy" video, i.e. test viral load monthly.

-- Jim

by jmjm530, Dec 16, 2007 04:20PM
To: Moa
Here's that thread and my first post. There are more studies cited and some good discussion:  http://www.medhelp.org/posts/show/374088
-------------
I think the importance of sensitive TMA testing has already been established early-on in treatment, as well as for  End of Treatment and post treatment. This article -- brought to my attention by "Willing" in another post -- suggests how important it is to continue sensitive TMA testing throughout treatment.

Basically what the study says is that detection of low level virus (below the limit of a PCR) can predict treatment failure. And conversely, UND by TMA can help predict SVR.

This was no doubt part of the reason that my doc wanted sensitive TMA's monthly during treatment (I tested via TMA  weekly before UND) and why a consulting doc -- when helping me to decide treatment length -- made it a point to mention that I was UND by TMA throughout treatment -- with the suggestion that in all likelihood the virus was gone for good.

Two good tests using TMA technology are "Heptimax" by Quest Diagnostic's Lab and "HCV RNA TMA QUAL" also by Quest. The latter should only be taken after you're UND by "Heptimax" since it will not produce a number, just either confirm UND status or not. LabCorp also has a very sensitive test using I believe PCR technology that would do the same thing.
--------------------------------------------------

"BACKGROUND: In chronic hepatitis C patients with an initial virological response (IVR) during antiviral therapy (that is, HCV RNA becomes negative before week 16 of treatment) the significance of reappearing viraemia below the detection limit of PCR is not known. We studied this phenomenon in subsets of patients. METHODS: We assessed HCV RNA at weeks 16 and 20 of therapy by PCR and by more sensitive transcription-mediated amplification (TMA) in 23 patients with breakthrough or relapse and in 34 patients with sustained virological response (SVR). All patients participated in a high-dose-interferon induction study for difficult-to-treat patients. Therapy consisted of amantadine hydrochloride and ribavirin, combined with interferon-alpha2b induction during the first 6 weeks and thereafter combined with weekly pegylated interferon-alpha2b. RESULTS: Among the 57 IVR patients, we detected transient or persistent reappearance of low levels of HCV RNA in 10 of the 23 (43%) patients with eventual breakthrough or relapse; but in none of the 34 SVR patients. In 5 of 10 patients reappearing HCV RNA was only detectable by TMA. CONCLUSION: Reappearance of low levels of HCV RNA in patients with IVR predicts treatment failure"

http://lib.bioinfo.pl/pmid:17591033

by moahunter, Dec 16, 2007 04:24PM
To: jmjm530
It just seems a bit of overkill to me. Yes, it would be nice to know I am still UND.. But, aside from the possibility of extending treatment in the unlikley even that I have not remained UND while on treatment, it seems a bit irrelevant to have 12 months of negative PCR's.

by moahunter, Dec 16, 2007 04:30PM
Just read your next post. Essentially are they saying that they can predict treatment failure with these more sensitive tests, so they can stop treating early? Or just that this prediction is "interesting"? Is anyone actually stopping in those circumnstances? Or is this being used to extend treatment? Even when RVR?

by moahunter, Dec 16, 2007 04:37PM
I may be a bit cynical here - but I think sometimes, especially in the US, there is a little bit of an incentive to order up "extra" tests, so that "extra" analysis can be done, so that doctors can charge for the time they spend "interpreting" the results, and labs can make money "selling" these tests.

by jmjm530, Dec 16, 2007 04:38PM
Moa: Essentially are they saying that they can predict treatment failure with these more sensitive tests, so they can stop treating early? Or just that this prediction is "interesting"? Is anyone actually stopping in those circumnstances? Or is this being used to extend treatment? Even when RVR?
--------------------------------------------------------

I think it's simply more information that can used for any of the above, or other scenarios such as when someone is having a very difficult time with side effects and trying to decide whether continuing on is worth it.

As a personal example, toward the latter part of my treatment, I was struggling with whether to extend past 48 weeks or not. My treatment doctor made a case to extend based on histology (stage 3) and age (58). Two other consults made a case not to extend based on my sort of RVR (UND at week 6) AND one made a point to emphasize that I was UND *throughout* treatment via sensitive TMA. Based on this input I decided to only extend six weeks as opposed to a more agressive extension and ended up treating 54 weeks.

Based on studies like this, I just can't think of any reason not to have this information unless not feasible, such as the tests being unavailable or not covered by insurance, etc. That certainly does not mean that anyone not being tested as frequently isn't receiving/received good care. As you may be aware, the week 4 test wasn't given all that often as recently as a couple of years ago, and now it's starting to become a standard.

-- Jim

-- Jim

by jmjm530, Dec 16, 2007 04:44PM
To: Moa
Our last posts crossed, but I feel just the opposite in that I think Hep C treatment has been given the short shaft by many doctors-- and I'll only speak for the U.S. because not interested in a U.S. versus Canada debate -- in that *not enough* testing is being offered by doctors because frankly it's a lot easier for some of them to simply assembly-line people through treatment with fewer tests and fewer visits. Thank for the discussion, but I'm talked out on this subject.

-- Jim

by moahunter, Dec 16, 2007 04:44PM
I was lucky to get the 4 week test - essentially only because I had failed monotherapy (for acute) I think. I can see the point in extra tests when there are complicating factors, but a PCR or similar test every month, for someone on a regular treatment, it seems to me, isn't going to have an impact on decision making. At some point - someone needs to way up the resources of overdoing things versus the potential benefits, I suspect Canada may be a little further ahead than the US on this.

by moahunter, Dec 16, 2007 04:46PM
I do think 4 week test makes sense though (it seems to be becoming standard in Canada now).

by moahunter, Dec 16, 2007 04:50PM
Fair enough Jim - it does appear tests were not enough in the past - and it is good we are moving to more. But I do think some balance is needed, no doubt you get this to some extent in US anyway, just in a different way, as I am sure insurance companies will not fund anything.

by Lonestar823, Dec 16, 2007 04:56PM
To: moahunter
Tallahassee is a good example of what Jim is talking about.  After three or four failed treatments she finally became undetected using Infergen.  She cleared at 12 weeks or before and stayed undetected until she reached the near end of the standard 48 weeks. Her monthly TMA picked up that she had a viral breakthrough.  I believe her riba was increased and she continued undetected for more than a year after that breakthrough which took her to 98 weeks + of treatment.  If the breakthrough had not been detected Tallahassee may not have been able to post that she remains undetected six months post treatment.  Nice, huh?

by jmjm530, Dec 16, 2007 04:57PM
Didn't mean to cut discussion off, just not interested in another "U.S. versus Canada" debate and guess which side I'm on :)

But just show you should know...as of a couple of years ago right here, the same arguments you've given were used as to why a week 4 test wasn't necessary. I know, because I was on the "importance of a week 4 test" side of that debate.

It's clear to me that the trendline in treatment is for more frequent and more sensitive viral load tests, allowing better prediction of SVR along with an opportunity for more intervention/tweaking of meds along the way.

I feel lucky in that my treatment doctor was ahead of the curve. I started treatment 2.5 years ago and had weekly TMA's from week 1 until I was UND at week 6. From that point on, my doctor wanted me to be tested monthly for viral loads. Never had any problems with my insurance company.

-- Jim

by moahunter, Dec 16, 2007 05:06PM
I don't really have too strong feelings on the Canada - US thing Jim, as I didn't grow up in Canada. I like having public health care, but it does annoy me in Canada that there is not the option of private. I can see the points from the posts above, esp. for the person who had relapsed before. I do relapse, maybe I will feel differently:-(   5 shots to go to 48 weeks now, worn out and very grumpy.

by jmjm530, Dec 16, 2007 05:09PM
On a personal note, if you were UND via TMA at week 4 and show UND at EOT via TMA (six days after your last Peg injection) you should have an excellent chance of SVR. All the best luck finishing up.

-- Jim

by FloridaMouse, Dec 16, 2007 11:39PM
To: Pro
After going through the realpse **** and having to do this again... I just truly believe that if someone is offered extended treatment, if they are able to handle the extended treatment and they  have the financial means or insurance coverage for pay for the extended treatment ... then why not just beat the tar out of the beast if given the opportunity.  Granted, the outcome may have been the same but I would have given it my best shot.  There was discussion about extending my treatment with my GI as the studies supporting extended treatment for genotypes 1 and 3 had come out right about the same time I did my 12 week PCR.  My doctor and I came to a  mutal agreement, based on my VL and my good response to stick with 48 weeks.  

As far as  my HGB ... I had a VERY high HGB when I started tx, it was 16.4 when I finished tx it was right at 10.

My starting HGB this time around is around 14.  The difference being is that I no longer smoke.  Smokers have a tendency to run higher HGB's.  It will be interesting to see how my HGB holds up this time.  Certainly hope I don't have another 6 point drop or I might be in a bit of doo doo LOL.

Mouse

by Proactive, Dec 17, 2007 04:25AM
To: Fl Mouse
"then why not just beat the tar out of the beast if given the opportunity. "
Mouse I do understand what you are saying, I have the same type mentality as you. ( if I had to do 54 weeks, why not do the 72). But it does appear your first tx was going along nicely per plan..unfortunately relapse was the luck of the draw, but hard (for this worker bee) to find fault with your 1st tx attempt..I wish you the very best of luck, while 72 weeks of tx is tough----my hat really comes off to retreaters as yourself.....brass bollucks, as Ramsey would say on his BBC show......;^)
Pro

by nygirl7, Dec 17, 2007 09:01AM
No, it would not be in your best interest to go 72 weeks, regardless, unless you were stage 4 (cirrhosis) and I'm not 100%f sure there either.


COMPLETE AND TOTALLY DISAGREE HERE WITH THIS STATEMENT.

I still had an active viral load at week 12 and extended to 72 weeks.  Was negative at week 24.  Am now SVR post treatment 10 months. Without extending I doubt fully that i would be.

the first time we do treatment is the BEST chance at killing this disease.  Why do the 48 and then retreat. If you can handle it go for the gold the first time and do NOT BE TRICKED by all this newfangled easy quick stop early treatment BS.  You are fighting to kill a disease that has a chance at killing you.  If you can tolerate it and you are still positive at week 12 I think it's FOOLISH to quit earlier than that.

If you are going to do it - do it once, hard and get it over with for good.

People who are afraid of trying to beat the tar out of this disease should NOT discourage others from giving it the best fight of their life.  Don't listen to them. Just because they didn't doesn't mean its not PRUDENT TO DO SO YOURSELF.


PS There is no such thing as extending for a few extra weeks proven to show ANY improvement.  it's either 48 or 72 according to ANY and ALL studies done and according to the best doctors in the world.

some people don't always manage to tell the truth on here and try to disuade people from doing what is right.

End of the story and I"m sick to DEATH of the BS that this person is constantly promoting. It's BS plain and simple.

by nygirl7, Dec 17, 2007 09:02AM
If you are positive at week 12 continuing to week 72 is the BEST guarantee that you will beat this disease.

by nygirl7, Dec 17, 2007 09:03AM
Not 56 or 58 - 72.

Wait and see how you are doing.  Don't contemplate quitting or extending until you know.  This is not MY ideal this is what all the STUDIES predict as the BEST chance of success.

OPinions do not really count only FACTS do.

by jmjm530, Dec 17, 2007 09:07AM
To: NY
Jim: No, it would not be in your best interest to go 72 weeks, regardless, unless you were stage 4 (cirrhosis) and I'm not 100%f sure there either.
---------------------------------------------
I think you misunderstood my above statement. When I said "regardless" I was referring to the poster's question.

Are you saying that a genotype 1 with little or no liver damage, who is RVR (UND at week 4), remains UND throughout treatment, and has no other negative predictive factors such as fatty liver, HIV co-infected, Afro American, etc -- are you saying that this hypothetical patient should treat 72 weeks?

I don't think you're saying that and that's all I'm saying. But maybe I'm wrong and you feel that EVERY genotype 1 should treat for 72 weeks, regardless.

-- Jim

by jmjm530, Dec 17, 2007 09:13AM
NY: End of the story and I"m sick to DEATH of the BS that this person is constantly promoting. It's BS plain and simple
------------------------------
Is this directed at me? Maybe it you took the time to actually read a person's posts ( I never suggested anyone detectible at week 12 should not extend treatment to 72 weeks) you would have less temper tantrums.

by nygirl7, Dec 17, 2007 09:18AM
Geno 1 detected at weekl 12 and UND at week 24 gets the BEST chance at beating HCV from doing 72 weeks.  If someone wants to wait until they are stage 3 before doing this that is their perogative but...they have the BEST chance at SVR doing 72.

No more no less no other answer is proven by fact.

by jmjm530, Dec 17, 2007 09:22AM
NYGirl:   Geno 1 detected at weekl 12 and UND at week 24 gets the BEST chance at beating HCV from doing 72 weeks.
--------------------------------------------------
Yes, that is correct. And I have never said differently in any thread including this one. Again, you obviously did not read my entire post and made a knee-jerk reaction based on a mis-reading of my first sentence.

by nygirl7, Dec 17, 2007 09:38AM
My knee is jerking alright.

WHY make everything so complicated on such a damn SIMPLE QUESTION?  If her doctor is considering 72 off the bat then obviously he finds SOME merit in it or he certainly would NOT be even suggesting such a thing.  Confusing people with words like "cirhhosis" - why?

Detectible at week 12 but UND by 24 do 72 for the best chance at achieving SVR.  Pretty easy to JUST say that and leave all the mumbo jumbo extras out of it when someone new asks a pretty straight forward question.

by jmjm530, Dec 17, 2007 09:47AM
Her doctor mentioned TWO plans. A 48 week plan and a 72 week plan. The question was should she do 72 weeks "regardless". And my answer was "no" -- that she only do 72 weeks if her viral load merited that.

I'm not making things complicated, just answering a question in an accurate fashion. Something you rarely do, as in this case, where instead of answering the question, you go off into one of your rants.

BTW thanks for all the instructive words about how I should answer a question, it's difficult to emulate your clarity and reason here, but I will try and do my best in the future.

by jmjm530, Dec 17, 2007 09:49AM
To: Corr
First sentence should have read in part, "...if her viral *response* merited that.

by nygirl7, Dec 17, 2007 10:10AM
LOL Jim you make everything so much more complicated than it need be that I did only read the very first misleading sentence and assume you were on another "shorter the treatment the better" rant and I did react to it.

So I apologize for that much.

by jmjm530, Dec 17, 2007 10:13AM
NY: LOL Jim you make everything so much more complicated than it need be that I did only read the very first misleading sentence...
---------------------------------------------------------------------------
While not rocket science, unfortunately the answers often aren't that simple, and trying to over simplify things is what really can be misleading. I think we've both seen that time and time again here, where someone picks out "this" or "that" from someone's post and runs with it -- often in the wrong direction.

But I will accept your qualified apology and write it off to a bad hair day.

-- Jim

by mikesimon, Dec 17, 2007 10:17AM
I advise everyone to do at least 72 weeks and that includes even those without  HCV. It's a wonderful experience and it just gets better and better the longer you treat. There is no good reason why the joy of treatment should be restricted to those with hepatitis. Let's share the joy with everyone and especially during the Holiday season. Mike

by mremeet, Dec 17, 2007 10:26AM
To: jim
jimquote: "I think you misunderstood my above statement. When I said "regardless" I was referring to the poster's question."

I also don't understand your response. The appropriate response to Ginger's question was not the definitive and overly simplistic declaration you made right out of the starting gate: "No, it would not be in your best interest to go 72 weeks, regardless, unless you were stage 4 cirrhosis and I'm not 100%f sure there either." How do you know if it's not in her best interest jim? She said she's advanced in years and is uncertain she will be able to tolerate multiple treatments, she hasn't mentioned how much fibrosis she has, she has the toughest to treat geno 1 and has described her VL as being high. Why would 72 weeks be off the table under nearly all circumstances, especially up to and possibly even including cirrhosis?? Without knowing more about her whole situation, that doesn't make any sense. And again the part about nearly all circumstances up to an and even including cirrhosis is totally over the top, and we've certainly been down this road before. You should explain to ginger your own age, fibrosis level, extended tx with uber dosed riba regimen jim and how it worked out for you before blanketedly telling others to not do something similar to get their own SVR.

jimquote: "Are you saying that a genotype 1 with little or no liver damage, who is RVR (UND at week 4), remains UND throughout treatment, and has no other negative predictive factors such as fatty liver, HIV co-infected, Afro American, etc -- are you saying that this hypothetical patient should treat 72 weeks?"

Nygirl didn't say anything about RVR, persistent UND throughout treatment, negative predictive factors like HIV coinfection, being african american, high BMI etc. And neither did you in your initial response to ginger. And the only risk factors ginger herself mentioned were negative ones where extended tx may be appropriate: i.e. geno 1, advanced age and high VL. So why are you attempting to characterize nygirl's response (and ginger's health criteria as being optimum) as if she did say such an obviously wrong thing? She didn't, she's only giving her opinion that is based on her experience (which is extensive, as we all know), and based on what (little) information ginger has provided about herself.  And it IS an absolutely irrefutable fact that extended tx DOES increase odds of SVR for nearly everyone (that achieves sustained UNDetectability), regardless of risk criteria mentioned above. That's a fact and let's not let that fact get lost in the wash.

I think what nygirl said was perfectly appropriate, and I think the advice cited above that you provided to ginger was off base for the reasons stated.

by jmjm530, Dec 17, 2007 10:27AM
To: MS
LOL. Now here's someone who obviously is having a "good" hair day.

by jmjm530, Dec 17, 2007 10:36AM
To: Mre
Briefly, when I used the word "regardless" it was in the context of the way Ginger used the word "regardless" in her original post. Her doctor mentioned two options to her -- 48 weeks and 72 weeks, and yes, I assumed he mentioned those options because viral response was not known at that point. Something (viral response) Ginger mentioned later on. All I was saying is that you don't treat 72-weeks, "regardless", meaning sometimes you do -- I covered that as best I could -- and sometimes you don't.

As "HR" has said in the past, it's impossible to cover all bases/all scenarios in anwering a particular question, and the best you can do is try and deal with the core issue as you see it.

No problem if you want to expand, qualify or disagree with my answer. My quip with NYGirl was that she was not paraphrasing me accurately when she suggested that I was against 72 weeks of treatment , which I actually did touch upon in my last sentence.

-- Jim

by jmjm530, Dec 17, 2007 10:50AM
Mre: . And again the part about nearly all circumstances up to an and even including cirrhosis is totally over the top, and we've certainly been down this road before. You should explain to ginger your own age, fibrosis level, extended tx with uber dosed riba regimen jim and how it worked out for you before blanketedly telling others to not do something similar to get their own SVR.
---------------------------------------------------------
I've discussed this before, but once again...

I treated at age 58 and at the time I started treating I was told I was between stage 3 and 4. I believe the original plan (with doctor 1) was to treat 48 weeks unless I was a slow responder, and then to treat 72 weeks.

At week 2, I switched doctors because I wanted to take a more agressive approach given my projected odds (before I had a vl test) of around 40% based on my age, and level of Fibrosis.

The "Uber" dose of ribavirin was my idea, and as I have stated in the past, I probably didn't need it because my week 1 vl was almost a two-log drop, and that was the week I was on a single dose of Peg and regular dose of ribavirin. Of course, I didn't get the vl test results back for a couple of weeks, so did not have that info in hand when I stepped up the meds.

I became UND at week 6 via sensitive TMA and remained UND via sensitive TMA througout treatment.

Near the EOT I consulted with perhaps 5-6 hepatologists (three I personally saw) regarding how long I should treat. All except my treatment doctor felt 48 weeks was the right number based on my RVR and the fact that I did not have cirrhosis. (It was determined mid treatment after my slides were re-read, that I was not between stage 3 and 4, but in reality probably closer to stage 2-3). I ended up compromising and treating 54 weeks, but looking back, especially with some of the more recent RVR studies -- not to mention 5 out of 6 hepatologists suggesting 48 weeks -- so looking back, I think 48 weeks was the correct number.

I don't think any of the above is inconsistent with my answer to Ginger.

-- Jim

by jmjm530, Dec 17, 2007 10:54AM
Forgot to add that "age" was not mentioned as a factor by any of the doctors except my treatment doctor. When I did bring the subject up to one specialist, he said that my RVR trumped my age. Since then I have seen studies that support this, as well as studies that suggest that the level of fibrosis also isn't an important predictor of SVR unless it's stage 4.

by jmjm530, Dec 17, 2007 11:01AM
To: Mre
Just to summarize, and then I'm done here -- because as you've stated this has been thrashed over between us in the past -- the question "Ginger" asked was:

"Or  would it be best to go for 72 wks regardless  if I am able to?"

It was quite clear -- at least to me -- that she was asking if she should do 72 weeks *regardless* of any other factors such as viral response. The correct answer as I saw it then (and now) is "no", she shouldn't do the 72 weeks regardless. It depends on other factors which I touched upon best as  I could. If you have "other factors" to add, that's fine.

Please have the last word.

-- Jim

  

by nygirl7, Dec 17, 2007 11:09AM
The end.

by mremeet, Dec 17, 2007 02:40PM
To: jim
Re-reading what both ginger and you said above, I agree what you said was technically not wrong or misleading. Sorry about jumping on you, it was just my first read of what you said appeared to be an almost airtight statement against 72 weeks of tx. You didn't "quote" ginger above (as I would have) when you said "regardless", and the way you worded it led me to mistakenly think that was your wording. I suspect nygirl (and perhaps others) read it the same way. Plus knowing how you feel about existing treatment and extended treatment, I was self-prejudiced into thinking you were going down that familiar road again. But I was mistaken and I apologize about that. I agree that she should not treat "regardless", come hell or high water no matter what happens for 72 weeks. Obviously there's more to it than that, and you're correct for pointing that out.

As Roseanna Roseanna Danna used to say: Never mind!!

by jmjm530, Dec 17, 2007 02:53PM
To: Mre
Apology accepted but I'm not going to let you off the hook that easily and will therefore have one more word, although you can still have the "last" (notice the quote marks please) as I previously offered:)

My writing style often follows a time-worn pattern of starting with a topic sentence and then expanding on that sentence in the paragraph(s) below. OK, you've already apologized for that, so I'll move on.

What I'd like to call your attention to is your first post in this thread, where you say in part "Personally if I were planning on starting treatment any time soon, I would employ all three of the strategies described above. If the strategies worked at getting me to an UND status within 2 weeks, then I would NOT go 72 weeks - no way. In fact, I'd consider not even going 48 weeks, but that would depend on a lot of things."

Now, given your own critique of my post, where are all your qualifications as to "age",
"toleration of future treatments, "level of fibrosis". No, you basically did what I did and answered in a general way picking out the points you felt were important to emphasize, unless you want to hang onto "depends on a lot of things" , but I don't think you'll take that tack. I don't have problem with what you said, just wanted to point out we handled it pretty much the same way.

As an aside, I also find it amusing that NYGirl  says to me "why make everything so complicated" and you said "The appropriate response to Ginger's question was not the definitive and overly simplistic declaration".

Hard to please everyone, you know. I just try and do my best like I think everyone else does here.

In any event, I think we're OK with this -- at least I am -- until next time, which hopefully will be well into the next year. And NYGirl, if you're still around, the same sentiments to you. Noel, Noel. Peace on Earth (and Med Help).

-- Jim

by nygirl7, Dec 17, 2007 03:38PM
I ditto MrEMeet - maybe I should have had a cup of coffee before reading or I should stop drinking my Interferon leftovers to get that "taste" but........as someone who did the 72 I take it VERY personally because it DID work - and seriously I just want EVERYONE to have the BEST chance that they can at killing off this disease for good.  I apologize as well but the way I read it well it got my blood boiling into over drive, I hate this disease  with all of my heart and it takes over sometimes.

I don't want to argue anymore so The end from me gain (not a last word type thing just an iteration of apology).

by mikesimon, Dec 17, 2007 05:31PM
To: Jim
Actually it wasn't a great hair day but I'm feeling good today. I hope you are too. Santa Mike

by GingerB, Dec 17, 2007 06:31PM
To: ALL
Thanks all - believe it or  not - I want to let you all know that I did learn a lot from your posts.  If you don't mind, I would like to keep you informed of my progress and my viral loads.  Stay well all....Ginger B.

by wyntre9, Dec 17, 2007 06:42PM
To: mike
"I advise everyone to do at least 72 weeks and that includes even those without  HCV. It's a wonderful experience and it just gets better and better the longer you treat. There is no good reason why the joy of treatment should be restricted to those with hepatitis. Let's share the joy with everyone and especially during the Holiday season. Mike"

Laughing ALMOST out loud.  :)

That was priceless.

wyn

by mremeet, Dec 17, 2007 07:21PM
To: jim
jimquote: "What I'd like to call your attention to is your first post in this thread, where you say in part "Personally if I were planning on starting treatment any time soon, I would employ all three of the strategies described above. If the strategies worked at getting me to an UND status within 2 weeks, then I would NOT go 72 weeks - no way. In fact, I'd consider not even going 48 weeks, but that would depend on a lot of things." Now, given your own critique of my post, where are all your qualifications as to "age", "toleration of future treatments, "level of fibrosis"."

Huh? Where are all my qualifications as to age, fibrosis etc? My qualifications were described right there in my post where they belong jim (and where you quoted me). That's why I *qualified* my condition for sub-72 wk treatment based on the conditions that (1) utilized the three tx strategies described above (i.e. alinia, riba predosing, IFN doubledosing), (2) achieving "UND status within 2 weeks" and (3) "would depend on a lot of (other) things." These are obvious and well "qualified qualifiers" jim, so it sounds like it's you that's doing the post misreading this time. And no I'm not required to give an entire dissertation in my limited scope post beyond what I said (i.e. "would depend on a lot of things"). The qualification I provided is good enough until ginger asks for more clarification (and even afterwards, for that matter). And remember, I wasn't giving a definitive declaration as you appeared to be giving above with the "regardless" statement (and yeah I know, you weren't really doing that), I was simply describing what *I* would do and how *I* would interpret the situation (re-read what I said if you question this). That's why I prefaced my take on tx duration with "Personally if I were planning on starting treatment..." etc.

quote: "No, you basically did what I did and answered in a general way picking out the points you felt were important to emphasize, unless you want to hang onto "depends on a lot of things" but I don't think you'll take that tack. I don't have problem with what you said, just wanted to point out we handled it pretty much the same way."

Jim, I don't think we handled it in the same way. Again, I misread your "regardless" statement and then jumped on you inappropriately. But your assertion above that it's me that's actually guilty of not properly qualifying my statement obviously isn't true for the reasons cited. So let's give it a rest, shall we?
Related discussions
Post Comment
To
Comment
Post Comment
Recent Activity
annieCinMD Thankful!
aheart Happy Holiday everyone
Friends
7 hrs ago by Elsone
Elsone commented on Lube and oil again
9 hrs ago
Elsone uploaded new photos
10 hrs ago
luckybritbrit added the Hepatitis C Tracker
16 hrs ago
aheart commented on photo
16 hrs ago
hartley78 commented on photo
17 hrs ago
RSS Expert Activity
What You Don't Know About Breathing...
Nov 24 by Steven Y Park, MD
Thanksgiving
Nov 23 by Thomas Dock, Vet. Technician
Snoring As Your Internal Smoke Alar...
Nov 22 by Steven Y Park, MD
Community Members