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476246 tn?1418874514
4 weeks VL, NOT RVR
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

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Avatar universal
Marcia, I'm a bit confused at your test results.  What is the sensitivity of this test?  From what I'm reading it seems to say that they detect antibodies but not viral load and that the test has a sensitivity of 80 but that there is undetectable viral load at 80 and so all they can say is detectable but less than 80?   Either you have detectable viral load above the test sensitivity or you don't, I always thought..and it seems that you don't from reading it as written?

Hope you are doing okay with the sides.

Trish
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498948 tn?1253059441
I'm not going to comment on whether or not you should extend tx because I'm a Geno 1b and I know little about Geno 3s.  But I did want to say, keep your chin up and try not to be too disappointed with your four week results.  I felt the same way when I came back with a reading of 24VL.  I felt so sure that I had cleared by that point it put me into a blue funk for several weeks.  When I got my 12 week results back finally and I had reached UND I was elated.  That time will come for you too.

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Sorry you didn't make RVR.

If I remember, your genotype is 2 or 3? Are you on weight-based ribavirin or flat dose? (how much do you weigh/height and how much riba are you taking? Do you have fatty liver? Insulin resistance? What was your pre-tx hemoglobin and what was it at various points during treatment? How have your side effects been so far? How much liver damage do you have?
------------------
Study supporting extending tx to 48 weeks and weight based riba for geno 2 and 3 who do not ahieve RVR
http://www.natap.org/2007/EASL/EASL_33.htm
http://www.natap.org/2007/DDW/DDW_11.htm

Importance of Ribavirin concentration (Shorter Course Studies)
http://www.hivandhepatitis.com/2008icr/easl/docs/050608_a.html

---------
The other thing is that you're part Black-American, often listed as a negative predictor although recently I've read some studies (can't find them) modifying this a bit.

Sounds like you probably will want to extend. For how long might depend on your viral response (ideally you would be tested weekly from now on, but at least at weeks 8 and 12); how much fibrosis you have; and to some extent whether geno 2 and 3. Also factoring in might be if you've been properly or underdosed with riba so far.

This would be a good question to ask Dr. Dieterich.

-- Jim
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Marcia
I think your VL report is somewhat strange. 80 IU is a weird number not to be able to quantify below. What was the tests name?

I would be surprised if you find any studies supporting 32 weeks improves svr.
The only study I am aware of that recommends anything close to this is the Drusano model.
And that suggests 30-34 weeks after UND. You should be considering 48 weeks.

There isn’t much to go on really. Below is a summary

A 48-Week Duration of Therapy with Pegylated Interferon a2b plus Ribavirin May Be Too Short to Maximize Long-Term Response among Patients Infected with Genotype-1 Hepatitis C Virus
G. L. Drusano
The Journal of Infectious Diseases 2004; 189:964–70

If the hypothesis is that longer durations of therapy will result in a higher probability of a sustained viral response, this will have the greatest effect on patients infected with genotype-1 strains.We would still expect to see an improvement in patients
infected with late-responding non–genotype 1 strains.

For patients infected with HCV non–genotype 1, the 80% and 90% probabilities of a long-term antiviral response would require that virus loads be undetectable for 30 and 34 continuous weeks, respectively.


Increased SVR Rate with 48 Wks' Treatment and Higher RBV Dose in HCV Genotype 2/3 Pts Without a Rapid Virologic Response (RVR) Treated with Peginterferon Alfa-2a (40KD) (PEGASYS) Plus RBV (COPEGUS)
http://www.natap.org/2007/DDW/DDW_01.htm


Peginterferon alfa-2b plus ribavirin for treatment of chronic hepatitis C in previously untreated patients infected with HCV genotypes 2 or 3.
Journal of Hepatology 40 (2004) 993–999

Stefan Zeuzem


HCV-RNA was undetectable in serum after 4 weeks of therapy in 33 of 42 HCV-2 and 137 of 182 HCV-3 infected patients. This initial viral response was independent from baseline HCV-RNA levels in HCV-2 infected patients. The week 4 virologic response in HCV-3 infected patients, however, was higher for patients with a low baseline HCVRNA level (90 vs. 79% for patients with baseline HCVRNA #600,000 and .600,000 IU/ml, respectively).

The present study confirmed that an early virologic response predicts SVR [13,15]. The SVR rate in HCV-2 and HCV-3 infected patients who had undectable serum HCVRNA already after 4 weeks of combination therapy was 94% (31 of 33 patients) and 85% (117 of 137 patients), respectively.
Thirty-five additional HCV-3 infected patients cleared HCV-RNA from serum by treatment week 12. The SVR rate in these 35 patients according to baseline HCVRNA (600,000 IU/ml) was 85% (11/13) and 59% (13/22), respectively.

In the present study, the SVR rate was higher in patients infected with HCV-2 than in those infected with HCV-3, suggesting that virologic response rates should be presented according to single genotypes rather than to any arbitrary combination of genotypes. Within the group of chronically HCV-3 infected patients, a higher virologic relapse rate was observed in patients with a baseline HCV-RNA concentration of more than 600,000 IU/ml.

Additional prospective studies are required to address the question whether patients infected with HCV-3 and a high baseline viremia should be treated for longer than 24 weeks.


Peginterferon Alfa-2a and Ribavirin for 16 or 24 Weeks in HCV Genotype 2 or 3
The New England Journal of Medicine

Mitchell L. Shiffman, M.D.,


Accelerate Stats
Genotype 3 Rapid virologic response
Yes…..187/219 (85)
No……57/145 (39)

Patients who do not have a rapid virologic response should not be considered easy to cure and should not be offered abbreviated treatment.

Understanding HCV Nonresponse and Identifying Candidates for Retreatment
Mitchell L. Shiffman, MD

For patients with genotypes 2 or 3 who relapsed after their initial course of treatment, retreatment for a longer duration, from 24-48 weeks, is also a logical approach and supported by a retrospective analysis.[21]
However, no prospective data are available to support this approach.

CS
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451988 tn?1209915425
you are on the money; that's what they do here in NYC; UND+24w;  you will be undetectable at 8w, for sure; remember most studies look at GT2/3 together; practically  all GT2's are UND at 4w; that often is overlooked; so considering you are GT3, you are not doing that bad, just looking at your log drop; i think 32w is a good idea; good luck to you...
C.
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476246 tn?1418874514
Trish... thank you... Hope you are doing better yourself.  The sides are a bummer, too. I thought I was seriously anemic, but my Hb from last week was still 12.4. They took it again this morning and the doc will call me tomorrow with the results. Everything else still looks great, except the ferritin has gone a bit above normal range and whites are at 2.2 now.

As to my results, I believe you have misread the results.

It is not a HCV Antibody test, it is a HCV PCR test. If I would have been UND the result would have read

Hepatitis C (HCV) PCR: NEGATIVE  

On the next line it explains that there was DETECTABLE virus below 80, but that it was not quantifiable. It does not say undetectable anywhere.

How I understand it is that they do there testing in stages. They went down to the sensitivity of 80 IU/ml and there was detectable virus.... so they did not go further down to their most sensitive test, which is 20 IU/ml.

The result means that there is detectable VL below 80 IU/ml

Marcia



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476246 tn?1418874514
Thank you, kitkat! I won't let that one get me down. I just need to work out a good strategy!

Marcia
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548668 tn?1394190822
I haven't any info to share here, but do you have a written printout of your PCR so that you can quote the type of test here?  

The log drop is still a huge drop, which is certainly showing your system is responding well to the meds.   I guess some more research is on the cards for your decisions;  maybe we should all boycott Dr D's site until you manage to post him?  

Thinking of you heaps Marcia;  I hope some others with similar historical results will come to the aid of the thread with their experiences...
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475300 tn?1312426726
My GI did not even check my VL until 12 weeks (GT 2B) and I was UND then.   I did reach SVR at 6 months post TX.  Hang in there, you are on top of your TX much more than I ever was.  Good Luck to you!!!!!

Denise
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476246 tn?1418874514
Thanks Jim.

Geno 3a
Baseline VL 1.300.000
no biopsy due to slow clotting factor (swimming in the dark reg. stage, steatosis, etc.etc.)
2 ultrasound scans confirming no irregularities anywhere
45 years old, other wise healthy
56 kg, weight based Riba 800mg (14,3 mg / kg)
180mcg Pegasys

So I have been receiving SOC, no underdosing or anything.

I had asked Dr. D all these questions before and he suggested that he would probably try to give me a bit more Riba, but my doc wasn't up to that.

His answer as to extending was that if EVR, he would add 24 weeks to tx after reaching UND.

I am already happy I got my doc to do the 8 weeks PCR, as they usually do 4 and 12. I was trying to get a 6 week PCR, but we compromised on 8 weeks. I have stressed to her that if I UND at 8 weeks, I would like to add 24 weeks to that.... bringing me up to 32 weeks.

Marcia

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Firstly, sorry you didn't UND at 4 but you are almost there.  Extending 24 past UND sounds reasonable to me.  Hindsight, how I wish I would have have had regular PCR's past 12 weeks so I would know when I cleared -  could have knocked a couple months off of my extention.  Hang tough, I'll bet money you've cleared already -  Good Luck
Trin
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Do you have your pre-tx hemoglobin and hgb values during tx? As per studies, including posted above, serum riba values can be very important in terms of SVR. While crude, hgb drop is one reasonable barometer how well the riba is being absorbed. I agree with Dr. D. that you should probably raise your riba depending on both your hgb curve and how you're handling side effects. Maybe arm yourself with his post and some studies and press harder with your medical team. The fact that you did not RVR should give you more ammunition.

-- Jim
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220090 tn?1379170787
Some tests are quantitative to 80 and qualitative to 10.  The test Vertex uses in the trial is quantitative to 50 and qualitative to 10.  So it is possible to get a result as Marsha did that detects the virus, but can't quantify it.

Eric
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388154 tn?1306365291
Yea a little bummer, maybe we geno 3 if not RVR shall be treated as a geno 1. The 48 weeks strategi has something to do with the  time it takes for liver cells to be replaised ( at least my doc talked about that), that could vary but 300days could do the trick for some.

If I were you i should start to advocate for 48 weeks.

I also thought  about Dr Ds aproach about extending 24 weeks
after UND.
But i dont think there is any studies backing that up.

ca

PS if you write in to dr D ask him what hes backing that up with.
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412873 tn?1329178055
I am so sorry to hear you didn't make RVR.  But the huge drop in vl shows you are responding to the meds.  This is just a bump in the road that you will get past..  You are fortunate that your docs will work with you on possibly extending tx.

You and I both put alot of thought and planning into our tx. But as we are learning, the path tx take cannot be predicted.  Ah, the thing we can't control...blood levels!  The one thing I know I didn't factor in, LOL!

Thank goodness for the forum.  Keep researching, keep advocating and you will win this in the end.  The big picture is SVR and you can still get there. :-)

Love ya, sis!!

Izzy
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476246 tn?1418874514
Thanks everyone. I am so beat up, I will reply everyone later. Love you all
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476246 tn?1418874514
Baseline hb  13.2
4 weeks        12.4
5 weeks        will get result tomorrow, but I'm sure it's much lower, as I have deteriorated since last week.

VL from 1.3 million to below 80.... I would say the Riba is working and I don't think I should up the dose, as I am feeling mighty bad already
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476246 tn?1418874514
Thanks for links and info
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179856 tn?1333550962
Marcia

I don't believe there are any studies out there that would support just adding a random 8 weeks to treatment - it would be do the 24 or do 48 unfortunately.  I had wanted to do 60 weeks and the doctor(s) told me (including Jacobson) that if they didn't have hard evidence that something was beneficial it was not worth just adding extra time helter skelter.......so i did the 72.  The good thing was it worked and was worth it.

Anyway, 80 is practically nothing and most likely you will be UND at 8 so technically you really are still well under the 12 week window.  It just matters how very aggressively you personally want to treat or not.  I can't imagine that the 80 count will still be there at 8 so I wouldn't sweat it much.

Believe me I know how you feel - I know it doesn't make it any easier but...there are a lot of us SVRs out here who did not get an RVR (I did have an EVR at week 4 but never cleared until between 12 - 24 so yup I get the pain at wanting to write that I"M UND email, I sure do!).

deb
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476246 tn?1418874514
I'm not a geno 1... so not clearing by week 12 would mean STOP.  The 12 week window does not apply in the same way for us as for geno 1.

Dr. D. doesn't suggest adding 8 weeks to tx. He suggests that genotype 3 should add 24 weeks to the time of UND IF EVR.

This is tx he suggested to me:

UND at 4 weeks or before   24 weeks tx (SVR)

UND at 6 weeks would mean 30 weeks tx (EVR)
UND at 8 weeks would mean 32 weeks tx (EVR)

But

UND at 12 weeks would then again mean 48 weeks tx

If not UND at 12 weeks STOP treatment.
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476246 tn?1418874514
I will present the matter to Dr. D and ask him, if he has any studies backing this up. Or maybe a paper he wrote himself, or something... He must have something to back up his theory, I could show my doc.

I am not in a great hurry, and hope that there will maybe come some more literature on this in the next few months. I mean, I have almost five months to work this out. And she is willing... She suggested herself that she will look for studies on this subject. She really takes her time and we always have long discussions when I'm there. She's actually really cool about stuff and she loves her work very much. I know that we will be able to figure out something. She just doesn't want to do something random with no evidence of it working. Fair enough.

Marcia
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476246 tn?1418874514
all the others, Isobella, Kristina, nygirl, lolitriqui, GDSgirl, Trinity, thanks for all the input and kind words.

Marcia
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443006 tn?1229205442
Hi Marcia,

My four week VL, which was HCV RNA PCR, came back less than 75 IU/ML, and I was told by my doctor that that was undetectable because that's as far as the test will go.  You're not much over that at 80, right?  Did you have that same test?  

Keep plugging away.  It sounds like you're SOOO close.  And you're right about on the same schedule as me as far as your HGB and RBC drops.  As soon as I went on Procrit, those levels came right back up to normal and I've been able to reduce that Procrit and I'm still stable and have been able to maintain my 1,000 mg Riba dose.

Hang in there, Marcia.  You're going to make it.

Nancy
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Marcia, Sorry to see the news, and I'm praying for a good outcome for you. I will be watching this closely, because I was already having issues with my tx plan.  I'm geno 2, and my NP kept saying that if I was UND at 4 weeks, they would stop tx at 16, rather than 24. (over my dead body).

I'm still meditating for Unnnndddd, unnnnddddd, unnndddd, lol, but realistically,is it even possible to go from 30.3 million to und in 4 weeks?  Has anyone done that??  I was getting ready to ask y'all for clarification on how and what to fight for if I DON'T make it.  Pretty frustrating to think that I'm dam'd if I do, (to 16 weeks) and dam'd if I don't. I'm starting to think that for my situation, your numbers might be better.

Getting nervous here,
cathy
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476246 tn?1418874514
Even a geno 2 being RVR should only consider doing 16 if you had a low VL at baseline. So that is out of the question for you. Do not let them make you do 16 weeks.

As to your question.... I have learned that anything is possible with this disease.

I'm rooting for you!
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29837 tn?1414538248
Well my friend, I'm sorry you haven't gotten better results by now. I know very well how you feel and wish I could advise you on prolonging the treatment, but being 1a I think it's harder for me to clear and that presents an entirely different scenario.

However, I personally would continue treatment. Even with the near death experience of overdosing with Infergen, the doctor kept me at that dosage for four months.

At any rate, whatever you decide, I hope and pray you clear once and for all. God be with you...

Magnum
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559277 tn?1330622339
Hey Marcia,

I'm sort of in your boat. I had a log drop of 3.4 at 4 weeks and VL of 110. My GI was very happy with the results. Me, not so much. I went to a hepatologist @ U Miami for a consult and he was pleased with the results too. He suggested that if I was really worried about SVR that I might ask my GI to extend 8-12 weeks. He said statistically there wasn't much data to support a 2-3 month extension for g3, but that it couldn't hurt.  My GI didn't do a PCR at 8 weeks. I will have my 12 week PCR in 2 days. The GI wasn't so much in favor of extending based on the week 4 PCR. She said we'll wait and see @ week 12. I'm still going to push to extend to 32 weeks minimum.  I hope your doctors are receptive to do whatever it takes to get to SVR.

I know people can get all gloomy and doomy about   g3 and RVR. With my week 4 PCR, weight, dose and little patches of fatty liver, the hepatologist said I have about an 80% chance at UND, and 70% at SVR with 24 week tx. Good odds but I like my options open.

Blessings!

~c
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Hey! It ain’t over till its over and your far from it and that depends on how much you want it. The 8 week PCR is just 4 weeks away so you got to keep fighting, keep moving forward, and don’t look back, lol. If it is any help my hgb dropped from 15.9 to 13.2 to 11.2 in the first five weeks and it was a scary ride down but it was "manageable", yeah right, lol! keep plugging away.

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Thanks, and I am rooting for you too!  You're so close that I feel certain you will beat it down the rest of the way, and reach a permanent SVR.  Isn't it just bizarre how we have to consider so many variables, and have a plan B, and then a plan C, D, E as well?!

I'm still waiting for my bloodwork to be scanned into the doc's website.  I thought "How cool is THIS?" when I first saw how quickly I could see my results- one day later!  But this second one was drawn on Thursday, and nothing has popped up yet, so it's a wait and see game again for the CBC's for now.  I have a feeling it's nothing like the wait between 4th and 8th week though, and I can feel your pain already.

Hope you get to feeling better soon; hang in there BADSS,

cathy
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Thanks for the elaboration on the test results, I didn't quite understand that.

Marcia, while this might not help you.. this helped me *eventually* with the disappointment of not getting RVR .. you are even closer to your RVR than I was to mine, I had a VL of 217.  My UND at 6 weeks helped but didn't totally console me until the UND's just kept on coming and now I tell myself, I could have RVR'd later that same day or the next day for that matter... and so could you have.  Just the same, we go on the results we have and I think you'll make good decisions for yourself.

I recall your riba being 800mg?  I think your doctor is reluctant to raise it .. and yet I'd consider 1000mg in these early stages if you can get her to go for it and if you are in favour of the idea yourself.  Your hgb is not bad at all at 12.5 BUT .. having said that, an hgb of 12.5 for one person being not so bad is a heavy hit for another person and it only matters how it hits YOU.  

Good luck with all this.  Get your rest and take good care.

Trish
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CONGRATULATIONS You are well on your way to SVR...you had a massive log drop....and you are 2 or is it 3 genotype...you will clear....just keep doing what your doing...and extend if you can...GOOD LUCK SISTER....yours odds are  way up there...not sure but you are in the 80% range for sure
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146021 tn?1237208487
I think that Rocker is right; congratulations are in order!

You did drop really low from where you started, the emphasis use to be on a 2 log drop, which you certainly accomplished.
I know it's frustrating to wait for the magic word 'undectable' but you are well on your way to accomplishing that.

You have barely any dectable virus! Hang in there! Just like the organ grinders monkey said when his tail got caught in the fan.....

It won't be long now!

Hugs,
Bug
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372366 tn?1284407473
  Thats good that you got more than a two log drop!!!  I thought that was all that was needed in your first test???                                                                                    
   My first test read, RNA positive, below test detection limit of ( < 600 i.u./ml ) and this was concidered a good thing, all the Doc's congratulated me.!!!!
   So you should be celabrating ya would be in Canada !!! The virus in your blood went from 1.3 MILLION  to LESS than 80, THATS < .0165 %, LESS THAN , LESS THAN THAT!!!! THATS GOOD.

   I think you should talk about this with your Doc's.!!!

Harry
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408795 tn?1324939275
Wishing you the best, one day at a time is all anyone can ask.  I think you're doing great!!  God Bless
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Hope you are feeling better today.  I finished my text a week before you started and I was routing for you all along cause you are so sweet!  I had a similar situation.  When i went for the 4 week PCR, the doctor said i got rid of a big chunk (that does not sound UND to me) of the virus and then he told me i cleared at 4 weeks at visits after that.  I missed my two week PCR cause of the office staff that told me it was not necessary  Now, don't believe him.  i did 24 weeks and because my hemoglobin dropped from 14.5 to 11.6 to 10.3 and went up to 10,6 and finally dropped to 9.6 at end of tx, i was so wiped out and winded and just slept all the time.  I asked about extending me a few more weeks since I have 8 shots sitting in the fridge and tons of riba but he said that its either 24 or 48 and that he didn't think i was a good candidate for it.

I got no rescue drugs and now am waiting till November for 3 mos. port tx PCR.  One year is alot longer than twenty four months.  So I am hoping to not relapse and he feels that i have 85% chance of cure.  The difference is extending for G3a is like 2% more I think.  Why beat our bodies up if we don't have too.

Good luck!

Rita
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Sorry about all the misspelled words, just really tired.

Rita

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Rockerforlife - CONGRATULATIONS You are well on your way to SVR...you had a massive log drop....and you are 2 or is it 3 genotype...you will clear....just keep doing what your doing...and extend if you can...GOOD LUCK SISTER....yours odds are  way up there...not sure but you are in the 80% range for sure

No offense Rocker but your post makes no sense. If indeed marcia’s odds were 80% why the need to extend. Marcias odds are NOT 80% far from it. If she doesn’t extend relapse is the most like outcome. How long to extend is the question.

Anyone doing 24 and doesnt RVR do not have high SVR rates.
To restate what ML Shiffman has to say
Patients who do not have a rapid virologic response should not be considered easy to cure
Marcia didnt RVR.

CS
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476246 tn?1418874514
Rocker... thanks for your good wishes and encouragement.

CockSparrow... thanks for clarifying the matter.

I think a lot of people are not aware that the 4 week RVR doesn't mean the same for geno 2 and 3 as it does for geno 1.

Our pivoting point is at 4 weeks and there's at 12. So for us it is very important to be RVR at 4 weeks. And if we don't UND by week 12 we have to stop treatment. As they have that point at 24 weeks, if I'm not mistaken.

So I would say we are talking about apples and oranges when talking about treatment plans for the different genos.

Marcia
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As Jim mentioned, you've only had a .8 pt drop in your hgb @ week 4 (Baseline hb  13.2 /4 weeks 12.4), that is a pretty flat curve(straight line(g)) even with only 2 data points and a dosage of 14.3 mg / kg ribavirin is only marginally weight based at best, if at all..As was for me, maybe you have a high tolerance for the riba, might be worth having your doctors look into it a bit more. IMO, the importance of riba is still underestimated, even though numerous studies support the high riba dose comcept..
Best of luck, hang in there..pro
(I'd post some riba links, but unfortunately, I finally deleted many of my hcv related bookmarks)
PS: I had 2 riba dose increases in my first 8 weeks up to 1600mg, and my hgb still held above 11 through out the balance of 64 additional weeks of tx...everyones body is different...;^)

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If not too late, you should really test at week 5 (and weekly thereafter if still detectible) to find out exactly when you become UND. While no direct study back up, it will give you and your team more information in terms of low long to extend especially if side effects start becoming a problem. For example, if UND at week 5, then extending less than 48 weeks may be a reasonable option depending on a more in-depth evaluation of some of studies cited including. I assume, but not sure, that these studies only tested at weeks 4 and 12 -- therefore the SVR results for the week 12 group would appear to include at least some who became detectible at weeks later than let's say 5 or 6. Therefore if you became detectible at week 5 or 6, in theory your odds for SVR would be better than the the week 12 UND group as a whole.

Also, and I know you have a lot on your plate now, you still might want to address the riba/hgb issue I mentioned earlier. Raising riba, if safe, is one of the few things in your control NOW that reasonably could affect treatment outcome. How long to extend, while critical, is a decision that can be made later on.

-- Jim
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476246 tn?1418874514
Just got my latest hb

baseline    13.2
4 weeks     12.4
5 weeks     11.7

The riba must be working, if it went from  1.3 million to below 80 in 4 weeks. The out come is not THAT bad.... but definitely not good enough for a geno 3.

My doctor was happy with the result.... but I'm definitely not!

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388154 tn?1306365291
If you were a geno1 you would be trilled over the result, i think geno 1s that are UND at the 12 week mark has about 80% reaching SVR  at a 48  week treatment.

But we geno 3s have heard we are the easy geno so we whine and whine  if not UND by week 4 which a geno 1 never do .( How awful and dangerous if I a geno 3 has to do 48 weeks get a grip geno 3s)
I think we shall revalue apple an orange thinking, also that geno 3 is the easy geno if only doing 24 weeks.

If I´m not misstaken i think I saw a study precented here at the forum not long ago that said that the only geno that could be differnt with better SVR rate if not RVR is geno 2.

**** sparrow if you have the links please chime in also gonna ask za.

Marcia your dragon is doomed got a good feeling for you.

Your friend and brother

ca
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388154 tn?1306365291
Is it really fair to take geno 3s of tx that not are UND week 12 why shouldn´t we make it with 72 weeks, also remeber that geno 3s more often have fatty liver and and progress faster in damage.
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Your hgb is coming down at about, I would say, a normal rate.  It seems to take a sudden hit at about the 4 - 6 week mark.  Mine went from 13.2 to 10.6  (around there) at Week 4.   At 11.7, I would still say take the riba increase and the accompanying fatigue in the beginning stages of tx and for as long as you can handle it.   I don't mean to frustrate you in saying that, because if I recall one of the things your doctor was more adamant about was not increasing your ribavirin, do I remember that right?  And it's hard to argue treatment options on the things a doctor digs in their own heels about.  However, if you yourself are in favour of it, there are plenty of studies that demonstrate the increases in SVR for those with higher riba compared to those with lower, within acceptable dosages.

I also agree with Jim .. if you can get more frequent PCR's right now, that would be a huge asset to know when exactly you go UND.  And I too would push for a Week 5 PCR and no later than a Week 6.  I had a Week 4 and a Week 6 and being UND at Week 6 put a whole different spin on it for me.  If I'd tested at Week 8 after Week 4, I wouldn't have known I was clear somewhere between Week 4 and Week 6 and it makes a huge difference to how you feel about your outcomes and any ongoing treatment decisions, particularly being Geno 3 and having to make the most of your 24 weeks of treatment and any extension decisions and with your various considerations factored in.  I'd strongly consider testing sooner than Week 8.  

Good luck, Marcia.

Trish
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Looks like the concept of treating geno 3 like geno 2 shouldn't necessarily apply anymore.  Geno 3 is harder to treat and I agree with bump up the riba. I remember talking to Marcia about that very thing before she started tx and was very adamant that that her doctor only recommended 800 mg a day  so she was comfortable with that.  Hoever, she did say she had spoken to the doctor about it.   I'm taking 1000mg and I'm not that big!
My hgb has never dropped below 11.  Week 27 coming up.
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476246 tn?1418874514
It's great when you are geno 1 , but not if geno 3

According to the link the report that Jim posted it says:
In the ACCELERATE trial (for geno 2/3) the SVR rate was 90% in patients with RVR and only 49% in patients without RVR4.

So that doesn't sound too good anymore, unless i prolong treatment and up my chances that way.

Marcia

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476246 tn?1418874514
Thanks Trish. I wish I would have secretly swallowed an extra riba every day. I don't think I would be in this situation today... but too late to dwell on the past.

I gotta find out what to do best out of the current situation.

It's too late for a 5 week PCR... that was yesterday before my shot 6. I will call the doctor and ask her if I can't go in and do the PCR now or at 6 weeks, instead of at 8. But as we cannot pay for it ourselves, there are some things which cannot be just done. I have been turning this in my mind since yesterday. I will always wonder, I know.

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475300 tn?1312426726
marcia wrote---
"I think a lot of people are not aware that the 4 week RVR doesn't mean the same for geno 2 and 3 as it does for geno 1.

Our pivoting point is at 4 weeks and there's at 12. So for us it is very important to be RVR at 4 weeks. And if we don't UND by week 12 we have to stop treatment. As they have that point at 24 weeks, if I'm not mistaken"

my response--Thank you, I was just wondering about that and you explained it perfectly.  I was sitting here (GT 2B) hoping & praying that because I didn't get a PCR at 4 weeks that it is not a major problem for me.  Still learning here

Denise
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Marcia,

If you take your shot today, you can still have blood drawn today (before the shot) for your week 5 test.
--------------------------------------------------------

Not that anyone is necessarily saying otherwise, but the week 4 test is also very important for genotype 1's -- not just geno 2's and 3's --  and in fact some studies suggest it can help determine treatment length.
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179856 tn?1333550962
Personally I've always thought that geno3s should be doing 48 weeks just like geno2s because of their high relapse rate - Dr. J actually told me he felt the same way (I asked him at my consult because a good friend of mine in here was a geno3a who had relapsed).

She treated again for 48 weeks and got SVR.

The four week test is important for everyone........because when you think about it a geno 1 with bad numbers (like me) has to do 72 weeks to play catch up...not just extend to 48.  We ALL wanted that UND at week 4 so don't sweat it it's a NATURAL reaction but a numb er that low could even be a false positive.

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388154 tn?1306365291
I think we ought to take many studys with moderation.
Since there hasn`t been done frequent enough pcrs we dont really know what the odds is for someone thats clearing say week 5 or 6 and in a way geno 3 could be a bit luckier geno then geno1.

Me my self , you. kristina, mar had all huge drops and very little virus left at the week 4 pcr, dont see that as often in geno 1s . Mar who had little more virus  left then me at the  week 4 result cleared with the old protocol 24 w tx  800mg riba and weigted more then you.

Everybody here in sweden that I know about geno 3s except my self ( about 5 persons )did clear with the old protocol, the only thing that stroked me was that they all were at least 20Ibs lighter then me. I was 200lbs on my first  tx.

ca
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388154 tn?1306365291
Everyone of them I´m talkink about in Sweden only got a first pcr at 12 week.
So how knows if they all were RVR lets face it we are still very much labrats.
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i know nothing about SOC for 2 or 3s.  It has never made sense to me, but good luck.  
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476246 tn?1418874514
Bro, thank you...  You are so right.... They should just have a SOC for geno 3 saying 24 weeks if RVR4,  EVR6 and EVR8 36 weeks, anything else 48 weeks...  or something which makes sense. Some kind of formula.

I'm just printing out all this stuff and will put it in the mail for my doc today or tomorrow. She is searching on her end and I am on mine.



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476246 tn?1418874514
I only weigh 56 .... 123 lbs, so maybe I could be saved!???

I think I will try to get my doc to go on a compromise and I'll be happy. I personally do not think that I would have to do the 48 with being almost RVR4. maybe EVR8 would be good enough and able to do lets say 32 or to be safe extend to 36 even. I know there are no studies on this... but I'm talking about logic, if logic can at all be applied to this tx.

Marcia
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476246 tn?1418874514
Thanks Deb. Hope you are feeling better with your low hgb.

Marcia
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Marcia,

You really rock. Here you are with ten kids! You're a dynamo even in the middle of this crazy treatment.

I have you in my thoughts and know from the inside out that you'll overcome this bump in the road. And you and your doc are working together to get past this, which is such a fantastic bonus. Hugs.
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476246 tn?1418874514
Did shot 6 yesterday. Too late.

I echo what you say about the importance for ALL genos to do the 4 weeks PCR.

I will also suggest the upping of the riba to her. It looks like i am holding up quite well with my hgb... she still has me on the iron pills and other supplements. They upped my whites and platelets and especially my hgb pre tx quite well in a very short time.

Marcia



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179856 tn?1333550962
she still has me on the iron pills and other supplements

Might have something to do with why you were not UND at week 4 - viral rep and all of that.  Maybe without it you would have been.  Don't know if that complicates the situation or not but it's worth discussing with the doctor.

Here in the States its either 24 or 48 weeks geno3.  No in between.  you really should get another pcr stat so you know where you really stand right now. The more info the better when making these decisions. (MY doc wouldn't let me have an 8 week, which didn't matter because I didn't clear until after 12 but man it made me angry!)
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476246 tn?1418874514
Nancy, rita3a, ladybug, GSDgirl, portann, sunqueen, comeagain, Izzy, Rocker, Jim, CockSparrow, Trish, nygirl, Deb, Pro, Jasper, fretboard,  I hope I didnt forget anyone!
Thanks for all your good wishes and answers and suggestions, your help. I'm gonna read and dwell and turn around all suggestions and advise in my head. Am having to start working through some fog... I can feel it starting to come up. Must be the day after the shot. Weird enough, the shot has given me a little energy boost. I think I'm getting addicted to this stuff. Ha ha... I've noticed that I kind of feel better the day of the shot and after and then get hit over the dead on the following day.

I love you all!

You warm my heart and I'm getting all mushy here.

Marcia
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476246 tn?1418874514
Rocker... thanks for your good wishes and encouragement.

CockSparrow... thanks for clarifying the matter.

I think a lot of people are not aware that the 4 week RVR doesn't mean the same for geno 2 and 3 as it does for geno 1.

Our pivoting point is at 4 weeks and there's at 12. So for us it is very important to be RVR at 4 weeks. And if we don't UND by week 12 we have to stop treatment. As they have that point at 24 weeks, if I'm not mistaken.

So I would say we are talking about apples and oranges when talking about treatment plans for the different genos.

Marcia
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476246 tn?1418874514
How the heck did my post from 6 hours ago appear again????

Some weird stuff happening here
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476246 tn?1418874514
'Here in the States its either 24 or 48 weeks geno3.  No in between.'

I disagree with you here. It was an American Dr. (Dr. D) who suggested to me that one should add 24 weeks to EVR for geno 3.

And lolitriqui confirmed that's how they treat in NYC.
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No advice, suggestions or words of wisdom, just wishing you the best in eventually clearing and some day putting this all behind you.  God bless and good luck.
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In Bergen County NJ which is 10 mins. from NY city, my doc who also works on research and trails said 24 or 48 weeks.  He said an extra four or eight shots didn't do all that much.  I guess they all have different opinions.  At this point, I am going to trust his expertise and do what he says from the percentages he has seen with 3a's.  He is considered one of the best in my area, works in a teaching hospital, and is a gastroenterologist who also specializes in hepatology.  

Rita
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451988 tn?1209915425
you are right; numbers only exist for 24 and 48 w TX; in macia's case, she would have been UND with tests we use here in the US anyway, i believe; her log drop is substantial; it's at this point a cost benefit calculation; this stuff is not good for you; my thyroid went 32w into TX, for example; in NYC, the other side of the river, TX is 24w for gt3'a; if not UND by 4w, TX is extended; most people have a 12w viral load test and are UND, so they extend for 12w+24w, makes 36w; me personally, i did 44w and wait now; that was because i couldn't get into columbia univ med. ctr. earlier; good luck
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476246 tn?1418874514
'in macia's case, she would have been UND with tests we use here in the US anyway, i believe; '

I certainly do not agree with you on this one. Detected is detected. My test only went down to 80. If I would have had a mores sensitive test, it would still have been detected.

It would maybe have shown a number of 75 or 50 or whatever... not UND

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476246 tn?1418874514
Some doctors have started to adapt treatments tailored to the individual, instead of rigid SOC. More and more discussions and studies are pointing that way. To individualize treatment according to the facts and situation and to adjust during treatment. They are trying to fine tune treatment, like one does with most other diseases, but are still in the process of developing all that.

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476246 tn?1418874514
Do you have anything written by your medical team suggesting this kind of treatment we are talking about.. the EVR + 24 weeks? They must be basing it on some of their own research. I'm going to try to ask Dr. D., if he has written any papers on this, as he is using this method too.

Marcia
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UND plus 24 is based on the Drusano model. which despite its limitations appears to be used, sometimes in modified form, but a number of clinicians as reported here. This certainly does not mean that someone should just tack on 24 weeks as it's more complicated than that.
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476246 tn?1418874514
Thanks Jim. I will try and find the Drusano model and print it out for my doc. I have also asked Dr. D. The expert forum is open for questions, but I nothing happens when hitting 'send'.

Thanks for all your help.

marcia
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476246 tn?1418874514
I found out what to do... the question was to long and I had to divide it in two.
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179856 tn?1333550962


"In Bergen County NJ which is 10 mins. from NY city, my doc who also works on research and trails said 24 or 48 weeks.  He said an extra four or eight shots didn't do all that much"

That is exactly what Dr. Jacobson in NYC said and he is one of the biggest experts on this in the entire world.
----------------------------------

"you are right; numbers only exist for 24 and 48 w TX; in macia's case, she would have been UND with tests we use here in the US anyway"

I have no idea what this means..................not when we have tests that go down to "2" but from what I believe Drusano was wiped out a long time ago and they opt for the 48 week for the harder genome of 3a (3 is harder than 2 and I don't believe should be treated teh same way) look at FLG and Kal and all those 3as (never met a 3b) who have treated and then had to retreat again for the 48.

It just makes sense to try and do the whole magilla and get every bit of the odds the first time that you can - rather than have to wait, increase dosages and then do it all over again LONGER.

I probably never would have treated again had that been the case (well I guess I would have had to but...to me it seems so much harder it's not worth it).
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451988 tn?1209915425
Dr. robert brown jr. director center for liver disease columbia uni. nyc; google their #; i think in your case they will still suggest 24w; but me personally, i would do some more; i am just really worried about relapsing; but they do like to see 24w undetectable if not UND at 4w; you can always do 48w if you really want to make sure; but it is just a # we have studies on, not more not less; i guess with your test, you know already more than many of us; good luck....
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476246 tn?1418874514
Thanks, I'll check it out. I'm trying to gather as much material as possible.

Marcia
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Comeagain alerted me that you were looking for links on extension for geno 3s. My internet has been down most of the time this last month due to a broken modem, so I will take the easy way out and just copy an old post of mine before my internet goes down again.

"The reason I did not put in a link earlier was that the main source I had was in German! I have now found one in English. Especially note the second section called "What about Slow Responders?" Here we go:

http://www.hivandhepatitis.com.....107_b.html

Here is the German link as well:

http://www.hepatitisandmore.de.....15_S16.pdf

The German article is from "Hepatitis & More", a magazine for further education of hepatologists. The chart at the bottom of the last page suggests a new consensus for treatment regime for genotype 2 and 3. You should be able to understand this even if you don't know German. Note "Peg-IFNa + > or = 12 mg/kg Ribavirin". Figure 10 and 11 on the second to last page will also be of interest to you.

My ex is now scheduled to participate in a study for relapsers of genotype 3. He will do 48 weeks with weight based dosing. In his case this means 180 mcg Pegasys and 1200 mg Copegus.

Best wishes,
Zazza

P.S. Here is another link:

http://www.natap.org/2007/DDW/DDW_01.htm"
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See where it goes with your next PCR.  Ask for 48 weeks if you can take it.  If you are willing why would they refuse you?  

My doctor did say ideally, 48 weeks is better for 3a but I had a low viral count (450,000) and he thought 24 weeks would be enough.  

RIta
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See where it goes with your next PCR.  Ask for 48 weeks if you can take it.  If you are willing why would they refuse you?

I am a geno 1 -  slow responder.  My hepatologist refuses to extend to 72 wks. He is board certified in Hepatology and Hepatology transplants.  I can't tell you how willing I was and he flat out refused to listen.  I was armed with ten or more studies which he refused to read and told me there is not enough data to support extending to 72 wks will increase my chances of SVR.  I have been forced to seek out another doctor at the closest teaching facility which entails a 5 hr round trip.  Not all doctors are created equal.  Obviously, I ended with an arrogant SOB but I took charge and hopefully it will make a difference in my outcome.
Trinity
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146021 tn?1237208487
You are really proactive and taking charge of this tx. Give yourself a pat on the back!

I noticed Zazza had an article in German....is that one of your languages?

I am no expert on tx, I relied on advice here, and instinct & I was lucky.
The only factor that was noticeable on me was a 4 pt drop in hgb in the first two weeks. By the time I got the blood test back, I was on week 3 and was und <50.

You are small and your dosage looks appropriate, but why the iron supplements? I had always heard be careful of iron while on tx.
Take care.....hope you're not stressing as much as you sound, I know you want to get this right....
Hugs,
Bug
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541844 tn?1244313424
Wishing you the best Marcia.  Since I have been reading this forum, you are always there with a kind and helpful word for all.  Humor too!  I have you in my prayers as I know many others do as well.  God bless.
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476246 tn?1418874514
How nice to wake up to this! Thank you so so much.

And no problem with the German, I grew up in Germany and it is actually the only language I don't have a foreign accent in. :-) And a lot of Danes had German in school like they did in Sweden back in the days, so I might be lucky that one of my doctors speaks it, probably the older doctor (the overlæge).

I will read and print... I am high lighting certain passages in the reports, too.

Hugs, Marcia
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476246 tn?1418874514
Marcia : she still has me on the iron pills and other supplements

nygirl:

Might have something to do with why you were not UND at week 4 - viral rep and all of that.  Maybe without it you would have been.  Don't know if that complicates the situation or not but it's worth discussing with the doctor.

Please do not take any offense by what I have to say now, but I really felt that I need to address this comment you made, as i feel that you are saying something without knowing the situation. The body needs adequate levels of everything to function properly, so certain deficiencies are not good and sometimes have to be supplied with vitamins, also iron.

I assume that you are referring to the low dose of supplementary iron I am taking and should have maybe inquired, why I am taking them.

So now I will explain:

My hgb and all my iron counts were on the low side before starting tx and my doc and I decided that we need to bring them up. And it worked with the supplements I am taking. She was and is still monitoring me closely. My hgb went up to a reasonable amount and the other iron counts were still lagging behind.. They have finally also come up to a reasonably level.

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476246 tn?1418874514
I will now refer to something Jim posted on Deb's thread about administration of Procrit and ferritin and transferrin level, and I think you will understand where my doctor is coming from. Jim, I hope you don't mind me quoting you here... and thanks for posting that piece of info.

Jim:

The same info as I presented should be on the Procrit (epo) package insert, or at least it was. Here's same thing again from Cleaveland Clinic and although not HCV specific, the principal stands that Procrit will not work with inadequate iron stores.
https://www.clevelandclinic.org/myeloma/Procrit_phaseII_less_frequent.htm

"...Must have transferrin saturation of at least 20% and serum ferritin of at least 50 ng/mL If transferrin saturation is < 20% or serum ferritin < 50 ng/mL, the investigator may utilize bone marrow evaluation results or clinical judgment to determine if iron stores are adequate . If inadequate, the patient will be supplemented with iron..."


You see, my transferrin for instance is only at 30, so it has to be monitored not to go further down and my ferritin level has been constantly around 40 and has now finally gone up to around 300. (a bit over the marker, but adequate if Procrit need so be administered.)

She told me to go on with the iron, because I still seem to need it. If I wasn't doing this, I will have problems with Procrit administration, which I most probably will need at a certain time.

So I must say that my doctor is very watchful in this regard and knows exactly what she is doing.

Marcia
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476246 tn?1418874514
Yes, German is one of my languages. I did my first 5 yrs in France, then 10 in Germany, 20 in Indonesia and 10 in Denmark. AM ready to move on to the next country now... but tx is obviously gotten in the way :-)

As to the iron, I have to take iron supplements, because all my iron counts were either too low or on the border of being too low. Everything had been steadily dropping before tx incl. my hemoglobin levels.

Thanks, I'm actually not stressing, I just get really busy, when I want to organize myself. I always knew that this was going to be a possibility... as one never knows where this journey is gonna lead us... :-)

Just need to get all my ducks lined up again, as they where lined up for another route... New route... new line up.

Hugs,

Marcia
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476246 tn?1418874514
Thank you for your kind words! I will keep you in my prayers too.

Marcia
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476246 tn?1418874514
Thanks for your input... It is not always easy to get through to docs... I think that I am lucky that my doctor is open to the facts and is researching on the subject and is listening to me and wants to find the best solution. And she also knows that I am not the averaged Danish case, with my heritage that is different. And we still have some months in front of us to do the research.

And personally, I do not think it is possible for me to switch doctors just like that. We live in an organized health care system, so I would need to find out, if it was at all possible and what other options I would have. But it hasn't come this far anyway. I'm just two days away from the news. So nothing drastic for me at the moment.

Marcia
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Bugs, it Looks like Marica’s Doc is being a little “proactive” a head of the possibility of prescribing Procrit. If he has treated patients with hepc for a long time he knows what might be coming next and is preparing her for it just like mine did before I started Procrit and everyone got wacked about it. It is better to have more iron than less when starting Procrit. Marcia’s next blood test will probably include an Iron stores test and her Doc will know if she has enough to start the Procrit, read the insert here on the web about Procrit.

jasper

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Oops, Good morning, took too long to type reply and did not see your replys. Have a good day, out the door and down the road.

jasper
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476246 tn?1418874514
First, rita3a and nygirl, thanks for your input and bringing this up again and again. It is a good lead for further discussion...



I must say for me that I want to be more open minded than the either 24 or 48 approach. A lot of studies are happening at the moment. We are trying to improve tx and not to get stuck to the rigid ways. A new era of tx is emerging, where doctors are more an more realizing that tx needs to be custom tailored.

A new study one suggests ie. that geno 4 should actually be treated for 36 weeks. They have recently been thrown in the same pot as geno 1 and they are realizing, that they are actually somewhere in the middle, but harder to treat than 2 and 3.

With geno 3 they are realizing that we are not as easy to treat as geno 2, but are somewhere in the middle, too.

So, me being a thinker and always open to new suggestions:  This is when I start brain storming... using my own logic, but also based on existing info and studies.... I might be incorrect of course, but it makes sense to me... so here we go...

It would not astonish me, if in the near future they would come up with the same 36 weeks suggestion for geno 3 who don't RVR4 but EVR, as they did for geno 4.

This pattern would make sense as it does for geno 1 slow responders. They don't do 96 weeks instead of 48, but do 72 weeks. That is 50% more tx, than the initial tx.

Wouldn't it make sense to have a geno3 EVR do 50% more tx, than the initial tx, too?

And then if a geno 3 is a slow responder, UND at 12weeks, one doubles the tx to 48weeks.

This is more or less what Dr. D. was suggesting. Do 48 weeks if only UND at 12 weeks, if not drop treatment and regroup.

So to me it only makes sense to extend to 50% more tx or whatever formula they use EVR + 24 weeks (or 30 weeks)

It is not the theory of adding 8 or 12 random shots, but adding a certain amount of weeks after EVR.  Even if it in the end looks like one is adding 2 months or 3 months, but that is not how the math works.

Okay enough of my brain storming for the time being






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439539 tn?1233469415
Good Luck on everything.
God Bless,
Tammy
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476246 tn?1418874514
Thanks, you are right on the spot. I love that!

Marcia
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476246 tn?1418874514
Thanks, Tammy!

God bless
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476246 tn?1418874514
Jasper, it is interesting to hear that there is another person who had the same problem. I am actually really happy that my doc and I both spotted levels going down slightly. And then I showed her some more blood tests my GP had done and when we put them all next to each other it was evident that all my blodd counts were on a line downwards... incl whites and platelets. After 3 weeks of the supplements I had carefully researched for several months and an addition of iron and vitamin K most of my blood counts were all going back into a nicer normal range. So that's how she decided that I should go on with them. She also agreed to me taking shiitake and advised me to eat raisins for the hemo.

Marcia
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Marcia,

I think it's excellent that you're researching tx extension options but that will not help you NOW. Personally, what I would be concentrating on NOW is how to get UND ASAP. Two things that have been suggested are upping the ribavirin combined with weekly viral load tests until UND, or at least a week 8 viral load test. I would make that my focus. Also, if you need Procrit to handle more riba (your iron stores appear adequate now) then ask about starting Procrit. You might also ask your doc about double-dosing the interferon until UND although the only studies I'm aware of double-dose from the beginning.

You could also add an addendum to your question to Dr. Dieterich in the professional forum both about increasing the riba and double dosing. Again, you have plenty of time to decide on whether to extend treatment and for how long. You have very little time to decide on whether or not to increase your riba and/or Peg and order a viral load test for next week.

-- Jim
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You might also question Dr. D. about whether you stil need irons supplementation in terms of your current adequate iron stores. Too much iron and treatment could be compromised -- too little and Procrit will not work. Dr. D. has the experience that hopefully will give you another knowledgeable opinion.
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476246 tn?1418874514
Thanks Jim. I always appreciate your views very much.

About ordering another VL for next week, a 6 week PCR, I cannot order it. I will not get another PCR before the 8 week mark. That gives me 4 weeks to down my VL from below 80 to UND.... I personally do not believe that I need to double dose or increase the riba to achieve that small a drop in the time of 4 weeks... I might even already be UND now. ... but I will never know...  That's why I am not focusing on this last drop as ... I would have, if my VL was still, lets say, up in the thousands.

From 1.3 million to 'almost' UND in 4 weeks shows to me that the drugs are working. They just didn't have that last little edge.

I'm not sure, but I don't think I'm totally off here on this one...

Marcia

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One thing I can say is that after 24 weeks, you get so used to feeling like s**t that you can go on and on.  It killed me to stop with 8 shots left in the fridge and a script for three more months.  I was tempted to just keep going but with my hemoglobin at 9.6 was scared since Procit these days is hard to get with Hep C.  My doc said that the insurance companies have caught on to people getting Procrit for this and have made it very difficult.

Also, if you move to the US as your next country, I'll refer you to my doctor.  He is HOT I tell you.  Looks like a rock star!!  LOL

Wishing you the best my fellow g3a sister.

RIta
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476246 tn?1418874514
ROFL.... Ha ha ha.... you are so funny

I've got the bad hots for my own hottie and he is a star, too. Bad a§§ bass player, singer and composer... so I really got all i need.. :-)  But thanks for the offer...

Being something which a lot of people refer to as a health freak and usually avoiding all kinds of meds, unless absolutely necessary... being 100 % organic in food, skin, household etc. products. Vegetarian, no eggs, etc... (occasional fish or seafood once or twice a year) etc. etc...

My problem with doing 48 weeks is not doing the 48 weeks if necessary... but why fill my body with extra months of this poison and risk thyroid, diabetes etc... if it is not absolutely necessary... If it is needed, I'll do it, but if not... why should I...

So I'm not trying to get out of the 48 weeks for reasons of dreading it, which by the way I do... don't we all dread every day of this?.... but that is not the reason I would prefer not to do it.

Thanks again.

marcia
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I know the fear of relapse!!!!  Waiting here till mid november for a glimpse of what my future will hold.  

The meds are poison.  I noticed that some of my teeth got loose, not ready to fall out but I wonder what would have happened with a longer tx.  It's scary!!!  I used to get sharp pains in my cuticles on my hands and feet.  The phlegm I coughed up was unbelievable all day. That has subsided somewhat now.  I had some weird sides not to mention the fatigue and not being able to breath at the slightest exertion..like making my bed.

Like the rest of us who have gone through treatment and those of on it, this disease is a wait and see from beginning to end.

Rita
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Sorry, I didn't notice two of the links I posted were incomplete. Here are the correct links:

http://www.hivandhepatitis.com/2007icr/easl/docs/050107_b.html

http://hepatitisandmore.de/archiv/2006-2/HEPandMORE_2006_2_S12_S13_S14_S15_S16.pdf

Notice how Berg (in the German article) in his suggestion for new tx consensus for geno 2 and 3 suggests that with no RVR tx should be extended to 36-48 weeks. RVR being defined as UND at week 4 with a test sensitive down to 10 IU/ml.

Berg also suggests that 16 weeks tx for geno 2 and 3 should only be considered by those who are RVR and have low baseline viral load and no cirrhosis. Being RVR but having high baseline viral load and/or cirrhosis equals minimum 24 weeks tx according to his suggestion for a new consensus.
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476246 tn?1418874514
God bless you, girl!  

That's exactly the kind of stuff I am looking for. I will translate the German article to English or Danish, if I have to. In case my doc doesn't understand it.

I had high baseline VL, so 16 weeks was not even considered... especially with my Afro American background. But that was what I had understood from the ACCELERATE study, that 16 weeks was only for low baseline VL.

Thanks,

marcia
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476246 tn?1418874514
I found the article in English, but it costs over 30 USD to look at it for 24 hours. I hope I will be able to print it for that price...
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179856 tn?1333550962
I thought you understood all along - we have been referring to Berg throughout this entire thread.

That's where the extension information comes from - the most current information that we've all been going by and the reason I extended to 72 was a combo of Berg and Sanchez Tapias........that is the model that the doctors now use as the bible.

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476246 tn?1418874514
No, I didn't know. Someone mentioned Drusano and I've been combing the net for that.

Berg suggests a new consensus for  g2 and g3:

with a test to the sensitivity of 10 IU/ml

Pegasys and Riba ca 12mg/kg (in contrary to 15mg/kg for geno 1)

if low VL and RVR  - 16 weeks
if highVL and RVR - 24 weeks

EVR at 12 weeks  - 36 - 48 weeks

So what I can see from his suggestion that with an EVR at 8 weeks... 36 weeks of treatment would be in line of his theory.

Marcia
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I think the verdict is still out there whether 36 weeks will be enough for non-RVR geno 3s. If you want to be on the safe side, do 48.
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476246 tn?1418874514
I'll be happy, if I can convince my doc to do 36, as she is not into prolonging at all. I will try what can be done.

Marcia
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179856 tn?1333550962
Agree with Zazzas info but I guess if your doc won't she wont.  I don't think the study you are looking at is that new really - and it was never concurred that 36 was enough.  All of the G3s I can think of who relapsed did 48, I don't remember one who did a different amount.

She should give you the best opportunity possible - IF you don't clear what time slot are you then looking at 72?


Look at DebC having to do 72 weeks of INFERGEN - at the end of the day give some thanks that you aren't stuck looking at that one - but believe me regular old SOC for 72 weeks is a long time.

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476246 tn?1418874514
Thanks for your comment, but let's not get carried away to 72 weeks right away. I am not a geno 1 who hasn't cleared before 24 weeks.

'All of the G3s I can think of who relapsed did 48, I don't remember one who did a different amount.'

Also, I am not a relapser, so you cannot compare my case to all the geno 3 relapsers you can think of.

I am a treatment naive geno 3... who did not RVR, but I'm almost RVR.... I frankly don't see a logical reason why I should not clear the last -80 viruses fairly soon, if I cleared 1.299.920 in 4 weeks. The logic of jumping to 72 weeks at this time,  just doesn't make sense to me.

If I wouldn't clear or would relapse, I would look at 48 weeks and not at 72... Just like all the geno 3 relapsers you were speaking about before. At least the first time around... If I would relapse again... than we could talk about 72 weeks...


I hope I did not misunderstand you, but if you reread what you have written and didn't mean to write it that way, please rewind, erase and rephrase, because that surely did not come out right, unless you meant it that way.

I am referring to your following comment, which was in my opinion completely out of place:

'at the end of the day give some thanks that you aren't stuck looking at that one'

... I don't think that it is your place to be telling me what to be thankful for or not...and how to give thanks.  That is strictly my personal business.

Marcia






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There have been 108 opinions posted on a viral load of <80 which you know is probably going to go away in the next few weeks or even days.  You posted and asked for opinions.  NYgirl was not suggesting or telling you what you should or should not be thankful for, only that 72 wks is fortunately not an option for you.  You have been stressing about this Marcia.  Only you and your doctor can decide what is best for you.  I took many studies and opinions with me to my doctor and it was pointless.  Hopefully, your doctor will be more receptive to what you think your treatment should be taylored to.  That is the important thing, how YOU proceed given the information you have gathered.  Sometimes when we over think things, the options become more of a burden that the problem itself.  Do what you think is best and if you don't want opinions, don't make it public.  
Trinity
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476246 tn?1418874514
I don't know what you are trying to do here, but it will definitely not work!

Marcia
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577132 tn?1314270126
Well, I'm going to add my 2 cents worth!  

I'm a Geno 3a who did not respond to previous treatment.  I was still detectable at 12 weeks and they continued me on til the 24 weeks and I was still detectable at EOT.  This was 4 years ago.

This experience has lead me to believe that G3a is not the easy to treat geno that it was previously thought and this time round I have pushed to extend my tx to 48 weeks despite having been on a PI trial and achieving UND at 4 weeks.

My reasoning behind this is that I had a forced RVR and that my immune system obviously needs as long as possible to come to grips with suppressing the virus.  I want to beat it this time and hit it as hard as I can.

I guess what I am trying to say is go for it Marcia.  I hope you can get your team to extend your tx for at least 24 weeks AFTER you achieve UND (which I am sure you are going to as you are SOOOO close).

I believe you have to give it everything you have got right now.

All the best to you xxxxxxxxx
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388154 tn?1306365291
You are you, you are not zazza or nygirl, I know they only want was it best for you.
if you do 36 and dont clear you are facing a total of 84 weeks as I am doing 72 alltogether.

I think they only want you to be aware of that in all well meaning.

As I said in a pm i trust your judgement you are both a fact collector and a gut person.
youl be just fine.

ca
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Whoa slow down,  you seem to know where you were going with this half way up the thread. I don't understand why you are so angry at Deb NY or Trinity.

From my perspective they were only trying to help come to terms with this.

All of us are going through stuff, none of us more special than anyone else,  I truly do not think I am.  I think point was wait till you get that bridge when you get there, then cross the  week bridge,

We are all here to help each other,  while we each "own" our own disease,  we lean on each other, and our Doctors.  

Sorry, but please slow down.  

Deb

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Break Time... Intermission!!! The last time one of these very interesting and informative discussion went south it got pulled, Puff like the secretion of ones overactive IBS and everyone lost a chunk of information.


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476246 tn?1418874514
Thank you sweetie, for telling your story and for you encouragement!

Hugs,

Marcia
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476246 tn?1418874514
right on bro... I have gotten the links of stadies I asked for in my initial post... have printed out all the studies I got through all the wonderful people on this thread... put them in a large envelope... written my docs address on it ... and it is going in the mail first thing tomorrow morning, so she can have it first thing on Monday morning.

On top of having my request fulfilled, I also got a whole lot of good advice, which i am thankful for.

In the end it will be her and I who will decide how to go on anyway. And it has to sit right with me.

Thank again, bro.

Marcia
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476246 tn?1418874514
Thanks Jasper!

I didn't really understand why when I address one person, a whole lot of others start jumping on me.
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