Treatment plan GT 3

I have finally worked out a tx plan for myself. This has emerged from daily research, since the beginning of April everybody's help I had here on our great forum and the answers I got from Dr. Dieterich. I hope that my doctors are gonna agree to it. I am not sure on the length of time I should predose Riba though, so any input on that would be greatly appreciated.

45 yrs old female, 57 kg, GT 3, VL 580.000, ALT 56, All other blood counts normal, Biopsy not done yet


1. Ribavirin 1000mg, predose for let's say 1 week ???

2. Pegasys 180mcg 1 x week
    Ribavirin 1000mg / day

PCR at 2 weeks

PCR at 4 weeks

If RVR... do treatment for 24 weeks

PCR 8 weeks

PCR 12 weeks

If EVR ... extend treatment. Count 24 weeks from time of UND.


So how does that sound??

Marcia

[HCA]

Marcia ,
It looks like an excellent treatment plan for a genotype 3 patient.I would consider pre-dosing the ribavirin for two weeks as it takes some time for hgb levels to fall which is a sign of strong levels of riba in the liver cells.You have (based on the information supplied) a terrific chance of getting your SVR,hopefully with a 24 week course.

[mikesimon]

Reasonable. Mike

[Trinity4]

Just keep in the back of your mind you may run into some snags.  Be prepared.  I think the blood work part is standard for most but you don't yet know how you are going to react to the meds so if there has to be some deviation from the plan don't get too upset.  SH!T HAPPENS.  LOL
Trin

[Marcia2202]

Thank you for the advice.

Marcia

[Marcia2202]

Thank you... I am thinking, that if I would get too anemic, it would actually be okay for them to put me down to 800 riba, as that would be my dose considering my weight.

I will also ask the hospital on when they administer rescue drugs etc...

Hopefully no snags....


Marcia

[Marcia2202]

Oh I forgot to mention that they do routine blood work, I think it is every week for a certain period, then every two weeks.. I read the Danish SOC somewhere, but cannot find it now.

Also I've probably had hep c for 25 years. Could be more could be less

[rochammer]

Hi

Good plan! I would get the biopsy just incase you are unlucky like I was and had a hard time on TX I was a geno 2 and treated 2 times. I am stage 3 but if I was 0 to 2 I would not have continued tx . Information is key for tx, a biopsy is important information to have if things don’t go according to plan. Here is a link about the need for a biopsy for 2’s and 3’s http://www.natap.org/2005/AASLD/aasld_10.htm

Good luck
Rock

[Marcia2202]

Thank you. They do not usually do biopsies on 2's and 3's here in Denmark, but my hepatologist said that we can arrange it anyway, as I really want the biopsy for two reasons. 1. to know the damage and 2. in case tx doesn't work, to have a reference

Marcia

[nygirl7]

Marcia

DO NOT DOSE REDUCE.  go with one and stay with it for the duration.............no matter what.  Take the Procrit if you need it but don't think about reducing.

Otherwise your plan sounds great.

As Trin said sh*t happens - just be ready to stick to what you've decided the very best you can and go for it.  "Visualize" (hahah) your success and don't let it GO!

You CAN and WILL do this. Your plan is easy clear and concise - you think the same way.

[Marcia2202]

Maybe I should call the whole thing of and visualize instead. At least I would not have to put up with any nags...

ROFL

[fretboard]

Why do you say for her not to reduce dosage of riba, I posted a question about this awhile back.  My question was presented the wrong way and squashed.  No big deal, I live and I learn, I know you're not supposed to deviate from the SOC due to the fear of not reaching SVR, but please?  What is she supposed to do if she is so anemic and she is crawling from place to place?  I mean she is so weak that she can't even walk, is she supposed to take a chance of death just to clear death?  How anemic does someone have to be before they do anything other than continue on the SOC.  The SOC that I said will have to be adjusted for some ppl.  thank you

[FlGuy]

It looks like a good plan.  Just a couple of things that I'd think about.  If UND after two weeks (pcr blood taken just before shot # - 3) then you might make the next pcr at week 6 (just before shot #7) and then every 4 weeks.  I don't know how liberal they are in giving pcrs where you are.  You are taking quite a bit of riba for your weight.  Weight based would be about 800 for you. So, you should keep a close on on hgb level.  If you are really impacted by the riba, and can also get epo (Procrit) there work out a plan with the doc so that when you it that hgb level you get on epo right away.  If really, really knocked by anemia don't fight off reducing to 800 too much.  Good luck

[orleans]

Hey, Did you not consider adding Alinia? Do they not prescribe "off label" in Denmark? With the side effects being sooo mild and all. Just wondering. jerry

[nygirl7]

"I mean she is so weak that she can't even walk, is she supposed to take a chance of death just to clear death?"  


Yes that is exactly what I meant.  Death is a much better alternative to reducing riba at any cost.  - Let me ask you are you a grown up?

Considering there are plenty enough of us in here who've had much much more dramatic hemo reductions and anemia than the normal person is EVER likely to NEARLY experience - I will tell you this one thing........how hard you fight for the SVR is a big part of whether or not you get it at all.  It is a TRICKY thing to attain - and taking the easy way out usually makes it perfectly clear that it will not happen.

"SOC will have to be adjusted for some people" - true but that doesn't mean they are necessarily going to have 50/50 odds now do they?

If you go into treatment with the mindset that you can drop meds and drop weeks and drop pills and drop shots - just don't bother. You have to go in knowing full well that you are 100% committed to doing WHATEVER it is you have to do.  Or you just aren't going to get it.  Most of the time that 100% needs to be turned into 150% and people need to ADD weeks or ADD meds or take epo or do tranfusions or even retreat...........

Ask people like Mr. Beagle Bailey who STARTED treatment with thalessemia and severe anemia BEFORE the riba and he did transfusion after transfusion and procrit and epo and did every single thing he could NOT to dose reduce and STILL did not attain SVR.

Please..........be a grown up when posting a question there is just no need to be a complete imbecile and make stupid sarcastic remarks like that. Nobody said anything about having somebody dying - that's just plain straight out moronic to even suggest such a thing.

[Marcia2202]

Thanks, your suggestion with the PCR if UND after 2 weeks (morning of shot #3) makes perfect sense. So there is more or less a plan A and a plan B.

Regarding the Riba reduction, that's exactly where I was coming from. Normally I should get 800mg. So I would not hesitate to go down to 800mg, if I had to.

I asked Dr. Dieterich a bunch of questions, and he replied the following:

We usually use pegasys with weight based ribavirin. I might tend to use more ribabirin on geno 3 since it is slightly more difficult to cure than is geno 2. If you get an RVR ( negative at week 4) stopping at 24 weeks is fine. However the longer it takes to get negative, the longer you must treat. Usually for about 24 weeks after PCR undetectable.... There is no data yet on predosing with RBV, but I am getting more convinced of it and would do it myself if I had to start again. The more viral loads the better. 2 weeks is good but mandatory at 4 weeks to predict SVR.

nygirl

Thanks for your enthusiasm and good wishes.... I think I would go for the reduction anyway. If I was geno 1.... I would most probably try to stick it out... So I understand where you're coming from

Trin and Fly Guy....

I know that this plan, like every other plan in life, is a guide line. Haven't our life happenings ended up very different than what we planned many times? Mine have, so I will keep an open mind to that... Thank you for reminding me about this...

Marcia

[jmjm530]

Why no biopsy yet? Even if you have decided to treat no matter what, a biopsy will give you added information to make mid-tx decisions, for example how to gauge the risks versus rewards of marching on should side effects become substantial. The plan itself seems sound but I'd pre-dose 2 weeks and build in weekly CBC's until labs level off, keeping a sharp eye on your hemoglobin and work out Procrit intervention points in advance with your doctor, should it be needed.

-- Jim

[Marcia2202]

Thanks for the advice.

No biopsy, yet, because I have only had my first hepatologist appointment last week. That wasn't with the viral hepatologist who will be treating me, yet. That was kind of a pre-appointment at the hospital to talk to a hepatologist and to take all the needed tests. They did all the tests again, plus cardio, another ultrasound, VL and genotype again, etc. The hospital wants to have all the results from their own hospital lab, so the stuff my GP had done, they will not use. I have not seen my viral hepatologist, yet. App. August 5. In Denmark they treat 2's and 3's without doing a biopsy. I asked for one and the hepatologist asked the viral hepatologist for me, if it was possible. She said that we can discuss it and also that I could practically chose between Pegintron and Pegasys. I want to treat with Pegasys. It seems she is quite open to her patients being actively involved.

Concerning weekly CBCs. They follow you very closely here at this hospital. I am fortunate to live 5-10 minutes drive away from Denmark's No 1 hospital / university hospital with the best hepatology clinic in the coutry, own labs, research, etc. They are very thorough and extremely friendly, too. So I really feel I'm in good hands.

At the appointment, I will also discuss evtl. use of rescue drugs like Eprex (Procrit), Neupogen, Neumega and AD's. I'd like to have that in place, before starting tx. No unnecessary surprises.

Thanks again, Marcia

[fretboard]

Please chill or not, you are a hero to me and yes we are talking about a plan here, however when it comes to lowering a person's riba, I think that's gotta be an individual thing as they're may be the need for Procrit or something else that may be individualistic.  That's how I feel about it, I know studies show that overall it just makes so much more sense to stick to the SOC.  With that said, they're are gonna be times when that's just not gonna be possible.  Am I still wrong?

"SOC will have to be adjusted for some people" - true but that doesn't mean they are necessarily going to have 50/50 odds now do they?

According to studies this statement is correct, I'm not disagreeing with that at all.  All I'm saying is that if you give it your best shot, no pun intended.  Then you've giving it your best and yes you may have to tx again at a later date, however you would still have a chance of attaining SVR, it would just be reduced statistically speaking.  Once again, I think you had a very unique situation, first of all you were fighting two genotypes 1a & 1b.  Sure I don't have any experience with tx at all and I bet you probably have an immense something or other that is totally foreign to me.  At the risk of being wrong, I will reserve saying more, however when it comes to tx and sticking to it.  It appears that I may have a more open view of the situation.  Well, that's what forums are for, I won't argue my point, but today that is where I stand.  God Bless

[Marcia2202]

I do not know anything about Alinia... I have to read up on it.  What does prescribing 'off label' mean? Could you please elaborate a bit on both of my questions.

Thanks before hand,

Marcia

[Marcia2202]

I just wanted to state that my SOC normally would be according to my weight 57 x14 = 798- My weight actually is going up and down between 56 and 57.

pegasys 180mcg

Riba 800mg

So I have already upped my Riba to the next dose.

Reducing it from 1000mg, for me would be going to normal dose.

At this point, I do not even know if the viral hepatogist will agree to that. Maybe she will not want me to take the 1000mg. Maybe she will want to stick to the SOC.

Big hugs to both of you... Marcia

[jdwithhcv]

Prescribing "off label" means prescribing a medication for a condition or disease other than the one for which it was developed and tested.  For example, Procrit was developed and tested for use with cancer chemo, but it is prescribed off label to patients with Hep C.  This can become an issue (in the US) because some insurance companies will not cover the cost of meds that are prescribed off label.

jd

[jdwithhcv]

I think the point NYGirl is making here is that this tx is not like a 12 step program where if you have a "slip" you can pick yourself up and move forward.  Hep C is a tough virus to beat and once you have it on the run you have to be tenacious.  The proper, consistant dosing of peg and riba is critical to beating the virus.  If you reduce or miss doses the virus can mutate and make itself stronger and it can stop responding to the meds.  So its important to tough it out when the sx are bad, and go for rescue drugs if necessary, rather than reduce the dose and risk strengthening the virus.

[Marcia2202]

Thanks for the explanation.

I have just scanned the Danish drug register and Alinia, Annita (diphenhydramine) is not in the register. So even if I wanted to use it, it is not available.

Marcia

[fretboard]

Thank you, point well taken and understood.  One thing that seems to be missing and it may be of benefit for some ppl to keep in mind is some ppl on this forum have not tx'ed yet and I'm still learning.  Sometimes I think dang, that person must be having a bad day to get so excited and to throw out so much venom.  That's ok as there are no hard feelings on my part.  I know going in that not everyone is gonna agree with how I view things.  Also, when I start tx I have no idea if anything is gonna change with me.  All I know is what I plan on doing, which is to tx.  Oh the 12step analogy was a very good one and the way you explained things "So its important to tough it out when the sx are bad, and go for rescue drugs if necessary, rather than reduce the dose and risk strengthening the virus".  is totally clear and to the point, well thought out as well.
God Bless

[HectorSF]

Looks like you have been doing your homework!

Might I suggest you read the following discussion by leading U.S. Hep docs where they discuss the best treatment for genotype 2 and 3 patients based on the latest studies with type 2 and 3 patients. Including the ACCELERATE trial the largest of the four studies and included 1,469 patients with genotypes 2 and 3.

Chronic Hepatitis C
"Strategies for Optimizing Current Treatment and
the Potential Impact of Emerging Therapies"

http://www.medicalcrossfire.com/onlineLearning/cme/2006/06-LC-27-M-100.pdf

One point it makes is that studies show there is no SVR advantage to taking more than 800 mg of Riba.

…“Having reviewed the data from these four key trials, Dr. Di Bisceglie drew the following
conclusions regarding the treatment of patients with genotypes 2 and 3: “First, 800 mg
of ribavirin a day is sufficient. Second, there are conflicting data on SVR rates when the
treatment duration is less than 24 weeks. Finally, some of the variables that may affect
response include the difference between genotype 2 versus genotype 3; the presence of
hepatic fibrosis or cirrhosis; and viral load.”

…The data show that rapid response predicts the rate of sustained response,” countered
Dr. Shiffman. “If a patient has a rapid response, it does not matter what their degree
of fibrosis is, and it does not matter what their weight is. If a patient has a rapid
response, the SVR rate is 90%. It is critically important to measure that. If I see that, even in a genotype 3 patient, I treat for 24 weeks.” “As Dr. Nelson said in his earlier comments, the RVR should be incorporated in the algorithm,” interjected Dr. Fried.
“Yes,” agreed Dr. Shiffman, adding, “On the flip side, as Dr. Nelson said, if the
patient does not achieve RVR at week 4, then treat longer using the principles that Dr. Nelson outlined.” “By the same token,” remarked Dr. Fried, “I do not believe that there are any good data to suggest longer treatment will improve the sustained response.”
Dr. Shiffman confirmed the point, commenting, “There are no prospective data
looking specifically at nonrapid responders in genotypes 2 and 3 to see whether a longer
duration is useful. That study needs to be done.”

Best of luck  with your treatment!!!
Cheers!
Hector

[Trish77]

fret, frankly you are a better person than me.

That was one of the most vitriolic unfair attack posts I have ever seen, nevermind putting out a very harmful point of view... at a person who never has an unkind thing to say about anyone and has been on an earnest journey to get his questions answered and to help other people along the way.

And to watch the post defended and thanked.

Really...the tone of the posts in the last couple of days, regardless of what people think of the person is a little much to take.

And to watch people not only let this stand ... but to defend it .. really.  Also a little much to take.

fret, you truly are a better person than me.  I was about to post to this and saw your posts in return.  And then I just let it drop.

And no, it's not the riba talking.  

fret, I wish you good luck on your upcoming tx journey and with sorting out all your questions.

Trish

[fretboard]

TY, I agree with you totally.  That was purely unacceptable, but what ya' gonna do?  Some ppl aren't who you think they are, I have personally learned alot on this forum, sure I'm not gonna agree with everything, or everyone who posts.  Nobody is going to, some ppl think that b/c they've been thru tx that they have all the answers.  Well maybe they have experience with SOC that I don't have, but regardless of that I do have an opinion.  My opinion hasn't changed, just cause someone loses it, that only shows other symptoms of an over-reactive personality.  All I'm here for is to express my opinion, learn and get some support when I need it, period.  God Bless

[orleans]

Hey, Alinia is "nitazoxanide" and is likely available there also. If not, it can be purchased over the net at a doable price. If you were here and of moderate income the company that makes it would give it to you, very few questions asked. This is also true of the companies that manufacture INF and RIBA (you can't always believe everything you hear about our health system). Alinia was discussed at lengh back in Nov. after the AASLD Boston conference. I will be starting treatment in a couple of weeks and am tickled to have something I can add to SOC that has a history, few side affects and shows some promise. I have a terrible insurance policy, $10,000 deductable, $1000 decutable on drugs. I was surprised to learn they they would cover this script. My Dr., a published, teaching prof., hepatoligist, was familiar with the drug, is now recruiting folks for the Alinia trails taking place here, and did not hesitate prescribing it. Some DRs are not so easy. Here is a cut and post from earlier. jerry
Alinia
by Andiamo1


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Andiamo1
Male, 68 years
FL
Member since Jun 2007
Mood: Andiamo1 is feeling more relaxed
  



, Nov 02, 2007 09:19AM
Romark Laboratories, a privately-owned biotechnology company, today announced results of a randomized phase II clinical trial showing that 79% of interferon-naïve patients with chronic hepatitis C genotype 4 receiving nitazoxanide plus the standard of care had a sustained virologic response (SVR), or undetectable level of virus, 12 weeks following treatment, compared to 43% of patients receiving the standard of care without nitazoxanide. The patients treated with nitazoxanide also experienced no relapse and no more side effects than patients who received the standard of care. Interim results from this Phase II clinical trial will be presented on Tuesday November 6 in an oral presentation at the 58th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD) in Boston.

"Patients treated with nitazoxanide responded earlier and maintained their responses without relapse after receiving only 36 weeks of treatment with peginterferon and ribavirin," said Dr. Emmet B. Keeffe, Chief of Hepatology at Stanford University School of Medicine. "These data suggest the emergence of a new therapeutic approach for treating hepatitis C. While more study is needed to confirm these results in a broader population of patients, nitazoxanide appears to increase the potency of interferon without increasing toxicity or inducing resistance."

Study Details
This Phase II randomized, controlled trial was conducted at two centers in Egypt and is part of the company's STEALTH C (Studies to Evaluate Alinia for Treatment of Hepatitis C) clinical development program, which is designed to evaluate the safety and efficacy of nitazoxanide tablets in combination with peginterferon or peginterferon and ribavirin (standard of care) in patients with chronic hepatitis C.

In the trial, 96 treatment-naive patients with chronic hepatitis C genotype 4 were randomized into three groups to receive either 48 weeks of standard of care treatment (n=40), 12 weeks of nitazoxanide followed by 36 weeks of nitazoxanide plus peginterferon (a dual regimen, n=28), or 12 weeks of nitazoxanide followed by 36 weeks of nitazoxanide plus standard of care treatment (a triple regimen, n=28). An additional 24 interferon-experienced patients were randomized to receive 12 weeks of nitazoxanide followed by either the dual regimen (n=12) or the triple regimen (n=12) for 36 weeks. Patients received 180 microgram injections of pegylated interferon (Pegasys®) once per week; nitazoxanide was administered as one 500 mg tablet twice daily; and ribavirin was administered as 1,000 or 1,200 mg daily according to weight.

Results
At 12 weeks following the end of treatment, naïve patients who received a triple regimen that included standard of care and nitazoxanide showed a significantly higher SVR (HCV RNA < 10 IU/mL, Abbott m2000) than the group receiving the standard of care regimen (79% vs. 43%, respectively) (p=0.006). The data also suggest a potential for eliminating or reducing the role of ribavirin in treating hepatitis C. Patients treated with a dual regimen of nitazoxanide and peginterferon showed an SVR at week 12 following the end of treatment that was not inferior to standard of care (68% vs. 43%, respectively) (+25%; 95% CI: -1%, +47%). Of 24 treatment-experienced patients, the triple regimen (n=12) resulted in an SVR of 25% at week 12 post- treatment, and the dual regimen group (n=12) had an SVR of 8%.

"Results from this trial validate a new approach to treating HCV that focuses on the interaction between the virus and the cell," said Jean-François Rossignol, M.D., Director of the Romark Institute for Medical Research. "With confirmation provided by this data we are aggressively pursuing development of nitazoxanide and related drugs to treat chronic hepatitis C and other viral diseases."

Nitazoxanide is the first of a new class of small molecule drugs called thiazolides that inhibit replication of a broad range of viruses. The drug was discovered by Dr. Rossignol and was initially developed by Romark and approved for marketing in the United States as the first treatment of cryptosporidiosis. Serendipitously, the development of nitazoxanide for treating cryptosporidiosis led to the discovery of its antiviral properties and ultimately to the discovery of a promising new class of antiviral drugs.

Romark is currently conducting a U.S. Phase II trial with nitazoxanide plus standard of care in patients with hepatitis C genotype 1 who were previously treated with interferon. The Company also plans to initiate a Phase II trial in treatment naïve patients early in 2008.

[derbykid]

I  also think that was very uncalled for, you did not deserved to be called those names. I see people being attacked for saying alot less yet they stick up for that kind of name calling. Says alot for not only the poster but the people thanking her and defending it also. Good luck on your tx.

[Marcia2202]

I thought it was the Riba talking and thus tried to ignore the whole thing and stay neutral.

Fretboard, I think you are wise and well phrased and responded graciously by putting water on the fire, avoiding a possible volcanic eruption! A good trait of character.

Marcia

[Marcia2202]

Thank you Hector, I will get to reading it immediately. I always value you expertise and am glad you joined the discussion.

Marcia

[Marcia2202]

Thank you for all the info... The only problem I would have, is that they do not have it in Denmark. So even if I would be able to get it from elsewhere, I'm not sure my doctors would have the experience to treat with it.

I will study more about it and see, if I want to attempt going into that direction.

Marcia

[Marcia2202]

'Says alot for not only the poster but the people thanking her and defending it also.'

I feel the need to really have to defend myself here! And please do not see this as a criticism, it is just an explanation. I know it is a misunderstanding, as it did look like I was validating her comment. If my post would have appeared 3 minutes earlier, you would have not interpreted that way. So, here we go...

Just to make things clear, I was thanking her for her first post. For her enthusiasm to try to make me not give up and lower my dose, but to go on fighting.

I had not read her second post attacking fretboard at the time, as I was in the middle of writing my reply at the time she posted her attack. If you see it is only 2 minutes apart and it takes quite some time to write a post when you go back and forth copying and pasting, which I had to do, posting Dr. Dieterich's reply to my questions. So really, I was clueless. And I really do not want to be portrayed as someone who supports bad behavior and foul language, as that is SOOO not me.

I only saw it a couple of hours later, as I was doing something else.

And as stated before, once I saw it, I was inclined to ignore this inappropriate behavior, as I saw that fretboard had it well under control. He seems to be a well spoken man with good character, wise and strong enough to defend himself.

My comment in my post directed to them ....

'hugs to both of you' can be interpreted as 'thanks' to fretboard and 'i hope you get better' to the other. I really thought she was going though some kind of riba hell or something. I know how edgy ppl can get sometimes, when they misread something and feel personally attacked. But I just realized that that is not possible, as she is SVR and not on Riba. My bad! It is difficult to remember where everyone is in their stage of tx, when one is new like we are. And I DO SO AGREE that this kind of behavior is absolutely inappropriate.

Hope I was able to make myself understood.

And again, I am not trying to criticize you for having had bad thoughts about my actions, as I understand totally what it looked like.

Hugs,

Marcia

[fretboard]

Thank you, Marcia but I'm really not that big of person.  

"Fretboard, I think you are wise and well phrased and responded graciously by putting water on the fire, avoiding a possible volcanic eruption"!  "A good trait of character"  

When I first posted my response after I read what the "mouthy one" had said I had only read the top part of what she wrote meaning I had only read down until this part.    

NYG:    "Yes that is exactly what I meant.  Death is a much better alternative to reducing riba at any cost.  - Let me ask you are you a grown up"?  

So my response was done totally without having read the other part, that I may add leads me to wonder who is grown up here?    

NYG:     "Please..........be a grown up when posting a question there is just no need to be a complete imbecile and make stupid sarcastic remarks like that. Nobody said anything about having somebody dying - that's just plain straight out moronic to even suggest such a thing".

Now that was just uncalled for, and in my book has to be taken care of.  To be quite honest, NYG owes me an apology and I would have asked sooner, but I thought.  Number 1, that I was dealing with a person who had not only beat down the dragon for 72 weeks, but was also a caring thoughtful person who is a supportive member of this forum.  Excuse me Marcia, but I haven't read everything you posted yet.  I just went back up to complete reading what you wrote Marcia,  and once again I am speaking to a person who I pressumed is above board about everything.  I appreciate that you have taken it upon yourself to try to put this matter to rest.  I actually would have said something way sooner had I thought that you Marcia was bothered by how the "thank you" would have appeared to some.  Quite honestly I didn't take it that way at all.      

So where is NYG?  I hope she is feeling better and I for one do apologize to you NYG for obviously pushing some buttons there, as that was honestly not my intention.  I've been on this forum for a short time compared to some of you, super people.  There are a couple of things that bug me about this forum.  One of the things that bugs me the most is when someone appears too big for their britches.  The other thing is when someone is bordering on giving medical advise, this needs to be watched as well.  
As always, God Bless      

[Marcia2202]

I agree pretty much with everything you are saying. I think that when things like this happen it's for a reason. It's another wake up call for all of us...

We need to be careful with each other and we need to be able to take responsibilities for our actions. You are correct that we also need to be careful about medical advice. I'm going to try 'bump' Eric's post about medical advice, if I can find it. I remember it being on the Social Forum. It's always good to be reminded about these matters.

I wish you all the best... Do you know if and when you are starting treatment, yet?

Marcia

[fretboard]

I don't have a date as of yet, I was nixed from the telaprevir study I was hooked up with b/c of current medications.  I called my hep doctor and made an appt., I see him on July 15th.  I know he wants to do an ultrascan as I've never had one of those, I've just had two biopsy's with the needles, last one was June 2005.  I'll settle for a ultrascan, but I will also push for another regular biopsy.  We will most likely tx right around the same time.  That's good as we can support each other.  I know Izzy is going to be right around the same timeframe as well.  I gotta get back to sleep, it's only 5am here.  God Bless  

[comeagain]

Yeah being polite appering to be wise and well phrased.
Thats whats live really is about isn`t it?
Just learn to be that and it can take you to treamendous succes and popularity in this world.

Honesty is secondary can even but you in risk of being disqualifyed.

Nygirl are in my opinion one of the must purehearted straight up people.
i´d ever came across, she is rare , and have the capacity of being truly supportive.

Of cource she like everybody else got to be reminded if being out of line.

I´m not ashamed of standing up for how I feel about  her.

I prefer a chipped diamond before a perfect piace of coal.

ca
.

[Trinity4]

fret,
You don't know yet what it's all about.  Yes, you've done a lot of reasearch and you have educated yourself but there is no step by step manual to read when you start tx.  I don't care how much you think you know and how much you think you are prepared, it will kick you in the butt!!! You will learn, and you will have opinions as well.  By your postings it doesn't seem you are hesitant to give an opinion either and sometimes things are just better left alone. PERIOD.  Sorry, but I agree with NYGirl in her approach to shock some sense into people sometimes. I PM'd her yesterday and I've about had it with the bull so I'm going to have to take a break and just chill.  I can't be objective anymore!!!  That's my opinion, and I'm sticking to it!
Trinity
Trinity

[fretboard]

No worries, pal.  I've always thought very highly of NYgirl, so I'm not trying to prolong anything here, in fact the sooner this is taken care of the better.  If she was having a bad day or something, I can totally understand as I've had to apologize to people before for similiar behavior.  With that said, to drop down to verbally beating somebody up, whether it's me or someone else, that is unacceptable on any level.  Now I gotta get some sleep, later friend.  God Bless

[Marcia2202]

Thank you Hector,

Unfortunately until this date, there have not been enough individual studies of geno 3.

I read through the very interesting discussion, but kind of got hung up on that it is mostly speaking of geno 2 and 3... and there is not much separation between them. Fair enough, here and again they are pointing out, that 3's are not as easy to treat as 2's.

'Finally, some of the variables that may affect response include the difference between genotype 2 versus genotype 3; the presence of hepatic fibrosis or cirrhosis; and viral load.'

and

'Although broad recommendations are important, it is clear that genotype 3 patients do not respond as well as genotype 2 patients; there is a higher relapse rate in genotype 3 patients. Even among genotype 3 patients, those who have more steatosis, a
higher viral load, or more advanced fibrosis, are more likely to relapse.'

So for me that points more to taking Dr. Dieterich's advice to use 1000mg (if my docs agree and I can take it) and predose. I would like to be a step ahead, so I can 'match up' with the 2's.

Marcia

[fretboard]

Do you agree with her approach to say things that are unacceptable and calling ppl names?  I find that hard to believe, there were and are gonna ppl who have varing opinions, should we all resort to shock some sense into them?  

NYG:     "Please..........be a grown up when posting a question there is just no need to be a complete imbecile and make stupid sarcastic remarks like that. Nobody said anything about having somebody dying - that's just plain straight out moronic to even suggest such a thing".

Well Trinity, your point is well taken and if you want to stand by your friend and just write it off as shocking some sense into ppl then that's your right.  My point is the tx is so highly individualistic and unpredectible that you can not make an across the board prognosis for anyone, case in point.  

"Ask people like Mr. Beagle Bailey who STARTED treatment with thalessemia and severe anemia.  BEFORE the riba and he did transfusion after tranfusion and procrit and epo and did ever single thing he could Not to dos reduce and Still did not attain SVR".

Unfortunately even the case she referenced could have gone either way and proves my opinion that tx is individualistic and highly unpredictable.  Yes he stuck it out and unfortunately still didn't reach SVR.  That's a shame, but to me I still have the same opinion.  I will continue learning, but when someone comes out and attacks somebody else on this forum just b/c they have a different opinion, that's totally uncalled for.  If it's so right on, then my feeling is she would come back on here and re-itterate what she said and back it up.  It doesn't matter how many friends come on here to back her up, the bottom line is she needs to check herself before she wrecks herself.  

This is what Trish had to say about it:  "That was one of the most vitriolic unfair attack posts I have ever seen, nevermind putting out a very harmful point of view... at a person who never has an unkind thing to say about anyone and has been on an earnest journey to get his questions answered and to help other people along the way".

Good luck to you Trinity4.  God Bless

[Trish77]

This should be said directly to you.  My issue is with how you said what you said and then I have concerns about some of what you said.

I have a great deal of respect for what you have accomplished with your 72 weeks of treatment and everything you've gone through.  I've said as much to you publicly and privately.  I think you post very valuable information and I happen to think you're one of the most valuable people here... for the ongoing support you give and for you sharing your experiences with people that help them get through treatment better.

The things you said in your post in this thread .. if fret hadn't asked you that question in his way, I would have put it to you in my own way myself.

To your comment:  "DO NOT DOSE REDUCE.  go with one and stay with it for the duration.............no matter what.  Take the Procrit if you need it but don't think about reducing."

No matter what?  Are you kidding me?  That is one of the most irresponsible pieces of advice I have ever read on these boards.  Frankly I was alarmed.  It wouldn't take long to scan through posts on a daily basis to find people struggling with dosage reduction decisions in light of their overall health pictures.  And you have only ONE thing to say to that "do not dose reduce ... no matter what".  Fret's question was entirely apropos frankly ... really he's asking to what extremes do you take such advice?  Right to the grave, Deb?  And if not... then please do NOT say things like "do not dose reduce .. no matter what".  Qualify it .. with "unless your health is at risk in other ways".  But you did NOT say that.  And frankly, I think his questions was justified and rightly incredulous in it's nature.  

By your advice, there are NO exceptions.  And that's just bloody dangerous to me to be putting out advice like that.  I think what you did was phenomenal and you are incredibly resilient.  However, your treatment experience is not the same as any number of people that I could count off who have posted in the last week who are struggling with dosage reduction or stoppage in view of their health situation.  (I do not count me as one of them...am dealing with it but do NOT have the health issues the ones I'm thinking of do.)

Then your next comment:  "Considering there are plenty enough of us in here who've had much much more dramatic hemo reductions and anemia than the normal person is EVER likely to NEARLY experience - I will tell you this one thing........how hard you fight for the SVR is a big part of whether or not you get it at all.  It is a TRICKY thing to attain - and taking the easy way out usually makes it perfectly clear that it will not happen. "

Every. Time. I. Read. That. I. See. Red.  

Taking the easy way out???  You think that people taking a dosage reduction.....are taking the easy way out???  Who the F*** are you ... to be making such a judgment on people in those situations is what I want to say to you.  Every, frigging, week .. there are posts from people who DESPERATELY want to achieve SVR and are agonizing, absolutely agonizing over a decision on whether to reduce their dosages to prevent harm in other ways to their  health .. they find themselves with other health complications that MUST be taken into account over the course of their treatment.  HCV is NOT the only disease or health situation that impacts quality of life, Deb.  What hell good is it to cure yourself of HCV and be left worse off than you were before?  That is NOT your call to make, Deb.  And to infer that it is taking the easy way out to dosage reduce when someone is considering their overall health picture makes me so incredibly angry.  

I'm a big advocate of shock and awe...hit it hard and keep at it as long as you can.  I'm totally with you there, Deb.  Totally.  And to do everything you can to avoid a dosage reduction, to tough out your treatment in whatever way possible....yep...I'm with you there.  But a blind devotion to the dosage is just bloody reckless and foolish to the exclusion of everything else that may be going on with a person.

Frankly ... I think people who opt for dosage reduction are bloody brave.  They have made a decision to risk their SVR outcome for their overall health picture and that is NOT an "easy way out" decision.  Every frigging day I see someone on here struggling with that....and they need our support in making the decision they feel is RIGHT for them. They have a really tough choice to make, one which I keep escaping week after week after week, because I am in a trial with it's parameters more than because my situation is precarious compared to others.  I only have a very wee taste of what that is like to have to struggle with that decision.  And I have a great deal of compassion and respect for those who are going through that.  

So maybe you can clarify .. under what circumstances DO you consider dosage reduction acceptable, Deb?  I didn't see any.  And in light of that, I think fret's question made perfect sense and I would have and am asking you the same myself.

As for WHAT you said to fret and HOW you said it.....whewwwwwwwwwwwwww.  It sure upset me ... stated my opinion on that and I'll leave it.

Anyway.  I take exception to THIS post and the point of view stated in THIS post.

NOT to you as a person or to your overall contributions here.  You are an amazing woman and have so much to offer here and have helped very many people.  You are one of the stars here, to me.  You are a combo kid who made the big time.. SVR.  And I continue to have a great deal of respect for you.  (Not that it matters what *I* think....I simply wanted to make clear where I'm at overall.)

I just really really really could not in good conscience let statements such as "do not dose reduce .. no matter what" and "taking the easy way out" go unchallenged because I DO think that is a very harmful point of view.

I'm too wordy .. as always...just could not find a way to wrap all my emotions up in a ball of words.  

Trish

[fretboard]

Before you come on here and stick up for what nygirl said, keep this in mind as it was posted by Trish.  My point is, it was wrong and if you're gonna defend it, be sure you know what you're saying.  In my own defense about my opinion, I said it, I meant it and I'm here to represent it!!  What's more important as well is what Marcia intends to do, so if you totally support nygirl, go ahead.  At first ppl just stayed out of it, maybe that would be the best choice.      

"And to watch the post defended and thanked".

"Really...the tone of the posts in the last couple of days, regardless of what people think of the person is a little much to take".

"And to watch people not only let this stand ... but to defend it .. really.  Also a little much to take".   God Bless

[Andiamo1]

I am not posting to defend NYGIRL, but to say that I know her personally and she is a fine, caring person.  

Again, this is not a defense of being nasty, just a description of a complete person that perhaps was too aggressive in this instance for reasons known only to her and maybe not even known to her.

Eric

[susan400]

I wish you all the best.  I certainly want you to clear on your first and only try.  You've done your research well and I can see that you are going into this with a well educated mind.  Expect the best, be prepared for waiting for results and not surprised by the unexpected.  That's the best that I can offer you from my personal experience with this whole TX world.

Susan400

[Trish77]

And ... sigh .. I want to say that I was in the wrong to expect anything of other people, to speak up in any regard.  I have the right to my own opinion and I must follow my own conscience and I respect the right of others to do the same for their own reasons ...and my expectations were off, in this regard.

I have said what I felt I MUST say and moving on.

Eric...thanks for posting that.  This was not meant to be a personal issue.  

Trish

[Marcia2202]

Thanks so much for the sound advice. I think I will follow it, except for.... expect the best....  

I am more the type of person to go for .... Hope for the best, but expect the worst, and you will be extremely happy if it isn't that bad after all. :-)

Marcia

[desrt]

Is there a reason to believe you will have a problem with riba absorption? Going off-label may not be the best route for the tx-naive. Besides skewing your test results down the line in comparison to studies and others' results, we really don't 100% understand the workings of riba. We know it's an RNA mutagen. Do you want to create new and exotic quasi-species with no IFN around to finish them off? FLGuy, NYGirl, cruelworld, and others had reasons for going off-label - previous failed tx or slow response. There are good reasons why these drugs are dosed at the levels they are and we are still learning what the long term effects of SOC really are.
Good luck.

[jmjm530]

As often happens in written communication on the internet, communication doesn't always communicate. While I understand what Fret wrote in response to what NYGirl initially said, I don't think that's what she meant, i.e. that people should die treating rather than reduce riba. Let's be fair.  So Fret's response was a bit of an overstatement that obviously pushed some buttons. I'm sure the two of them will work this out as they both seem like nice folks. My own views fall somewhere inbetween on dose reduction and certainly the counsel of an experienced hepatologist is of critical  importance, who not only will take into account the total medical history but hopefully how much liver damage the person has -- i.e. the more damage the harder one might reasonable fight.

Marcia, back to your questions -- again I admire all your research and questions on treatment and please don't take this the wrong way -- but have you spent the same amount of time researching whether or not you should treat in the first place with the current drugs?

I understand you haven't seen a hepatologist yet, not had a biopsy, but from the tenor of your questions it almost seems that your mind is made up to treat, regardless of liver damage or lack of liver damage. That's fine as long as you've spent some time weighing the relative merits of treating versus not with the current drugs. As you know, there's some potentially very exciting stuff in the pipeline -- Telaprevir for example -- that may make a lot of sense for those that have time to wait.

All the best,

-- Jim

[fretboard]

I don't have anythiing, but respect for nygirl.  I've said that before as she is one of my hero's, still.  I just think she acted inappropriately, whether she is ok with the way she responded is yet to be seen.  Oh yes and I did apologize to her as I re-read my question, I could easily see that I pushed her buttons.  For that, I apoligized.    Anyways, I am moving onward and my hope is that everyone else will do likewise.  As always, God Bless.  

[Marcia2202]

Thank you for your concern and well wishing.

I do NOT intend to use Alinia. I did not know about it, until this thread.

My concern is a treatment tailored to me and my genotype, with Pegasys and Copegus.

The SOC for genotype 3 has been mixed into the same pot as genotype 2 and in the last few years the medical profession is becoming more and more aware of, that they should take a different approach to treating geno 3.

I have read that some suggest to predose and heighten the riba dose.

Taking this in consideration, I asked Dr. Dieterich, MD,  an expert in HCV, who is a Professor at Mt. Sinai, how he would treat me.

He suggested Pegasys 180mcg and 1000mg Riba.

He also stated "There is no data yet on predosing with RBV, but I am getting more convinced of it and would do it myself if I had to start again."

He is speaking out of experience of treating patients and having been an HCV patient himself.

So I think that it is sound advise he gave me and I will ask my hepatologist what she thinks about this. In the end it will still be my doctor's decision, how she is comfortable treating me.

Best wishes,

Marcia

[jmjm530]

FWIW NYGirl and I have gone at it even worse, but hopefully we still have respect for each other, I certainly do for her. I'm sure she's more than OK with the way you responded but she rarely posts on weekends so probably hasn't seen much of this. Just so you know, given what preceded it, I don't fault your initial post at all and might have done similar in the past  -- just that sometimes things get out of hand when you're not face to face and things start snowballing.

Be well,

-- Jim

[Marcia2202]

I am not taking it wrong and thank you for pointing that out to me. It is always good to get all kinds of input. And I appreciate all the advice I can get.

Yes, I have turned this around in my head again and again and I have also discussed it with my husband and children. And yes, my mind is set, regardless of liver damage. Unless of course the biopsy comes back so bad, that I am not allowed to treat. But I doubt that this is the case, as two ultrasound scans indicated no abnormalities at all.

Even though I so far have only seen one hepatologist and not the viral hepatologist, who is going to treat me... and have not had a biopsy, yet. (at the hospital they suggest treating, even without a biopsy. The Danes routinely go ahead treating geno 2 and 3, as they expect high success rates. Of course providing the person is fit and able to treat)

I have been weighing out the facts. I will name them below

1. I have had this for around 25 years, so even if I haven't had a biopsy, I know the disease progresses.

2. With every year I wait, I will have about 1-2% less chance to SVR (this wil maybe       change with the new drugs)

3. I have been suffering of chronic fatigue and some other symptoms everyday for almost 4 months now. That really is not a good quality of life. I do not want to drag myself around like this for the next 2 years waiting for Telaprevir or something else.

4. This is a good time in my life to treat. We had been planning to move from Denmark soon, partially to West Africa. So we are stalling our plans for the moment, as I definitely prefer treating here.

5. According to studies the
    best candidate for SVR is :     female, under 40, Caucasian
    least good canditate for SVR: male   , over 40  , African American
    I am                                      female, over 40  , Caucasian / African American
    So it puts me somewhere in between, as I don't know which genes I have inherited.

6. I really want to get rid of this virus as soon as possible.

7. I listen very much to my intuition, and it feels right to go ahead and do it now.

God bless,

Marcia

[comeagain]

Got a good feeling for your  treating approach good luck.
And may the good God bless you ever so much.

Your Swedish friend!
ca

ps also belive strongly in following intuition.

[Marcia2202]

Thank you so much... I hope you are doing well these days and that tx is treating you well.

God bless,


Your Swedish friend Marcia

[jmjm530]

Yes, you've obviously given this lots of thought, and no one can argue with reasons #4,  #6 and #7, which are very personal and very important.

A few comments on some of the others, not to change your mind, but just as points of information/opinion.

I've seen the 1-% figure used a lot recently, but if it applies, it only applies to SOC. So even if true, any decline in SVR percentage on SOC would potentially be more than made up for in spades. As for the fatigue, while some report less fatigue after SVR, at least an equal group report more fatigue. Many report about the same fatigue levels as pre-treatment, which is my experience. Fatigue is one of the most common complaints doctors hear, and while its def appears to be associated with HCV, it's also associated with so many other things that have nothing to do with HCV. Didn't realize you were half African American. Have you researched what Geno 3 SVR rates are for African Americans and what they might be for someone half Afro American, although the latter might be part guesswork. At least with geno 1's, SVR rates for African Americans is not the same as for Caucasians or Asians.

Hopefully you don't feel I'm trying to push you in a particular direction -- even though I do have a bias to wait if little damage -- but since you're obiously a thinker/information gatherer, I felt you might appreciate any and  all info.

All the best,

-- Jim

[jmjm530]

Beginning of  third paragraph should have read:

I've seen the 1-% figure used a lot recently, but if it applies, it only applies to SOC. So even if true, any decline in SVR percentage on SOC would potentially be more than made up for in spades, if one for example waited and then treated with a newer PI combo showing significantly better results than SOC.

[Marcia2202]

Even though I will not postpone treatment and I have made up my mind...

Jim, don't worry, I do in no way feel your pushing me at all. I love discussions, especially if they are about an important decision to take in life.

(I've only been to the US once, but my Dad was from Baltimore. I grew up in France, Germany and Indonesia and then moved to Denmark 10 yrs ago. I did not grow up speaking English at home, so that explains my lack of vocab etc. in the English language. I did go to an international high school in Jakarta for 3 years and graduated with an American High School Diploma.)

I have not seen studies referring to African American geno 3 in particular, let alone of mixed race. I just know that in general Afr. Am. have a lower success rate. They blame it on genetic factors. Logically I could have inherited either the genes of my mom or my dad regarding this aspect. Is there a dominant factor or a mix??? Who knows, I think this genetic stuff becomes too complicated.

And I really hope this fatigue will subside one day... I cannot spend the rest of my life chained to my bed... :-)

I refuse to think that I will stay this way. I didn't feel like this before the end of February. In the beginning of February I was still tracking in Mali and we made it all the way to Timbuktu and back, with our car breaking down in the middle of nowhere, changing tires and the whole thing. No AC in the car in the African heat and dust... I had the energy of a 20 year old. So maybe it will decide to bugger off after treatment, just as sudden as it came...

And the little fevers creeping up on me in the afternoons... I want them to go too.

Marcia

[jmjm530]

Thought you liked all kinds of discussion! As to what "genes" you have, a two and four week PCR will give you a good heads up. Discuss some type of stop rule at week 4 with your hepatologist, as I believe the majority of geno 3's who SVR are UND by week 4, but I really know more about geno 1's. As to the fatigue and fevers that seem to have started at the end of February -- I'm sure you've explored the possiblity that they were caused by something picked up in your African Trek.

-- JIm

[Marcia2202]

Yes, my GP explored all possibilities. The only thing he found wrong was that I tested positive for hep c. I'm pretty much confident that it is the hep c. It IS a virus and it doesn't astonish me that one can have these little temperatures sneak up.

I think that SVR is 90% in the pocket for g 3, if UND by week 4, even better if UND at week 2. One can even try to do 16 weeks with this one, but they advise that it is safer (in terms of SVR)  to do 24 weeks, as the rate of relapse was 13% vs 5%.

We go to Mali every year and I have been to Timbuktu twice. I never even get as much as a bout of diarrhea there. Even living 20 years in Indonesia I might have had diarrhea only three times.

Am going back to the soccer game ... Netherlands vs Russia... They are playing a beautiful game....

Marcia