Shortend Treatment Issue - OUT OF CONTROL!!!!!!!!!!

[nygirl7]

OK i just read "my husband was UND at week 4 why does he have to do 48 weeks of treatment"

Well - I'll tell you why.........it is the current standard of care for this disease at present time.

This whole if someone clears at week 4 they can do shorter treatment is OUT OF CONTROL.

It is NOT SOC to do less.  It is NOT FDA approved.

People are going about this because of one study?!  For every single study done you KNOW you can find one to contradict it, easily!

If there is only a 50/50 chance at SVR being a geno 1 doing 48 weeks - why would the doctor want so CHANCE doing any less?  Because it is ADVISED on the INTERNET in a FORUM?

Some people need to understand that some of the people advising that this is just fine and dandy DOUBLE DOSED their medications and did LONGER than protocol and are now saying as if they are doctors  "sure it's no big deal here are the facts"...well THEY ARE NOT DOCTORS.

DO WHAT THE DOCTOR ADVISES AND NOT WHAT YOU READ ON AN INTERNET FORUM - NOBODY CAN REPLACE YOUR DOCTOR OR WHAT THE STANDARD OF CARE IS.

THE REST IS ABSURD AND PERSONALLY I FEEL IT NECESSARY NOW AT THIS TIME TO SPEAK UP ABOUT IT.

IF YOU WANT TO DO HALF OF TREATMENT BECAUSE OF ONE STUDY IT'S YOUR PEROGATIVE I SUPPOSE BUT...........WHEN YOU START SEEING THE RELAPSES COME AND THEN WONDER WHY - i'M SURE THE DOCTOR WILL TELL YOU.

GENO 1 = 48 WEEKS
GENO 2 = 24 WEEKS

THAT IS THE CURRENT STANDARD OF CARE IN THIS COUNTRY.

We've ALL had nauseau and problems it is PART OF THE TREATMENT.

BUT CERTAINLY DO NOT BASE SUCH A LIFE AND DEATH SORT OF QUESTION ON PEOPLES OPINIONS ON THE INTERNET - ASK YOUR DOCTOR AND DO WHAT HE SAYS!!!!!!!!!!!!!!!!!!!!!!!!!!

I am really really worried that this is so far out of control and SO much damage has been done that it's too late.  

But I feel it's my duty to at least speak up on this.  I know full well I'll be slammed for it. People WANT to do less treatment so believing anything at all is a MUCH easier way to go.

But........it does not mean it's the BEST.

[mikesimon]

I know where you're coming from and I agree with a lot of what you said. But, the fact that shortened TX is not FDA or SOC isn't really persuasive. Procrit/Epogen are not FDA considered SOC but we want it and believe we need it. 72 weeks is not SOC but I did longer in 2003 - 2004 and I believe that's why I achieved SVR. I personally don't think I have any post TX issues but some people believe that they do and believe that the TX is very dangerous and thus they take the conservative route, drug wise that is. Anyone who has drifted into cirrhosis or end stage knows this disease is to be taken seriously but we're going to have speculation about fibrosis progression and the likelihood of cirrhosis etc and advise on that basis. I think that if anyone believes that anyone here has the answer to questions about anything other than testing, side effects, studies and protocols then they are sorely mistaken. I agree that I'd rather enhance my chance of success that shorten treatment but I don't think I had a choice. If people believe that they have a choice than that's their decision. I personally don't have a lot of faith in the judgment of some of the doctors I have read about here so I believe it's really up to us to figure out what gives us the best shot at getting well. Mike

[jboyhk]

I wonder who will people blame when they relapse after shortened period and become more difficult to treat in the future?

[zazza]

To prolong treatment because of one study seems reasonable to me, but to shorten it I would want SOC altered before I would venture to do that. I agree with you, nygirl, this issue is out of control.

[Fighting-this-Together]

I am going to assume that you are refrencing my post. Maybe I should of said "hypothetical" question. Some how I find your tangent a little personal. I did not say he was UND @ 4 weeks. He has not even done #4. I said "what if"?  I do not control the length of his treatment. That is between him and his Dr.. Nor would I discourage him from following the SOC!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Prior to #3 he had to take his leave from work.Walking 8 miles a day is not an option while tx.  

It really was JUST a Question!

Thanks for your concern

[Tallahassee]

Well said, NY!!!!!!!!!!!!!!!!!!!!!!

[nygirl7]

Please don't take it personally at ALL and I'm very sorry if I made it seem that way.  I just reached a cracking point reading all of this and worrying how many people are going to relapse because one little study certainly has been discussed over and over and it seems people are taking it totally to heart - before doctors are.

Doctors and standards of care and protocols are crucial if we are to succeed. Erring on the side of caution with this disease (which comes back sometimes easily when we've done all we can to fight it) is something people need to do - even though the easier way is often the way you want to go.

I'm sorry if it seemed personal against you - it truly was not and I apologize.  It just hurt my heart to see people wondering why their doctor might not agree with stopping early....when I know from experience how hard it really is NOT to relapse.

[Fighting-this-Together]

I totally understand your point. Sorry that I took it a little personal. I admire and respect your fight, and everyone elses. Trust me when I say I was only wishing it could be shorter. It hurts to see someone you love and care about fell like s#%$ day in and day out. I also know how much it would hurt if he had to do it 2x. Rest assured that he says he is doing the 48 to make sure that he has killed every little virus in there.

[orphanedhawk]

  What I see happening is the desire for  tx that fits a simple formula. It doesn't exist, not at this time.  
   Nobody knows who will be fine doing shortened tx and who won't.Nobody knows who will attain SVR and who won't.   Being UND at 4 weeks is no quarentee of anything.    It is a statistical advantage.
   I know this is hard, but really the decisions, to tx or not, how long etc. are personal ones.      

[crazycanuck]

as per most medications, i was under the impression you need to finish the amount the dr.s perscribed or whatever they are treating you for may become resistant to the meds. . just my opinion.  

[tomofficial]

well said!

[jmjm530]

NY: Some people need to understand that some of the people advising that this is just fine and dandy DOUBLE DOSED their medications and did LONGER than protocol and are now saying as if they are doctors "sure it's no big deal here are the facts"...well THEY ARE NOT DOCTORS.
------------------------------
NY,

I assume this is addressed in part to me -- as I double dosed (2 weeks), treated for 54 weeks and (you left this part out) did high dose ribavirin for three weeks -- AND have stated that shortened treatment is a reasonable option for those with little or no liver damage who are non-detectible at week 4 and have a low pre-treatment viral load.

The inference -- intended or not -- that I somehow am guilty of  "do what I say, not what I do". This inference is false and does not hold up to the facts and frankly -- since we've had this discussion before -- I'm starting to wonder why you and at least one other person keeps bringing this up with what I consider to be bordering on ad hominem attacks.

What I have stated is that the shorter course is a reasonable option for those with LITTLE OR NO liver damage who have a LOW pre-treatment viral load  and who are NON-DETECTIBLE at week 4.

I -- as in me,  had SIGNIFICANT (stage 3) liver damage, had a HIGH pre-treatment viral load and was DETECTIBLE  at week 4.

See the similarities. LOL.
---------------------------------------NY: Some people need to understand that some of the people advising that this is just fine and dandy DOUBLE DOSED their medications and did LONGER than protocol and are now saying as if they are doctors "sure it's no big deal here are the facts"...well THEY ARE NOT DOCTORS.
------------------------------
NY,

I assume this is addressed in part to me -- as I double dosed (2 weeks), treated for 54 weeks and (you left this part out) did high dose ribavirin for three weeks -- AND have stated that shortened treatment is a reasonable option for those with little or no liver damage who are non-detectible at week 4 and have a low pre-treatment viral load.

The inference -- intended or not -- that I somehow am guilty of  "do what I say, not what I do". This inference is false and does not hold up to the facts and frankly -- since we've had this discussion before -- I'm starting to wonder why you and at least one other person keeps bringing this up with what I consider to be bordering on ad hominem attacks.

What I have stated is that the shorter course is a reasonable option for those with LITTLE OR NO liver damage who have a LOW pre-treatment viral load  and who are NON-DETECTIBLE at week 4.

I -- as in me,  had SIGNIFICANT (stage 3) liver damage, had a HIGH pre-treatment viral load and was DETECTIBLE  at week 4.

See the similarities. LOL.


Cont...

[jmjm530]

As to these being only studies as opposed to SOC, I agree with Mike that it really isn't a persuasive argument. In fact, using this logic, I might argue that you're being a hypocrite yourself. How many times have you told people to extend treatment to 72 weeks based on STUDY DATA that you posted and your doc's recommendation which btw aren't SOC either.

Just to be clear, I don't advocate shorter or longer treatments. What I do believe in is INDIVIDUALIZED treatment, depending on individualized patient profiles. I've therefore mentioned the shorter options in certain subgroups such as geno 1's with low pre-tx viral load, little liver damage, and who were non-detectible at week 4. I've also equally mentioned extended treatment options for certain subgroups such as geno 1's who are detectible at week 12 but non-detectible at week 24. In fact, I believe I mentioned the extended treatment option to you long before you saw Dr. J., who btw I also recommended to you.

Back to the study versus SOC point again. If you go to the Clinical Options Site you'll finding teaching modules where clinicians are recommending INDIVIDUALIZED treatment -- either shorter or longer -- for certain patient subgroups. So it's not just study data, it's good clinicians translating this study data into clinical practice.

Lastly -- unlike some here -- I have never told anyone to do shorter or longer treatments. Simply pointed out that based on their stats that a shorter or longer treatment is a reasonable option to discuss with their doctor. And, then, like many of us, I gave my opinion as to what I might do in a similar case and why.


JBoy,

As to "who will people blame" if they relapse with shorter treatment". Let's turn this around and ask who will (let's say someone with little or no liver damage) blame if they do extended treatment and end up with permanent side effects? Should they blame the advocates of extended treatment or those who advocate that everyone should treat regardless of liver damage?

Hopefully, both have done their homework, made the best decisions for themselves and therefore not blame anyone. These are all very individualized and personal decisions and hopefully the dialogues here are of some help to those trying to make decisions. All I ask is that words don't be put into people's mouths.

NY,

Where I think we both agree is that a lot of what gets posted here seems to be either posted as, or taken as fact. I truly hope that everyone double checks all the information they read here with both their doctors and independent materials.

All the best,

-- Jim

[jmjm530]

I also think it important for future discussions to correct your repeated assertion that this is "one-study" logic. Check out Valtod's post here:
http://www.medhelp.org/forums/Hepatitis/messages/46062.html for two studies. I believe you'll also find others if you check out the Clinical Options site, not to mention the shorter course studies for geno 2's and 3's. BTW I am skeptical of Valtod's formula -- but just am referring you to the thread for study data.

[willows]

This is not even an issue of this forum, the length of tx, I mean.  I have a friend who had low vl, little damage and when she cleared at 24 weeks, her UCLA doc said she could chose to quit if she wanted.  So here we have a doc adding his opinions? to the shortenend tx time.  My friend tried to be brave and do the 48, but quit at about 32 and is still UND.  This was last year, so there is still much of the story to be told yet, but this was a real doctor, offering up shortened tx time.  I'm pretty sure that shortened tx time is not going to go away, in fact, it will be discussed and studied along with different combos, etc.  Why not?  It would be foolish not to have open and encompassing research, I for one am darn glad of it.

Everything we discuss here is empirical, but after a while, anyone can begin to see trends forming.  But the doc has the power of the prescription and most of us seem like we keep our posts pretty balanced.  

There is a big push to shorten tx for a percentage of patients who respond early with low vl.  Teleprevir may still be in trials, but that does not negate the results from two trials.  When I am accused of cheerleading for one drug or another, I always remember that there are facts out there that are very positive.  The other side of the coin to my cheerleading must be looked at, granted, but it would be unfair to devalue what information is out there.  

Where I live, in my head, being unable to do IFN again by itself, I got a lot of hope invested in the new treatments, but I am not stupid.  I understand the risks too.   And it is interesting to toss around the idea of shortened tx along with discussing the new drugs.  IFN was a new drug once.  

Willow

[cruelworld]

it is only natural for all of us to dream about shorter treatments, and i personally dream about a longer treatment that would be more "for sure". i think is is good for all of us to imagine and maybe even realize "off label" dosages and timetables. each of us has different priorities for treatment quality of life. i think this forum has a majority of conservatives concerning treatment. because of this im not afraid to suggest an "outside of the box" idea. most every one will chime in with the real truth to balance a left field idea. i hate to see conflict over fresh ideas, conventional or not.  on the other hand, an occasional fistfight does break the monotany! keep up the good work!

[GoofyDad]

Why is the gals are always opposed to the 'short duration'. That's been an unfortunate recurring theme in my life.  

Treatment duration is a complex issue. The more refined it becomes, the better for all. I think we are seeing more and more how watching early progress gives a clearer view of a patient's chances of clearing. Vertex testing indictaes they are very interested in early viral declines. I believe that data would be of value in SOC as well. To disregard early results and the effect they should have on treatment durations doesn't make sense to me.

Sign me,
An SVR who's treatment was cut in half based on 4 weeks results.

[copyman]

way to go jim, all great points. i will say it again but will not scream like NYG did. 1A, low viral load, little or NO damage, normal body weight, UNDE at 4 weeks and all the way to 24 weeks. STOP at 24 weeks and you will have the same chance of SVR as 48 weeks but without many of the "possible" side effects. this new protocol is coming to a doctor near you real soon! i would say within the next year maybe 2 that doctors will be making drastic changes in tx protocol's. this current combo is just to dangerous. just my opinion of course.

[mikesimon]

I think Pegylated interferon and Ribavirin are really good for you. I recommend that my patients stay on them as long as their insurance companies will pay. It just makes good sense.
Dr. Mike

[copyman]

Mike LOL. way to funny, but somewhat true. makes you wonder just how much interest docs have in these companies........

[nygirl7]

Well here it goes.

What you don't understand is just prior to THIS point of view someone on this board was COMPLETELY boarded on to the other side - double up your meds, take as much riba as you can, stay on as long as you can, kill every virus and improve your chances........and this too was all supported by facts construed into the way it was preached.

And I'm sick of new people taking things as if they are gospel on here that are not.

It's wrong. Just WRONG and some people don't yet know and haven't seen what happens as a result.

It has to stop.  

DON'T LISTEN TO ANYONE EXCEPT YOUR DOCTOR.  ASK HIS OPINION. ASK HIM TO 'READ THE STUDY' AND THEN DECIDE.

It's great to discuss things and read studies but other than that - people need to talk to the doctor.

I listened and went against my doctor and then when I got there to the specialist was told I was out of my mind insane listening to the advice I got on the internet.

It's up to you. Only you guys can use the common sense that God gave you.

And Copyman I AM yelling.  It's WRONG. NOBODY here has a PHD attached to their name and the facts are the facts.

And if anyone thinks I"m wrong for saying something - I'm sorry, too bad - but I've been here for two years and seen this happen over and over and over and change and change and change - and learned better.

ASK YOUR DOCTOR, DONT ASK ONLY THE INTERNET.

[spcecst2]

Someone wake up on the wrong side of the rock this morning?

[copyman]

hey NYG, i want you to know i respect what you say very much and do not want to fight with you. BUT i also want you to know that since i found out i had this god awful disease last june i have spent a minimum of 4 hrs a day EVERY DAY researching everything i could about HCV! i felt i had no choice, this is my life i was dealing with and i want to see my kid graduate HS. i travel far to see the best hepatologists and add their opinions to my arsenal. i only want to be prepared when i do battle against this dragon. my opinions are only meant to help someone and that means even if i have to tell them to tx to 72 weeks because they were not unde until late. i have suggested to some from other forums to extend. so i'm not gung ho on only 24 weeks for 1A's,  ONLY when they meet the criteria i posted above. and by the way i do not meet that criteria, my VL has averaged around 8 million with being the lowest 3.5 mil and highest 20 mil. my plan is to wait for the better drugs but i'm feeling some of the "extra hepatic" symptoms creeping up on me so i may not have a choice and have to start sooner. best of luck to you.

PS, as far as some of us not being doctors i feel there is MORE knowledge about HCV on this site then 90% of the doctors treating HCV. you have to agree on this. you have been here 2 years and have heard all the stories of the lack of knowledge most docs have about HCV. you will find very few docs that keep up to date with the latest protocols. and you should know better then anyone that it cost you $600 cash to talk to a doc that keeps up with it.

[FlGuy]

I didn't realize that you were originally on the 48-week plan, shortened.  I thought it was the 24 week plan, lengthened by a couple.  The old risk/reward discussion from yore makes even more sense to me now. As I was bellying up to the bar for 27 a few days ago the devil played havoc in my mind.  Nothing new, we're not strangers.  But I was thing of similarities with an other who have gotten off cheap and lucky.  But, I continue on - unfazed by the onging temptation. All is well for me - it's all down hill.  I'm glad you are cured and still around.  You affected by that traffic mess out there? If so, make sure you use the bathroon before you drive.  Might not be so lucky next time.

[B-bunch]

I agree with the NYgirl.

You guys can pontificate about the length of treatment all you want BUT,the fact is nobody really knows the answer about HepC yet. It's too new. Doctors are just now finding how the virus eats away at other organs even while the liver damage is scant and the viral load is low. So stand on your soapboxes all you want just show me a doctor who knows it all about this virus. I thought you guys knew that.

I had low viral load, a stage-1 grade-2 biopsy, UND at wk4 straight thru to wk24,then my doc stopped treatment thinking I was clear. I was UND for 6 months after end of treatment. Then the last week of the 6 month followup marker the virus came back with a vengence.

Now I have to re-treat just because my doctor thought he was right. I wanted to go for the 48 but he said no.

NOW I HAVE TO RE-TREAT!!! I have switched doctors now to a better doc.

[Forseegood]

for a long time now I've thought this disease and it's treatments is one big ***@**** one princible working for one person, and not the other...some big soup having to do with genetics, individual physiology and metabolism, etc etc...for the most part, people who have SVRed, tell me to treat soc in conventional timeframes, those who haven't SVRed, tell me to wait for the new drugs or trials cause they feel cheated devoting so much of their life only to not SVR...so thinking on these subjects can have a lot to do with simple human nature as well...and the doctors and researchers vary in their opinions almost as much as we do here...on many of these points anyway...

but I am glad for this board and others like it cause we can see a cross-section or overview that many people who aren't here just can't see...like was said, they are only just beginning to find out about this disease and it's treatments...it's still pretty new on the horizon, considering...hopefully, in the next few years they'll know scads more for everyone of us still suffering...

[B-bunch]

Forgot to tell you... I'm genotype 1a. I've had the virus since 1981.

Best to all and good luck to all.
Sharon

[dperry10]

I have been seeing alot of posts lately as well, of people adjusting their tx rx , on their own, and to me it scary, when seeing someone stopped Riba all together, but continueing just on interferon.    After tx 14 years ago on just Interferon, and it coming back, I really believe the Riba has gotten me to where I am now.   I am currently on week 20(fri shot) / 48, and was UND <50 at week 13.  Genotype 1a.    I just had another PCR today with my CBC, but I think I messed up and should have waited on the PCR till Friday before my shot.     Oh well..  The doctor only ordered the Heptimax to make me happy.. LOL  the first was not.    

I know you are feeling alot of frustration right now.   I totally understand, if what I read was true that you relapsed ?  I guess I missed that post.  I am so sorry to hear that. Or maybe my mind is is going....and I forgot.    I felt the same frustration last year, finding out it was back with a vengence.    But hopefully this time around it will be gone for good.. We can all only hope.    But I do have some good news.  The Tx rx seem to have disolved a mass they found last year on my r breast.    Thats the 2nd best news I have had this year, except for the UND.   My doctor is very excited over the progress and does not want to adjust meds or stop treatment, although my HGB continues to drop.   Now they are talking transfusion, and that is what is scary to me too, since that is how I got this to begin with.    But things are tested better now than in 83..   Unless something new comes up of course.  But I cannot get rid of the uneasy feeling about someone elses blood.  Although Mike does have my blood type, he could donate some.  
I have A positive.    I really hope you start to feel better, and they come up with the next best thing that will beat this for you and everyone.  

Hope you have a good evening.

[ladybug52]

All I can say again and again is the standard of care for geno 2, at this time, is 24 weeks. The SOC is 48 weeks for geno 1. Many people have varied from the standard of care. Some have chosen to go shorter, some have chosen to go longer. Variance from the 24/48  week tx protocol, does not mean any one is wrong.
Deb, you speak from the heart. Your sincerity and desire to help and educate  others is obvious. I worry and obsess over things I have no control over, I think we have that in common. Inspite of anti-depressants, commitment to "accept the things I cannot change" we feel as if we need to help others and prevent them from making mistakes. It isn't possible. We can't control other's choices.
This is an educational, open forum where we share ideas and support others. We don't have to all agree on one tx standard for everyone. Once we fufill the obligation to inform, we can let go.
I don't think that a person should be called out for learning new ideas re: tx and tx meds, it's all a learning process. So what if someone was committed to hit it hard and heavy and now realize they were in overkill mode. So what if someone did the best they could and couldn't go the full length of tx? So what if someone quit at 60 or 72 or 36 or 16 or 28? Your anger is at the virus that is stubborn and resilient and evil. We can't change the past but can learn from each other as we continue to fight together to eradicate this disease.
Best wishes,
Bug

[Forseegood]

good post...something for me to work on as well...

[jboyhk]

I think NYGirls concern (and is evident by what is being written in recent posts) is that a person is egged on by faceless internet postings to override a dr's advice.

I am sure Pfizer can produce small studies that don't show any increased heart attack risk for Vioxx.

Its one thing to be an informed patient and another to think you have a medical degree.

What % of users on this site have even taken any sort of statistics course where they can truly understand the study results?

I can see the CNN headline. HepC relapser files lawsuit

Jones vs Some guy on the internet

[jboyhk]

Sorry, Merk not Pfizer

[ladybug52]

I understand NYgirls concern. The whole point in my stopping early is that I did it under informed consent that I was going against tx protocol. I didn't do it because of studies or anyone else's influence, I did it because it was right for me.
I started out saying  that since I had minimal damage (stage 1) if tx didn't work out I could quit and wait for something else.
If people are not aware of the SOC and they quit, that's one thing, but to know the risks of  Hcv and weigh them against the tx drugs is a personal choice, just like religion and  politics. There's not one correct choice, no matter how much we try to influence others. We are not liable for others choices, their statistics background or their lack of medical degree.

[jboyhk]

But lets take a real example.

Over the past weeks and month, on this website, how many countless postings have there been to DEMAND your dr give you a 4 wk PCR.

It has almost become a crying call for the stupidity of dr's.

What is the use of the 4 wk PCR? It would only have use if you want to SHORTEN your treatment.

So by implication, this constant crying call has made a shortened treatment SOC without any large study or FDA approval.

[ladybug52]

"What is the use of the 4 wk PCR? It would only have use if you want to SHORTEN your treatment."

I respectfully disagree.

http://www.retroconference.org/2006/Abstracts/26902.HTM
"Conclusion: RVR at wk 4 indicates a high probability of SVR in G1 pts (~80%) regardless of baseline viral load. PEG IFNa-2a (40KD) + RBV produced an SVR rate of 61% in G1 pts with an LVL, similar to that in G2/3 pts with an LVL (61%) or a high viral load (63%).

http://www.hivandhepatitis.com/2007icr/easl/docs/041707_b.html
"Rapid virological response (RVR), defined as undetectable HCV viral load with qualitative PCR after 4 weeks of treatment, has gained increasing acceptance on as a predictor of sustained virological response (SVR) to treatment with pegylated interferon plus ribavirin."

Some people, like me, want information,  predicting their chances, before continuing tx drugs. That's the true meaning of informed consent, tell me my chances, tell me the stats, give me all the info out there.
Bug

[jmjm530]

Jboy:(The 4 week PCR) has almost become a crying call for the stupidity of dr's.
------------------
Just the doctors that don't order it, and I think "stupidity" is an overstatement. I'd prefer to say that the doctors that do order the 4 week PCR are on top of the Hep C learning curve while those that don't are somewhat behind. When those of us recommend a 4-week PCR, it's not because we think we're smarter than the doctors, but in many cases we're simply reporting what our own doctors do, and/or what recent study data shows.

Here's a recent thread, for example, with various comments about the 4-week PCR from some frequent posters, including myself. The one thing they have in common here is they all support the 4-week PCR: http://www.medhelp.org/forums/hepatitis/messages/45822.html

Jboy: What is the use of the 4 wk PCR? It would only have use if you want to SHORTEN your treatment.
-------------------------------------------------------
Not true. The 4 week PCR -- and the WEEKLY PCR starting at week 1 by some doctors -- have several uses. Besides the very valuable predictive value, early PCRs allow doctors to tweak (individualize) treatment from the get-go based on viral response. This might include upping the meds and/or even changing the Peg to get non-detectible by that very important deadline, week 12. Also, in bordeline cases like mine -- older male, stage 3 -- a rapid viral response can tilt the balance between treating longer than 48 weeks or treating around 48 weeks. I was non-detectible at week 6 (monitored by weekly vl tests) and had I not been, my guess is that my doctor might have pushed for longer treatment than the 54 weeks I ended up with given my age and histology, both pre-treatment negative predictive values. Lastly, even if a doctor doesn't utilize the 4-week PCR in terms of decision making, the 4-week PCR can be very valuable to the patient in the future in a re-treatment scenario with another doctor who might utilize the information to best plan a second attack at the virus.

[Forseegood]

I just think that there are so many unknowns re this treatment...and let's face it, doctors don't know all there is to know about the treatment or this disease, they certainly know more then us, (most of them anyway) but there are still a lot of unknowns....to them as well...

And why wouldn't anyone get a 4 week pcr? to see if they RVR? My doc does 2 week pcr's the beginning of treatment...and that makes me have more faith in him....in that at least he'd like to have more knowledge then less knowledge....that's knowledge worth having in any case, whatever you ultimately decide to do with your treatment, with his/her consultation...

This board is a way for us to product compare, network, share valuable patient information, (especially having these trial participants, that's really a blessing for many of us) AND offer support, etc...

I went to a reknown doctor that told me that hep c patients who "do not" have cirrhosis - have no symptoms from the hepatitis itself....if they do say they are having symptoms, they are either psycho-somatic or they are from some "other" etiology... That only cirrhotics have symptoms relating to Hep C...

Now I know better, I know what is going on in my own body in terms of disease symptoms, he doesn't necessarily, he's not walking in my shoes....When he told me that I secretly wished that he could have my body for 2 weeks, and see if he'd still be singing that same tune...

Because with many docs, *patient symptoms* are just heresay abstractions that many patients talk about, but abstractions like this are *unquantifiable* - because they can't exactly graph many of them on a test...so, to them, perhaps a lot of what we are relating to them is BullShite  (at least docs like this one, and I've heard of many more docs like this on this board.)

Even though diagnositic tests aren't as sophisticated as they are going to be, say, 15 years from now. Probably many things that go under the radar now, will be picked up by tests in the future. The past has shown that to us - because diagnostic tests now pick up things they couldn't 15 years ago...

So if I didn't have a board like this, I'd be way confused and upset, thinking that I might have a host of other diseases....because this one doctor (Head of the liver clinic in his hospital) invalidated my symptoms as not having anything to do with my Hepatitis C...

But I come here, and to Janis, where many of the Hepatitis C Symptoms are itemized and written out.....and I find out that, no, I'm not crazy...that many, many other patients who have hepatitis have these exact same symptoms...manifesting in the same way....gee, a crazy coincidence?  

Are we all so neurotic that we are picking up each other's symptoms? I had some of these symptoms before I came to places like this, or talked to other patients with hepatitis....perhaps a few are that neurotic, or some symptoms do, in fact, come from other etiologies...but I think most of us are just dealing with hepatitis symptoms.....

Some doctors don't listen to their patients, or care much what they have to say or what they are feeling...

You'd think this doctor would have the intellectual "curiosity" to just come to a site like this, or look at the patterns of his own patients and what they are saying to him...

Like the doctor I have now...the doctor I have now figures if this many people are complaining about the same things, there must be something to it...and the virus itself could be causing all kinds of mischief, not to mention ongoing inflammation in the body...thank God there are good doctors, but they are not all good, and we can find out about a lot of these issues here, thankfully, from talking to one another...

I think NYGirl makes some great points, but ultimately, we all are our own masters, and if one person is going to make treatment decisions based on what they saw here, or not, there isn't much any of the rest of us can do about it...We all call our own shots...and it's good we have many opinions to look at...

[jboyhk]

I think you are misintrepreting my statement.

The 4wk PCR may have some predictive value but it currently should not be used as a treatment protocol (i.e. shorten treatment).

If I read your statement that it is a predictor of SVR, what actual value does that hold?

Does that mean if you are UND at 4 wk you will never check you SVR status in 1yr time? 5 yr time?

If you are still going to test if you are SVR what is the value in the 4 wk test?

The only clinical value of the 4wk PCR is for shortening treatment.

[jboyhk]

One doesn't have to search to far for threads talking about how 'incompetent', 'stupid','useless' a dr is for not ordering a 4wk PCR.

[snowbyrd]

If i listened to everything my DR's said I would probably be dead.

[Forseegood]

I don't get what you said...a 4 week pcr will tell a doc how fast you are metabolizing the meds, which is an indicator of a few things...this is good information to know, whatever a patient ultimately decides to do, if the patients wants to do 24 weeks or 72...how on earth can that be a bad thing? How would less information be a good thing? when youre doing chemical treatment?

[Forseegood]

Ha Ha, my dad is 99 and still plays golf and rides a bike...when he has to go to docs to get his eye drops for a little bit of onset glucoma, (one of the only maladies he has) they always ask him what he does or doesn't do to live so healthily for so long? He always says he stays away from docs and doesn't take medicine...ha ha! I'm sure no one is going to take this literally...

[jboyhk]

So metobolization is now an indicator of curing HepC?

These are all assumptions based on your part.

Yes, there are some dr's who believe in the hit them hard and fast treatment and others who don't. Both have small studies supporting their sides.

My point is, if your dr believes in value of a 4 wk PCR they will give it to you. If they don't believe in adjusting dosages, then why should they give you the 4wk PCR??

Its up to the patient to decide. They should ask their dr first, what treatment they will get. If dr responds with essentially SOC then it is not the dr's fault for not issuing a 4 wk PCR.

The patient should search out and find a dr who believes in some alternative approach where the 4wk PCR has some value.

[pigeonca]

When I began treatment, I fully intended to go the course - in my case, 24 weeks.  By the 12th week my sides were debilitating, so - based on my 4 week PCR, which was UND and continued to be throughout - I was taken off riba, and the following week taken off tx altogether.  Now, 4 weeks after stopping, I remain UND.  

Had I not had that 4th week PCR, my doc would not have had enough info to make a decision to have me stop.  I probably would have continued with SOC for the full 24 weeks - despite the sides - and consequently inflicted more permanent damage than I've suffered thus far.  (I have an autoimmune skin disorder, morphea, which can be debilitating as well as disfiguring.)

Nobody wants to risk their chances of licking this disease, but at the same time I think every bit of knowledge we can get can be useful at some unknown time in the future.  Cover your bets.

[jboyhk]

But it sounds like you would have been taken off whether or not you were UND at week 4.

Are you saying that if you were positive at wk 4 the dr would have continued treatement with your autoimmune sx?

Again, its a 'feel good' test. If you didn't have you unfortunate side effects I doubt the dr would have taken you off early.

[rosebud57]

in defense of someone (jmjm) who has mentioned shorter tx for no liver damage geno2. .. i felt even with that knowledge, suggested by jim, i tried my hardest to comply with tx.  it just got too hard, i can't denie that that little bit of information didn't stay in my head.  honestly, i felt it did no harm (to me), i feel some hope that even though i didn't/couldn't finish - that i may still maintain svr. i don't regret my decision - even if i were to be told later down the road it came back.  i would hope better drugs shorter tx. less side effects.would apply

[zazza]

For genotype 2 and 3 it is very useful to get a week 4 viral load test. At week 12, 99% of geno 3:s are UND, so this information tells you virtually nothing. A geno 2 or 3 being detectable at week 4 should consider extending treatment to increase their chances of SVR.

[wyntre9]

Hi J,

[wyntre9]

Sorry!

I pressed the wrong button.

I find your comments interesting, and perhaps more reflective of the physician's perspective than the patients.

And that's always good info to have.

Healing is a collaborative as well as a scientific art, and just as we (the patients) may feel that they (the doctors) don't understand us and out symptoms, they (the doctors) must be frustrated as h*ll with us, too.

I think it's a collaborative relationship,and both parties have to try and compromise to achieve successful results.

The problem is in knowing (or being confident enough) as a patient, to realize that while your doctor may be excellent with some patients, he/she is not the right fit, personally for you.

I have to add that, since starting tx, I have a renewed respect for the medical profession.  They don't have easy jobs.  Working with people, in any field, can be draining, frustrating and exhausting.  

It's not THEIR fault we have hep.  Most doctors want to help us as much or more than we want to be cured!

Why else would they do this job!  *LOL*


Thanks for the input.

wyntre

[Kalio1]

Aside from all the previously mentioned excellent reasons for a 4 week PCR, the value of which is undisputed amongst "top" heoptlogists, is that a 4 week PCR that is UND is a TREMENDOUS boost for the patient. It can give them strength to keep going and with the degree of sides many experience, that reason ALONE validates the test. With the enormous drop out rate of this treatment, doctors should see the value in the test based on this fact alone however there are all the specific medical reasons already mentioned that shouldn't be ignored.

It is an ideal reassement point for any patient to adjust meds or make other critical treatment decisions. It will become standard, it has already become standard practice amongst the doctors treating this disease that are out front on the HCV learning curve. Only the d*pshit doctors who don't have a clue don't do a 4 week test.

[amommy]

count me in on the short course and lovin' it train.  Of COURSE people should NOT be making decisions without their doctor.  Individualized tx is the way to go, and this board only serves as a jumping off point for things to discuss with your doctor.  I do not believe in any way shape or form that people make decisions based solely on what they read on this forum.  Nor do I believe anyone encourages  them to do so.  I   read posts and 99% of the time they say but be sure to ask your doctor.  No one here encourages lone decision making and I personally think your tirade was unnecessary.

[willows]

I really want to "pontificate" about this subject more today, but I am totally out of ideas.  Do you all realize that there is more discussion here of value than about 50 percent of our doctors have had?   Every idea of worth has been said here, that is very cool and something we should honestly be proud of.  Our freakin government can't even do that.

Damn, I really wanted to "pontificate" today.  I guess I can tell all to have a day that is restful and maybe filled with one moment of peace, but you all never, never give up the discussion!

Willow

[traveler65]

You hit it right. Without the 4 week pcr I would probably not gone on. I feel bad for those that are not und or at least a big drop at 4 weeks, but hearing und brought me to tears and made me feel that I might be able to beat this thing.

[pigeonca]

As far as continuing treatment with my sides, had I not known about the possibility of shortening it successfully, I probably would have continued SOC because I really want to get rid of this virus.  And I MAY have suffered more permanent damage, or I may not have.  Who knows?  It's not a simple equation: terrible sides=quit treating.  Sometimes we have to tough it through in order to get what we want, even if we suffer losses in other areas.  The 4 week PCR made it unnecessary for me to have to make those choices, so I'm very grateful that my HMO and my doctor ordered the test.

[susan400]

I'm not saying who is right, wrong, or whatever...,but some people have to stop early because they do not get viral clearance early on.  Each time that I have treated, I did not obtain viral clearance.  Some of the times, I was taken off of treatment early, i.e. 6-8 mon. and some of the time I treated all the way up to 16 mon.  The point is, I never did clear.  If I cleared, I could see the rational of staying on the treatment for a longer period of time.  Right now though, I'm not going to be able to be treated at all; unless I get picked for a trial.   No doctor will treat me anymore with SOC.    The doctor I talked to yesterday at trial site #2, is excited about the Telaprevir.  We'll see what happens with it.

Susan

[wyntre9]

I Hope you get good news tomorrow, Susan.

Let us know.

wyntre

[Teufelhunden]

I like that word "pontificate". I'm more on the lofty side than dignified though. Must be the riba. If I may jump on the band wagon for a minute. Each one of us is connected. We all have the same thing in common whether its 1a or 2 or 3. Whether it's stage 1 or 4. Whether our VL is two million or two thousand. Whether we treat for 24 or 48 or 72. Whether we have all the information or, like me, dumber than a bag of hammers when it comes to this insidious disease. It doesn't matter if we double dose, triple dose, stick pins in dolls, wrap ourselves in saran wrap, drink sap from a dogwood tree, whatever. The point is we're all trying to reach the same goal. Everyone of us. I don't like it. I haven't liked it from day one. I won't like it at week 48. But you know what? Come friday afternoon, I'll wipe the alcohol pad on my stomach, stick myself for the 43rd time, down my riba, and enjoy the fact that it's one less week. Each one of you brings something to this forum. Me for one, looks for the knowledge and experience from some of you thats been here for awhile. I shake my head everytime I read a new name, thinking of what you new folks are getting ready to go through. I pray for those reaching the end of their tx.. I'm saddened by the relapsers. I laugh, I cry, I ponder, I hope, I think of the time when each one of us, past, present, and future, looks back on this very difficult and emotional journey. Because if we can do that, if we can sit back and think of our journeys, yours and mine, by ourselves or with others...than we made it. And thats what it's all about.

[willows]

yes, it is what it is all about.  we share a commonality that few people can understand and I, like you, wish that no ONE ever had to share our journey.  But I got my feet planted and my nose pointed in this direction so I gotta go with it.  

In fact, I will have to reinvent myself if I should ever be so lucky as to clear the virus.  Who will I be?  Strange to think about, but good.  Very good.

[ladybug52]

Reading the posts, I was impressed by the sincerity, passion, compassion and intelligence collectively expressed by the members.
It's great to read the comments, we have some very informed people here sharing ideas.
We're so darn smart!
Bug

[faygy]

I am new to all this.  I have hep c type 1 and hep b and will shortly start treatment.  The doctors all say that there is little discomfort blah blah blah.  What should I really expect?  Does it interfere with working full time?  In my experience, doctors never tell you the truth about side effects, so I can only trust you fellow patients.