NO MORE EXTENDED TREATMENT ADVISED

[NYgirl]

My doc called me at home last night. He does NOT want me to do past 48.

"THE" JOURNAL finally came out with a REAL definitive study yesterday. He said that it proved that extending treatment does NOT necessarily help the outcome - it is such a small subgroup of patients that is helped by it that it's not worth extending and oftentimes the additional months of Interferon can HURT more than help as people can develop autoimmune diseases (like I already have) and sides that never resolve.

Also he said that there is nothing really factual about treating 36 weeks past clear.  That although medicine has come far in the last 15 years - it's still nothing more than a "guess".  He told me that the standard 24 / 48 appears the way to go - going by the STUDY DATA that he just finished reading (I thought that was cool he called me right away).

IF I want to go to 72 - I would need to go to the reknown Dr. Ira Jacobsen or someone like that in New York City because with the dangers involved only someone like Dr. J. should be in charge - not a "heptologist" or a "GI" but someone who is at the cutting edge of developing, studying and trials - he also said honestly if something went wrong if we did extend a doctor like he could not absorb it but a world renown doctor could because while everyone does love and trust their doctor = they are NOT experts but in the end just doctors.

But in the end the studies have proven out it is not worth it it is a very insignificant difference and he does not advise it - going on the STUDY in "THE" JOURNAL.

[NYgirl]

Using the REAL information, data and study I am going to stop at 48 and so I only have 17 weeks left and am done after August 18th.

I am happy about that.

[Mister beagle bailey]

I'm glad your stoppong at 48, you have gone through h*ll and back.  You are a great fighter and at the end it doesn't mean you will not be SVR.  Did you find out from the study what else the meds cause? Be well my friend.:)

Beagle

[jmjm530]

Thanks for the info. Sorry to be so dense but what journal are you talking about and do you have a link or reference to the article?

Two hepatologists I consulted with -- same level as Dr. J. -- also suggested that extending treatment beyond 48 weeks had diminishing returns if you were non-detectible by week 12. The implication, however, was that if you didn't go non-detectible by week 12, then they might extend.

Since you apparently live so close to Dr. J, might not be a bad idea to go for that consult you're talking about, if for no other reason than piece of mind. There are SO MANY studies out there, and they all don't say the same thing, so sometimes it's not wise to base a decision on a single study until it has time for peer review. Still, I'm eager to look at it.

Hope this finds you well.

-- Jim

[Mister beagle bailey]

How do your studies show the 2's do on tratment if they stop before 24 weeks?

Beagle

[Mister beagle bailey]

HGB is down to 7.4 and I have 7 weeks left.  I'm having it rough time as I've been away from home since Dec. with the exception of a week here and there.

Beagle

[jmjm530]

You're a stage 3 if I remember? If you do decide to see Dr. J, I'd also bring my original biopsy slides with me (along with all bloodwork, scans, reports, etc) for his department to review. It's not a single slide but a set of 4-6. Even if not covered by insurance, a single consult would help set you in the right direction which another doctor could follow through on. If I remember correctly back when, you had some reservations about your doctor's experience treating Hep C. Just hate to see you base such an important decision without having someone else take at least one look over his shoulder. All the best whatever you decide.

-- Jim

[NYgirl]

I will call and ask him but he kept calling it "THE" Journal - then he said the most important source of documentation for all doctors so I just assumed it was like the New England or something because I don't know any names.

But he said he had JUST read it it had just come out the DAY BEFORE (so that would be the 24th) and it was NOT supposition but it was fact that it did not change the numbers in any significant way except a very, very small subculture and was not worth the "general" population extending.

Which may be one reason that you only went to 50 whatever instead of onwards too.

If you know what "The Journal" is then you know what it is. I was sort of shocked he called me at home without me even putting a call IN to him so...

But it's not HIS opinion but the study results in "the biggest journal" whatever it may be.

[NYgirl]

PS I honestly don't think I'm going to even go to Dr. J.  Considering my basic health with the reactions to the poisons funnelling around...I think stopping at 48 (he said the same thing as you people who clear at week 12 but that he doesn't feel I cleared that much later to really make a difference since it was somewhere between 12 - 24 I thought that was a huge jump BUT he said my number of 400 when i wasn't clear was so low by OLD standards I would have been clear since week 4...)

So I guess that is right.  I mean if they were using 615 I would have been clear since week 4 - so I get where he is going.

If I do decide to go to Dr. J (which he suggested and has no problem with at all) I will bring all documentations and slides. Since he's so infamous I don't know how long it would take to get an appt. I would like to meet him you know?

[Moniker]

My doctor doesn't want to extend tx either. It will be nice to finish treatment and see what happens next. I'm happy that my "quack" isn't pushing me to extend. I signed on for 48 weeks, and that's ENOUGH; either it'll work or it won't.

Bob

[FlGuy]

Dr. Douglas Dietrich is another option. In the forum in which he writes, I've often seem him extend an offer to have his office review cases. I don't have access to the forum from my work pc but others may have it. Or just google of his name and you'll find him. I hope that when you finish in August the matter won't have to be repeated, or extended, for you. I guess by Aug you will have had at least 24 weeks of UND and 36 weeks with a vl of 400 or less and I hope this bodes well for you.

[FlGuy]

The last time you had the transfusion ('bout 8 weeks now?) you came back a new Beagle. I'm guessing that if you try to do the next seven weeks without the trans and with hgb in the 7's that you probably don't expect it to rise much, if at all, even with the procrit you use. So, what's you main concern in getting another trans knowing it will likely get you to the end tx without leaving you all wrung out on a couch? Your doc has already given you the ticket, right?

[Mister beagle bailey]

Your right, I guess it's a bit of being home sick and depression setting in,  It's not easy treating so far from home.

Beagle

[FlGuy]

I feel for you.  Not to alienate our NY friends too much but all other things being equal I'd rather feel lousy in Fl than in NY. I realize that you can't get a tx doc in Florida but can you get the transfusion and then back to Florida to finish up?  Not to give you any ideas or anything but I went to the emergency room the other night with chest pains. I thought the big one was coming - even had shoulder pain (but have been painting for the 3 days prior). Turned out to be nothing but they did a lot of bloodwork pronto (cbc, liver, U/S, CT scan) got all the results, including hgb and hematocrit).  Hang in there MBB, you getting down to the wire now and only a few more rough decisions to make.

[Mister beagle bailey]

If only the hemo dr. would let me take the procrit back to Fl I would be fine.  Glad all you tests were good.  With all that painting your doing is why your shoulder is hurting.  Wish I had your energy.

Beagle

[FlGuy]

Just saw your response to DR on the Hemo and the procrit. Sorry, I thought it was self-administered.  Any way to change that?

[FlGuy]

Ability to do stuff is age dependent. I'm 55. Unfortunately, my liver and shoulders are in their 80's. Other body functions not necessarily acting their age either - or maybe they are and I'm just getting old.

[Mister beagle bailey]

I'm going to talk to my hep doc and see what he can do for me.

I know the feeling of getting old as I'll be 59 in 2 weeks. It's hard to tell if it's the meds or getting older.

Beagle

[goldyn]

You know what after reading about all the 1s, 2s, 3s, testing positive after  1or 2 months off of tx i think everyone should do standard 36 weeks past the week they cleared  as long as they are medically capable of doing so.

[Algernon]

Aren't you a "2"?  I just saw a couple of recent studies saying that 12 weeks were sufficient.  I'm at work but as soon as I get home (assuming I don't pass out or crash on the way), I'll send the article info.

I have 6 1/2 weeks to go (type 3) and I'm hitting the wall too.  Back on Procrit for almost 2 weeks and I don't feel anything but worse.  I'm almost to the needing to sit in my mom's lap and cry phase (not good when you're 48).

I want to quit so bad.  I don't know what's right anymore (costs/benefits).  The new study I read says that shorter duration works for type 3s too, but only if they start with low viral load (VL didn't matter for 2s).  Unfortunately, mine was high.

Back at you later.

[cuteus]

when a doctor speaks of the 'general' population he is not specifically speaking of slow responders. The Teravic-4 study addressed the specific needs of the slow to respond to tx, and did show a decline in the relapse rate if the tx was extended. If a dr is assigning the same tx to slow responders and EVRs/RVRs he is not doing his job, in my opinion. Also, in the conference in San Francisco, a paper was presented on relapsers who thought they were negative at wk 12, but further testing of their blood sample by a more sensitive test, determined that there was still residual virus in these 'negatives'(at wk 12) and almost all of them relapsed.
If someone is tolerating tx well, and has been a slow responder, tx extensions (by Teravic) does not show a marked increased of adverse events, and extension can be safely considered. If the tx is creating havoc, might as well stop even before the 48 wks, as it is very possible that relapse will occur and why expose yourself to more meds in that situation?

[Mister beagle bailey]

Yes, I'm a 2B, starting VL before tx was 318,000.  Please send me that study you read when you find it.

Thank you,

Beagle

[can-do-man]

Says.............i think everyone should do standard 36 weeks past the week they cleared

--------------------------------------------------------------
Didn't know it was standard, another thing here that was said that became gospel

[slowsouthernstyle]

how do you know they do not mean slow responders as not part of the general population are you a doctor?  I was a non responder after 3 attempts and I like to think I am considered part of the general population or is the general population only the ones that have reached remission now I am curious?

slow

[GoofyDad]

Goldyn says: i think everyone should do standard 36 weeks past the week they cleared

That seems a bit extreme to me. For example something like 85% of G2s SVR with 24 weeks, and 60 plus percent of those have RVR and could get the same results in shorter TX. Studies suggest that extending beyond 24 weeks doesn't seem to improve SVR ratios. Why treat this population for so long?

Algernon: Disqualifying G3's from short tx based on VL is a new one on me. I'd be interested in reading about that. Have you got a link?

[NYgirl]

Alg:
I'm sorry you are feeling SO bad.  Don't feel bad about wanting to sit with your mommy though...I'm almost the same age as you and TOTALLY understand.  I'm certainly not the most mature of the 40 year olds there is but this disease certainly has the ability to make me "want my mommy" sometimes big time.

If it wasn't for her during the beginning and during my anemia time I wouldn't have survived.  Just even when she brings me up a cup of tea or asks if I need anything....it makes me feel better.


Bob:  I thought that you were going to get one more transfusion before the end of tx to get the numbers up again - when will that be?

FL - they won't let Beags do the procrit at home cause of the Thal.  I understand them wanting to monitor him closely but making him fly back and forth from Florida to NY and back all the time is not just such a huge COST...it's got to be so hard on his body in addition!  When he's ANEMIC of all things!

Cuteus:  The study in the journal didn't say it wasn't worth it because it is detrimental to most - but that it in fact after all doesn't HELP that many in a significant number to make it worth it.  As a superfast responder then a slow clearing responder I was certainly willing to do as long as needed to stay clear - just like you.  But if it doesn't really change the odds significantly enough to make any difference and since a lot of new data lately seems to be coming out supporting the shorter timing - if he doesn't suggest it and Jacobsen doesn't think it worth it then I'll stop and 48 and pray I don't need to retreat.

Otherwise I'll be doing 96 after all in the long run.

[cuteus]

because most studies out there are speaking of the subjects that have achieved a negative or over two log drop by wk 12, that has been considered the bulk of the subjects in the majority of studies. Since there is only one study I know that speaks of slow responders(Teravic)< I think we can safely assume that this one report nygirl mentioned has followed the general trend, but no, I am not sure, but will bet that I am.
take care

[slowsouthernstyle]

today is a in town day for me not much going on till this afternoon I think I will call my doc and run some of this stuff by him and see what he says

[Mister beagle bailey]

I still have the ok for transfusion but last week it went up a bit and now this week it's down a bit.  We are waiting to see what happens next week with the HGB.

I may be wrong but I though that a few who have thallassemia and are treating were giving the procrit to them selves.  Do you remember?

Beagle

[jakeone29]

With this poison we keep calling TX  Im willing to to go with the first "Anybodys Journal"that says dont extend even a bad rumour .lol. I was short of the 2 log drop at week 12. ND at week 16 (thanks for that advise jim to get tested at 16,18 , 20 etc). Im not going to extend , im taking my chances at week 48 ..earlier if this tx keeps eating at my body the way it is. When im done im taking what ever the results are and never looking back till i hear there is a CURE and notjust another  call for crash test dummys.  This  no haired, half insane,weird skinned freak side show crash test dummy currently at 18/48  nd at 16/48,  will be retiring and taking his chances with GOD. Love ya 's al,  GOODLUCK all.. peace love & kisses
Jake

[slowsouthernstyle]

"When im done im taking what ever the results are and never looking back till i hear there is a CURE and notjust another call for crash test dummys."

I'm with you brother

slow

[Mister beagle bailey]

I had to miss this, what happened that you changed drs. and you've had bad news lately.  Are you alright my friend?

Beagle

[Mister beagle bailey]

Now that you said it I was feeling this way the last time before the trans., your right.  Will give it till Tues and it it doesn't go up I'll do the trans again.

Thanks,

Beagle

[returntosender]

Well said!  I have been thinking lately that there are so many variables and unknowns that at some point I may just have to leave the results to the big guy.  At this point I am more worried about how addicted I am to this forum. Is there are cure for this?  I should be working but all I am interested in is NYGirls thyroid, beagle's anemia, Jim's post tx sides - even doubledose couldnt break free.  Forget SVR, how about "SFR" - sustained forum response.

[willing]

the online version of the most recent issue of <a href="http://www3.interscience.wiley.com/cgi-bin/jhome/106570044"Hepatology</a> became available last Thursday (4/20) and included the results of a recent study by <a href="http://www3.interscience.wiley.com/cgi-bin/abstract/112595569/ABSTRACT">Jensen et al </a> and accompanying editorial by <a href="http://www3.interscience.wiley.com/cgi-bin/abstract/112595565/ABSTRACT">Gary Davis</a>.  This may be the study your Dr. is referring to. However that study primarily reinforces the importance of RVR as a predictor and provides data that 1s benefitting from RVR can reasonably consider reducing tx to 24. The study provides no data on the benefit of >48 weeks for sluggish responders. It discusses the results of the TERAVIC-4 study in detail and includes the following observations:
<em>The results of this study have practical significance. It is desirable to expose patients with chronic hepatitis C to the shortest duration of treatment possible to reduce the likelihood of adverse events and minimize costs. Patients with HCV genotype 1 are the most resistant to treatment and therefore are commonly selected for studies involving new antiviral agents. The ability to identify a group of patients that can be treated for 24 weeks would also reduce the cost of therapeutic trials of new agents and may even speed the development of new agents.

The treatment algorithm for patients with chronic hepatitis C continues to evolve. The results of this analysis and those from a recent randomized, multicenter trial[8] demonstrate that week 4 HCV RNA testing is useful in the routine management of patients with genotype 1 infection. In the TeraViC-4 study, patients with detectable HCV RNA at week 4 were randomized to either 48 or 72 weeks of treatment with peginterferon -2a (40 kd) plus ribavirin 800 mg/d. SVR rates in patients who did not achieve a RVR were significantly higher in the 72-week versus the 48-week treatment groups, primarily because of a reduced rate of virological relapse during follow-up.[8] Conversely, the overall SVR rate in genotype 1 patients with a baseline HCV RNA level of 800,000 IU/mL or less who had a RVR at week 4 was 76% after 24 or 48 weeks of treatment. </em>

For what it's worth, I became thoroughly obsessed with the researching the benefits of extending past 48 buring my tx ( I was undetectable at 12 but only by a low-sensitivity test - <600iu/ml). After poring over TERAVIC and the similar German studies I concluded there was no benefit. As best I can tell, later data partly disproved my decision (though I still don't know whether tx has worked for me). Going past 48 has a small but statistically measurable benefit for patients with sluggish response; it does nothing to improve the SVR odds of those with quick or very slow response.

[jmjm530]

Call me crazy, wary, paranoid, or just someone who wants to be informed... but personally, I'd never make a major treatment decision based on a study in "THE" Journal without asking my doc to fax me that study so I could read it in its entirety. To be clear, this is not to say I'm recommending that you extend treatment -- I'm not -- I'm just saying don't base your decision on a study you haven't seen read, in a Journal you don't know the name of, read  to you by a doctor over the phone that you've had reservations about in the past.

-- Jim

[goldyn]

I just hate to read all relapses,instead of people trying to pull out for shorter tx  to rememeber those who have relapsed and just try to tough it out and with 60% chance  for 3s svr i think they should do a full year.

[willing]

OK - I used to think I couldn't type straight because of TX; now I know better. That recent Hepatology article focusing on RVR is <a href="http://www3.interscience.wiley.com/cgi-bin/abstract/112595570/ABSTRACT">Jensen, et al</a>. However, the article your Dr. is referring to is probably <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16618403&query_hl=1&itool=pubmed_docsum">Berg et al</a>. This is journal publication of the "German" study I was referring to above.

[FlGuy]

The basic situation is that the doc originally told me I had fibrosis.  The story now (no new test other than recent labs) is that it's cirrhosis and that it's stage 2 or 3 (whatever stage 2/3 are of cirrhosis). So, now lined up for endoscope (check for varicies), colonoscopy (due for one for other stuff), Abdomen and liver ultasound (had it at ER other night and no fluids found), CT scan - had it at the ER for the chest stuff and I asked them to look a little further south too - that was ok too.  After the scopes next month, take the whole package, including bx slides, to another hepatologist for a review of where I am and what's ahead. The bummer was that I thought the results of my recent pcr (should get pcr back today or tomorrow)would have been the last piece of info to send me down the svr highway without too much liver concern.  In afterthought, I'm guessing the chest pains were either stress-induced or breathing in too much latex paint and that the shoulder pain was just my old bones sending me messages.  Chronic diseases stink.

[NYgirl]

I think you are one of the only people I've EVER heard of having to go to the doctor for the Procrit EVER and that they usually INSIST you give it to yourself. I mean Thal or not it makes no sense and sort of makes me mad, I don't know how you do it!

Did your doc ever give you a solid reason WHY he makes you come up (aside from the bucks?) I mean as long as you did your blood tests every week and they were faxed over so he could see what is going on why SHOULD you have to "commute" it's so NOT fair!