Treatment extension

Hope a new morning finds everyone well. Question, as I mentioned the other day my doc wants to extend my treatment to 54 weeks (thought it was 53) 36 weeks past clearing sometime between wk 13
(vl 256) and undectable at 18 weeks (TaqMan 10 iu.ml). I did have a 2 log drop by week 8. While I have plenty of time to push for 72 weeks if I chose, which I'm sure I could convince him to do since he is pretty aggressive (bumped my riba from 1200 to 1400 to current 1600- I have read one study on very high does riba treatment), my question is about new studies going on.
One would think if extended treatment data has been found to be beneficial, new studies would be ongoing. Does anyone know if there are new studies ongoing? I figure with the Summer hep doc conventions coming up, new data and study results should be out as well.
The 72 weeks study is confusing to a bumpkin like me. My base vl was 2,400,000- the study "In this study a significant increase of SVR was achieved with prolonged therapy in patients with a viral load less than 800,000 IU/mL at baseline but not in those with a higher level of viremia"
"More recently, it was shown that combination therapy with peginterferon-alfa2a plus ribavirin for 48 weeks was more effective in patients infected with HCV genotype 1 if the ribavirin dose was 1000 or 1200 mg/day rather than 800 mg/day."
any input appreciated

[jmjm530]

You kmow, it's a real **** shoot with these numbers. Your doc is adding '36' to week 18 even though you might have cleared at week 14. Then there are the 72 week studies but most seem to use fixed-dose riba and you're actually on higher than what is normally considered weight based dose. So, to me, anything between 54 and 72 weeks is reasonable. How much liver damage do you have? How are the side effects? Little or no liver damage with significant sides might argue to treat 54 weeks. Significant liver damage with fewer sides might argue 72 weeks. Then there's the inbetween. I ended up treating 54 weeks and was non-detectible at week 6. My doc wanted the xtra weeks (he added 48 to 6) because of my age (58) and liver damage (stage 3). Still, two other well respected docs told me that 48 weeks would have been enough. I made the best decision I could considering I was on riba and Pegasys at the time. LOL. The studies you're looking for might be found over at the Clinical Options site in the video module by Drs Dieterich and Jensen "Doc Eye for the Hep Guy". Or you might try searching the archives here but good luck on that one :)

Be well,

-- Jim

Clinical Options web site (free registration required):
http://www.clinicaloptions.com/Hepatitis.aspx



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[nygirl7]

I was stage 3 and decided I didn't want to do this ever again as possible so I went for the 72.  Plus - I perfectly fit all the criteria (baseline vl 568,000) and things like that.

Plus with 2 genotypes I knew i had to, since I didn't clear until somewhere between week 12 and 24.

I figured - once my body was totally used to doing treatment it would be easier to continue rather than to someday start again.

The numbers can be confusing. Instead try and use things in YOUR sitauation (when UND, what stage damage) to decide.  A lot of doctors are starting to go fixed weight with the riba - but I don't think "more" is going to hurt anything really - just "less").

It's really ALL a giant crapshoot - we just do the best we can and pray like hell!

Good luck!

[Proactive]

don't think my post took, I'll try again..Thanks for all the info
repost
JmJm, thanks for the quick response, I probably should have made my post on zazza'a thread. (I have finally figured out how to "post a commet" and not just a question, my cookie blocker was not allowing me to comment only question)
Had biopsy prior to beginning treatment, came in at a 2/2
As far as the riba increases, going from 1200 to 1400 wasn't to noticeable, but sure felt going from 1400 to 1600 ..No question my butt is dragging and have a bit of a rash. Winter is very slow for me so it's not a problem, but my heavy work season is about 1 1/2 months away, that is when we'll see how the rubber holds the road..Funny, lately my worst day of the week, is the day before my shot(today)...maybe peg withdrawls?

[jmjm530]

NY: A lot of doctors are starting to go fixed weight with the riba
--------------------------------
Are you sure you mean that? Weight-based riba is pretty much a standard now for geno 1's and many doctors are even using weight-based now for geno 2's and 3's. In the old days, they might have used fixed 800mg for all genotypes and that's why you see that dosage in some of the older studies.

-- Jim

[Proactive]

Hopefully we didn't get off to a bad start the other day.
I'll have you know,I took my morning pills with 2 fat filled chocolate cover donuts and a 'nana ;^)

[Proactive]

Flguy, funny you ask about the pegintron. Actually I did ask the np (who I see monthly under the doc's supervision, who reviews all tests, progress etc.) why we were not upping the pegintron as well. She basically said, well the doc just said to up the riba, and to be honest I did pursue any further. But I guess at 120mg (.5) and weighting 170#'s he figured it was high enough? I think weight based I actually could have been prescribed at 120mg (.4). IMO, (which isn't worth squat G) I would perfer the highest doses of everything my body and bloodwork say I could stand, but then again, thats probably the attitude that got me the hep in the first place G...I believe it's called stink'in think'in!!

NYgirl, I could only imagine what putting 1600 riba in a 125# body would do..I told my np at last visit that I sure hoped I was vl neg, because I wasn't sure I could handle another 200mg increase!! I do wish I was a better breakfast eater, never turned me on much..To early to eat, I take pills at 5:00 am and pm. Take my shot around 6:00 am, so I don't have to worry myself to death!! After 19 shots, I know it doesn't hurt, but it freaks me out doing the shot still, I physically shake like a leaf doing the shot. Np gave me a script for Clonazepam to take prior to doing the shot, didn't help much and felt horrible the rest of the day, stopped taking and just shake, rattle and roll to it's over!

[Proactive]

I think the doc is done boosting my riba dose and holding at the 1600, his goal was to get me to undectable vl asap, which happened sometime between week 14 and 18 (just the way my monthly visits worked out). I started with a base 17.6 hgb and at week 18, even with the higher riba dose luckily have held at 14 hgb.
With a nickname of "FL"guy, I'm suspecting you are in Florida? Must be nice, was so cold here the last few days I had to get some cetane booster for my truck, darn diesel fuel was gelling from the cold temps!!

[FlGuy]

Yup, in mostly sunny Fla.  The reason I asked about the hgb and dose is the implied relationship between the absorption of riba and the decrease in hgb. Put another way, low hgb is not necessarily a bad thing if it can be managed at a 'near anemia' level or enhanced just above anemia level with a drug like Procrit.  In another thread I asked if your aggressive doc (and I like aggressive tx docs) considered increasing your PegIntron.  I noticed you were already on notch below max.  And at your weight, going to the max amount to get to und and stay there is not a dramatic increase in the peg.  Just wondering, not suggesting.

[nygirl7]

Dumb...typing at work and said everying assed backwards (as usual).  What was I thinking? Didn't have my 3rd cup of coffee yet. Yes yes now that i'm off treatment I'm like a hyper little caffeine addict with five different expensive bags of flavored coffee here (along with the regular blends) to pick from.

It's the antiribabrainfog mediciation and my new drug of choice.

As an addict - when I"m into something I am obsessively compulsive!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


(After all the uh little teeny tiny bits of extra riba i took.....I think my body NEEDS the caffeine for real!) Still dont' sleep much ... hum wonder why?

[nygirl7]

Said As far as the riba increases, going from 1200 to 1400 wasn't to noticeable, but sure felt going from 1400 to 1600 ..No "


LOL I weighed tops 125 tops (and I am tall) when I started and was taking about 1200 - 1600 a day of riba. Yeah...I'm mental. I can't TELL you how freaked out it really made me. When I finally was told at week 46 by Doctor Jacobson it wouldn't hurt my chances to go down to the 800 I should have been on all along....and I did...I can't TELL you how quickly my hemo went up and my energy level right with it. Thank God - by that point I had lost close to 20 pounds and was SKELETAL as Nicole Richie...on me it did NOT look good I looked like Meryl Streep in Sophies Choice. Beautiful grey skin...tufts of hair left...quite lovely!

I was just NuTS thinking they were "just little tiny pills" and popped them like candy.

NOT good thinking.  You see - I can be QUITE the moron when I really want to be. ;)
One thing to take an "extra" different to double up on the riba dose like an idiot on the weekends.


I'm so glad you had the donuts.  I figure why NOT?  It's MUCH more pleasurable than going without and when you start dropping weight like tossing boulders off a bridge - it gets even MORE fun.

Gotta enjoy the fat eating while we can and it just burns straight off again! :)

Damn... miss those days!  It almost makes it worth treating again!!!!!!!!!!!!   :)

Debby

[FlGuy]

Good choice on the donuts and banana with the riba.  Hope you washed it down with some whole chocolate milk.  Breakfast of champions.  The other day, you mentioned your riba increases.  Are you and the aggressive doc aiming a a specific hgb level and manage riba doses to that?  Have a feel how much riba you'll level off with?

[nygirl7]

Believe me - in a few weeks you will be an old expert at doing the shots and it won't rattle you at all anymore. I remember being on this forum begging for help on how to do it I was so scared. Towards the end I could close my eyes and be eating a sandwich at the same time while listening to the radio.  ;)  After a few times you just "get it".

I didn't clear until somewhere between weeks 12 and 24 even WITH all that riba.  I don't know if it really helped or really didn't matter. I was just glad I finally made it and could continue on. I treated as aggressively as possible. I have two genotypes (Genotype 1A and 1B - lucky me whoever I got it from was one wild partier I guess?) so I always thought it might be harder to kill them all off. I guess it was.

The more you learn the better.  I figured it was better to err on the side of the "more is better" approach then taking a chance with less.  Since there is really no way to know how your body will handle everything - we really are on our own.

I'm glad to know that you are doign the research - every single case of hepC really seems to me that it should be taylored due to the individual instead of just treating us all with one blanket treatment.

But - that would be too hard for the doctors, they might have to think for themselves. ;)

Debby