Still detectible at 16 weeks. Up riba?

[OceanLiver]

Have had a slow steady response from 1,300.000 VL to 1,150 at 16 weeks. 1b -incomplete cirrhosis.  Currently and happily on Procrit.  The doc said that when my HGB reached 12, I should increase the riba from 1000 to 1200.  My weight is 148 and BMI 27.  I have a small bit of rash and a bit of itching at this point.  

Today's labs HGB 11.9.  The nurse did not seem to think that was close enough to 12.  Do you think I should pressure the PA and Doc to up the riba now.  My feeling is that I really only have the next 6 weeks to get to ZERO, so if not now, when?

Also anyone know of anyone who was kept on treament that did not  clear by 24 weeks.  Do they ever change drugs?  I am on pegasus.  Does insurance become a big problem at that point?  I know I am jumping way ahead - but my mind is still running way faster than the old bod.

Thanks everyone for all your insights and kindness.

[Kalio1]

I don't know your doctor personally, but you are being seen at one of the best facilities in CA and your doc has an excellent rep. I'd say you are in good hands.

Good luck with your tx decisions, even though you have a good doc, you might want to seek a second opinion for the input and a different POV. to help you with this.

[OceanLiver]

Was Miles doctor really named Dr. Carcinoma? (good joke)  Thanks for the pep talk.  I am in the wait and see place now but want to stay proactive.  I will up the riba if the HGB gets to 12  next Tues.  If I get to zero by 24weeks, I assume no problem with the insurance company.  But if not - what sort of clout do we have to convince them of the histalogical imporvement issues?  What concerns me is the lag time with the company and getting the next months supply.  Well soon I will be an expert.  It is funny, some days I feel the fight and other days I am more in the acceptance mode.  Almost like being 2 people.  

Rev 88 weeks, wow! How long were you UND?  Did you relaspe?  How are you feeling now?  Thanks again, Ocean

[NYgirl]

Also (for me) the most important factor aside from SVR was how drastically doing treatment (regardless of SVR) reduces the chance of getting liver cancer.

As a stage 3...if I even regress one stage that would really help me out a lot.

Of course - I am hoping for SVR after being on tx for 68 weeks...I've worked hard for it and hope I get it. :)

[NYgirl]

I don't think upping the riba is that critical and it can easily send the hemo right back down. Even ONE little extra pill.

You should begin thinking of extending to 72 weeks at this point. Hopefully you will be UND by week 24 though!  

[cuteus]

infergen is another option.

[miked]

Your situation is similar to what I went through.  I had a slow VL decline from 3M to 9,600; then at week 32 it rose to 15,000, game over and I was taken off tx.

If I had it to do over again I would have made an appointment with Dr. Cecil Bennet

http://www.hepatitisdoctor.com/

He specializes in hard to treat and is noted for upping INF, changing INF (from Roche to Schering or vice vesa), etc.  There's some sort of medical reimbursement through insurance but not full coverage, at least not for my insurance.

OceanLiver indicates that you're on a coast.  Bennet's in Lowisville, KY.

I didn't hear about him until much later after stopping tx but definitly would have made an appointment at least for a consultation.

There's a guy here named DoubleDose that can add to my comments.

Also there are several people her who Bennet sees...can you guys add to this?

Keep your chin up; it's tough.

Mike

[HCA]

His name is actually Bennet Cecil rather than vice verce.He doesn't like pegintron at all-he is big on long treatment and also likes Infergen.
I am sure he is a good man,but he has very fixed ideas of his own,and I don't believe he is regarded as a particularly mainstream practicioner,a bit of a maverick in fact.
I know that some people on this forum have consulted him,and I would love to know how they fared with him.

[jmjm530]

The other point on Dr. Cecil is that he starts tx off with a lower than standard dose of interferon and then titers up. To my knowledge, he is the only one that does this and it goes against the "hit it hard, hit it early" approach endorsed by most hepatologists. Personally, the hit-it-hard-and-early approach makes the most sense to me, especially without any studies I'm aware of with Cecil's approach. As Milked says, I'm sure he's a good and compassionate man based on some of those who posted about him.

-- Jim

[miked]

Sorry about transposing his name.

This guy is one of the few docs that I know who will go "off-label" from SOC.  If there are other docs that the board can recommend please do.

When I was in Ocean's situation I was brand new to this board.  On my first post DoubleDose advised to switch or up INF which made all the sense in the world to me.

I asked my doc who dodged the question and wouldn't even return an email.

[ladybug52]

"I would remember that treatment's end result/benefit is not always a SVR. An improvement in liver architecture is also a benefit in many cases."
Best advice I've heard from anyone in a long time. Now if I can just try to remember it, and apply it to myself...
Bug

[Imagine]

Thanks for the reminder Scott. I sometimes get fixated on the SVR part of all this. It helps to remember that my 48 wks was not in vane.

Hope your day is going well!

Alan

[CitizenSmith]

I'm another one who thinks you should try and get your Doc to change Interferons,I don't think the Riba will do it at this stage.Best of Luck.

[jmjm530]

A lot of the more progressive/cutting edge hepatologists go "off label" these days, using various newer PCR rules to extend (or shorten) tx when necessary and even double-dosing Peg, especially in the case of relapsers. If you visit the Clinical Options website -- http://www.clinicaloptions.com/Hepatitis.aspx -- (free registration required) you'll see how mainstream "off label" is becoming. Of particular interested might be the video module "Doc Eye for the Hep Guy" which reviews several re-treatment protocols. My doctor, for example, allowed me as a tx naive (stage 3 dx) to both double-dose and do high-dose ribavirin, as well as extend tx to 54 weeks.

From what I've read here and at his site, the two things about Dr. Cecil that are different from most other doctors are again his titering up approach of the Peg that I commented on in m previous post, and the length of his treatments. For example, he has recommended treatment naive patients (first timers) with stage 3 damage treat 2 years, regardless of RVR. I spoke to at least four well-respected hepatologists on this very issue and three of them recommended 48 weeks given my RVR and one suggested 54 weeks. Personally, I think 2 years is quite excessive for someone with my stats and RVR, especially with no studies I know of going out that far, and in light of the fact that most doctors gave me around an 80% chance of SVR once I was non-detectible at end of treatment.

All the best,

-- Jim

[OceanLiver]

Thanks for your support.  How long did you, BobK and Miles stay on treatment? Were you (they) UND at 24 weeks?   I am wondering now if they will let me stay on treatment if I do not clear by 24 weeks.   Pros and cons anyone? At this point I am tolerating the meds. I am very grateful for that.

I am on the west coast and see Dr. Wakil from CPMC when he passes through on his route. So I do not think I will be consulting with an east coast doc.  Will discuss continuing trreatment changing interferons etc. on Feb. 8 after my 20 week VL. He originally mentioned the possibility concesus interferon or maintanance therapy.  Don't know much about either of them. Do you?  I want to trust that he is very current and informed, but still wonder if I should consult with another doc before getting off treatment. Anyone know any good docs in the Bay Area?  I live 5 hours north.

I also wonder why he is pushing the riba at this point if it does not look like it will help. Is this the trial and error sort of treatment potocol.  Any studies that indicate better success with more riba? I did ask about upping the pegasus and they said no.  I am on 180 mg.  

What a ride this is!  Thanks for your help.

[jmjm530]

I agree we sometimes "get fixated on SVR" when SVR is only one part of the equation. As mentioned, liver histology is at least equally important, but not to be forgotten is the rest of one's health, including the health of the immune system and what the treatment drugs can potentially due to it. So, the decisions are complex, sometimes arguing for extending in lieu of SVR for a chance at better histology and sometimes arguing for not treating (or cutting treatment short) because liver histology may not warrant exposure to the treatment drugs. Personal, complex and sticky issues that good minds can differ on.

-- Jim

[jmjm530]

Ocean,

Got lost in the Dr. C thing and didn't address your concern about the riba -- I  think at this point raising the riba is an excellent idea, either by itself or in conjunction with an increase in the Peg. Should things not work out by week 24, or should you not like the diminished odds of continuing on (something to talk to your doc about), you might ask your doctor about the new phase of the Vertex trials that are now accepting non-responders. I imagine a lot would depend on how much liver damage you have and therefore how much you are willing to gamble.

All the best,

[niceguy2007]

thats what i was gonna say too... switch to peg intron.  

peg intron has a different mode of action.  u might also want to try increased dosages of peg intron...higher than normal dosage that is. but of course discuss thsi with your doctor first.

[miked]

Good dialogue, thanks.

Ocean...I wish you the best.  Please post your decision.

Mike

[Cindy10]

I agree with Rev, just talked to the doctor today about this.
My husband is starting tx next week and he has early cirrhosis.
Doc says even if he didnt clear the virus the improvement to the liver was a serious benefit. Don't feel at all like this is a waste, you are helping your liver right now.

Best wishes to you.

[Rastiss]

I'm a 1A, but I had a good response for the fist 12 weeks then made no progress on VL for the next 12 weeks.  My doctor put me on a double dose of pegasys for 12 weeks and this Friday will be #12. The SX were a little worse than the regular dose for the first 9 weeks but haven't been bad at all for the last 2.  I'll get another PCR next week so I can't tell you how well it worked yet.  

The biggest problem was with my insurance company. At $450+ per shot, they definitely didn't want to approve increased doses, though they used every other excuse in the book. It took 8 weeks and about 200 hours on the phone but they finally agreed.  

If your Dr. goes this route, get the insurance company on board first.  You don't want to go on a higher dose for a few weeks then get your IFN supply interrupted by accountants masquerading as health care professionals.

[HCA]

Don't think upping the riba is citical,or would make the difference.I would ask the doctor to allow you to switch to peg-intron for a couple of weeks.It hits harder (has shorter half-life) and could get you UND..
I found peg-intron reduced my viral load far more profoundly than pegasyss.I am 1a/1b.
You are a very slow responder and I sympathise with your concerns.
Of course whether your doctor will be interested in the opinion of an ameteur like me spouting off on an internet forum is another matter.
Good Luck

[BThompson4]

You might see if your doctor will increase your pegasys dose.  Your dose might not be strong enough to get you undetectable by week 24.  I say this because I was close to your 16 week level at week 10 (1460 iu/ml), but did not clear until week 22, being tested every two weeks between week 10 and 22.  My doctor was not concerned with my slow pace; it turns out he had been planning for me to go 72 weeks, in which case I would be doing 50 weeks of treatment after getting to undetectable.  My stats include geno 1a, 150 mcg peg-intron, 1200 daily riba, age 51,post liver transplant, hgb always about 11.5.

Increasing riba probably would not hurt you physically, but I don't know if it would give you enough of a boost to get you to UND by week 24.  If you clear by week 24, you should probably go 72 weeks.  Not a fun prospect, but clearing around week 24 and only going 48 weeks total would not give you good odds, probably less than 15 percent, to obtain svr.  The extended treatment might also help your liver histology, and with your cirrhosis, you could use some improvement.