Saw The Doc - Have Some Answers

[FlGuy]

Went to see doc#3, one of those

[FlGuy]

So my last question to the doc was 'settle a discussion, who is the top hepatologist?". Without hesitation, he said 'for those involved in direct patient care you would have to have me on that list'. Then he rattled off a bunch of first names like Mitch, Nez, Eugene, Bob, Ira , John - names you would recognize from reading studies and abstracts. He made it sound so chummy - like he just had poker night with these guys. He went on to say that unfortunately, the growth of hcv is making a lot of experts and there are now a lot of top hepatologists. He was being diplomatic but had a big opinion of himself and his boss, Snook's doc.  (He did not include my tx doc on his list - no surprise there)
One thing he said was very interesting.  His gang is involved in a a lot of trials for hcv, hbv, coinfections with hiv, rescue drugs, protease and polymerase inhibitors - the whole list. When they get ready to recruit for a study they don't check their files for past patients and send out mass, or targeted mailing, they recruit for the population that is in front of them. If similar at other investigation sites it tells me that if you are interested in a current or upcoming trials the patients need to be active and search out what might be available.  Don't expect them to come looking for you. Be active, be aggressive.  In that respect, the out of pocket cost to me for this appt was well worth it.  If I want to pursue, say a vx, trial - I am now known, I've waved my arms.
The VX trials are being headed by Dr. John McHutchison (Duke). I'd suggest that folks interested in trials (PI's or others) do some sleuthing in clinicaltrials.gov, find some names and phone numbers at a usual investigation sites near you and start working the phones or get in front of someone's face.

[Paris47]

If I understand my stats
I was undetected at month 4 or month 5..
still confuses, wish I liked my dr more

[tulsatime]

yep, go ole tulsa oklahoma. They seem to be behind as far as treatment goes. Will just have to educate my dr myself I guess. I have already printed out where they have approved Pegasys for cirrhosis he didn't even know that one. And I think that was in 2002.   Have a great day. Can't wait for your 3 month post test, will be watching for it. best of luck, Debi

[tulsatime]

the above post was for you, Guess I need more coffee...

[cuteus]

did I miss anything about how far into tx are you?  clearing at wk 4 is a good indicator that you are taking enough meds for your wt.   The studies that call for shorter tx for twos and threes used wt based riba, not a standard dose. But It might not matter in your case, You have hardly any damage, and you cleared early, I think the goof cleared at wk 4, but was taking wt based riba. He also had more damage but it looks like SVR is still his.  
My gut tells me you have a real GOOD shot at SVR with the standard tx, if no dose reductions.  Of course, there is always someone who relapses, even with the best odds in their favor.  There is some blood marker that tells researchers if the correct change has taken place in the serum to get the SVR, but I am not sure if it is readily available.  How sensitive was the PCR? Whole blood testing is more accurate in determining viral clearance.  Maybe you can coerced that out of her as a condition for extending or not?

[Kalio1]

If I was you I'd get started see if you can get him to up riba to 1200 a day, let him know you want to "go long" due to your cirrhosis and have HIM study up on it! The deal with cirrhotics seems to be to up riba and extend, many say go 72 weeks but take what you can get. He's the doctor for cripes sakes he can do some research! It does sound like he is willing and wants to help you, you can bring him info too and work with him to get him onboard so you an clear this evil virus. His pretty comment was so out of line I'd like to slap him one BUT he is what you have to work with so work it kiddo! Get him to LISTEN to you and help you get well. He is a doc he ca do some cosuting and investigating if he isnt very familiar with Hep C. He should watch your bloodwork but every two week appts is a bit excessive and costly but maybe he is just saying that beause he is nervous and not used to treating Hep C and is being cautious, most go once a month or once every 6 weeks. Te him in your support group most patients see the doc one a month or even one every few months unless there is a problem, maybe that will help. Keep a close eye on those blood tests every month. Get him to do a PCR at the 4 week mark if at a possible so you can know what it says,if you are UND then your chances go UP to SVR. There isnt much about this whole thing that directly applies to us 2 and 3's ( the easy genos, yeah right) I used geno 1 info and that helps, docs do want their patients well so hopefully he will go a bit off label for you. For cirrhotics the plan seems to be up dosages and go longer actually the recommended length by a lot of experts is 72 weeks. Have him study up and famiiarize himself with the latest news and look at the HALT C and other studies. I think Cuteus has some good extend/up dosage info, I have it somewhere (Lord knows where)but I will try to hunt it down. Today is day after shot day for me so not my best day. When is your next appt? You have the meds covered by the drug co, right? So all you need to do is get this doctor onboard with the treating protocol you want and you are good to go. Start with the 6 on this, then in 6 months he can write another scrip for the next 6 months and so on. You CAN do this! You can get him behind your way of thinking! Arm yourself with info and the next appt. hopefully you will be all set.